Ollie's Tale

New Blog Name?

2012-01-01T01:12:00.002-05:00

Hi Everyone - I'm not sure how many regular readers we have due to lack of updates, but we have been really thinking about moving posts regarding the twins and our crazy life revolving around them to a new blog. Ollie's Tale will forever remain as a source of info on SMA and the suck thereof, of Ollie's life and related, but it really seems like the twins and our current life should have it's own existence...any ideas?

Thanks for all the support of the years!

Holy %#*! where did the time go?

2011-12-19T17:17:00.001-05:00

I decided to see when the last post was on the blog and realized it was September 1st.

It was about bodily functions.

When that post was made:

Penny wasn't walking.
Isaak wasn't walking.
Real words had not yet been spoken (Penny has about a dozen, Isaak maybe 8).

Now we have running, pushing, shoving, taking, giving, smacking. All the craziness of toddlerhood.

Wow is it exhausting.These guys are blast and a challenge

I know we've said it before, but we really do intend to start writing again. If nothing else, a blog is like a public diary of events that you have recorded for yourself, not just for the world at large.

Oh yeah, we have cute pictures. Lots and lots of them. Videos too. If you are on Facebook you probably have seen some of them, if not, I'm going to get some up over the holidays (whether that holiday is Christmas or Independence Day, I'm not yet sure)

.

Epic Vomitus

2011-09-01T00:14:00.000-04:00

Penny puked tonight.

Well, more realistically, Penny recreated the Exxon Valdez spill with the living room carpet acting as the ocean, partially digested milk substituting for crude oil, daddy acting as an oil covered baby seal and mommy as the guy in the yellow suit cleaning it all up. Chunks of meatballs and green beans played the role of tar balls just in case we maybe wanted to pretend it was the BP Gulf spill.

30 minutes later and Penny has new clothes. Daddy has new clothes. Mommy has new clothes and the carpet is now very, very clean in 3 locations. The boppy is still on life support.

Penny hasn't spit up much in her young life. Really, maybe a couple of dozen times in 16 months. Contrast this with little Isaak. I'd wager his count is closer to 2000. (He was 3 for 4 today. Struck out in the bottom of the ninth when his bunt rolled short and was picked up by the catcher).

That being said, I think the sum volume of ejecta might be about equal. See, Isaak just casually - vrpps. Some spit-up comes out, we wipe it off. Once in a while an immediate outfit change is needed...

Isaak is Old Faithful. Not the most dramatic of events, but a regular and known quantity.

Penny pukes like a food-poisoned Orca...*

And with that, we are back on the air.

*Disclaimer - I have no idea how a food-poisoned Orca pukes. I can only imagine it's gruesome. Probably involves baby seals.

Update: Now I feel kind of bad. Every time Penny has upchucked before has been gag reflex related. This appears to actually be illness. Bekka is off to the pediatricians office right now. She vomited 2 more times and has diarrhea and hasn't had a wet diaper since last night.

We had a great night. Or not.

Update 2: Shot of Zofran at the doc. Seems to be keeping stuff down now but the back-end isn't happy yet. Also had a good wet diaper, so it appears dehydration has been averted.

A Reflection from Getty's Mother

2011-08-05T00:06:00.001-04:00

When Ollie was diagnosed with SMA, our world changed forever.

Strike that.

When Ollie was born, our world changed forever. His short life changed many worlds, not just his mama's and his daddy's. I think Neil is right about Ollie being too much for one vessel.

On Oliver's birthday, I want to share with you a post from a mother who's world was changed when her daughter, Getty, was born. Kate recently wrote about the one year anniversary of their "d-day" or diagnosis day. What she wrote really resonated with me and I hope it will with you, too.

Happy Birthday, lil' dude! We love you!

A Reflection From A Mother

30 Jul 2011

From Kate:

I have had an entire year to think about this day, the anniversary of Getty’s diagnosis.

I remember what we were doing that day before her 4 month check-up at noon. I remember what I was wearing, I remember packing the small diaper bag, I remember the weather outside, I remember everything.
I remember the pediatrician appointment being rather routine. I remember the nice discussion we were having with our doctor about Getty. I can’t stress how routine it was. And in a moment right before we left, the doctor made one more quick check on how Getty was bearing weight on her legs and the entire game changed. She did another test with her reflexes and then another to look into her mouth to see the movement of her tongue, all the while Mark and I just sat back as parents not thinking anything was wrong. Then for some reason I started to look at our doctors facial expression. She started to have this really intense look on her face and then it seemed to turn to concern. In a way I was trying to ignore her because in my mind nothing could be wrong with Getty. We hadn’t noticed anything wrong so how could she find something we were not already privy to.

She finished her exam and sat back down in her chair. She paused and then told us that she was concerned. “I don’t want to tell you what I think it is, because you both will go home and google it. I hope I am totally wrong and you get mad at me later for adding such stress to the situation, but I am going to make an appointment with a neurologist to have Getty seen today.”

As I write this, those emotions just come back in a wave of terrifying proportions. We left the room, Getty snug in her car seat and we made the trip home only to wait for the next appointment. I laid Getty down in our bed and we just snuggled together. I could not restrain myself, I cried and cried and cried. I didn’t know what I was crying about really, just the notion that something wasn’t right was terrifying me. Getty looked like a normal 4 month old child. What on earth could it be? I stopped thinking and concentrated on her sweet little face and I just started talking to her. I started to bargain with her, like she in some way had the power to change the outcome of this situation. I told her that she couldn’t leave me. I begged her not to leave me. Her sweet blue eyes just looked back at me with such comfort. I held her for hours until it was time to go to the next appointment. 4 o’ clock came and we were sitting in another doctor room. The neurologist came in and did similar tests as our pediatrician had done. He sat back in his chair as our pediatrician had done and then he told us what he thought. Before he spoke though I can only imagine what was going on in his head. How do you phrase a sentence like this so a family understands but in the same breath is manageable to digest? He did pause for some time and I remember thinking to myself that he doesn’t think we could handle that maybe Getty won’t be able to walk? “Does he think we are shallow enough to not handle news like that, bring it doc!” I was already getting defensive and I had no idea what he was going to say.

“Getty has Spinal Muscular Atrophy. It is a genetic progressive disease that targets the muscles. I believe she has type I which means it is the most aggressive.” The room was silent. No crying, no screaming, no nothing, we were in complete shock. The only thing that I was able to muster up was, “how long do we have?” His quiet voice responded with, “1-2 years on average.” More staring and more silence continued, all the while Getty was laying on the bed gurgling sweet coos to us.

He offered the same consolation, “I hope I am wrong, and I hope you call me later and yell at me for being so wrong.”

I was never able to make that call because he was right, Getty had SMA and Mark and I had given it to her because we were carriers. We unknowingly gave Getty a terminal disease. We gave Getty a disease that will continue to weaken her body. We gave her a disease that will compromise her swallowing. We gave Getty a disease that will compromise her breathing. We gave Getty a disease that currently has no viable treatment or cure. We did this!

So now what on earth does a family do? How on earth does one digest this kind of news? How on earth do you move on with life?

Well I guess the answer is, you just do and that is what we did. You get through one day, the next might not be so great, but the next day might.

Our lives will never be the same since July 30th, 2010.

I wrote soon after her diagnosis a phrase that I like to reflect on from time to time. “What can I say, life as we know it has changed forever. For better or for worse, we will stand together. I am honored to be mommy to the best little girl in the world. Miss Getty we love you!”

This helps me get through some very difficult days. But that is what we are doing, standing together through good and bad. No day is similar to another, there is no security that tomorrow will be here, so we just live everyday like it is seriously our last. It is although, no longer doom and gloom. In fact I would argue that I have never lived life with such fulfillment as I do now as a mother and as a human being. I would have obviously wanted a different outcome, but now I wonder if that would have been possible without one? I am still searching internally with that answer, perhaps I will never know.

What I know for sure is that the love I have for Getty is a love I never thought I was capable of. She makes my soul whole. She has the ability to comfort with the most gentle coos and touches. She is so thoughtful and such a strong-willed little girl. I am so in awe of her power and zest for life. How can such a little being be so wise and teach her parents such life lessons at such a young age? I thank her every day for choosing me as her mommy. I am so lucky.

I hope for those reading this post take in to account a couple of things. SMA does not care who you are. It doesn’t care if you decorated your nursery with cute bedding and beautiful furniture. It doesn’t care if you had dreams of your child one day following in your footsteps and kicking around the soccer ball. It doesn’t care if you were subconsciously dreaming about future milestones; high school, college, wedding. All it does is take. 1 in 40 are carriers. That is over 10 million people alone in the United Sates. SMA can certainly be anyone’s reality. A simple carrier blood test can give you the knowledge you need to make the best decision possible for your family. It is seriously as simple as a blood test. Most doctors don’t even know what SMA is so you can’t assume they will offer this test to you, you need to ask, even if there is no family history. There usually never is.

Having said that I believe it is a choice to allow SMA to defeat you. I am in constant battle with our SMA monster that lives in our home. He is here and lives among us, but he does NOT define Getty in any way shape or form. Getty is, Getty. She is a robust little lady who loves life. Perhaps it is not the path I would have wanted for Getty, but it is what is, and we fight everyday for her. We believe that there is hope for her life and for other children with SMA. You have to hope. We believe we will see a treatment and/or cure in her lifetime. We believe that SMA will become more mainstream and lose its “orphan disease” title. There is nothing “orphan” about the #1 genetic killer of young children. Whomever designated SMA with that title certainly got their facts wrong and has done a huge disservice to this disease. Orphan, to me, implies insignificant and there is nothing insignificant about SMA.

On the eve of National SMA Awareness Month, I want to thank everyone that has helped spread the word about SMA. Whether you have received a Tell 5! package or you have learned from SMA by reading our blog or other great SMA non-profits and families around the US, I think it would be safe to say that we all thank you.

No family should EVER be given the diagnosis of SMA. No family should be given the dire statistics of 1-2 years of life expectancy. No child should have to have their respiratory compromised due to a degeneration of muscles. We need to keep fighting for awareness and we need to keep fighting for a cure. Getty and her friends deserve nothing less. That is why we fight so hard. I want to see Getty attend high school, I want her to graduate from college, I want her to get married, I want her to have a full life and an extended one full of experiences. Getty deserves that.

Getty said “dada” the other day and Mark and I were over the moon. Will more words follow? We have no idea, but we are so thankful for “dada.”

Today

2011-08-03T16:09:00.000-04:00

Has been a pretty good day.

It's been a long time since we've posted about Ollie, but we've gotten emails and phone calls from all over and want to say thank you.

Thanks for loving our little guy and thanks for loving us. We were talking recently and remarked to each other how August 3's approach didn't seem as terrible as we thought it would. A lot of healing has gone on in the last year, much of that thanks to two little ones that are our main focus in life.

There is a sense of something "missing" today. Of course, we'd love for Oliver to be here with us and playing with his brother and sister. In a way, he is. All of the little reminders are there, from photos, to notes, to toys that Penny and Isaak love as much as he did.

He was a special little guy that touched a lot of people and we like to think he made us better parents, preparing us for double trouble. You don't want to project too much on a 1 year old child, but Penny seems to have captured much of Ollie's mischievousness and Isaak his pure joy in life. Perhaps there was too much Ollie to be contained in just one vessel.

Ollie's Tale may no longer have him as a main character, but it still goes on.

Today really isn't a sad day. It's a good one.

Miss you buddy!

Pictures, Pictures and more Pictures

2011-06-11T22:00:00.002-04:00

So here we are. 3 albums of pictures. A set of general April pictures, the huge birthday bash in Raleigh and the party in the mountains.

There are more. I haven't touched the general pics in May yet and I have TONS of video that I'd like to sort through.

In the meantime, please enjoy these snaps of your favorite internet twins. Thanks to Amanda Milloway for taking most of the pics in the Raleigh Birthday Album. She did a great job documenting their big day.

And thanks for checking in - we know that updates have gotten sporadic at best, but crazy work and busy twins keep us going non-stop. We hope to have more thoughts on just what that milestone meant to us, but that will have to wait a bit.

First a few cute pics during the month of April, highlighted by Bekka's father meeting the kids for the first time.

Penny and Isaak - April 2011

Next, the big (100+ in attendance) party in Raleigh for all those friends and acquaintances that have been such a huge help over the past few years with Oliver and these challenging little monkeys. Pay special attention to the gorgeous cake. (Thanks, Sarah! :)

Penny and Isaak's First Birthday Extravaganza

And finally, some of Ollie's and the twins' biggest fans at the celebration on Powder Horn Mountain. Thanks so much for loving our children. All 3 of them.

Penny and Isaak - First Birthday on the Mountain

That's it for now but you should see May and June soon and hopefully some video and new original blog content. Wouldn't that be great?

Babies' 1 year check up

2011-05-25T15:20:00.000-04:00

So it was actually more of a 1 year and 3 week check up. Whatever!

This will be a quick update for ya'll, but it is an update. =)

Penny has 4 teeth on the bottom, 1 up top and at least 2 more on the way. Isaak has his top 2 "fangs" and his 2 middle teeth on the bottom. He'll chew on a teether for 30 minutes straight and is drooling like he's rabid. My best guess is at least 3 or 4 more are on their way.

Isaak loves puffs and Cheerios. Loves them so much that he eats them hand over fist...literally! As soon as he puts the o's from his right hand in his mouth, his left hand is following with the next bunch.

Penny started feeding herself puffs and Cheerios about a week or so ago. She liked eating them but preferred for you to feed them to her. Can you say "diva"? We've actually coined the term "P.S.T." for Penny. It stands for Penny Standard Time and it means that she does things at her pace and when she wants to do them. Thus far, this has included rolling over, self-feeding, and, ahem, bed time.

Neither of them is crawling yet...but it's coming. They both try to get up on their hands and knees. Isaak's not too worried about it all since he can roll. And roll and roll and roll...right under the couch! It's his favorite place to hide. Penny's great at sitting up unaided. Again, Isaak's not too worried. His sister may sit up and swipe his toy from him. But he'll roll past her and snag that same toy back from her on his way. Can I just say it is so entertaining to watch these two little people?

Anyhow...back to the stats from today's visit to the pediatrician. The percentages I've listed are based on their actual age (1 year) not their adjusted age (9.5 months).

Penny:
weight - 24 lbs, 2.5 ounces - 85%
length - 29 inches - 40%
head circumference - 47 cm - 90%

Isaak:
weight - 23 lbs, 7.5 ounces - 52%
length - 29.5 inches - 28%
head circumference - 48 cm - 85-90%

The pediatrician was, obviously, very happy.

And so are we!

The Big Day - 1 Year Later

2011-04-30T06:35:00.010-04:00

So this is it. The end of one short saga. The beginning of an odyssey.

At 6:35am on April 30, 2010, I made this short and to the point entry:
http://olliestale.blogspot.com/2010/04/bekka-back-for-c-section.html

Less than 2 hours later, it was "over." And it was just starting.
http://olliestale.blogspot.com/2010/04/babies-are-in-nicu-and-bekka-in.html

That evening, we actually had time to think and compose a longer entry. I'm not sure how I managed to make it sound so "together" and functional. I think my engineering brain just turned on at some point during that day and pushed me into clinical mode. That allowed me to step away from the abject terror lurking deep my id.

http://olliestale.blogspot.com/2010/04/babies-are-in-nicu-and-bekka-in.html

We can't give enough credit to our "hosts" at WakeMed. Prior to, and just after the delivery, their calm professionalism kept both of us focused and while frightened, also hopeful. We aren't exactly easily rattled people, but this wasn't exactly a normal situation.

Perhaps you might want to go back and revisit photos of that first week just to get an idea of what we were dealing with. When you can see more medical equipment than the skin of the little person in the incubator, it doesn't create a particular sense of comfort. Also it doesn't help that they looked a bit (or a lot) like ET when they were born.

As tense as that morning was, to my dying days I will remember Isaak opening his eyes at the sound of my voice in the post-delivery room. He was lying there with an oxygen tube in place and in a plastic sandwich baggie for warmth (not really, but that was what it looked like). And at the first sound of my voice, he cracked his eyes.

Amazing.

We owe a lot to so many people. Doctors, nurses, family, friends....

Thank you all for a brilliant first year.

The Contraction Countdown

2011-04-29T11:54:00.002-04:00

We didn't know it, but the afternoon of April 29, 2010 saw contractions beginning that heralded the arrival of our children. We'd seen this show before as can be noted in the first post:

http://olliestale.blogspot.com/2010/04/contractions.html

A few hours later, Bekka was still experiencing contractions and the growing concern is evident in my post. I sounded calm, but I think we both knew that this was going to be "it".

http://olliestale.blogspot.com/2010/04/contractions-update.html

Sometimes I think life throws things at our family more like Phil Niekro. A nasty, wobbly knuckleball that approaches the plate with agonizing slowness. You can't hit the thing because of it's random motion but you have to wait and wait for it to get there. Often I think the more predictable Nolan Ryan fastball would be far, far preferable. It may come at you at 100mph, but at least it's over with...

A Year Ago Today...

2011-04-28T21:56:00.001-04:00

A bit late on the post today thanks to a pre-6am start at work and traveling all day.

Last year at this time, we actually thought things were going pretty well. This post classifies the day as boring...wish that had lasted! Tomorrow would be when the excitement began - slowly at first, but then building.

http://olliestale.blogspot.com/2010/04/25-weeks-1-day-and-some-sweet-sweet.html

Today is the day that Ollie died. Not the date of course, but the relative time to his birthday - 2 days before. I've become increasingly anxious as we have approached this 1st birthday milestone with these little tykes. Today I'm glad that I was very, very busy and did not have time to ponder. Oliver didn't get to see his first birthday and all the cool birthday favors we had for him...he didn't get to see anything else after that day.

Saturday will be wonderful and uplifting. It will also be bittersweet. I feel bad about that for these little guys.

We'll love them, and squeeze them and look for butterflies.

Last Year at this Time

2011-04-26T17:30:00.003-04:00

A year ago we were at WakeMed in Raleigh, cautiously hoping that we might make it a few more weeks before getting to meet our children. Alas, that was not to be and very shortly our epic saga of preemie parenting was about to begin. Over the next few days, leading up to the twin's first birthday (!?!?!?!?!) I will post links to the post from the same day last year.

It's a fascinating experience and I almost feel disembodied reading my own words. The stories over the last year have been harrowing, joyful, volatile, cute - you name it. They (thankfully) don't carry the same emotional land mine triggers that re-reading Ollie's story so often reveals, but the memories are intense.

Last year on this date, we actually had a post from the lady herself. Without further ado, here's a rare update from Bekka (she was kinda busy at the time - lying down - but busy):

http://olliestale.blogspot.com/2010/04/quick-updatefrom-bekka.html

Feel free to browse back to the beginning of April for more of the insanity.

If you are reading this, it is way too early in the morning...

2011-04-14T06:00:00.005-04:00

...and Isaak is on his way to get his stoma closed. Finally.

His surgery is scheduled for ~7am and Bekka and Isaak are supposed to be at UNC by 6:30. Our wonderful, fantastic, incredible, (for)giving friend Cathy is baby sitting Penny, as I have a work engagement. Unbeknownst to Cathy until this afternoon, I have to be at work at 7am. Which means she has to be here by 6:30. Normally, 8am suffices, but not today.

Thank you! Your diet Cokes have chilled overnight in the fridge.

As to the actual procedure, we are ecstatic this is finally happening. As excited as we were by the incredible symbol of Isaak's improving health having his g-tube removal was - we would rather that sucker had stayed in. 2 1/2 weeks of constant gauze/maxi/tape/duoderm to no apparent effect on his stoma site has been frustrating and worrisome. A couple of quick stitches tomorrow should make this a fading memory and will be one more step towards a "normal" life for a special little boy and his worn-out parents.

Found It!

2011-04-12T20:09:00.000-04:00

Mommy happened to catch a glint on the kitchen floor. An area that had been gone over in great detail several times today. Our only thought is that it popped out somewhere, somehow or maybe had gotten stuck on his high chair this morning.

We have no idea if it has been out in the open air long enough to be unusable. Bekka cleaned it and we are going to let it sit in solution overnight.

Anyone know if they make RFID tags small enough to fit on a contact? This could be a challenging issue.

Isaak Had a Contact Lens

2011-04-12T18:00:00.000-04:00

Yes. Had.

He's lost it already.

Where?

We don't know. It's even possible the thing is still in his eye and we just can't find it.

Why does he have one, you ask?

His left eye is now aphakic, that is, missing the lens. You may recall it was removed during the retina surgery in December 2010. The only way to reasonably correct aphakia is via an intraocular lens replacement or by wearing a specially designed contact. Isaak is too young for a new lens due to his still growing eye and an increased risk of scar tissue. So they gave him an extended wear (7 day) contact.

And he lost it.

Before 24 hours were even up.

He had it when he went to bed, but it was gone this morning. We guess he just rubbed his eye randomly and popped it out. We looked in the bed, in the blankets, in diapers and on the floor all around. Did he eat it? Did he throw it out of the crib somehow? Or, it it really still in the eye somewhere? His eye isn't tearing and he doesn't seem to be rubbing it a lot but does seem kind of cranky and clingy today, according to Mom.

Did I mention these things cost $260 a pop. For ONE contact lens.

Clearly he will need to be trained.

Outside of the saga of the contact lens, his followup yesterday was very good. The main reason for his visit was to make sure the pressure was acceptable in the left eye after being off Azopt for 36 hours. It was in excess of 40 just 3 weeks ago. Yesterday, it was 9 (under 20 is normal).

Penny also had a 6 month checkup and here eyes look fantastic. No need for an exam under anesthesia for her. The only issue she has to track is very very mild veiling at the outer edges of her retinas. Leftover artifacts from the RoP. She'll be seen in a year. Way to go little girl.

A Note on Videos

2011-04-11T12:30:00.003-04:00

~~So apparently PicasaWeb is bad for videos.~~

~~Very bad.~~

See update for details.

I didn't verify the green bean video upload last night, and checking it out today, I've found that the audio is very choppy. Apparently this is a known issue when uploading higher quality video.

A search of the Google forums suggests that the solution is YouTube (way to go Google!), and I'm going to do what anyone with really cute twins would do and upload all the videos there. This makes sense in a lot of ways as YouTube is designed to handle big HD files like I'm producing and is also much much more easily accessible from mobile devices. We've wanted to show videos several times on phones and haven't been able to get Picasa to work so this will take care of that.

I've just started the upload process of the 4 videos currently on the website and hope it will finish overnight. Once they are up, you can access them via the channel I've set up at the following URL:

http://www.youtube.com/user/sooner1997

We will also create a link specifically to go to video from the front-page of the blog.

All the photos will still live at the PicasaWeb site as it is by far the best I've used for photo purposes. So follow the above link sometime in the morning and see what is to be seen in video land. I've made the vids public for the moment, but we will see how that goes.

Thanks for your patience.

UPDATE:
Everything should be up and running on YouTube now. Some of you may have tried the green bean video this morning and discovered that it was still choppy. Turns out the issue wasn't really with PicasaWeb (as YouTube and PicasaWeb are both owned by Google and appear to use the same rendering engine) but with the way Google deals with the uploads of AVCHD files and certain settings in those files. Essentially, the file was being doubled in length and the audio was being chopped up to try to fit. Seems to be an issue with 60fps video. This issues has been going on for nearly two years and appears to be random. I changed formats and made a couple of other adjustments and all should be good now.

With this new info, I could probably still use PicasaWeb for the videos now that I have a handle on the issues, but I think the benefits of YouTube for accessibility are still there. Perhaps I will maintain both.

In fact, I just uploaded the new version of the video to PicasaWeb and it works great.

Don't forget that it's possible to subscribe to the blog, to the YouTube channel and to PicasaWeb so you will be notified of any updates or changes.

Penny and Isaak's Latest Feature Film

2011-04-10T14:47:00.003-04:00

As promised a couple of weeks ago, here is the film of Penny and Isaak partaking of green beans the second time. Sound is a must, but the facial expressions speak for themselves.

From The Penny and Isaak Video Show

We also have 162 (!) photos in the March 2011 folder. Yes, that's a lot, but it cataloged important events like the first trip to Nana and Papaw's. They also seemed to have been inordinately cute last month. What could we do but snap hundreds of pictures ;)

Those photos can be found here:

Penny and Isaak - March 2011

Enjoy!

Isaak Eyes and Frustrating G-Tube Stomas

2011-04-09T17:00:00.002-04:00

Little guy went to Duke Eye Center on Friday for an exam under anesthesia (EUA), and the news was better than expected. I'm not sure we've been able to utter that phrase in relation to Isaak's vision in quite awhile. We were very worried about the possiblity of glaucoma surgery due to elevated eye pressure at his last checkup. After 3 weeks of drops, his pressures were well into the normal range, so no surgery was necessary. We keep him off the drops this weekend, and they will re-measure on Monday to see if he needs them or not.

In other good news, the retinal fold is beginning to flatten and the macula is actually moving back towards the appropriate location. Now, this doesn't mean that lost vision will be returning, but it does mean that the danger of additional vision loss has abated (somewhat, for now). Scar tissue is still present, but doesn't appear to be expanding. This is important as the scarring is what caused much of the tension on the retina and created the fold.

There are small fatty deposits on the retina, called exudates, that are likely a result of the massive hemorrhage Isaak experienced last July and continued bleeding afterward. This hemorrhage was the proximal cause of many of his vision complications and the advanced RoP. Nothing that isn't experimental and potentially damaging can be done about them, so we'll just be hoping they don't grow any more.

He goes in Monday for a followup to the exam and to be fitted for his contact lens. If you recall, the surgeons were forced to remove the lens from his left eye to carry out the retina surgery. This contact will help the eye regain some it's ability to focus.

His right still looks perfect. Thank goodness for small gifts.

Penny (yes, she is still around ;) Also has a date with Duke on Monday. It's been a few months since she had her last eye exam, and we want to make sure nothing untoward has occurred since then. If her eyes still look great, she'll just be on a yearly exam schedule.

Isaak will have another EUA in late summer and may very well have one annually for a while.

In news of a more frustrating nature, Isaak's g-tube site has remained stubbornly open. We've been dealing with a leaking, hissing tummy for two weeks now. For some reason, UNC did not schedule an OR date in case the stoma did not close and so it will be Thursday before Isaak finally has the procedure to do so. 3-4 outfit changes per day plus innumerable quantities of pads, gauze, tape and protectant ointment have been consumed and quite a bit more will be prior to Thursday.

We only hope there hasn't been tissue damage around the site from stomach contents leaking out.

A Year ago Today...

2011-04-09T14:28:00.000-04:00

Bekka wound up at the WakeMed Cary in the middle of the night while I was delayed getting back home from a business trip.

A few days later I put this up as we were in the 3 week odyssey leading up to birth of the twins.

http://olliestale.blogspot.com/2010/04/twins-hospitals-and-amniotic-sacs.html

It is unbelievable that a year has passed. We have two (mostly) healthy babies and no spare time in our lives, but one year ago we were terrified of losing them.

April 9, 2011 is a much better day than April 9, 2010.

Thanks for the love and support!

Ding-Dong, the G-Tube's Gone!

2011-03-31T23:22:00.000-04:00

Yes. Yes. You aren't seeing things - this *is* the third post in March.

Oh, you meant the headline? (Of course you did!)

This was a potentially life-altering week for Isaak. On Monday, Bekka took him to UNC for what we thought was going to be a pre-op appointment with the surgeon to schedule removal of the g-tube and closure of the stoma. Previously, there was evidence that the gastric mucosa (stomach lining, basically) was growing up and out of the stoma site. On this visit, they decided it wasn't and went ahead and pulled the tube!

This was/is very exciting.

It's also very messy.

You see, the closure process basically involves letting the stoma close on its own, much like an earring hole. During this process, Isaak still has to eat and drink...and this has a disturbingly frequent tendency to result in a mess. Daddy came up with a method to help control the mess - maxi pads taped to his stomach - but it's by no means 100% effective. We still get milk geysers when changing the dressing once in awhile...

The stoma site is slowly closing and already looks much better. It is supposed to close in 2-3 weeks (!?!). Sometimes we think doctors don't quite know what we have to deal with at home...

In other news, we had a visit at Duke Eye Center last week. This visit was not nearly as exciting as the UNC visit because the news was not all good. Isaak's right eye still looks great, but the left has developed new issues. There is a bit of new bleeding and also some sort of lipid deposits around the macula. To add to the concern, the pressure is elevated in the eye whereas it had previously been fine. Sooooo....we have another appointment at Duke on April 11 to reevaluate the pressure levels and sometime soon after Isaak will have yet another exam under anesthesia. It's possible (possibly even likely) that Isaak will require further surgical intervention in the eye. We certainly hope not, but we'll go with it day by day.

In the meantime, this is the first time we've had a cordless little boy since Ollie was 7 months old. This is significant for us on so many levels. It really hasn't fully sunk in yet and probably won't until we no longer have to have bandages/maxi-pads on his tummy.

There is so much more to discuss regarding their development and new-found ability to say dadadadadadadadadee, but that will have to wait for another post - perhaps the post that will have the epic video of attempted green bean feeding. (Hint: it did not go well)

I can leave you with a few numbers this evening: Both kids are basically 28 inches long. Penny weighs a tick over 21lbs and Isaak a little over 20. Such a long, long way from 1lb 7 and 1lb 11 and under a foot long.

What is amazing is how deep they both are into the "normal" baby growth curve. Penny is sitting right at the 50th percentile while Isaak is around the 25th. If you adjust for their prematurity, Penny is over 90% and Isaak over 50. Amazing little guys.

Picture Time! - Late Winter 2011 Collection

2011-03-06T10:22:00.002-05:00

Here it is. What everyone has been waiting for. Hundreds of pictures of your favorite cuties!

Just click on Ollie or the pic below and be whisked away to the gallery.

Update: New video here. (Man have I got to get some video editing software. Lots of good stuff of the kiddles to chunk together, but everything free is terrible).

In other news, since I'm sure everyone will be wondering just how big they are:

Isaak: 18lbs 12oz and 27"
Penny: 19lbs 12oz and 27.25".

Amazing.

Pretty soon they will be outgrowing their infant car seats!

Have a great Sunday!


Let's roll, Mama!

All Better Now (Mostly)

2011-03-03T09:30:00.000-05:00

We've received several inquiries as to everyone's health and I'm happy to report we are all significantly improved (and none too soon!).

Penny also wound up on antibiotics, but it appeared to be the right move as she responded very quickly and is probably the healthiest of us all. Isaak and I still have residual congestion (he was really hit hard by this thing). I'm the last to get better, and now that I'm through the dizziness that apparently accompanies the end of the illness, I feel much much better. Bekka got better a couple of days before me, also experiencing dizzy spells. I can only imagine what went through baby brains if they had the same experience. It might explain some of the additional yakking.

We are so thankful that Penny is feeling better. Isaak became ill and basically just wanted to sleep a lot. He was clingy and miserable, but otherwise pretty normally behaved. PenPen on the other hand - she didn't want to be alone - ever - including nighttime. She spent all or part of 5 nights in bed with us. Any attempt to lay her down in her own bed resulted in wailing a bobcat would've been proud of.

The last 3 nights have been comparative bliss as both have slept through and woken up to be happy babies again ;)

I haven't had congestion-induced baby vomit in my pants pocket for 5 days now. You know that has to be an improvement ;)

In Sickness And In Health

2011-02-24T16:09:00.001-05:00

In every marriage vow I've heard there seems to be some variation of this line. It certainly makes sense: You take care of me and I will take care of you.

What you might not be thinking about at that particular moment in time is that the vow includes kids. Snot-dripping, mouth uncovered, licking everything in a squirm-able radius kids.

We don't know how Isaak got sick. We only know that he started it. "It" being a now two week long ordeal of coughing-congested-runny-nose-fever-for-which-they can't-take-a-thing-hyper-crud-during-which-no-one-gets-to-rest-illness.

Yesterday was the two week point for Isaak. We took him back to the pediatrician and because this holy terror has been going on so long they gave him antibiotics as it has probably transformed from virus to bacterial. Penny has a script on hold in case she heads down the same path.

The rest of us trail Isaak's trajectory by as little as 3 days (Penny) to as much as a week (Neil). It is not fun. So far, Isaak has been the only one projectile vomiting due to gagging.

What it feels like is the flu without the 103 degree fever. Maybe it *is* the flu and the flu-shot is doing it's thing to keep us all from getting worse. It all started coming to a head on Wednesday when it hit Bekka full-force and me almost as hard. Two sick kids and a sick mommy? Uh-uh. Not happening. So home I stayed and to the pediatrician we drug ourselves.

It was tough enough already, but in wee hours of Thursday morning, it got worse. Much worse.

Last night, Penny cried for 3 hours straight. Was this from 9PM to midnight? Uh. No. Poor little thing started at midnight and continued to three in the morning. She was hoarse. Her eyes were watering, she didn't want to eat. She didn't want to cuddle. She finally fell asleep after sitting up in a bright room looking around for 15 minutes. Don't ask me why this was calming to her, but there was zero interest in snuggling with her loving parents.

After finally snuffling her self out, she ate a 4 oz bottle, went to sleep...and promptly woke up 30 minutes later in full-on air raid siren mode. This would be 4am. Another 15 minutes and she went back to sleep and stayed that way until 10 this morning. Was it terrible gas? Was she just so unused to feeling this way she didn't know how to react? Did her 100 degree fever give her the ability to see the ghosts of the dead Indians upon whose graves our house must surely be built?

Elefino.

A little secret? It was also terrifying. She screamed like she had just been vaccinated, but for 3 hours instead of 3 minutes. Having seen our share of medical issues, we didn't panic, but the ER certainly crossed our minds. Neither child has ever done that and Bekka and I hope we don't see it again.

So far today, she's been clingy and miserable and still running a temp but no extended bouts of hollering practice. Isaak is still coughing and sneezing but the antibiotic and rest seem to be moving him along the right path and he's pretty chipper. Bekka has retreated into full-on turtle mode - she gets better only with mass quantities of sleep thanks to a terrible case of mono in high school. She woke up to eat lunch and feed the babies theirs.

As for me, Isaak woke up bright and sun-shiny at 9am (giving me about 4.5 hours of sleep) - and so a very sick daddy (but the least sick of the household at this point) took care of his very sick little kids and his sick little wife.

Phew. I sure I hope I can go to the office and get some rest tomorrow...

And then there was Poop....

2011-02-14T21:11:00.003-05:00

This evening, Daddy is innocently watching his favorite set of twins as mommy has decided the double coupons at K-Mart are just too good to pass up.

The evening is fine for a time. Penny is carefully inspecting each toy attached to her super seat, Isaak is playing with O-balls on the floor, and Daddy is watching HAL9000 take it to those pesky meatbags on Jeopardy.

Life is frolicking happiness for all.

The phone rings. It's Grandma! Daddy pauses the TV to talk to Grandma and to provide the latest update on the little ones, while at the same time trying to keep them entertained. Multi-tasking: It's what you do with twins.

After daddy hangs up, he notices the smell of something rotten in Denmark wafting gently on the breeze of the furnace blown air.

Let's check Baby #1: Success! (?) Isaak has something in his breeches!

Time to change the little fella! Other than it being his fourth poop of the day :-( all is well. It's a *good* poop - a poop like ricotta cheese with an extra little sumpin-sumpin. For Isaak, it's a win!

Daddy had noticed that Penny seemed a bit damp before he headed back to change Isaak, so he grabs a diaper and a wipe before heading to the front of the house,

Daddy gently places Isaak on the playmat and bends down to change Penny. Ok, let's unbutton your outfit a little sweetie ...ohgodohgodohgodohgod.... Foul on the play! 15 yard excessive poopage penalty: Something has breeched her breeches! Denmark has escaped it's borders and now seems to be heading into Norway!

Daddy grabs up mommy's little girl and springs for the nursery.

Penny has baked a sweet potato surprise! A LOT of sweet potato surprise. (more on the dining habits of the Mastin Twins later). It's about 3 inches up her back and squeezing out the sides...no use trying to salvage the changing pad now. I yam what I yam and it is what it is.

One sacrificial diaper later, Penny is something approximating clean. Daddy has managed to secure her befouled clothing away from his sweet princess and has a diaper loosely under and covering her. He takes the time to secure the previously soiled undergarments in a plastic baggie, lest they further contaminate the premises.

Dearest Penelope takes this brief moment to do something very un-lady like: She kicks her diaper open and relieves herself on it...and on the changing pad...and on herself.

In case you are counting - that was diaper #3.

Daddy laughs (and Penny laughs) and Daddy sighs (and Penny...well, laughs). Daddy reaches for a couple of tissues....ah crapola. There are no Kleenex in the box...So saying a little prayer to Peenemunde (the German God of all things damp), he grabs his naked little girl, runs for the closet and gets a box of tissue (coincidence it's a yellow box? I think not!). Miraculously, he makes it back to the bedroom with no further liquid damage.

A few moments later, we finally have success, no more dampness. No more poop. Only four diapers! Let the dancing commence!

Cue mommy walking in the door...

As I type this, Penny's outfit and changing pad are soaking in the bathroom sink with rather a lot of soap.

Penny is getting a bath. A Very. Thorough. Bath.

Daddy is having a well deserved adult beverage.

I never did get to see how Watson fared on Jeopardy this evening...wonder if he offered the humans a chill pill?

December 2010 Pictures are Here!

2011-01-26T10:00:00.001-05:00

I was finally able to find a few hours to download, sort, tag and upload pictures. This is no easy task when you have about 500 for a month. I think mommy may be snap happy (can you blame her). A special shout out to Amanda Milloway who took a bunch of the super cute closeups (those dated December 12). Not only does she love the babies, I think she liked our camera too. It's certainly some of the best work to come out of it.

Realizing that it is now January 26, this month's photos will be coming shortly, along with updated video. I'm afraid there will not be nearly as many shots, probably because there wasn't a huge holiday with dressed up babies to celebrate.

Penny and Isaak - December 2010

Goodbye Broviac and Hello 200th Post

2011-01-24T12:32:00.001-05:00

UPDATE: Broviac removal is complete. They didn't even have to cut the little guy. The surgeon was able to work the catheter out gradually. He'll be bandaged for a couple of days then home free. Conveniently, they also changed his g-tube for us while they were in there. That isn't a particularly painful thing to do, but can be uncomfortable.

Tomorrow is a big day for little Isaak. A very big day. As his blood work has continued improving, the docs were comfortable with scheduling Broviac removal. We don't have a time slot yet (please don't let it be 6am, please don't let it be 6am!), but at some point tomorrow, Isaak will be Broviac free for the first time since July 13, 2010. The little fella has progressed beyond the most optimistic expectations of his various doctors and this is the latest sign.

The procedure is pretty minor, but he will have to be sedated/put under for a brief period. Apparently, we were extra-careful taking care of the Broviac and the internal cuff that holds it in place is really embedded in tissue. It's supposed to be that way, but the surgeon told us that in a lot of cases the catheter will just slide out of the patient when it's time to remove it. I guess this means we are good parents/nurses...

To top off the joy associated with this event, we have started dramatically reducing his g-tube feeds. A few weeks ago they let us drop it to 20 hours, then to 16. And 2 weeks ago we received clearance to start dropping by 4 hours a week. Right now, he's only hooked up for 8 hours overnight. That will drop to 4 hours on Friday and (pending positive blood work) nothing next Friday!

If this happens I'm not sure exactly what Bekka and I will do. It will be the first time we've had a little boy not hooked up to tubes since Ollie was 7 months old. I expect there will be dancing and tears of joy. You can't even imagine...

Isaak only has a few blood test results that are out of range, including phosphorus and a couple of liver enzymes. He'll probably have to continue getting monthly or bi-monthly blood draws for a bit to make sure he is getting fully hydrated and not having kidney or liver issues (thank you TPN and preemie-ness). That was one nice thing about the Broviac - they could draw labs without having to stick him. We'll still trade (not sure what Isaak's opinion is on this yet). Much like with the Broviac, the g-tube will stay in place for a while to make sure he is doing well enough to go without.

In other areas, Isaak is doing fairly well. He is still lagging in gross-motor skill development and muscle strength but has made really good strides the last few weeks thanks to weekly physical and bi-weekly vision therapy. We work with him everyday to improve strength. We have been able to play with him more and more as he's spent less and less time hooked up to feeds. He appears to be responding well. Why is he lagging his sister? Other than being a male preemie (a huge strike), he was also unable to be handled and/or moved as much as Penny. Thanks to the tubes, we actually had to restrict his movement. Even though preemie developmental milestones are based on adjusted age, they frequently lag in development. By 2, they are usually caught up. While mommy is very confident, daddy waffles between extreme concern about Isaak's physical skills to very impressed with how he's doing on a given day. I'm afraid that Ollie left daddy overly sensitive to these things. Here's to more progress and less worry!

He has a follow-up at Duke Eye Center on Thursday (busy week). The vision therapist from the Governor Morehead Preschool has been quite happy with how he's responding. We'll see how the eye is physically doing this week and go from there. Externally, it looks to be healing well and he is even still tracking objects with both eyes. His left eye looks a bit odd with it's missing lens and huge pupil, but if the eye is functional at all, we are ecstatic parents.

Looking back over entries in the last months, it's clear that Penelope has received short shrift due to her "boring" lack of medical problems. Well, Penny is anything but boring. She is a mess. Her head is something like a radar dish as she constantly whips it around to absorb EVERY little detail of the world around her - especially when she's sleepy (which is also when she'll slap her leg to keep from falling asleep). She loves to play rocking horse with whomever is holding her (whether they are ready or not) and has been testing her lungs at maximum volume regularly for weeks. She also likes to raise both legs and slam them into the mattress or floormat.

Repeatedly.

For an hour.

The only weird thing is a persistent refusal to roll over. She appears to have the necessary strength and coordination and can roll to either side with ease, but just won't quite go on over. My theory is that one day she is just going to stand up, turn around and lie down on her belly rather than bother with rolling.

Oh yes, recent measurements on the two: Both were 25.5" long (a couple of weeks ago). Penny is now over 17 pounds and Isaak is over 16.5 pounds. These babies have come a long way from 1lb 7oz and 1lb 11oz.

Know that we haven't forgotten about photos or videos. The last few weeks have been inordinately busy with work, doctor appointments and family emergencies. Soon though, we promise!

----------------------------

This is the 200th entry on Ollie's Tale. A little over 2 years ago, Bekka posted this. Our first, painful entry in the too-short story that was to be Ollie's life. We look forward to many more posts that are less and less about medical news and more about the little (and big) joys in our life. Bekka and I have talked about creating a new blog more focused on the twins and preserving Ollie's Tale as an archive of his struggle and the struggles of his little brother and sister as they first entered the world. We haven't made a final decision yet, but will soon. Penny and Isaak deserve their own space, I think.

Yes - We ARE still kicking

2011-01-03T22:10:00.000-05:00

No, we haven't been ignoring the twins' adoring public.

Yes, we have a few quick updates!

It's really incredible how busy life is with these little guys. They take so much time and energy and we have to sneak in regular life events at the same time.

Isaak has been doing really well post eye surgery. The two week check-up indicated that his eye is not worsening, which is all we can ask right now. He has elevated pressure in the left eye and is getting drops for that and he'll be on steroid drops for another week or so.

He had another positive visit with the GI doc. His continuous feeds are no long 24 hours, but 16, meaning he has 8 hours a day connected to nothing! That was a fantastic Christmas present (one we got on 12/27, but close enough to count). You can believe we are taking maximum advantage.

Having children around as well as Nana and Papaw and Auntie Amanda and Uncle Philip made it a very special holiday. It could only have been better if Grandma and Grandpa could've made it too. Next year will be oh so much fun as they will be big enough to be tearing around the house (and tearing through the wrapping paper).

I promise we'll have some photos and video up soon. In the meantime I will leave you with this parental nugget: An LED maglite is a *great* distraction in a car with screaming babies at night. Maglite FTW!

Arrrrrrr, matey...or what the &?#! is on my eye...

2010-12-19T19:19:00.000-05:00

Isaak's surgery, besides being SIGNIFICANTLY more involved than we had hoped, went pretty well. This is little guy on Friday when he came home. He was grumpy and mostly very sleepy as the anesthesia worked it's way out of his system, but overall well behaved.

He went to the clinic for a followup yesterday morning to have the patch removed and make sure everything was stable. Below is a shot from the afternoon. Honestly, his eye looked much better than we expected. Up close, it looks pretty rough with substantial blood and you can see the gas bubble they injected (it looks like a bubble level for a tripod). You really can't tell that his lens is gone.

So for the next few days, we have to follow a strict regimen of 3 different eye drops (dilator, steroid and pressure) and antibiotic ointment. Some of them are applied up to 4 times a day. Fun? Not really. Though he does seem to be getting a bit better at tolerating the application.

Overnight, he gets to wear an eye patch to keep him from scratching at his eye. He's not a bad little patient at all. (Cute too).

Thursday is the follow up appointment at Duke and we'll see where we go from there.

Eye Surgery, Part 2

2010-12-17T13:21:00.000-05:00

UPDATE: Neil here - Isaak came through surgery fine and Bekka is with him in recovery. (I'm at home with Penny, long story).

So Isaak had about as much done as one could. It was a mess in his left eye. Blood vessels were dragging nerves around and growing in strange ways and there was quite a lot of scar tissue. Something had to be done or complete detachment was highly likely.

So what did they do?

Removed the lens (he will wear a contact lens from here forward)
Cut most of the scar and fibrous tissue pulling on his retina. They were not able to get to all of it, but were able to to get to most.
Placed a scleral buckle around the eye. This helps to relieve tension on the retina. It might be permanent but will be in place for years in any case. It will have to be periodically loosened to allow for growth.
Performed more laser surgery in his right eye. A couple of areas had started showing abnormal blood vessel growth. Unfortunately, RoP is a lifelong disease and we will have to stay on top of this. Overall his right eye is still doing really well.

Prognosis for the left eye? We have no idea right now. If these procedures have stopped the pulling on the retina, it will hopefully heal, stay attached and he will maintain peripheral vision.

Little guy has certainly had a challenging time of it in his short life. RoP rarely gets to this advanced stage these days, but in his case, too much hidden damage appears to have led to this situation. This was particularly frustrating as his eye appeared to have stabilized several time before suddenly worsening.

He's a trooper though and just keeps smiling through it all.

--------------------------------------

Isaak was taken back to the OR at 7:30 this morning. (We've been here since 6am, which meant I had to get the poor little guy out of bed at 5am.) He spent his time talking, smiling and flirting while we waited.

The retinal specialist came out to talk with me a few minutes ago. She will also be doing some additional laser ablation on Isaak's right eye as there is still some abnormal blood vessel growth. Her main concern with his left eye is that the tugging on the retina caused by the fibrous tissue could cause a hole to tear in the retina. If that happened, the vitreous fluid could get behind the retina and cause a full detachment. Full detachment would mean no functional vision in that eye.

I'll post more updates as I have time and more info.

So Long TPN – Don’t let the door hit you on the way out!

2010-12-15T12:30:00.003-05:00

First the good: Today is Isaak’s last day on TPN! His Broviac catheter will be left in place for another month in case we have to backtrack and put him back on some sort of IV, but we are thinking positively on this one. He’s done very well on the low volume over the last week. Until removal, we will only have to flush the line daily and change the clave/connector twice a week

In news almost as exciting, he will now have a 4 hour gap in continuous feeds. He’s getting the same volume through his g-tube but over 20 hours instead of 24. This means we have 4 hours of a cordless baby! This is going to be a good thing for Isaak and mommy and daddy.

Both of the little guys continue to grow at an astounding rate. On Monday, Isaak weighed in at 14lbs even and Penny at 15 lbs 4oz. Amazing. Isaak has really taken off since they began allowing us to feed him on demand and Penny just keeps on trucking. She is such a chubby monkey now with little leg rolls and arm rolls and the biggest cheeks you have ever seen. We’ll have to get some diaper only pictures soon for the world to see ;)

Now the not so good: Isaak had a physical therapy evaluation on Monday. They were very happy with the neuromuscular side of things and he seems to be developing fine motor control reasonably well (such as passing an object from hand to hand) – BUT – his gross motor skills are lagging. That would include head control and attempting to sit up or roll over. We have certainly noticed a gap compared to his sister and mentioned as much during the SICC visit. As such, we’ll be looking at getting weekly PT visits to help him along as well as focusing our attention on helping him work towards goals.

We think that some of this may be because he just hasn’t had the same opportunities as his sister. He’s been hooked up to IVs and feeding tubes so much that our interaction has been more limited and we’ve been unable to hold him or place him in certain positions. Now that he is cordless for a few hours it will be much easier to work with him. We have no idea at this point if this anything other than developmental lag. We really hope so.

Now the downright bad: Isaak had an eye exam last Thursday and the results were not encouraging for his left eye. When last we visited Duke Eye Center, we thought everything was going to be pretty stable but the doctors let us know that nothing was predictable in these situations. It now appears that additional fibrous tissue is growing around the retina and is causing more tugging, greatly increasing the risk of full detachment.

We may have reached a point where surgical intervention will be required to try to preserve the vision he has in that eye. On Friday (12/17), he will be undergoing a detailed exam under anesthesia, and depending on the results, they will progress immediately to surgery. If surgery is necessary, odds are good that he will lose the lens in his left eye and will have to wear a contact lens to protect it and allow proper focusing.

The left has been of great concern since a massive hemorrhage back in the summer. It appeared that it had cleared up and stabilized but apparently damage was caused that might have been behind the retina and this has led to the continued problems. No question this is a big disappointment. Little guy has seen enough of OR for a lifetime, much less for a baby not even 8 months old yet.

On the plus side, his right eye is doing really well and is essentially mature.

That's it for now (quite a lot, really) and we'll have more information on Friday regarding surgery (or hopefully lack thereof).

Of Synagis, SICC and Many Cute Photos

2010-12-05T17:02:00.002-05:00

I'm not sure this upside down stuff is such a good idea, bro...

Last week was a big week for the munchkins.

They turned 7 months old (real age)
They turned 16 weeks old (adjusted age))
They got their second Synagis shot for RSV prevention
They also got a flu booster (takes two shots at such young ages)
They went to the (unfortunately named) SICC (Special Infant Care Clinic) at WakeMed
Isaak had a very good visit with the gastroenterologist
They both got cuter somehow

That's a lot of stuff for such little guys.

Let's start with the SICC. This was their second visit to this clinic at WakeMed. It's a one stop shop for preemie care where we get to meet with a neonatologist, developmental specialist and physical therapist to evaluate the development trend of both of the little guys. This is above and beyond the regular pediatrician visits and is focused more on specific preemie problems. Early intervention is the name of the game for preemies.

Penny's evaluation was almost boring. She needs a bit more tummy time and additional stretching.

Isaak's was more complicated but overall still positive. He has a tendency to look and pull to his left. We think it's because of the vision issues related to the partially detached retina (and therefore only having peripheral vision in his left eye). Regardless, we are going to have him evaluated for physical therapy so we can avoid major issues down the road. It's very important to nip these issues early so skeletal and muscular development are minimally impacted.

They both are growing spectacularly. Depending on which scale Penny was on last week, she weighed between 14lb 6oz and 14lb 10oz. She was also 24.5" long. All told, she was around the 90th percentile based on an adjusted age of 16 weeks. Needless to say, that is reallllly good for preemies. Isaak weighed in around 13lb 5oz and was 24" long. That put him between the 55th and 60th percentile on all the pertinent measurements. We have no complaints that our little guy who had over half his small intestine removed is growing that well. Amazing.

So that leads to the surprisingly good GI appointment. Bekka and I were prepared to go in fighting to try to get Isaak more oral feeds and off of TPN as quickly as possible. It had become quite apparent over the last two months that 2oz at a time was just not getting it done from an Isaak satisfaction or parental sanity standpoint. An hour and a half after eating, little guy was starving and screaming (I'll have to see if we can't film the Legendary Isaak Squeal(tm) one day and post that bad boy).

In the first 30 seconds of the visit, the doctor disarmed us completely: He walked in and basically said: "Wow. His weight is great, his bloodwork is continuing to improve so why don't we try this: We'll start ad lib feeds immediately and see how he does with those. In a week, if everything is going well, we'll cut his TPN in half and a week after that if it's still going well, we'll stop it. We'll leave the broviac in for another month just in case".

Our jaws hit the floor. He pretty much handed us everything we were looking for in those few moments AND he thought Isaak was doing very well. Yay!

Friday, Bekka took them to get their Synagis shot and flu booster. You can follow the link above, but Synagis is essentially a shot full of antibodies against RSV. RSV is one of the most dangerous bugs small children with compromised lungs or immune systems can get. That is also why we will be increasingly antisocial as the winter drags on and won't even be able to take the kids to the big family Christmas gatherings.

Yes, it's that serious.

Getting sick can easily lead to pneumonia for preemies as their lungs aren't usually caught up to full term kids until almost two years of age. Check this PDF out. What that means is no big gatherings for the kids and minimal contact with children ourselves and with parents of preschool age kids. Among others, this is a prime reason Bekka will be staying at home caring for the kids at least a couple of years. They stay fragile for some time and the risk in daycare is far greater for them than full term babies.

So that pretty much caps off November and early December. Our next big date is December 9 when Isaak goes back for an eye checkup at Duke Eye Center. They will be putting him under for this so they can get a really detailed look and in case they need to perform any additional procedures. Wish him well!

In the meantime, you can entertain yourselves with the newly uploaded videos for this month and a slew of photos.

UPDATE: All photos now with 45.3% more snark in the captions :) Just didn't have the time earlier.

Laughter really is the best medicine

2010-12-02T11:41:00.001-05:00

Especially baby laughter!

From The Penny and Isaak Video Show

Lots more photos plus doctor updates coming soon! (Tomorrow?) In the meantime, enjoy this bit of baby cuteness. Sound is a must!

November 24th

2010-11-24T21:29:00.003-05:00

Two years ago, on November 24th, we got the results of Oliver's genetic testing at an appointment at Duke. What many - including us - had suspected was confirmed: Oliver had Spinal Muscular Atrophy.

A few short months later another family got the same confirmation for their 3-month-old son, Mackinley. Ollie's doctors became lil' Mack's doctors, too. We met Mackinley and his family shortly before his g-tube surgery.

April and Mackinley with Bekka and Ollie

(Mack was very chatty. Ollie listened very patiently.)

Neil and I became friends with his parents, Brian and April. Our lives paralleled each others for a while. Ollie and Mackinley were the first two children to enroll in the clinical trial at Duke. And shortly after Oliver died, April and Mackinley came to visit us at our home:

Lil' Mack - 7 months old

Today, November 24th, 2010, our paths have crossed again. I don't think it's coincidence that on this day that is so etched in our minds Mackinley earned his angel wings. I think it's Oliver's way of welcoming his friend to heaven.

I can see them now - running, skipping, jumping, playing - free of the shackles of SMA. And even as I shed tears, I find comfort as I envision lil' Mack and Ollie chatting away.

Babies and Stuff

2010-11-21T16:41:00.001-05:00

OK, so to be fair, that is almost always the topic of entries on this blog. If I'm about to drop a treatise on the current state of Sino-Russian relations and their impact on the international mineral trade, I'll be sure to let you know so you can avoid reading it. (Except Roy, he probably would be MORE likely to read that ;)

We will have VERY cute pictures and video up later this month. Both of these little guys are changing so much, we often wake up with different babies than the ones we went to bed with. This week they have moved to a whole new level of personal interaction. More smiles, more giggles, better following of objects and people. Over the last couple of days they have started reaching for and grabbing objects consistently. It's really amazing to watch. Penny is a little ahead from a head control and body control point of view, but they are both doing so well.

Not much (thankfully) to report on the medical front. Isaak had his followup with the eye docs at Duke last week and everything looked pretty stable. His right eye is "fantastic" to quote one of the docs and his left looks about the same (it's NOT going to get better, we just don't want it to get worse). There is some concern as there is still blood in the eye but they aren't sure if it's old blood from the big hemorrhage this summer or if it's fresh. We have another visit scheduled in December when he'll be examined under mild anesthesia so they can get a more detailed look. We should also be hearing from the fine folks at the Governor Morehead school so we make sure we are doing all we can to help him adapt to his peculiar vision issues.

Let's see - anything else...Oh yes, Isaak now weighs well over 12 lbs. This past week saw a weight of 5.57 kilos or 12lb 4.5oz. He gained about 12 oz in one week! We would not be surprised if he tops 13 this week. Penny was 13lbs almost 3 weeks ago and we will try to weigh her this week. It would not be shocking to see her in excess of 14lbs at this point. They are such amazing little guys and Isaak's steady weight gain points to really good adaptations occurring in his GI tract.

Finally, just a reminder/request to help out victims of genetic disease. Alternating Hemiplegia of Childhood is a disease so poorly understood that they don't really even understand what causes it. Everyone out there has been so fantastic voting in the Pepsi Refresh campaign for SMA causes, we hope you feel comfortable voting for AHC in this current cycle. Click on the link below and you vote via facebook login, create an account or send text messages. AHC is currently in 3rd place and needs your help to get to #2 (a money slot). Thanks so much!

http://www.refresheverything.com/cureahc

6 Month Check-Ups

2010-11-10T09:35:00.006-05:00

This will be brief, but it is an update! =)

Both babies went to the pediatrician for their 6 month check-up last week. Of course that also meant - gasp! - shots. And while they got the "regular" 6 month immunizations (2 injections), they also got flu and RSV shots (2 more injections). Isaak didn't start crying until halfway through the second injection. Penny started about the time the cap came off of the first needle! Neither one of them cried for very long, but it was heartbreaking nonetheless.

So, I'm guessing you all want statistics. Well, tooooooo bad!

Just kidding!

Penny weighed a whopping 12 pounds, 10 ounces. Her head circumference was 41 cm and her length was 23.25 inches. At birth, she weighed a mere 1 pound, 7 ounces and was just 12 inches long. *Updated info* As of Tuesday, Nov. 9th, she weighed 13 pounds even according to the home baby scale we have.

Isaak weighed 11 pounds, 3 ounces. His head circumference was 40.5 cm and his length was the same as his big sister's. He was just 1 pound, 11 ounces and 12 1/4 inches long at birth. *Updated info* As of Tuesday, Nov. 9th, he weighed 11 pounds, 8 ounces according to the home scale.

Penny had an eye appointment last Thursday and her RoP has resolved! The blood vessels in her eyes have finished growing all the way out to the retina! She won't have another eye appointment for 6 months. Yippee!

Isaak's next eye appointment at Duke is on Monday (11/15). Hopefully, his RoP is almost resolved and there's not any more detachment of his retina. (Fingers, toes, and, yes, eyes crossed!)

That's all the time I have for now!

P.S. Thank you to those of you that have voted for the AHC Foundation in the Pepsi Refresh Project! Your votes are making a difference as they have moved into 4th place...BUT they need to be in 1st or 2nd in order to win the grant money. Please keep voting daily! In addition to voting online, don't forget you can vote by text message as well. That's 2 votes daily!

Guest Blog: AHC Foundation President Jeff Wuchich

2010-11-08T10:20:00.002-05:00

We've never done a guest blog before, but I think many of you will understand why we've chosen to do one for Jeff. His son, Matthew, has Alternating Hemiplegia of Childhood (AHC) which is a very rare neurological disorder and its cause is not known. Like SMA, there aren't any effective treatments and there isn't a cure. Getting funding for so-called "orphan" diseases is very hard. We've seen how hard it is with SMA. But at least with SMA we know the cause is genetic and research is going towards finding treatments and, ultimately, a cure. The AHC Foundation is trying to win a $250,000 grant in the Pepsi Refresh Project to determine if the cause is genetic.

This is Matthew.

I'll let Jeff explain more:

Imagine your child suddenly lost the useof one or more of their limbs for minutes, hours, even days. Imagine these episodes were often painful. Imagine this mysterious disorder essentiallycaused parts of the brain to “short circuit”, and affected your child’s abilityto learn. These are the sad realitiesfor those afflicted with Alternating Hemiplegia of Childhood (AHC), anextremely rare neurological disorder. Only 650 or so cases have been identified in the world!

This 3 minute video provides details as does this article in the Raleigh, NC, News & Observer.

Both feature my son Matthew.   Matthew was born with complications atbirth. He spent the first 10 days of hislife at Rex Hospital in Raleigh, NC. Hevisited hospitals many times his first 2 years of life (he is nearly 3 ½now). There were other AHC symptomsearly on, but the primary symptom (the baffling attacks of paralysis in one ormore limbs) came at 6 months, which we now know is typical for AHC sufferers. I say “now” because it took until Matthew was18 months old for us to arrive at the diagnosis of AHC.   Because it is so rare, the vast majority ofneurologists do not know about this disorder. The agony we went through of knowing something was very wrong withMatthew, but not having a name for it was heart wrenching. We were fortunate to eventually find doctorshere in the Raleigh area who are familiar with it. Many families are not as fortunate.

But despite our fortune in getting to adiagnosis, Matthew will continue to have a very challenging life.   These attacks often can affect breathing orswallowing. In fact, we nearly lostMatthew in March of 2009. There is noknown cause for this disorder, no effective treatment, no known cure YET.   The only drug that has any benefit(flunarizine) is not FDA approved, and its benefit is marginal at best.   Unless we discover the causes, treatments,and a cure, Matthew’s future, and those like him, is grim.   The disease name refers to the diseaseonset; it is a permanent disorder.   Someadults are able to live semi-independent lives performing menial jobs, but manyrequire permanent full time care even as adults.

Research has been ongoing for severalyears, but funded solely through the AHC Foundation by families with afflictedchildren doing grass roots fundraisers. That is why we are striving so hard to win the $250,000 this month onPepsi Refresh.   Our idea is simple,straightforward, and ambitiously hopeful at getting to the root cause ofAHC. The project will perform a fullgenome sequencing on a sample population of AHC patients in the UnitedStates. From this process, we shouldhave identified common genetic mutations. We will then be able to screen the other AHC patients for the identifiedmutations & arrive at the root cause of AHC, or at the very least eliminategenetics as a root cause if none is discovered.

We are grateful for any support you canprovide to help us win this grant. Wecertainly do not want to take focus away from efforts to cure SMA, but asprevious winners, you understand the enormity of the task we face.   Thank you for your support. Easy voting details are below.

Please do all of these each and every day through November 30th!

1. From your computer:

Go to http://www.refresheverything.com/cureahc and click on the VOTE NOWbutton. Follow the directions. Make sure you hit VOTE NOWagain after logging in.

2. From your mobile phone:

Text 104112 to 73774 (73774 is in the “to” field; 104112 is in thebody of the message)

3. Please share with everyoneyou know!

Email me with any questions jeff@ahckids.org

Thank You!

Jeff Wuchich, AHCF President

So please take this opportunity to help Matthew and families like his in their battle against AHC.

Thanks!

6 Months? Really?!?

2010-10-30T17:47:00.001-04:00

Would you believe the twins are six months old today.

Seriously.

6 months ago today we had just come to the end of a crazy 3 week ride in the hospital and we had no idea how our little ones were going to fare. 25 week micro preemies were Discovery Channel programming, NOT real life.

But it turns out it was our life. It's been a challenging 2 years and it will continue to be but we have some lovable munchkins and memories of another.

Isaak at just a couple of days. Wow.

Penny "sunning".

We now have babies that weigh about 8 times their birth weight. That should happen when they are like 5, not 0.5. And boy are they special little guys. Thanks everyone for all your support. We would never have made it without our beautiful friends and family.

And we really never would have made it without the incredible doctors and nurses at WakeMed and UNC. Y'all are some amazing people.

To celebrate, please take a look at the latest pics.

And video.

(Though give the vids some time. It will probably be a couple of hours before they are completely uploaded).

Isaak's Eye Follow-up and other Weighty Matters

2010-10-26T23:11:00.000-04:00

Bekka will have more to follow with details on Isaak's vision and the like, but I thought I'd drop a quick note.

His exam with Dr. Freedman at Duke went really well. The right eye responded to the laser treatment and the vascular growth appears to be normalizing. The left eye did not show any additional retinal detachment and the couple of spots that were hit with the laser also looked like they were doing well. She is optimistic that the left eye will stabilize and there will be minimal or no further detachment. This is not guaranteed of course. Anytime you get retinal detachment, the situation can worsen.

One bit of potentially positive news regards his field of vision. Because his brain is still learning how to see, it should adapt well to the available vision so that it uses the right eye for the central image and merges the left eye's partial vision in a fairly natural way. An adult would probably perceive an actual blank spot in their vision.

We also weighed both kids today. Isaak clocked in at 10lbs and just shy of 6 ounces. That's pretty dang good for his situation and he gained about 5 ounces since last week. Penny, well, that is another story altogether. Our little piglet is up to 12lbs 1oz. It's hard to believe she was 1lb 7oz when she was born and barely 5 when we brought her home. Our little girl is growing up!

Isaak and the Big Field of Vision

2010-10-25T13:30:00.001-04:00

A quick couple of links that I've found helpful in understanding Isaak's vision loss.

The first is from Wikipedia and shows photos of visual field loss.

Second is a vision field test from St Paul’s Eye Unit, Royal Liverpool University Hospital.

Lastly, a graphic from Brown University.


Depiction of Visual Field from Brown University

Just in Case You Were Wondering...

2010-10-23T19:46:00.001-04:00

...Isaak is, in fact, at home and doing well. His stay on the pediatric floor at Duke was just a formality and he was discharged after one night with no fanfare (though he did make friends with the nurses).

We really won't have an update on the situation with his eyes until Monday morning. He has a follow up appointment at Duke Eye Center with the surgeons.

Otherwise, everybody is doing pretty well. The last official weights we had on these two, Penny was just shy of 11 and 1/2 pounds (I bet she is closer to 12 and 1/2 now) and Isaak was just a tick over 10. So "Little Bit", as I had taken to calling her, really isn't anymore. She appears to be taking full advantage of that intact digestive tract she is sporting to pack on the pounds and inches. Isaak is jealous. Honestly though, if we didn't have Penny to compare him to, I think his growth would look great to us and according to the doctors, his growth really is quite good given his disadvantages.

He had a visit with the GI Docs, GI Surgeons and Speech Therapist at UNC last Wednesday and everyone was pleased with how well he's doing. Amazed really. The surgeons increased the size of his G-tube (since he was a tiny tyke that didn't even weigh 5 lbs when he had his reanastomosis) and were otherwise happy with the way everything looked.

The GI docs have been very happy with his feeding progress and he's now getting 5, 45ml (1.5oz) bottles a day. This is quite an increase from the 3x10ml he was getting when he came home. He's still getting TPN via his Broviac but there is hope we can start tapering that down soon since he's doing so well with his g-tube and oral feeds. They have decreased the amount of dextrose in his TPN and that, combined with the oral feeds, has been great for his liver. His total bilirubin is down to 5.3 compared to 11.6 not long after he came home from the hospital. Remarkably, he barely even looks jaundiced now. Ideally, the bili level would be below 1.2 mg/DL, but we'll take what we are getting now, yes sir!

The speech therapist was making sure he was doing OK with his feeds. When we first began increasing bottle feeds, he was having some trouble developing suction. Apparently, that was just due to inexperience and he is now doing a great job and they did not have any concerns.

I took my first extended trip out of town since last spring...and nothing terrible happened. Things like that really ride in the back of your mind. Grandma Karla is in town too, so that made it a little easier on everyone. I wouldn't have taken off if Bekka was by herself that entire time.

Look for an update on Isaak's eyes later this week and new photos by the end of the month. I'm going to start uploading photos about once a month just so I'm not chasing my tail all the time trying to keep up.

Isaak's Eyeballs Open Post

2010-10-13T11:27:00.001-04:00

Good morning!

We'll keep this open with occasional updates today. Right now (8:35), we are finished with preop and waiting for them to take Isaak back. He's currently asleep in Bekka's arms so I'd classify that as doing OK ;)

To recap: They will be conducting a detailed exam of both eyes while he is under anesthesia. More than likely, they will perform laser ablation surgery on his right eye to help with the RoP issues and to direct retina development into a more normal pattern. Based on the exam, they may also laser areas in the left eye in the hopes of stabilizing the situation and salvaging as much vision as possible. We'll have a much better idea where we stand.

Update (10:00am): We just met with the retinal specialist. The news confirms the pre-op diagnoses. The right eye looks healthy, if a bit underdeveloped for his age. The surgeon is in the process of lasering that eye to dry up a couple of small bleeds to prevent them from expanding and keep his right eye on track.

The left was, if anything, a bit worse than anticipated. They were able to conduct a much more detailed scan of the eye which showed how large the fold was and indicated that there is definite retinal detachment at the center and ~~in a line across the eye back towards the nose~~. (Ok, had that backwards, it's actually towards the outside of the eye. He is going to have decent outer vision because the inside of the eye is what looks out.)

This is apparently classic stage 4-B RoP. Most of the periphery of the retina is attached, and he should have good outside peripheral vision. The doctor indicated that were this an older person who had developed the same problem, they would almost certainly have performed surgery. In the case of Isaak, this has been going on long enough that he has not developed the neural pathways to learn to see, and the risk associated with cutting the eye open and possibly having to take out the lens is not worth it. We do not know for sure if they are going to laser anything on that side.

Interestingly, he will have to have glasses as he gets mobile mostly to protect his very valuable right eye.We'll have more after meeting with the surgeon.

Update (11:00am): Just met with the surgeon. Everything went swimmingly. His right eye looked good and she hit a few spots of concern (but nothing dire) with the laser. She was very happy with the vascular development in the left eye outside of the folded area and only hit a couple of spots there. She confirmed that both she and the retinal specialist concurred that surgery on the left eye carried far more risk than benefit, especially considering how well attached and developed the unaffected retina is. We will see her again a week from Monday for a follow-up. In the meantime, we apply two different types of eye drops for the next 5 days. That is pretty much it for post-op care.

Bekka is back in recovery with Isaak and I'm waiting for them to move to a normal post-op spot so I can join. After that, we'll wait while they find us a spot in the main hospital tower and go from there. His stay in the hospital is strictly to observe for any lingering effects of anesthesia, from an eye standpoint, he is good to go.

Update (Afternoon): Little guy is happily ensconced in a room on the 5th floor at Duke. Once he was awake, you've never seen a baby so eager to get a bottle of milk! Poor guy had not had formula or g-tube feeds since midnight, only some pedialyte overnight (just like grownups and anesthesia, he couldn't eat). This afternoon, he's mostly been napping. I'm sure the stress of the surgery plus the lingering effects of being put under have zapped him but good.

Assuming no issues, we'll be outta here first thing in the morning.

Isaak's Eyes are not Smiling Today

2010-10-12T11:00:00.003-04:00

Yesterday, we received tough news regarding Isaak. His left eye has sustained damage that likely means he will have little or no central vision in that eye. With a little luck, he will have peripheral vision but that depends on how development occurs and whether the damage progresses.

Last week, his weekly eye exam revealed a fold in the retina of the left eye. This was new, and the doctor in Raleigh immediately scheduled a visit to the Duke Eye Center. We had that visit yesterday and the doctor indicated that the fold went from the outer edge of the retina into the macula. The fold is essentially a ridge of blood vessels and scar tissue that have pulled the retina up.

The macula is critical to central vision (you may be familiar with the condition of macular degeneration). It appears there really is nothing they can do to guarantee improved vision in the eye without putting the overall health of the eye at even greater risk. You also have to take into account the risk of 2+ hours under anesthesia for any potential procedure given his relatively delicate state and young age. If his right eye was also in equally bad shape, they might recommend taking the risks involved to try and salvage more vision.

His left eye has been more problematic from the beginning, and he experienced a large hemorrhage a couple of months ago. It's not unlikely that whatever caused the hemorrhage event led to this situation.

The right eye is doing reasonably well. However, he still shows signs of Stage 3 RoP, and that is concerning at this late age. To that end, they have scheduled a detailed eye exam under anesthesia with likely laser ablation surgery. It's also quite possible they will perform laser surgery on the left eye to help reduce the likelihood of total vision loss. This is scheduled for Wednesday (10/13). Time under anesthesia is pretty short for these procedures (vs. full-on surgery).

Yep, that's tomorrow. Life moves fast when you have preemies.

We cannot lie: This sucks.

Isaak has some of the biggest, most soulful eyes we've seen this side of Ollie and he's been through so much already. It is terrible that this is happening to him on top of everything else. Unfortunately, he seems to be following the path that many boy preemies take: That of most difficulty.

For Cindy R.

2010-10-01T16:25:00.000-04:00

I think that many of you may remember the super-cute little knit hats that Ollie wore for his Santa photo shoot (taken by Bekka) and for our shoot in the park by Amanda Milloway. If you haven't browsed those pics, they are worth your while.

Those hats were made by a friend and co-worker of my mom, Cindy R. When she heard about the twins, she immediately set out to make a couple of hats for them just as she had their older brother. As you can see below and in this September album I've just updated, these hats are super cute too.

Bekka decided to juxtapose the 95 degree September beach weather we were having with winter-time knits hats and you can see the colorful result.

Cindy has had some very trying medical issues lately and we hope that seeing these cute little guys in her beautiful work will raise her spirits. If you can spare a moment, say a prayer or send a thought her way, she could really use it.

Best wishes Cindy and thank you so much for caring about our children. Thank you for taking the time during all you are going through to make beautiful art and write sweet notes. We hope they can visit you one day, but for now, enjoy the pictures.

One more thing: Penny says:

SMILE!

Which the Chicken and Which the Egg?

2010-09-26T20:10:00.001-04:00

So Penny has her first cold.

So does Daddy.

Question is: Who gave it to who? Or did we both pick it up at the same time?

So far, she's been doing great and the only real signs are a snuffly nose (for which the terrible, awful, evil bulb syringe offers relief) and she is sleeping a LOT. I mean, a LOT, even for a 6 week old (which she and her brother will be on Tuesday based on adjusted ages). We will be staying on top of this, as even a simple cold can be dangerous for preemies. Their lungs just aren't fully developed until they are almost 2 years of age so potential respiratory issues don't go away for a long, long time.

Both are doing well overall. Last week was very busy with appointments including GI for Isaak and Ophthalmology and preemie clinic visits for both. The GI visit was very positive. It resulted in Isaak getting increased oral feeds - from 3 x 10ml bottles to 4 x 20ml bottles. Based on how well he's doing, that should go to 4 x 30ml bottles beginning tomorrow. A whole ounce! 4 times a day! Way to go little guy. They also stopped IV lipids. He's still getting TPN but that will likely be reduced further if we increase feeds on Monday. Stopping the lipids should really help his liver begin recovering. We'll have to see how he does weight gain wise over the next couple of weeks and whether he can stay off.

The eye doc visit was also encouraging. Isaak's eye development has finally progressed to "Zone 3", meaning that they are maturing. Penny's eye that had suddenly started worsening is back on track. Oh, Isaak's hemorrhage is also clearing up. He's had that for months but it's much better just recently.

The preemie clinic (or Special Infant Care) was their first official visit back to WakeMed since they left. It's essentially to allow a neonatalogist to follow them and watch out for all those potential preemie pitfalls. Overall, it too was positive. The only instructions we came away with were for a few stretches to help increase their flexibility and a follow-up with a speech therapist for Isaak. Why you ask? As he has started eating more, we have noticed that he really gums the bottle nipple and swallows rather than truly sucking. He also doesn't keep a pacifier in well (if at all some days). We want to head off any significant problems with early intervention therapy. He eats really well, just not quite correctly.

We'll be back in a couple of months for another follow up with our friends at WakeMed.

On a sadder note, I'd appreciate any prayers and kind thoughts you feel like throwing my maternal grandfather's way. He had a significant stroke last week and is currently at Baptist Hospital in Winston-Salem. He seems to be medically stable right now but has lost a lot of his speech ability and has limited movement on the right side of his body. He hasn't been able to meet his new great-grandchildren yet but we hope it can happen soon.

That is all the news from lake Wobegon - until later....

This is Ollie's Tale. This is SMA.

2010-09-16T12:45:00.000-04:00

Today we're participating in an SMA Blog Party hosted by the Strongs - Bill, Victoria and beautiful Gwendolyn. And you're invited, too. More on that in a bit.

When we started this blog in November of 2008, our first post went something like this:

Neil sent this e-mail to our family and friends. And so our journey began...
I have very sad news to relate regarding Oliver. Over the last three weeks we have been going through a diagnostic process to determine what was causing physical developmental delays, primarily very low muscle tone and physical strength. Yesterday, the results of a blood test confirmed the symptomatic diagnosis of Spinal Muscular Atrophy (SMA) Type 1. This disease is invariably fatal and most infants have life spans of 18 months or less with 1 year being very common. He will continue to get progressively weaker with respirartory failure likely to be final cause. Mentally, he is unaffected and is a bright and happy little guy. It's hard to stay sad when he's around! To add to the trauma, the disease is autosomal recessive, meaning that both Rebekka and myself must be carriers and that there is a 25% chance any child we have could develop SMA. Clearly this has been a very tough time and will continue to be so. Bekka and I are doing about as well as can be expected given the circumstances and are moving ahead with planning for the upcoming year. She will be dropping down to a very part time schedule so that Oliver can be at home and minimize his risk of a respiratory infection. Stride Rite is allowing her to keep her full insurance coverage as she does this which is a huge benefit as it's both better and cheaper than mine. A few people have known about this from the beginning, but with a confirmation yesterday, we feel it is appropriate to let others know. We thank you for the thoughts and prayers as we move forward. Ollie is a well loved little fella.

Oliver is, indeed, well loved.

It took less than a year before we had to write Oliver's obituary. We knew the day was coming, but it still took us by surprise. This was the first post I made after his death:

It is so hard to type these words. Almost as hard as it was to say them.

Oliver's gone.

Two days shy of his first birthday.

While Neil and I had prepared ourselves (as much as is humanly possible), it still hurts so much that words cannot begin to describe it.

Thank you so much for your support and thoughts throughout this journey.

Please continue to pray for us.

SMA is still our passion. And it always will be. Which is why we're participating in the SMA Blog Party. It's why I did a radio interview shortly after Ollie's death. And why I did an interview on live TV during the MDA Telethon last year. And why I asked you to help the Gwendolyn Strong Foundation win much needed money for SMA research in the Chase Community Giving campaign. The SMA Blog Party is also about winning much needed funds. But, more importantly, it's about raising awareness on a bigger level.

The contest this time around is the Samsung Helmet of Hope. And we need your help. Go to VoteForSMA.com and cast a vote today and every day until September 29th. A winner will be announce at the Kansas Speedway on October 1st. Jimmie Johnson's helmet will feature the Gwendolyn Strong Foundation's logo at an event October 10th at Auto Club Speedway.

So help us out. Go vote right now. For Ollie.

This Post Just Couldn't Weight

2010-09-13T19:36:00.000-04:00

Yes, the pun is horrible and completely intended. That's just how I roll.

In big news, Isaak was weighed today: 8lb 12oz
Penny was weighed today: 8lb 12oz

Technically, he weighed 10 grams more (3970g vs. 3960g) but Penelope has caught up with and is quite likely to soon pass her brother in weight. Isaak has been bigger than Little Bit since they were born! She was 1lb 7oz and he was 1lb 11oz (780g vs. 650g), and he has typically maintained an 8oz margin for months.

So why the sudden overtaking maneuver on Penny's part? Simple: She eats like an NFL linebacker and still has her entire digestive track, whereas Isaak is getting about 30% of his nutrition via TPN and the rest via g-tube and three small bottles a day. She can just consume, and more importantly, process more calories than her younger brother.

What is amazing is that Penny isn't chubby at all. She has a tiny double chin and a few small rolls on her legs, but is mostly solid muscle. Apparently all her food consumption is going right into getting bigger. Isaak is definitely the chubbier of the pair and looks really healthy - he just isn't growing as fast. They will both get measured at the pediatricians office on Wednesday and it will be interesting to see how much longer she is.

Please don't take this development as a negative. Overall, Isaak is doing so well! He's gaining at a nice steady clip of 0.5 to 1oz per day and has tolerated every feed increase we've tried since coming home. In fact, right now he is at 16ml/hr - the rate that caused him to start dumping while we were in the NICU. Of course, he also weighs probably 3 lbs more now than he did then and should have had a commensurate increase in digestive tract length and development.

In very good news, we have been allowed to start decreasing TPN as his g-tube feeds increase. Hopefully we'll start to see a drop in bilirubin levels as the ratio of oral/enteral feeds to TPN increases even further. To stop TPN, he would need to be at about 25ml/hr of enteral feeds. Of course, as he grows and gains weight, that target moves out a bit, but we are optimistic we can get rid of TPN in a reasonable time frame. Truly, from what we've found in our research, he's doing remarkably well for a short-gut baby.

He has a long road ahead but is on the march like a little soldier.

New Photos and a Word about Eyeballs

2010-09-09T21:42:00.000-04:00

It's been a mostly uneventful week since the last post. I finally managed to upload some photos (3 new albums) and video of Isaak and his binky. Click on Ollie and go take a look-see.

Both munchkins had their eyeballs probed today and things appear to be progressing. The hemorhage in Isaak's left eye is finally clearing up (after almost two months!) and while they both have some RoP present, it appears that progress is occurring. Penny really isn't far away from being "normal" at all.

The only other thing we have medically to report is that Isaak's bloodwork is looking pretty stable. He's still a little anemic and his bilirubin is still elevated but hasn't gone up anymore.

Other than that, sleep is the only thing we are lacking. Having a baby can be a challenge. Having TWO babies is a bigger one. One of those babies having medical issues...well, just makes life all that much more exciting.

Twins in the House

2010-09-02T20:22:00.000-04:00

Waah.

Unh.

Waah.

Unnhhh.

Nom. Nom. Nom.

Waaah.

Coocoocoo.

Fwp.Fwp.Fwp.

Unnnh.

That's as close as I could get to mimicking stereo twins in text. Of course, in real life it is both louder and cuter.

I know I had promised an update over the weekend, but guess what?

WE HAVE TWINS!

Am I punchy? You bet!

Tired? Heck Yeah!

Ecstatic? Doubly! (hehe).

Even with the assistance of Nana Pam all last week, Nana Pam and Papaw Grant over the weekend and now Grandma Karla, it's been a crazy week and a day since these little tykes came home. Sleep is a precious commodity for mommy because she is up all the time and for daddy because he is working all the time.

That being said, it is fantastic to have them at home! Not making daily trips to the hospital, not LIVING in the hospital...being able to cuddle with them anytime we want - that makes up for almost everything.

Both are doing well. Penny is basically just a regular baby, albeit a very very hungry one. She is consistently eating 4oz bottles + nursing. We are not sure where it goes! She has managed to get up to 7lb 9oz but very little of it is baby fat. Mostly she's just a muscular little thing.

Isaak had his first follow-ups at UNC on Wednesday and everything looks pretty good. He weighed in at 8lb 4oz and so is continuing to have steady weight gain. This is a great sign that he is absorbing nutrition from his g-tube feeds. They bumped those feeds up to 14ml/hr and we will go to 15 on Sunday if he tolerates that well. So far so good. He is still on TPN, of course, and will be for the foreseeable future. The good news is that more than 60% of his nutrition is coming from enteral feeds and that helps protect lil' guy's kidneys, liver and pancreas.

I think we've managed to transition well to being Isaak's nurses. Bekka is proficient at mixing his TPN and getting the IV ready to go and we are both well-versed in Broviac care at this point. The home health company sends a nurse once a week to get blood draws and change his dressing. We are both far too familiar with g-tubes so that isn't an issue. It's not fun, but we look at it as positive step with this little guy rather than the setback it was for Ollie. He "eats" a mixture of 50-50 maternal breastmilk and Elecare and is doing well on it. He still only gets 2 10ml (1/3 oz) bottles a day, but hopefully it will be 3 very soon and then we can start increasing the amount. Baby steps are the order of the day (week, month and year).

Both kids have eye exams on Friday and we hope to see further clearing of the RoP and maturing of their little preemie eyeballs.

A few notes on helping Many folks have asked how they can help out. It's often overwhelming for us to think of any needs on the spot (rest assured there are some). Amanda M. and Robin B. set up a Care Calendar for Ollie long ago. We didn't really think we would need it again, but it's still there and Amanda has been keeping it up to date.You can click over to it here and enter Oliver as the password (capital O is important). This will allow you to sign up for slots to visit and help out. We may add some more daytime visits to help keep Bekka sane. We so much appreciate the generosity we've been shown in food, gifts and time from our family, friends and acquaintances. It stinks to be on this side of the helping others equation again, but know that many of you have "paid it forward" so much over the last couple of years that you probably have a nice down payment on a beach condo. Thank you!

A note on visiting: As preemies, these little guys have very fragile immune systems and will for the first year of life. Please make sure you are well and members of your immediate family are too. It pains us greatly, but for now we also ask that you not bring children to visit due to increased infection risk (yeah, we are sort of like the hospital). When you visit, please wash your hands immediately and use some of the hand gel we have scattered around. That's what we do every time we come in from the wider world and we appreciate your help in this.

That's it for now. I'll do what I can to get pictures up soon as have a bunch of cute ones (a given I guess :).

Notice Anything Different About Isaak?

2010-08-25T21:06:00.000-04:00

Or maybe this picture will help:

Or these two:

A bigger post with more details and a photo update will be up by this weekend.

Welcome home little guy!

Sound Medical Advice (and an update on the Twins)

2010-08-18T00:36:00.001-04:00

First, to get this out of the way:

So now you know! And catheter safety is paramount (really).

One of the biggest risks with a central line is infection and another risk is some sort of trauma caused by tugging or moving the catheter. But just wow! I suppose these videos are geared for kids and their parents and not so much little ones, but now Bekka and I can better resist the temptation to start jumping rope once we get him home.

Now on to the babies:

Isaak is doing pretty darn well. Some of you may have been updated via other means that Isaak was moved to a regular pediatric room last Wednesday. The way it happened was...interesting. We'd been debating making the move for a few days, a new attending came on in the NICU and pretty quickly decided that Isaak really should go to the floor. He no longer has preemie problems (save for a bit of anemia) and the doc had decided that the GI folks could better handle the feed situation. We did not disagree.

Anyway, on Wednesday, Bekka decided to take a day off from the environs of the NICU as she knew Isaak would be well cared for by all the nurses. She'd been told it would be "2 or 3 days" before a room would open up on the regular pediatric floor. That was the status at 3pm on 8/11. At 6, she gets a call that says "we will be moving him in a hour". So not only do we get to hurry to the hospital, we have to pack for Bekka to spend some time there. So we did. We finally made it to the hospital to find him zonked out in the bed and sucking merrily on his paci. That was a hectic evening.

Ever since, he's been ensconced on the 6th floor of the North Carolina Children's Hospital under the watchful eyes of his mommy. Little sister has been there with them every night save one, when daddy and Nana and Papaw brought her home so mommy could sleep without having baby grunting in stereo running all night long. (Apparently it's tiring. Who knew?)

Medically he seems to be rapidly improving since Friday. He was on 10ml per hour via g-tube for a week as they monitored the level of "reducing substance" in his stool. (Poop. You KNEW there was going to be poop, right?). This test measures the body's ability to absorb sugar in the intestinal tract and is an important indicator of bowel function. For several days, he was running high values (0.5 or greater g/dL). Yesterday, he finally dropped down to 0.25. Now, this doesn't mean that he wasn't processing fats and proteins, just sugars but it's a good test looking at how things are going. Since he hit 0.25 for 2 days in a row, on Monday they upped him to 12ml/hr of 50% milk and 50% Elecare (an elemental formula). If he has a good test tomorrow, he will likely get bumped to 13. They left his TPN where it is so he could get a few more fluids.

He's gaining weight well at roughly an ounce a day, and that's a good indicator he is also getting nutrition from the g-tube feeds. If he wasn't absorbing something, the TPN doesn't have enough calories to keep him growing. Do we think he'll be off TPN before coming home? Probably not. We are at the point though where we'd like to get our little guy to the home and used to be being in a non-hospital environment. He would likely be looking at many months before getting to strictly oral feeds, but you never know. The next big step for him will be trying small bolus feeds, both via g-tube and orally. Ideally, when he comes home, we'd be able to feed him orally during the day and then have g-tube feeds overnight.

His poop is looking better, too. A little color has started showing up in it and that corresponds with a sudden change in his overall color. He's still jaundiced, but the change from Friday to Saturday was pretty stunning. Apparently, much of the color in poop is the body ridding itself of bilirubin (I did not know that) and we hope that his body has decided to get better at doing just that. The TPN is still not good for his liver, but he'll be so much better off if he can dump the bili.

In other news, Isaak's edema seems to have completely disappeared. Much like Penny, he just started peeing a couple of weeks ago and hasn't stopped. This is excellent since he has the IV in all the time. He also appears to be working through the anemia (At last! We hope.) His last hematocrit was only 0.1 lower than the previous (so effectively the same). Hopefully his next will trend higher. Also, his eye exams are starting to look gradually better. The left eye is still the most concerning, partly because there is a hemorrhage concealing the retina in a couple of places. Hopefully that clears up more this week so they can confirm that the eye is still maturing.

Penny has been her usual rambunctious self. We'd like her to be gaining weight a bit faster, so we have just upped the quantity she is getting in her bottles to almost 3 oz. She gets 3 of these a day, all fortified with formula to 24 calorie. Bekka also reports that she is getting better and better at nursing. We have to remind ourselves that these little guys have to practice and get stronger and that they were only due last week! Her only other issue is a worsening of the RoP in her right eye. It's a little unusual for that to be happening at this age and stage of development so she'll be back next week for another checkup. Hopefully nothing to worry about but it's important to stay on top of that issue.

I think Bekka and I are mostly staying sane. She's spending all her time at the hospital save for Penny's appointments and when I spirit her away to escape for a bit. It's very challenging taking care of two babies but there is something to be said for not having to drive back and forth to the hospital every day and getting to stay in the same space at night.

In a complete aside, did you know that at the state's preeminent public hospital (PUBLIC), patients have to pay $8 a day to park. WakeMed was FREE for patients and Duke was only $2 a day when we were there with Ollie. Just amazing. They have their excuses and they all suck. I can only imagine how many patients can't actually afford that. Serving the state well there Carolina...

There is a reason for cautious optimism in our posts! Also: Warning, poop ahead!

2010-08-10T14:38:00.000-04:00

So, the day *after* the big update regarding Isaak and all his good news, he decides to have the predicted setback in his feeding progress. When we were visiting on Sunday, he had a little spit up (completely new event) and also a big poopy diaper that was much looser than they had been. (Sorry, poop is the topic of conversation of lots of baby parents, but especially ours ;)

On Monday, he had an even bigger diaper that was definitely too liquid. Lab analysis indicated that he was not processing carbohydrates well at all. This is where you have to step back, retrench and re-evaluate.

The docs immediately dropped his oral feeds down to 10ml/hr (from 16). He will resume TPN (grrr) this evening to make up for the missing calories (he was on dextrose and electrolytes overnight). We hate to see the resumption of TPN, but it's critical he get the calories to continue growing and developing in other ways right now.

The good news? He hasn't pooped since yesterday evening and this probably means the drop in volume really has helped him slow down his food transit time. Sometime in the next couple of days, they will run labs on his stool again to make sure everything is OK and he is processing well. Also, his electrolytes and glucose still looked good. If a baby is truly "dumping", those usually get out of whack really fast. It's great that he's still able to get a fairly substantial amount of enteral feeds as that is so so important to intestinal development and growth.

Over the next few days, they will begin increasing his feeds again and we'll see how far he gets this time. I suspect things will go a little bit slower and more cautiously. We absolutely want to maximize the amount of enteral feeding he gets so we can minimize TPN, but we also have to keep him growing and developing. There is a good chance they will also begin increasing the percentage of his feeds that are based on an elemental formula (say 50/50 formula and breast milk) as those are often more readily absorbed.

That's it for now.

Isaak's big Update

2010-08-08T22:51:00.003-04:00

I'm going to try to make this relatively short. Isaak is doing great this week. Fantastic even.

Early in the week they made another effort to get him off supplemental oxygen, and so far, 5 days later, he's been a little champ.

First off, new pictures: Here and There

Now on to the update.

Here's a bulleted list of Isaak info:

Now weighs 7lbs 5oz.
Off oxygen
Still anemic but his reticulocyte count is improving. There is still a chance he will need a transfusion again and they'll be checking his blood-work again in a couple of days. Hopefully he's bottomed out on the anemia and will show signs of improvement. This makes the fact he's not using oxygen all the more remarkable.
Off IV nutrition (TPN) for now. He's tolerating g-tube feeds really well and if he gets up a couple of more notches, there is a chance he will not need to go back on TPN.
RoP has improved quite a bit. Ophthalmologist was optimistic after the exam on Friday. His eyes have begun maturing and the hemorrhages that were present have begun shrinking. By no means is he out of the woods, but it surely is looking better (no pun intended there).
We might move him to a regular pediatric ward. He doesn't really have any preemie problems right now (apneas and bradys) and Bekka could room-in with him and bring Penny along. Of course, there is a big safety net in the NICU if something suddenly occurs, so it's not an easy decision.
Moving to a regular floor was definitely the plan when we were positive he was coming home on TPN. He would need to be on GI service so we could get TPN training and get his mixture calibrated. Staying there may still help the GI folks assist us in getting him used to bolus feeding (and he might also need TPN if he has any problems over the next few days).

If he really doesn't come home with TPN (double yay!), he will hopefully be getting bolus feeds (bottles and nursing) during the day and then continuous feeds overnight. This will help make sure his system isn't overwhelmed and that he gets enough calories and nutrients. Again, a lot is still up in the air. He is doing significantly better than anyone expected at this point and some small setbacks are to be expected but he is a tough little hombre.

Not that much to report on Penny. She continues to light up her parents' days and is now up to a whopping 6lbs 4oz. Tiny, but much bigger than she was. Big enough for a regular car seat even! We don't have length measurements on either of these little tykes. We'll try to get those soon. She's a spunky little girl (hmm, wonder where that comes from?) and seems to have inherited her mom's sleeping patterns.

Happy Birthday, Oliver!!!

2010-08-05T15:06:00.169-04:00

Two years ago, our lives changed for the better. After nearly 36 hours of labor, Oliver was born via c-section at 3:06pm.

The weekend of August 1st, 2nd and 3rd were tax-free in North Carolina not to mention it was back-to-school time. As a retail store manager, even one who was nine months pregnant, I was scheduled to work. A number of customers offered to help me up off the floor after measuring their child's feet. Several of my "regulars" commented, "Haven't you had that baby yet?" My due date was the 1st and it came and went without nary a contraction. On Saturday the 2nd, I worked half of my shift before heading home as I was having mild, intermittent contractions. They continued, albeit sporadically, on Sunday.

Neil and I headed to bed Sunday night wondering when the contractions might intensify or come at regular intervals. Although we wanted to, we hadn't been timing them. I got up to go to the bathroom - again - around 4am Monday. Nothing out of the ordinary. But as I tried to go back to sleep, the twinges seemed more regular and a bit longer. I pulled my watch out of the drawer of my nightstand. About 30 seconds this time, maybe 45 seconds the next. Five minutes would pass then maybe ten minutes. My excitement grew and I smiled to myself as I envisioned Neil's face when I would say "It's time."

I decided to let him sleep until 6:30am before waking him to tell him. As if he could sense my anticipation (or maybe my fidgeting), he woke on his own around 6:15am. I smiled at him and told him that I thought I was in labor. His grogginess lifted quickly and he, too, became excited. This was the moment we had been waiting and preparing for with regular visits to the OB and classes to learn about natural childbirth. And, finally, it was here!

We waited until around 8am and I called the OB's office to describe the length, intensity and frequency of my contractions. The nurse suggested I come to the office to be checked before deciding whether I should go to the hospital. We grabbed the bag we had so carefully and thoughtfully packed and made our way to the doctor's office to see the midwife.

Four centimeters. Wow. I hadn't guessed I would be that far along towards the goal of 10 centimeters. We got back in the car and drove around the corner to be admitted to the hospital. It was Monday, August 4th.

Our doula arrived later that morning. She had also been our Bradley Method instructor. We walked the labor and delivery and postpartum floors around and around and around and around. All three of us would pause every so often for me to lean into the planter in the middle of the hallway and breathe deeply through the next contraction. I wore my sock monkey slippers and had a blue housecoat over my hospital gown.

My progress was slow. I was still four centimeters when the midwife broke my bag of water to help me dilate. It didn't take long for me to reach six centimeters. And then we walked and walked some more. But progress was still slow. At the next check, I was only seven centimeters and I was exhausted. We had been at the hospital nearly 12 hours.

Our doula had brought me some chicken noodle soup to eat, at some point, sneaking it past the nurses. I wanted to have the energy to push this baby out. The next major suggestion from the midwife was pitocin to help make the contractions stronger and hopefully help me to dilate. Pitocin is evil stuff - right up there with magnesium sulfate. Dealing with labor hadn't been too bad...until the pitocin. It probably didn't help that I had been awake for over 24 hours.

I was proud that I hadn't had any pain medications. I really wanted to have a natural, vaginal birth. But after 30+ hours, I consented to an epidural. Perhaps if I could get some rest and relax a bit, I would finish dilating. When talk of an epidural began, my first request was to turn off the pitocin until the epidural took effect. The midwife smiled knowingly and agreed to half the dose until the anesthesiologist finished his work. It wasn't long before I fell asleep. Neil took advantage of his opportunity for a well-deserved nap.

An hour or two passed and the midwife returned to check my progress. Nine centimeters! We thought we had success until I started having a contraction. The midwife noted that during the contraction my cervix had gone from nine centimeters to seven. It was time to call in the doctor and talk about getting into the OR for a c-section.

The OR was a busy, chilly place. It took longer to get me prepped for the surgery than for the actual surgery to occur. Right before the doctor began to cut, Neil was brought in to sit by my head. He wasn't there but about five minutes when the doctor asked if he wanted to see his baby boy being born. Neil stood up and saw Oliver for the first time. Tears flowed as smiles grew - he was finally here! It was 3:06pm on Tuesday, August 5th, 2008.

It was the longest 34 and a half hours and yet it was the shortest 34 and a half hours. But it didn't matter. We were a family - Mama, Daddy and Ollie.

And two years later, we still are.

Ollie: August 5, 2008 - August 3, 2009

2010-08-03T00:01:00.010-04:00

Smiles...

Curiosity...

Laughter...

Adventure...

Love...

Beauty...

Mommy...

Home

He was beauty and he was light. He was joy and he was sorrow. If ever parents were gifted with a more perfect expression of love, we can only think they must have perished from the intensity.

One little boy who could not talk and could not walk, but spoke unending volumes with his eyes and reached thousands with his story.

That is Oliver.

Our son.

To say we miss you can do no justice to the pain still in our hearts, but everyday we see you in a flitting dragonfly or on the velvety wings of a butterfly. We hear you in the utterance of a kind word and feel you in the gentle breeze.

We know you through your beautiful little brother and tiny little sister.

Most of all, we know you by your love.

Rest easy little boy. Your light is still shining.

Penny loves being at Home and Isaak is Complicated

2010-08-02T19:37:00.001-04:00

First the short update: Penny is doing great.

Really, that's about it. She had her first visit with her regular pediatrician on Friday and a follow-up today to make sure she is gaining weight. She gained 2.5 ozs over the weekend (for a grand total of 5lb 15oz) so we are supposed to just keep doing what we are doing. She is being fairly merciful to mommy and daddy by sleeping 4 to 4 1/2 hours at night after her big bottle. Mostly, she eats, sleeps and goes with mommy to see her big little brother (or is that little big brother?)

Isaak, well, he's doing OK, but his story is, as usual, more interesting (strictly in the Chinese proverb sense, of course). They managed to get him up to 12ml per hour of milk via g-tube on Thursday. They have been holding the line since, as while he's not dumping, everyone feels he's at some borderline state. They have bumped the calories a bit on his feed so they don't have to increase his TPN quite as much. He's getting a total of 3ml per hour of TPN and IV lipids so that's 80% of his calories via g-tube, which is fantastic. Even so his bilirubin has continued to climb a bit at a time. It's not really really high, but it's over 5 so they'll be keeping watch on that. It may or may not be related, but he's also a bit anemic,with a hematocrit (red blood cell) count of 25.8 (30 being normal) and a reticulocyte (immature red blood cell) count of 1.8 (5 being normal). Bilirubin is made up of the remnants of red blood cells and his seem to be going somewhere...like I said, may or may not be related. He's still on very low flow oxygen (50ml per minute). We would not be surprised if that stays the case while he is anemic.

The edema seems to be much better. They cut his lasix course short because he was doing so well and apparently is peeing up a storm. Let's hope that continues. Positive news is always welcome!

A big concern we have not previously shared revolves around his eyes. Preemies are very vulnerable to a condition called Retinopathy of Prematurity, or RoP. As has been their pattern, Penny has shown very little evidence of RoP and nearly has mature eyes, while Isaak has had more difficulty. His right eye is in "Zone 2" of development with "Stage 3" RoP. Not great, but also likely to self-resolve. His left eye is also "Zone 2" and "Stage 3" but has exhibited significant hemorrhaging. The ophthalmologist, while not entirely optimistic, does indicate it's not unlikely the situation will resolve itself. If it doesn't, he may have to have some of the hemorrhage removed from his left eye and possibly have laser surgery. They have been following him weekly and the next update will be on Friday. Outcomes are generally positive with surgery nowadays, but man do we not want to go there. This poor little fellow has seen more surgery in his short life than most people ever do.

So while all that doesn't sound particularly positive, Isaak really is doing well. He can be very alert and loves to be cuddled and to be (dry) fed by his mommy. The little guy is strong enough to actually try rolling himself over nowadays (can't do it, but does try if he's not swaddled).

A Weekend with Penny and an Update on Isaak

2010-07-27T12:14:00.001-04:00

When last we left our intrepid band of preemies, Penny had been discharged but Isaak was having complications and was getting all kinds of workups for infections. I'm happy to report that (as daddy suspected) he appears to have just been very cold. Nothing has grown in any of the cultures, including the lumbar puncture. They will continue to watch the cultures, but so far nada. Now, it's not good that he gets cold so easily and we have no idea why he is having so much trouble regulating his temperature, other than because he's a preemie. It's concerning, but all we can do is keep him well wrapped and check his temp more frequently to avoid a recurrence and hope he grows out of it as he gets bigger.

Today was exciting as he's hit 10ml per hour via g-tube feeds. He has started pooping, but no signs of "dumping" yet. What might be the difference between pooping and dumping, one might logically ask? "Dumping" in this context means that very little of the oral/g-tube intake is being processed. It's essentially shooting straight through the GI tract. What's worse, it may actually pull additional fluid out. So maybe you had an intake of 10ml per hour, but are outputting 15ml per hour. That is not a good scenario and is one of the more common issues with short-gut patients. The challenge is finding that upper limit.

10ml was the main target so that he would be getting the majority of his nutrition and fluids enterally rather than via TPN. Right now, due to reduced fluid intake, he's getting over 70% of his feeds as breast milk. That is good for Isaak and very very good for his liver. His bilirubin counts have gradually begun to drop as he's getting less TPN. As he gains weight, the TPN percentage will go up a bit as his digestive system might not be able to tolerate significant increases in volume just yet. If we can keep him over 50% oral/g-tube intake, he'll be in a good place.

Little guy is still having problems with edema (thus the reduced fluid intake) and started a second 3-day course of Lasix yesterday morning. He was looking quite good in the evening and appears to be excreting a bit more so there is hope he will begin regulating his own fluids shortly. It's not uncommon for preemies to have issues with edema, nor is it uncommon for anyone that has had abdominal/GI surgery - so Isaak is experiencing the old double whammy.

Hopefully, control of his fluid levels will also help his other remaining issue - oxygen addiction - he loves the wall juice. What's weird is how little he is actually getting. They have him on a flow rate of 0.05 lpm - an absurdly low number - but if they try to drop to 0.025 lpm, he starts desatting. It really is crazy. Part of this may be an issue with hematocrit. His numbers are dropping again and they are doing a blood count, including reticulocytes, to see if he is making a reasonable number of blood cells. If he is, the question then becomes: What is eating the mature cells? Why isn't he having a net gain? It may (hopefully is) just be something he has to mature past and only time will take care of that.

So on to Miss Penelope!

How is it having a baby in the house again? FANTASTIC (and exhausting). I don't think Bekka and I will be used to just picking her up and squeezing her (gently) anytime we want for weeks yet. After watching her grow from that tiny little newborn to her current petite, but relatively huge size, and only seeing her for a few hours a day, it's wonderful to have her there all the time. We have discovered that if we want to get any sleep at night, we have to feed her a big bottle of mom's milk fortified with extra calories from formula. Otherwise, she wants to feed about every 2 hours and that is tough on mom and dad. Nursing is hard work for babies, and while she is good at it, she just can't get as much food that way before she's tuckered out as she can with a bottle. With time, she'll get better and better at nursing.

That's all for now.

Penny goes Home! (and Isaak has a scare)

2010-07-24T11:12:00.000-04:00

In the biggest news of their short lives so far, one of the little monkeys has made it home. Penny decided a couple of weeks ago that, yes, she was about ready to go and pulled her own oxygen off. It took a bit to get her to completely oral feeds, but she got there this week. Mom roomed in with her a couple of nights and all went well, so here we are. Her first night was a little challenging as she decided to wake up a couple of times - and apparently has learned to cry finally. Mommy and I are a little tired but very happy (nay ECSTATIC) to have our little girl at home.

Proof is in the pictures!

Thanks to Amanda M. for getting the great pictures at UNC. We silly people had forgotten our camera. You will note in the pictures that her first outside world stop was the cafeteria at UNC - we didn't quite get to leave when we wanted as little brother decided drama was in order (maybe to keep his twin nearby?)

So Isaak...he had a rough evening yesterday. In the late afternoon, probably around 5, I noticed that his heart rate was really low. It often goes low when he's sleeping, but this was around 130 rather than the 140 that is normal. I mentioned it to the nurse and she immediately took his temperature and it was way too cool. He also wasn't really moving much at all. Next thing I know, there were 6 nurses, nurse practitioners and doctors in the room, all while I was standing there holding Penny. Poor mommy wasn't there because she was getting Penny's car bed ready out in the parking deck (little girl is not quite ready for a seat) so I had to text her what was going on.

First order of business was a warmer to get his temp back up and then they took a bunch of cultures looking for infection. We won't know anything about that for 3-5 days. Unfortunately for the little guy, one of the cultures they decided to take was via lumbar puncture. We weren't terribly keen on that particular procedure, but the docs indicated that one infection that can cause a temp drop rather than a fever is meningitis and that we would want to catch that right now rather than wait. One of the other infections that can cause a drop is sepsis, so that's just scary as crap all the way around.

On the positive side, he either responded well to the antibiotics or to the warmer and by the time we left (11pm - 8 1/2 hours after Penny's "discharge") he was acting much better. He was wiggly and vocalizing so we are crossing our fingers this is just a blip.

We haven't been to see him yet today, but the nurse reports that he is pretty active this morning and was fighting back during assessment. That's a good sign. Let me tell you, this whole thing points out how important it is for a parent to know their child's normal behavior, even at this early age.

Exciting Day

2010-07-19T23:35:00.001-04:00

Since we all know that the main reason ya'll check in so regularly is to see new pictures, I'll let you know that you can find some here and there. =)

(Edit: And now we have one more set. These were pictures taken almost 3 weeks ago by Nurse Katy at WakeMed when Penny and Isaak moved in together. It's amazing how cute they are and also how different they look! -Neil)

Now on to the update...

Isaak is "eating" again! His g-tube feeds began today around 11am at 2ml per hour continuously. He's been tolerating them well thus far. I think he's still feeling hungry though. Every hour or so he gets pretty riled up for around 5 minutes then settles down again. Sometimes his pacifier helps; sometimes holding him helps. Even though he's in the NICU, he is just a baby with baby needs.

Other exciting news in Isaak's world: poop! While I was changing his diaper this evening, he squirmed and grunted and pooped...right in the nice, clean, fresh diaper. But his nurse and I were so excited we just about did a jig right there. This is great and hopefully there will be more to come.

Penny is nursing well and we are having a sleep over of sorts tonight. They had parent sleep rooms on the floor with a pull out bed and spots to hook up monitors, Neopuff, suction, etc. This will allow me to nurse Penny throughout the evening and night. Eating and gaining weight are really all she needs to master in order to go home. Assuming she does well, we'll introduce her to bottles tomorrow or the next day.

That's your quick update for today. Right now Penny's grunting for me. Happiness!

The Latest and Greatest from the Land of Light Blue

2010-07-18T23:00:00.001-04:00

Today we have a mixed bag of news to report but overall things are going well. The only real negatives are Isaak's retention of fluid and the fact the little guy hasn't gotten to eat yet. It had really seemed that today would be the day they would resume light feeds via g-tube, but it was not to be. During his evaluation this morning, the surgeon thought he was a little too distended in the abdomen, so the little guy is still NPO. He received a dose of Lasix this evening and everyone is hoping this helps him finally get rid of the extra fluid he has carried since surgery and by extension make it more likely he eats tomorrow! The worst part for mommy and me is that he decided today was the day he would get mad when he was hungry. You can tell he is feeling much better and is more energetic. He was using this new found energy to get very angry and squall away if one did not keep the paci firmly in place. It breaks your heart, it really does.

In very positive news in Isaak's world, he spent the entire day sans supplemental oxygen. He has tried this a couple of times before but it sure seems that this attempt is more serious. It would be a big milestone if he can keep it up. His sister is entering her second week without supplemental support.

Miss Penny is doing quite well. Bekka is attempting to nurse her 2-4 times a day. She is now consistently eating more than 50% of the required feed volume with each attempt and sometimes eats the full amount. What she doesn't eat they make up for via the NG tube. This is really her last milestone. Once she is feeding exclusively by nursing and/or bottle AND gaining weight, she'll be ready to try the car seat test and hopefully begin living with mommy and daddy. Doesn't seem real in some ways. This is my 1lb 7oz girl here!

Speaking of weights, they both continue to trend up. Penny has plateaued a bit, but was at 2551g last night (no weight yet this evening for either of them). That translates to 5lb 10oz, almost 4 times her birth weight. Isaak's weight is in flux. He weighed in at 2750g last night (6lb 1oz) but that number is likely way too high due to the fluid retention. We'd really like to see him drop about 100g at tonight's assessment.

I know we haven't posted much in the way of pics lately, but we have a ton and I will try to take care of that this week. That is all to report for now. Hopefully the next time one of us posts an update, Isaak will be progressing nicely with his feeds.

Penny and Isaak - Together Again (again)

2010-07-15T16:50:00.000-04:00

No pics available, but Penny was transported to UNC this afternoon. Thanks so much to our friends at WakeMed for taking care of our little guys for so long. We wish we were able to finish our stay there, but little girl has to nurse and Isaak has to be where he is to get the GI care he needs. We had a wonderful stay and could not have asked for kinder, gentler care of both our babies and ourselves.

In big news, Isaak was successfully extubated today. He wasn't really all that happy about it and was initially on a fairly high CPAP pressure and O2 level. (Just a nasal cannula was not going to be sufficient for him given the issue he was having riding the vent). However, when the surgeon came by for a visit, he suggested they remove the vacuum tube from his esophagus and vent his stomach as needed through his g-tube.

That did two things: 1) Royally ticked him off and 2) Took a fairly large obstacle out of his throat. Since then, they have been able to gradually reduce his O2 levels. They also restarted caffeine to get him through the next few days and assist with the breathing and heart rate. We'll be watching for improvement.

Otherwise, he is doing pretty well. His abdomen is a little swollen and red, but the surgeon was not overly concerned and indicated it looked normal. After all, he's had pretty major slicing and dicing down there. Now we anxiously await the first bowel sounds so that he can begin getting limited amounts orally. He's a tough little guy.

Quick Update

2010-07-14T14:53:00.001-04:00

So Isaak is doing pretty well today. He is still on the vent and they will not be trying extubation until tomorrow. They were hoping for today but he is simply spending too much time riding it (letting the machine breathe for him). I'm sure he is tired and very sore so this is understandable. He received a red blood cell transfusion today in hopes that it primes him for coming off the ventilator and helps him kick the lingering anemia problems he's had.

In Penny news, she is proceeding to plan. It is also looking likely she will finally get to join Isaak at UNC. This makes daddy sad because she won't be 5 minutes from work anymore, but it is fantastic for mommy as she works on getting the little guys to nurse.

That's it for now.

Isaak's Follow-up Surgery Open Post

2010-07-13T15:50:00.002-04:00

Hello everyone.

We will be updating this post as the day progresses, so if you are keeping the blog open, just remember to refresh your browser once in a while.

3:50pm: He's out and looking good. We met with the surgeon about 30 minutes ago for his report and then visited little guy. Mom's still in there while I step out to update the wider world. His bowels all looked very healthy and were already showing signs of growth and change. Due to some adhesion, they could not really measure the total length, but they only needed to trim a few millimeters from each end to get to the healthiest tissue to reconnect. That is a best-case scenario! The Broviac was placed in an "external" jugular (not the big one from the head). The surgeon was very happy with the location and placement. G-tube surgery went fine and they were able to use the incision from his initial surgery for both the reanastomosis and the g-tube, also good news. They examined his liver while he was open, and it appears to look like a liver for a baby that has been getting TPN for 2 months. Not good, but not terrible. Hopefully, he will be able to begin feeds soon and can begin getting substantial calories from enteral feeds. If he can get 50% of calories from milk, that greatly reduces the risk of liver damage and long term complications. It will be several days before we really know how well he'll be able to feed short term and a matter of weeks before we understand the overall trend and prognosis. So, all in all, things have gone as well as we could have hoped. Now we wait and let him heal.

1:30pm: Something to report! Isaak's nurse just called with an update from the surgery team. They have completed the Broviac and the reanastomosis and are beginning the g-tube. That should take about an hour. He'll then have roughly an hour in recovery after that, so hopefully we get to see him back upstairs by 3:30 or so. No report on what was found yet - won't have that update until post-op.

1:15pm: Nothing to report. We are clearly hoping this is good. He's been back about 3 hours now and we are a couple of anxious parents. Just took a walk around the hospital locating all of our dining options so we don't get burned out like we did last time. Thanks for all of the kind words of support!

11:10am: Our little guy is in surgery now. He was taken back about an hour ago and the plan is to insert the Broviac Catheter first followed by the reanastomosis and g-tube. It's a lot for Isaak to go through and we are probably looking at a 4-5 hour total surgery time. The anesthesiologist suggested that he be intubated at least through tomorrow due to the stress and the ~~limits to the amount of narcotics they can give a preemie for pain~~ ~~control~~ ~~(They can give more if he is on a vent).~~ OK, so I misinterpreted the conversation and Bekka clarified. It's true they have a limit to amount of narcotics they can give for pain, but the main reason for intubation was to allow full-on general anesthesia. Theoretically, just the abdominal surgery could have been done with a caudal anesthetic (essentially a spinal block). Doing the Broviac nixed that option as they are operating above the waist. He did really well when intubated last time and came off with no problems so we are hoping for a similar situation this time. They should update us as they finish each procedure and we will try to get something posted.

The only constant is change...

2010-07-13T08:51:00.001-04:00

Isaak's surgery has been moved up. We're on our way to the hospital now. He'll likely go back around 9:30-ish.

Surgery Day is Here

2010-07-13T00:58:00.001-04:00

Today is Isaak's big day. The little fella is scheduled for 3 surgical procedures.

Reanastomosis of his upper and lower intestines and repair of his ostomy
A Broviac Catheter (smaller version of a Hickman Line).
Placement of a g-tube, likely with a Mic-Key button

Yes, it's a lot for such a tiny guy to go through but there is a reason for it all.

The reanastomosis is obviously the big one. An upper and lower GI contrast dye study was conducted today and the results were encouraging. Isaak had no visible strictures. Now the big question is will everything be healthy when they open him up. They may have to do small resections at the ends of the remaining intestinal tissue to make sure they are connecting the healthiest, most viable tissue back together.

The Broviac Catheter will allow the continuation of parenteral nutrition and is typically easier to maintain, longer lasting and with fewer infections than the PICC lines they have been using so far. It is almost certain he will need to continue parenteral nutrition for weeks to months to help him continue to grow while his gut adapts and develops.

The g-tube. That's a tough one. We really struggled with that decision as waves of memories of Ollie came crashing down with each discussion. In the end, conversations with doctors at both UNC and WakeMed helped convince us it was the best course for Isaak. With a g-tube in place, they can feed him continuously and help encourage bowel development, but without the potential negative assocations that might occur with the use of an OG or NG tube for an extended period. He'll still be able to eat orally, but they can increase the quantity and spread out the feeds using the g-tube. All in all, he should get home earlier this way and have a better outcome to boot.

If we are very lucky, the g-tube combined with oral feeds might mean he can go home sans TPN, but it's not likely. He will most likely be getting a mix of enteral and parenteral nutrition for some time to come. Gradually, his gut should adapt and he'll go off the TPN. This would be good for his liver as extended use of parenteral nutrition places a strain on multiple organs.

Surgery is scheduled between 10 and 1. Really, it's like the cable guy or something. The surgeon has several smaller cases he wants to finish up in the morning before taking on Isaak's. He'll be in good hands.

We will have a single running post tomorrow to keep the world up to speed as we know something. He was sleeping very peacefully this evening so hopefully he gets a good night's rest. Something I'm about to try to do.

Penny is doing well. We are trying to get her to UNC so Bekka can nurse. The more she can do that, the faster Penny will get home. She really is so close. She needs to desat a little less and move to completely oral feeds.

Both of the little guys seem so big now. Isaak cracked 2500g tonight (5.5 lbs) and Penny is just under 2400g (5lbs 5oz). He's 17.5 inches long and she is just over 16.5. It's amazing to look at these chunky little monkeys and think about where we were 73 days ago. We were so worried about getting him to even 1800g a few weeks ago. Those guys at WakeMed did a great job of fattening him up!

Not Quite According to Plan

2010-07-11T12:13:00.001-04:00

So UNC has no room for Penny right now. Looks like we will have babies in two places again. Not sure how long that will last but we are certainly hoping for as short a time as possible.

Isaak is at UNC now and we are heading up to see him.

Improvements and Departures

2010-07-09T23:20:00.000-04:00

Well, let's start with the good news, shall we?

Isaak's transfusions helped him tremendously. His skin tone became nice and pink again. His breathing improved. His temperature and its regulation also improved. And his blood tests? They grew nothing - no bacteria and no fungus. CRP levels dropped. So they've stopped the antibiotics, antifungal and caffeine. He is on heated and humidified oxygen (at 21% or room air concentrations) at a flow rate of 1 lpm. (As Neil would say, Isaak likes the "wall juice.") He also ditched the isolette (again).

Penny remains sans respiratory support. And it is SO much easier to get her out of the crib. She has occasional desats but usually recovers quickly on her own. A few times she's been given blow-by oxygen (another phrase we learned with Ollie and had hoped never to use again.) They've slowly gotten her back to full feeds (about 45ml) - her first full feed will be given tonight at 11pm. And we've been working on breastfeeding. Each time she does better than the last time. It's not an exact science figuring out how much she's gotten, but we're fairly certain that she got about 40ml when she nursed at 5:30pm today. On the whole, though, she's doing really well.

Isaak's surgery is Tuesday. While we're excited that he's going to get reconnected, it's scary to think of him going under the knife...again. Before Isaak was back-transferred to WakeMed, the surgeon mentioned that we should think about having a g-tube put in at the same time as the reconnect. With a g-tube, Isaak could get continuous feeds overnight. (Gee, there are a couple more phrases we'd hoped to never use again.) The goal of doing continuous feeds is to maximize the adaptation of the bowels.

In preparation for his surgery date, Isaak will be transferred to UNC on Sunday. And, if there is space available, Penny will, too. We are very sad to leave our ICN family at WakeMed. This was a hard decision, but things will be stressful enough without the added stress of children in different hospitals.

Speaking of hard decisions and stressful situations...

It's coming. Ollie's first angel anniversary on August 3rd and what would have been his second birthday, August 5th. Neil and I have both been talking about where we were this time last year. July 4th of last year we were at the ER with Oliver and I had just broken both elbows. July 7th, 8th and 9th of last year we decided (again) that bipap was not for us and left the PICU at Duke. July 19th of last year we made our last trip to the ER with Ollie - we knew our time with him was growing very short. And August 3rd of last year...he was gone.

We love you, Ollie Bear! And we still miss you terribly.

Two Things

2010-07-06T10:48:00.001-04:00

1. Something is wrong with Blogger/Blogspot right now and comments aren't showing up. A few have been made recently that just aren't there. This seems to have occurred in the last 48 hours or so as there are thousands of entries logged on a message board at Google. Feel free to post, just don't be surprised if it's not there. Hopefully all will show up again when they straighten it out.

2. I completely neglected to mention a very important piece of information in the last post:

Isaak cracked 2 kilos!

His last reliable weight was 2070 grams. He was 101g heavier (2171) last night, but we are pretty sure that is not entirely correct as he was weighed in the isolette vs. the scale (yes, he is also back in the isolette as he was unable to keep warm...another sign of his anemia and possible infection). If we can get the little fella well, this should mean that surgery will be on schedule next Tuesday.

My Son is a Vampire and my Daughter Eats via her Scalp...or Just another Day in the Life of a Micro-Preemie Parent

2010-07-05T22:15:00.004-04:00

So the last few days have been challenging. The slightly macabre post title really doesn't even capture the half of it. In the back of our minds, we sort of had the idea that things were sailing along too smoothly. The next big bump appeared to be Isaak's ostomy reversal (next week if you can believe that!). We dared to hope that all was well. The twins had other ideas. The main one?

Scare the crap out of mommy and daddy.

So we don't know if we are out of the proverbial woods with them yet, but here is a quick rundown of what has transpired since Thursday:

Thursday afternoon, it was becoming pretty apparent that Penny was not feeling well. She was not complaining during diaper changes or assessments - usually she cuts up like crazy - and her little belly was starting to look distended. You can see now that we were suddenly terrified (absolutely, unbelievably terrified) when thinking about where this could be headed. Yes, the very real possibility that our little girl had NEC reared it's ugly, cobra-like head.

X-rays showed there were large gas bubbles in the intestines but no free air. All oral feeds were stopped and TPN was ordered up. The last thing you want to do in a NEC case is keep shoving food in there and complicating things even more. Repeat X-rays were carried out over the next couple of days. Nothing that could be interpreted as NEC showed up, and Penny continued to have good bowel sounds. Eventually, she passed all the air and they began very low volume feeds on Sunday. They will gradually ramp her up during the week to full volume while monitoring her response very, very closely.

So what was this episode? Is it really resolved, or will it return? The answer to both of those questions is, unfortunately, "No one knows." They think it might have been a reaction to human milk fortifier (HMF). She has been getting this since about week 2, but feed volumes have really been bumping up lately and so it might have crossed some comfortable threshold.

We wait with bated breath as she moves back to oral feeds. They are going to withold HMF and just feed her mommy's finest until her volume is all the way back to max. We are by no means out of the woods but at least positive progress has been made. Cross your fingers!

In the good news vein, she has spent the whole day sans supplemental oxygen or flow. Her sats have stayed in the upper 90s and she has been a little trooper.

Oh, the "eating via her scalp bit"? Penny is a very bad "stick" when it comes to placing IVs. (Remember they were never able to place a PICC line in her.) After 3 IVs in 3 days had to be replaced, they resorted to a scalp IV. Apparently there are "lots of juicy veins up there." So far, so good. She's been happier and her IV hasn't acted up. Here is her IV/Hair Bow (via cell phone cam, so not the greatest):

On to Isaak. Little guy is getting a transfusion today and tomorrow and is on two different antibiotics, an anti-fungal and they resumed caffeine.

Not yay.

He had been just cruising along gaining weight and flirting with nurses. Then on Saturday he had a low hematocrit, low white cell count and low(ering) platelet count. He wasn't really acting up, but wasn't fully himself. Another set of blood work this morning confirmed the trend. Even lower readings were recorded AND he had slightly elevated CRP levels (C-reactive protein). At the same time, he was beginning to have more bradycardia and apnea events.

All this likely points to an infection. According to the doc, the blood work is behaving more like fungal infection, but given his history and the recent changing of the PICC, she would suspect bacterial. Changing PICCs can release bacteria into the bloodstream even though they do everything they can to avoid it.

So he probably has something.

Maybe.

It could also just be stress and anemia (which he certainly has).

Pending cultures, they will continue the medication. You do NOT want your preemie to get a full-blown infection. Their immune systems just aren't up to it and prophylactic antibiotics can head off major issues. The caffeine already appears to be reducing his apnea and bradys and the transfusions should help bump his energy level up. We really want him to be healthy next week!

To add to the stress on his little self, he has also gotten 5 immunizations over 5 days and it's possible that those are messing with his body and all the readings. He needed them and was doing fine when they began but there is a reason they only give one a day to these little guys! (You'd get them all at once if you were a normal 2 month old...and you would do just fine). Penny is on day 4 of 5. They started on the same day, but had to suspend hers due to her difficulties. She seems to be a-ok so far.

So that is all the news that is fit to display via photon emissions. We'll hopefully have another (positive) post up sooner rather than later.

Penny and Isaak - Together Again

2010-06-29T23:15:00.000-04:00

So today Isaak made a big stride and is now living with his big sister in their new house:

You can catch a few more extra cute pictures in our photo albums.

If they were still in utero, I would have been 34 weeks pregnant today. Instead, I'm finding it hard to believe that they are going to be 2 months old tomorrow. In any case, Neil and I are so excited to see them together in their crib.

Now that they are 2 months old and have gained a bit of weight, their immunizations will start. To minimize the chance of reactions, they'll only get one shot per day. Since there are five shots due at 2 months, it will take five days to get them all. The five they will be getting are polio, hepatitis B, Hib (influenza type B), pneumococcal, and DTaP. Speaking of vaccines, it is recommended that adults get a pertussis (whooping cough) booster - especially if they spend any time around infants and children.

Penny has been doing very well "practice" breastfeeding. Today she managed to "nurse" for about 30 minutes. And she even ate about 2 mls of milk! She's got the process down - latching on, suckling, swallowing and remembering to pause and breathe occasionally, too. I'm so proud of her. =) She'll still get most of her nutrition via her ng tube. In fact, she was bumped to 41 mls every 3 hours with 5 packs of HMF. Her weight tonight was 1956 g (4 lbs., 4.9 oz). Be sure to look for her chubby cheeks and double chin in the new photos.

Isaak's weight gain has continued as well. In fact, last night he hit the magic number of 1800 g - the minimum amount in order to do his surgery. Tonight he dropped to 1795 g (3 lbs., 15.3 oz). I wouldn't be surprised if he surpasses the 2000 g (2 kg or 4 lbs, 6.5 oz) goal before his surgery in two weeks. Isaak has also gotten to do a little bit of practice breastfeeding. He's not as adept as his sister, but as we've seen over the past few weeks, he'll catch up with her in his own time.

Both babies are doing well respiratory wise. Isaak's still at 2 lpm and room air (21% oxygen). Penny's usually somewhere between room air and 25% oxygen and is now at 1.5 lpm. They've both had many fewer A's and B's and almost always "self resolve" when they do. But mostly they just desat every now and again. For Penny, actually, it's about every 3 hours...when she poops. One of her nurses nicknamed her Poopsy Penny. Occasionally I'll call her Princess Penny Poopy Pants.

She's gonna love that story when she's 15. =)

8 Weeks, 2 Days and Growing Like Weeds

2010-06-27T23:28:00.000-04:00

Well, it's been almost a week since the last post, so I figure the twins' adoring public deserves another update. Overall, it's a happy thing we haven't posted as the news is almost all positive. So the old "no news is good news" adage applies here. Mostly, I figure you want more pictures, and we have those right here!

Isaak finished up his course of Epogen this week, and boy what a difference it made. He had been doing quite well from a respiratory standpoint but began showing signs of breathing difficulties before they started the treatment. He was also pale as a ghost. They didn't want to transfuse because of the various risks associated with the procedure. Almost as importantly, severe anemia tends to jump start red blood cell production and a transfusion can stop that process cold. They began the Epogen course and hoped that it would kick in before a transfusion was absolutely required. It appears to have worked. They won't do another reticulocyte or hematocrit count for a couple of days, but visually, he is like a different baby. He spends most of his time at room air concentrations with about 2 lpm of flow. With luck, they will begin turning down his flow a little bit at a time.

The biggest concern with Isaak has really been his weight gain (or lack thereof). He has been getting a mix of oral and IV nutrition but had nearly stopped gaining weight. You could see that he was longer, but just wasn't getting much heavier. Each time he would gain a few ounces, he'd give back half of that in a couple days. This was likely caused by a combination of the "dumping" he was experiencing from his ostomy and possibly the anemia (the body has to work harder to cover for the low hematocrit). Even after the dumping improved dramatically he still wasn't gaining as quickly as needed to hit his targets in preparation for the surgery on July 13. Remember, they really want him at or as close to 2kg (4lb 6.5oz) as possible. The doctors and NPs spent quite a lot of time brainstorming over the weekend and made several adjustments including lowering his oral intake to allow for increased TPN.

It appears to have worked like a charm.

Little guy has gone from 1500g (3lb 5oz) two days ago to 1720g (3lb 13oz) tonight. His ostomy output is now very, very good. After the first night of gain, we all held our breath as we were afraid it was a fluke, but it's occurred two nights in a row. He's not puffy at all so no one thinks it's just water weight. The TPN is doing it's job right now, but of course, we hope that once his ostomy is repaired, they will be able to dramatically reduce the TPN quantity. There are many complications resulting from extended use of parenteral nutrition. The good news for him is that getting any oral food at all has been shown to have a really good protective effect on the liver and other organs.

Penny's biggest challenge has certainly not been gaining weight. The little piglet (or piglette, as her mama likes to call her) is now getting 38ml of breast milk per feed and weighed in at 1841g (4lbs 1oz) tonight! Her primary issue has been breathing. She'd been outpacing Isaak for so long, but took a slide early in the week. They ended up bumping her flow to 2 lpm (from 1 lpm a couple of weeks ago). The concern was that even at the increased flow rate, she was still needing between 28 and 30% oxygen. That is not a particularly high concentration, but we really want to be weaning them off all respiratory support. The solution was a dose of Lasix. She had begun to look puffy and edema can cause major issues with breathing since the lungs are one of the first places that fluid tends to go. After the dose, she lost almost 100g in water weight and then proceeded to get right back on track with what looks like real, solid gains.

Oh, I almost forgot, if you haven't cheated and looked at the pictures first, Penny is in a big girl crib! No more isolette for her. They began having a hard time keeping her cool enough so early Sunday morning she got a bed change. If Isaak gets a little bigger and demonstrates he can also regulate his body temp, he'll join her soon (literally, the little guys will be hanging out in the same spot for the first time since they were born).

Growing, growing, growing!

2010-06-21T22:31:00.001-04:00

They keep on growing! As of tonight, Penny weighs 1680 grams (that's 3 lbs, 11 oz) and Isaak is 1460 grams (3 lbs, 3 oz). Little Miss Penny is now a half pound bigger than her brother!

Penny's practice breastfeeding has been going very well. She's been a very noisy eater since she is trying to latch on and suckle with a feeding tube in her mouth. I've affectionately named her "Piglette" because of the slurping! To help her become a more effective eater her nurse removed her orogastric tube and replaced it with a nasogastric tube this evening. We'll find out tomorrow if she will keep Piglette as her new nickname.

Both babies are on 2 liters of flow on their vapotherm. Isaak is usually at room air (21 percent oxygen). Penny varies from 23 to 28 percent oxygen. She was just bumped to 2 liters today in hopes that they could wean the amount of oxygen she needs and it seems to be working so far.

Isaak was on the Elecare for less than 24 hours as his output was much higher on the formula than on breast milk. Since he's been switched back to breast milk, his output has been anywhere from 9 to 13ml every 4 hours. That's still a little higher than they would like for it to be but it's much better than the 23ml of output he had with the formula.

That's all for now. Hopefully we'll get some new pictures up in the next few days.

TV Star Twins

2010-06-18T22:11:00.001-04:00

Good Evening Friends and Family.

The last few days have been interesting for ourselves and for the twins. Both are continuing to grow, albeit with some challenges. If measurements are correct, Penelope is now up to 1580g (3lb 8oz) while Isaak is at 1460g (3lb 5oz). Little girl is eating like a champ and is doing well during "practice" feeding with Bekka. Once she no longer has an OG tube, I don't think there will be a problem with oral feeds. She had a bit of an apnea scare that required neo-puff assistance today, but it was short and she's been doing great since.

Isaak is gaining weight, but is also having additional difficulties the last few days. We do not know if it's due to his anemia or something else, but the volume of fluid out of his ostomy has increased and has also been less processed. All involved hope this is a very temporary development and that he is not going to have further complications in an already complex young life. He was switched to a formula called EleCare this afternoon instead of breast milk in hope that it is more easily digested. If this is due to anemia, let's hope the Epo kicks in sooner rather than later. He's also had to have his flow rate turned up on VapoTherm. In this case, our anemia nemesis is definitely to blame.

In other news (literally!), Bekka and I were interviewed by local station WRAL today. They were doing a story to highlight Father's Day and the hospital ICN staff recommended us for an interview. We discussed the loss of Oliver and the joy of having the twins. Renee Chou did a fantastic job and it really is a nice piece. Please enjoy below (and maximize the image for near-HD quality!). Let me tell you they are photogenic little guys and there are beautiful shots of Ollie.

3lbs of Cute

2010-06-17T00:10:00.000-04:00

...well, really a little more than that.

Both of the little guys have decided to go on a growth spurt the last few days. Penny finally surpassed her brother (having the advantage of her full intestinal tract and all). She is sitting at 1450g, or 3lbs 3oz while Isaak is at 1420g, or 3lbs 2oz. Penny has well more than doubled her birth weight of 650g and Isaak is working on his (780g), but has a ways more to go.

It's not all fun though. Today is a good news/bad news sort of day. Weight gain is good. Respiratory problems are bad. Maybe not BP oil spill bad but not good.

Isaak made it 2 days with no respiratory support but has decided to backtrack substantially and is now back on the vapotherm. In fact, the little fella is receiving a higher oxygen concentration than he was before coming off. He's also experiencing significantly more and higher severity apnea and bradycardia episodes, especially today. Scary? Yes. "Normal"? Maybe.

Two things are going on here: The first is simply that his hematocrit is likely fantastically low. It was down to 20 a couple of days ago and might be lower now. He's making his own red blood cells but apparently not enough to fully re-supply himself. Secondly, he appears to have developed a case of very dry and very thick secretions. Why? Who knows. He spent some time on oxygen from the wall (which is bubbled through water but not heated like the vapotherm). This might have dried him out. The vapotherm seems to be loosening things up a bit and the nurses are getting a lot of boogies out. His right nostril was stopped up or swollen enough they they could not get a catheter in to lavage or suction. Hopefully the swelling will go down overnight as they leave that side alone.

What are they doing to help him? Well, besides vapotherm again, they were finally able to figure out how to get enough iron in his TPN to begin Epo shots tonight (he's probably getting the first one as I type this). A transfusion was considered multiple times, but there are risks associated with those AND they would have had to stop all oral intake. It's very important that his intestines stay engaged and working right now so they decided to hold off on the transfusion in the hopes of trying epo. We would have liked to have seen something done a bit more aggressively, but these guys are so delicate and there are so many potential reactions to treatments, it's always a balancing act. The epo did wonders for Penny. It's a 10day course but hopefully we will see improvement in his situation fairly rapidly.

Something to remember here: These guys are both doing fantastically well by preemie standards. Ebbs and flows of condition (esp. respiratory) are to be expected. It's a little disheartening of course, but you learn to expect it and try not to dwell on it.

Penny is doing better breathing every day. We hope tomorrow brings even more improvement. She certainly has spells of A's and B's, but is growing more stable. The little princess might be off all support before long!

That's it for now. Oh, there are new pictures up. Click on Ollie up to the right and you'll see a new album. It's amazing how cute the little guys are getting ;)

G'nite.

Update on the Babbies

2010-06-13T00:37:00.000-04:00

Both of the little monkeys were doing pretty well tonight. Get this: Isaak is now off all breathing assistance. Will this last? There is a good chance it will. He tried to go off a couple of weeks ago but couldn't quite hack it, however, he has been doing fantastically well from a respiratory standpoint and they finally decided to try again.

He's up to 4ml per hour on his feeds and is processing everything well. They are trying to get the right balance of oral feeds and TPN via IV that will help him pack on the ounces but not provide too much fluid. If they give him too much total liquid, they are worried that it could lead to pulmonary edema and we don't want that! If weight gain really becomes a problem, they will have to back down from the oral feeds and increase the IVs. We'd prefer not to do that as having a good balance helps to minimize the risk of complications and liver damage.

Penny weighed in at 1220g tonight and Isaak at 1280g. He's been up and down a bit, so we are hoping he will stay on an upward trend as he really needs to be between 1.8 and 2.0 kilos prior to the ostomy repair surgery. He looks *great* right now, with pink little skin and is just generally really active.

Penny had another pack of HMF added to her feed (that makes 5). She is doing OK from a respiratory aspect but her little brother really ran right past her. It appears that the epo might be kicking in though, as she has been running at 25% O2 the last couple of days (vs. the 30+ she's been running the last two weeks). Little girl decided she didn't want mommy and daddy to leave this evening and had a moderately long but not very deep brady and desat spell. Since the events mentioned in the last update, she's been *much* better overall (no desats to the 20s or neopuffs readied.) If the epo is successful and she continues the steady weight gain, the spells should start disappearing soon.

We'll try to get some pictures up before the end of the weekend.

People Can Be Awesome...

2010-06-11T00:12:00.006-04:00

You know what's cool? Getting a freezer full of food:

You know what's even COOLER! (all puns intended):

(Be sure to click "Read More")

Getting a freezer to put it in:

Many thanks to Glen and Lindsey Newsome and the kind folks at Antioch Baptist Church and our good (great) friends Dave and Amanda Milloway. This is a pretty unbelievable gift and certainly physically the largest gift we've ever received. The only way we could think of to adequately say thanks was to put this up on the most public forum we have available, so here it is.

The freezer and it's contents are currently being stored in Dave and Amanda's garage, but based on some measurements, I think we actually will be able to squeeze this in our storage room. (Hooray!) Not only is the food going to be incredibly helpful during this time when we barely have enough hours in the day to shower and sleep, much less cook, but Bekka now has a place to store milk for an extended period. She's doing a pretty good job of filling up WakeMed's freezer, let me tell you.

The freezer wasn't the only large gift. We also received a substantial donation from many others sneakily arranged by Dave and Amanda. We have such unbelievably generous friends. Financially, yes, but even more so with their time and their love.

Bekka and I never envisioned being on the receiving end of such generosity so soon after Ollie passed. We'd planned to BE the ones helping others, but sometimes the universe throws you nothing but curve balls and you have to close you eyes, swing, and hope you make contact. None of this was supposed to happen nor was it even remotely expected, but it's where we are. Gestures like this help us all see the good in humanity and demonstrate faith and generosity in a very tangible way. You all have added lightness and warmth to a period of our lives that has had more than it's share of dark moments. Even if we don't know you and have never met, just know that we are incredibly grateful and moved. You will be in our thoughts and in our prayers of thanks for a long time to come.

Thank you.

Isaak and Penny will be blessed to know such wonderful people and are already blessed just to be in the same world.

Isaak is back at WakeMed

2010-06-08T20:31:00.003-04:00

So after much discussion with many doctors, and after hours of agonizing between ourselves, Bekka and I made the decision to move little guy back to WakeMed. That transfer occurred today and he is now ensconsced in an isolette right next to his sister. We are, of course, ecstatic to have them together again and close to home. It was tough being daddy and not being able to easily see my little guy whenever I wanted, and mommy had a really difficult time being in Chapel Hill and not seeing Penelope every day. Their nurses at WakeMed were almost as excited as we were to see him again and that was very touching. It's still scary when you do this type of transfer on a baby that is so small and delicate, but we felt it was the right thing to do for us and for Isaak. Now we wait and watch them grow (together!) and hopefully stay healthy.

We must give many thanks to the doctors and nurses at UNC. Their efforts saved his little life and they have been caring for him well these last 2 1/2 weeks. Isaak isn't done with UNC, of course. He is tentatively scheduled to have surgery on Tuesday, July 13 to repair his ostomy. He'll probably be transferred back to UNC a couple of days before that and he will be there 1 to 2 weeks for recovery and GI services as they calibrate his TPN levels and feeds before coming home.

Of course, to complicate this, if Penny stays on schedule, she will probably be coming home right about the same time. Luckily we've no shortage of volunteer grandmas, aunts and friends willing to step in and babysit. Funny that.

They both had pretty good days. Isaak's was perhaps a bit better. As mentioned in the last post, Penny is experiencing anemia right now and she's been having a few more cases of "A's and B's" as the nurses call them (Apnea and bradycardia episodes). She had a couple of deep de-sats while we were there this evening. No neo-puff was needed but it was pulled out. That isn't like her at all so they'll be keeping an extra close eye out. She really hasn't been herself today - much more lethargic than normal. One thing we keep telling ourselves is this is a process with steps both forward and back. They are only 31 weeks gestational age as of today and that is pretty tiny. Little girl has also been off caffeine for about 2 weeks, which is significantly earlier than normal so she's been way ahead of the curve. We'll see how this goes.

In other news, Grandma (Bekka's mom) arrived from Oklahoma today. She couldn't wait any longer to see the babies again. She'll be with us through Saturday. (Well, I say us, but really with the little ones :)

That's all the news that is fit to print for now....

Penny and Isaak - June 6/7 Update

2010-06-07T06:30:00.006-04:00

First off for the fun stuff...NEW PHOTOS!

Now to the updates:

Isaak is still at UNC and Penny is still at WakeMed. We will be continuing our discussions with the doctors and nurses at both hospitals to determine how to proceed from here. I think Bekka and I have decided after having the little monkeys in 2 locations for over 2 weeks, that it's time to get them to the same hospital lest we go insane. Now we just have to get all of the information we can and weigh the pros and cons to see where they wind up. This is not easy as there are medical, mental and practical issues all in the mix.

In terms of health, Penny is weighing in at 1080g and has been ramped up to 23ml every 3 hours on her feeds. She is continuing to do well on the Vapotherm at a flow rate of 1.5 lpm with an O2 concentration around 30-32%. They'd like to get her concentration down to room air (21%) but she's not quite able to do that yet. It may very well be due to her low hematocrit level. They considered a transfusion, but she is beginning to make her own red blood cells and so they have decided to try a round of Erythropoietin or "Epo". This drug helps promote the survival of red blood cells and so they hope it allows her bone marrow to catch up with her needs. (It was also famously used in cycling doping cases). The treatment course is 10 days long during which they will also be giving increased iron supplements. If all goes well, this will help her over the hump, after which she will be making enough of her own red blood cells. She has also been a little edemic over the last couple of days, so they have given her a dose of Lasix to help her get rid of fluid. This is not uncommon when the babies are getting O2 and are experiencing low red blood cell counts. Both of them have received doses of Lasix at varying times, especially post transfusion. There are many causes for edema in micro-preemies and no one is worried just yet.

Isaak is hanging in there. He is still being fed orally, if slowly. It appears they may have ramped up his feeds a little too fast at the end of the week, and he began "dumping" lightly processed milk out of his ostomy. They backed the rate down and he appears to be adapting well and is beginning to process the breast milk better. They have resumed increasing the volume, but will proceed more slowly. He weighed in this evening at 1152 grams. That's a good number, but we have to remember that they would really like for him to get as close as possible to 2kg before doing the ostomy repair surgery. It's not a hard and fast rule, but it can really help recovery. You will note that little sister is rapidly making up that 130g difference at birth! From a respiratory standpoint, he's doing very well and is now strictly on heated and humidified air (Vapotherm that they aren't calling Vapotherm) from a nasal cannula getting 2 lpm of flow at room air concentrations. No more head-squishing CPAP for the time being!

So all in all we are doing OK. The babies continue to sleep and grow and we continue to love them a little bit more every day.

Memorial Day Update

2010-05-31T23:09:00.003-04:00

Yes, we know it's been 5 days since we last updated on our little guys. Let me tell you that overall that's been a good thing. Auntie Amanda was down last week helping us not go crazy and getting some things done in preparation for that so far away yet not too distant homecoming day (We already miss her. It was like old times). That left mommy and me to visit our babies and hold them and watch them grow. They have had a pretty good few days.

Health-wise, both are doing well. Isaak's recovery from surgery has been termed remarkable and they ended up cutting short his antibiotics and starting oral feeds on Friday (5/28), 3 days earlier than expected. He is up to 1041g (2lb 4oz) while Penelope might be up to 990g (they are a little suspicious of that number tonight so they will be weighing her again). Penny is getting 18ml of milk+HMF+Protein. Isaak seems to be tolerating his light feeds pretty well and is getting 1ml per hour on a continuous feed as they try to get his system restarted and monitor his outputs. He has to get up to 4+ lbs before they will attempt the repair surgery to reconnect his upper and lower intestines. The quicker this happens the better as it allows him to get less IV nutrition and reduces the chance for liver or kidney damage.

From a respiratory standpoint, Isaak may finally be outdoing his older (but smaller) sister. They are mixing and matching bubble CPAP and vapotherm with him. When he's on vapotherm, it's at 2 liter of flow with a room air mix. Penny is only on 1.5l of flow on vapotherm, but they can't seem to get her O2 mix down much below 28%. This happens sometimes with these little guys. Even at higher flow rates, she was wanting a similar level of oxygen.

I've put up new pictures. We have more than this on the other camera and I'm going to try to get some new pics of Penny tomorrow as the only ones I had available were a couple of weeks old. She looks so different now! You can see that Isaak is really a cutie and is growing in a head of soft, blond hair. It looks more than a little bit like his older brothers to be honest. That's a very bittersweet thing.

Many Thanks and an Update on our Little Troopers

2010-05-26T23:53:00.002-04:00

So obviously this has been a crazy couple of weeks. I mean, it wasn't like it was normal before but Isaak's whirlwind transfer to UNC and sudden surgery have added a whole new element of insanity. Tomorrow marks one week since he was moved over there. Maintaining a presence at two hospitals, home and work has been...challenging. Bekka spent a couple of nights at the Ronald McDonald House and a couple with our friend Scott. I suspect both of us will be crashing his pad more than once as we try to split our time between our two beautiful babies. I spent the week working, visiting Penny and somehow squeezing trips to Chapel Hill into the equation.

So yeah. It's been nuts. We have some serious decisions to make as to where our babies should be and how we are going to manage all this. I'm sure it will become clear in due time.

After Ollie, we really had hoped to be the folks helping others rather than being helped. Never did we anticipate we'd be receiving kindness from so many, so soon. To everyone that has been helping out and checking in and just generally being useful: Thank You. From the bottoms of our hearts. Thanks Amanda M. for coordinating so many people and being the usual kind and caring person that you are. Thanks Amanda H. for coming down and helping us during this wacky week (love ya sis!). Many thanks for everyone trying to bring or provide meals - we have been here with such randomness that we've had to postpone many of them but I know we are going to need them and will enjoy them in the future. Finally, a big (40 gallon?) bag of gratitude for Lisa and Jenny for taming the lawn monster. Being away from home and getting 3 inches of rain had sorta turned the yard into a small pasture. Hopefully I can keep it under control now!

And now what you really tuned in for:

Penny continues to be a little rock star. She is doing well on Vapotherm and the nurses bump her oxygen up and down depending on how she is doing sat wise (and whether she is on her back or tummy - she really loves her tummy). She is tolerating feeds with no residuals and is now up to 17ml every 3 hours. Thanks to this eating regimen, she has managed to get up to 860g (1lb 14oz). She had been experiencing a bit of tachycardia this week so they decided to take her off caffeine to see how she responded. She responded by not only lowering her heart rate but by having almost no bradycardia episodes. It's pretty amazing for a 29 weeker to be off the juice, but she is.

Isaak continues to be a strong little fella. He has a long road ahead of him, but for now the doctors are astounded at how well he is doing recovering from the trauma of surgery. He really had been starting to turn a corner before the NEC set in and I think he just resumed that path afterwards. We won't have any idea on his long term prognosis for weeks yet, but in the short term he is a model patient. Of course, he is being fed exclusively intravenously right now, but has still managed to gain weight and is currently at 960g (2lb 2oz).

That's all for now. We'll have more updates this weekend and hopefully I'll have the time to get some new pictures up.

Penny's Moved and Isaak's Improved

2010-05-24T10:31:00.000-04:00

Things are starting to look up for Isaak. His respiratory status is improving hourly. They keep weaning him slowly from the ventilator and hope to extubate him soon. He'll go back to bubble CPAP. His pain medication is also being weaned and that will likely help with extubation as many pain meds are respiratory depressants. They put a new PICC line in so that he can get more dextrose to plump him up. (Currently, he weighs in at 940g.) And he's making lots of wet diapers - another good sign. He's still receiving antibiotics and IV nutrition.

Neil visited Penelope on Sunday and her big news is that she's moved to an "intermediate" nursery since she is doing so well. Her apnea and bradycardia episodes are minimal and largely all self-resolved. She is still on Vapotherm and her rate was lowered from 3 liters to 2.5 liters. Her weight is up to 780g (which is what Isaak weighed at birth).

That's all for now, but hopefully there will be more good news to come. We still have a long road ahead of us. There's a lot of uncertainty especially where Isaak is concerned. So please continue to keep us in your thoughts and prayers.

Update on Isaak's Surgery

2010-05-21T23:21:00.001-04:00

Today was a very tough day. Our little boy had to go under the knife and we didn't know what the outcome would be. Unfortunately, it was neither as simple nor as positive as we'd hoped.

It turns out that Isaak was indeed suffering from NEC. It had the courtesy to wall itself off from the rest of his body such that no air leaks had ever occurred to tip them off on the x-ray. When the surgeons opened him him up, they saw white intestines - a sure sign that the tissue was dead.

In the end, they removed over 50% of his intestinal track above his colon.

The good news (!?!) is that his colon was not affected and neither were his uppermost small intestines. They also had to perform an ostomy to allow his bowel the time and environment to heal. In 7-10 days, if he's doing well, he will begin receiving small amounts of food and they will monitor how it looks when it passes out of the ostomy. In a few weeks, they will reconnect his upper and lower intestines and hope that all goes well. Before all of that, the first order of business will be keeping him comfortable and infection free over the next few days. Bowel surgery is always risky and even more so when you are talking about a micro-preemie.

Isaak is currently heavily sedated (and will be for several days) but was alert enough to open up an eye and look at his mommy while she was holding his hand. He is still on a ventilator, but they are looking at lowering his setting as his lungs are no longer being compressed by his guts. I have to say that he certainly looks a lot more comfortable than he did the last few days before the procedure. These are small things, but they are the things at which we grasp.

The surgeons are confident they removed all of the necrotized tissue. The scary thing is there is no guarantee that it won't come back. The chances aren't really high, but NEC is very poorly understood. Apparently, in terms of the likelihood of a recurrence, it is better that they operate after the necrosis has essentially stabilized than to do it too early.

The long term prognosis really is a mystery. In some ways it was good that this happened at such an early gestational age as the body has amazing ways of adapting and repairing itself. It's unknown if he will be able to absorb enough nutrition from strictly oral intake in the relatively near term. There is a chance he could leave the hospital in a few weeks only receiving oral food, there is chance he might need oral AND IV nutrition (likely I think) and there is chance that he will be strictly IV. The hope is that things improve gradually and consistently. During normal gestation, much of the growth in the bowels occurs in the last trimester. Hopefully he gets an extra shot of growth with what he has left.

I will not lie, this has been extraordinarily difficult for Bekka and myself. We have been through so many things in the last two years with Oliver and now these little guys. This ranks up there as one of the toughest days we've ever had. To be this powerless as a parent and to see such a tiny little baby in so much distress is inconceivably heart-wrenching. No one ever said that being a parent would be easy, but I'll be damned if we expected it to be this hard.

We love you Isaak.

Surgery for Isaak

2010-05-21T16:13:00.001-04:00

I'm sorry to have to remove the (Hopefully) from Bekka's post but it looks like little guy is headed to surgery very shortly.

This morning, the doctors were evaluating the likelihood that he is really experiencing NEC as the inflammation was neither progressing nor getting better. They began to consider that there might be a section of "malrotated" bowel or an obstruction that could be causing the backup and the inflammation. We had asked about this from the beginning but it wasn't considered highly likely because it's a very rare complication in preemies whereas NEC is much more so.

As a result of the new thought process, they conducted a dye test this afternoon and confirmed that there is some sort of stoppage in his intestines. To figure out what is going on, they will be doing exploratory surgery. We do not yet know if they will need to remove any portions of his intestines or just straighten things out. If they do remove a portion, depending on how extensive the damage is, they may have to place an ostomy for a few weeks and then perform a separate surgery to remove that and reconnect everything.

Surgery will probably take 2-3 hours. He's already headed down and I'm leaving work to head to Chapel Hill now. We'll have an update whenever we can.

P.S.: Penny is still a rock star. I went to see her at lunch and she was happy as a clam and they had reduced her oxygen level to 2.5l/m. Fantastic.

(Hopefully) No Surgery for Isaak

2010-05-20T23:40:00.002-04:00

So, Isaak's transfer to UNC was pretty painless. That's not to say that it is easy having Isaak at UNC and Penny at WakeMed. Or that it's easy to see Isaak so sick. It is most definitely *not* easy.

Isaak's x-rays have not shown any changes. Nothing has worsened, but nothing has improved either. His bloodwork and clinical symptoms point to NEC, or "neck" in medical parlance for Necrotizing Enterocolitis. Sadly, Isaak certainly had a lot of the risk factors for NEC. And this is not the diagnosis we wanted. It is very serious and they will be closely monitoring him. X-rays and bloodwork will be done every 6 hours (at 2am, 8am, 2pm and 8pm).

Right now, since he does not have a bowel perforation, he will not be having surgery. However, he will be examined by the surgical staff in the event he does need surgery. The plan, though, is to treat him with antibiotics and continue the "watchful waiting" that we have become so good at. (Not that we ever wanted to be this good at it. Sigh.)

The doctor placed an arterial line shortly after Isaak arrived so that they can monitor his blood pressure in "real-time" and so they don't have to stick him every 6 hours for blood. And since he'll be having lots of blood drawn for bloodwork, we anticipate more blood transfusions. Again, this is fairly normal and expected with sick preemies.

Neil and I both noted today that the poor little guy is more lethargic than he was yesterday. We can tell that he's tired and just plain wiped out. He's letting the vent do most of the work for him. Only occasionally does he actually breathe "over" the vent - taking more than the 30 or 40 breaths per minute that the vent is giving him.

Isaak's little belly is taut and shiny and reddish. It looks uncomfortable. We both commented today that he reminds us of Ollie right now. Because his tummy is so distended, his chest and abdomen have that bell shape that became so familiar. And his hair has that same reddish-blonde hue as his big brother's.

Talking about those similarities today brought tears to my eyes. I think this is the first time since I was admitted to the hospital in early April that I have let my emotions have the better of me. It won't likely be the last.

I never would have expected that all three of my children - my two sons and my daughter - would have to fight so hard to live and breathe.

Please keep praying for Isaak and Penny.

Isaak headed to UNC for Surgery

2010-05-20T09:33:00.002-04:00

I had a long post working to update everyone, but this will have to suffice:

Isaak began getting very distended in his belly a couple of days ago.
It was bad enough that it was complicating breathing so they put him on a vent.
He's been on antibiotics for 48 hours with no change in condition and is showing some discoloration on his abdomen.
They are now worried it could be NEC or another complication and feel that surgery is warranted.
The surgeon they would like to look at him is at UNC and we will be transporting him to Chapel Hill.

Pray hard.

QUICK UPDATE: As of 1:30pm, Isaak is now ensconced in his new home. They are getting all of his vitals hooked up and we should meet with a surgeon pretty soon. We aren't sure yet if they will definitely be doing surgery or more observation for the time being. They are going to try to put an arterial line in so they can more easily monitor his blood gas and take samples for blood cultures without having to stick his little heels all the time. Let's hope that works better than trying to put little Penny's PICC in!

Just a Tiny Update

2010-05-17T23:09:00.002-04:00

Hehe. OK, so both of the little guys had a great day. Penelope is now on a device called a Vapotherm. It's essentially a heated and thoroughly humidified oxygen feed through a tiny nasal cannula. Frankly, that is absolutely amazing. She may very well wind up back on the CPAP but in the meantime she is enjoying a bit of time with a lot less bulk on her head. You can actually see her little face all the time now.

Isaak had a followup echocardiogram this evening to examine his Patent Ductus Arteriosus. The results reveal that he still has a small PDA. Yep, small. Previously it was classified as large so this is definite improvement. Little guy does not have any of the most concerning symptoms so the plan is to observe him and hope that A) It does not grow and B) It heals on its own. If symptoms worsen, the possibilities include another round of neoprofen treatment or, as mentioned before, surgery. He is still on SiPAP but is doing very well and is pretty much staying on room air concentrations. The transfusion really did wonders for these little guys. They will probably need another in a week or two, but it's really nice to visit them and not have constant monitor alarms going off.

Both babies are back on breast milk. Penny is up to 14ml and they have doubled the HMF in her feeds. This provides extra vitamins and calories and hopefully will spur additional weight gain. Isaak was already back up to 7ml this evening (remember that stopped his feeds for the neoprofen dosing) and will likely be bumped again tomorrow.

Improvements for Penny and Isaak

2010-05-15T19:57:00.000-04:00

Hooray! I like typing the word "improvements" in the title! =)

Both babies completed the second half of their transfusions yesterday evening. Their nurse overnight and their nurse during the day today both said that they are steadily improving - many fewer A's and B's (apneas and bradycardias). In fact, the nurse during the day today said that Isaak had only had 2 episodes today. (She was their nurse from 7am until 7pm and she told us this at 6pm.) Three cheers for red blood cells!

Penny began getting her breast milk feeds again around 11pm last night. She tolerated them well and has now had her UAC line removed. No more IV pumps for Penelope! She's up to 12ml of breast milk at each feeding which is a "full" feeding for her size. They have added human milk fortifier (HMF) to my breast milk in order to help her gain weight. (Isaak's feedings will also have HMF.)

Isaak has received two doses of neoprofen to help close his PDA. He will receive his third dose tonight. Depending on how his little heart sounds to the nurses and doctors, he may get one additional dose tomorrow. If they don't give him a fourth dose, he'll start his breast milk feeds again in the morning. In either case he'll get another echocardiogram on Monday.

While I was visiting them yesterday, Penny decided to be extra special cute and open her eyes! Be sure to check out the pictures. Then she managed to be even cuter....I know, I found it hard to believe as well. But I have video to prove it! Her big brother would be so proud of her. =)

Transfusions, PDAs, and tough days for Isaak

2010-05-13T23:35:00.001-04:00

First off - I know we don't talk about her much, but Penny is doing great. (Which is why she doesn't get as much press coverage in this blog). Little girls often do very well as preemies and she appears to be no exception. We just need her to drag her little brother back onto the program! You'll want to check out the new pics before proceeding because they are just so darn cute.

So Penelope is doing great but Isaak is having a rougher go of it right now. Over the last two days, his apnea and bradycardia episodes have become more frequent. They are not necessarily worse, but there definitely have been more. This led the doctors at the ICN to begin considering the possibility that Isaak had a PDA, or Patent Ductus Arteriosus. Please click the link for more details, but this is essentially a condition where a blood vessel connecting the pulmonary artery to the aorta does not close at birth. It's not uncommon at all in preterm infants and also occurs in full term babies. It places additional stress on the lungs and in some cases, like Isaak's, is asymptomatic until a week or more has gone by.

An echocardiogram conducted this afternoon appears to confirm that he has a fairly large PDA. The first treatment will be 3 doses of ibuprofen given 24 hours apart. This often works to close or greatly reduce the size of the PDA. Both of the twins received doses of indomethacin (another NSAID) when they were born in order to try to head off this very condition, but apparently in Isaak's case this wasn't quite sufficient. If the ibuprofen treatment doesn't work, the next option is surgery. It's a fairly routine procedure, but any surgery on an infant that tiny is risky (and very scary for the parents). In the meantime, we hope and pray that the ibuprofen does the trick.

Treatment with ibuprofen carries a risk of causing NEC, or Necrotizing Enterocolitis, due to the reduction of overall blood flow in the body and to the bowels in particular. Isaak has shown no symptoms of NEC so far and has processed mommy's milk well, so let's go with the positive outlook on this particular issue. They will be stopping his feeds and increasing his IV nutrition while he receives the ibuprofen as a precaution.

Finally, both of the little guys are getting transfusions over the next couple of days. You probably did not know this (we didn't), but preterm babies do not make red blood cells. Normally at this gestational age, mom would be providing everything they need, including adequate red blood cells. Their hematocrit levels have steadily fallen since birth and are now at the point they need fresh blood to help them along. THIS IS ABSOLUTELY NORMAL. It's likely they will have a few more transfusions before their bodies are ready to manufacture a supply. We really hope that this procedure will help with Isaak's bradys and apneas as the oxygen carrying capacity of his blood will greatly increase.

We've had two very good weeks with our little guys but it looks like the first setback has finally shown up. Keep sending the positive vibes and the prayers and thanks for all your support.

Weight Gains, Head Ultrasounds and More

2010-05-12T23:31:00.002-04:00

I'll go ahead and apologize now for this post in advance. We're both pretty tired. (It's amazing how traveling back and forth to the hospital wears on you.) So tonight's update will be brief.

Daddy got to hold Isaak tonight! We've got pictures, but they'll have to wait until tomorrow. Isaak was so sweet though. You could tell that he wasn't really able to focus, but he kept opening up his eyes to look up at his daddy. Neil and I have now held both our son and daughter. =)
Penny now weighs 710 grams. Isaak weighs in at 810 grams. Both are now above their birth weights of 650 grams and 780 grams, respectively. A couple days ago they both hit their exact birth weight on the same day. Could they already be showing us signs of their twin connection?
The amount of breast milk each is receiving is steadily increasing. Isaak is getting about 8ml every 3 hours and Penny gets 7ml. Assuming they continue to tolerate their feeds well, they will get a slight bump in the amount every 24 hours. If all goes well, they'll be on solely breast milk by the end of next week. (No more IV nutrition!)
Respiratory wise, Isaak is still the trouble maker. He continues to have several apnea and bradycardia spells each day. Most of the time he self-resolves or needs only mild stimulation to recover. He has been taken off of the SiPAP and placed back on CPAP. The nurses are trying to suction him more frequently since he seems to have more gunk in his nose and throat than his sister does. Penelope has occasional "A's and B's" - as they say in medical parlance - but nearly all of hers are self-resolved. Neil and I have tried to get her to talk with her brother about these things. So far, though, she has refused to set him straight.
Despite several attempts, there is still no PICC line for Penny. They may have to do just a plain ol' IV for her. Her UVC in her umbilical cord is still in and still working well, but it will need to be taken out soon. After 10 or so days, the risk of infection outweighs the benefits it provides.
One of the many things that preemies often experience is a bleed in the brain known as an intraventricular hemorrhage (IVH). So last night both Penny and Isaak had a head ultrasound. Penny's showed a mild Grade 1, possibly Grade 2, IVH that was isolated to the right side of her brain. Isaak had a Grade 1 IVH on both the left and right. Short-term and long-term outcomes with Grade 1 or 2 are very good. In fact, most doctors and nurse practitioners that we've spoken with say that there is nothing to be worried about. To be on the safe side, a second head ultrasound will be done in about a week. This is done just to monitor and track the size of the bleed. (Who knows...full-term babies may also have mild IVH's, but they aren't screened for them.)

Thank you all again for the many prayers said on our family's behalf. We sincerely appreciate every one of them.

27 Weeks Today

2010-05-11T00:25:00.000-04:00

Today is 27 weeks gestational age for the twins. What an amazing thing. Of course, we wish they'd decided to hang out in mommy's tummy a bit longer but they are moving right along and we are so thankful they are here.

Monday, Isaak managed not to need any "neo-puff" oxygen to get his sats back up after his apnea episodes - he recovered all on his own. He was rambunctious enough to pee everywhere when they were bathing him. I guess he wanted a change of bedding too ;)

On Monday, both babies appear to have gotten back to birth weight. The goal was to have that occur in the first 2 to 2 1/2 weeks so they are a little ahead of schedule. They are currently receiving 4ml of milk every 3 hours with minimal residuals.

On Monday, Bekka got to hold her little baby boy for the first time.

Monday was a better day.

Quick Update Before the Week Begins

2010-05-10T00:14:00.004-04:00

So Isaak has had an ok but sorta not day. It's really a continuation of the trials I mentioned in last night's post. He is experiencing breathing challenges his little sister simply isn't. Everything is well within the norm for early preterm babies, but it's still a little scary for Mom and Dad. He's well looked after (extremely) by the nurses and doctors but wow is it not much fun watching them rush to his bedside. We've had far too much experience in our lives staring at pulse-oximetry readings and I can't say we are happy to be doing so again.

Today he was recovering more rapidly from his spells than yesterday. It wasn't until late this afternoon that he had an episode where more aggressive intervention was needed (read: oxygen). Otherwise, we saw a lot of little dips in heart rates and stoppages in breathing that went away on their own and pretty fast. The bradycardia (slowing heart rate) really isn't too scary in and of itself - it's when it's coupled with extended apnea (stoppage of breathing) episodes that it gets unnerving. Penelope experiences "bradys" fairly regularly but it's almost never accompanied by apnea. In Isaak's case, the apnea is usually causing the bradys. Little guy "forgets" to breathe and that drops his sats and his heart rate.

He is also having some problems with secretion management (here we go with things we know too much about again!). They don't know if he's making extra slobber or just not getting it down. The swallow reflex is often underdeveloped at this point. We all need to keep remembering they ARE supposed to be in utero at this particular juncture! As mentioned previously, the secretions are likely playing a role in his apnea episodes by creating obstructions. The nurses and RTs are doing everything they can to keep him clear, but they have to be careful not to irritate or injure his airways as that can cause inflammation and create an infection risk.

They say all this is normal but if he keeps it up he might wind up on the ventilator for a while. Everyone is hoping that can be avoided, but it is what it is. Hopefully his little brain can start coordinating everything a bit better! Maybe we can get Penny to teach him...

New pictures from last night are now up. Feel free to jump over and take a peek.

A Great Article/Post on Helping Parents with Children in the NICU

2010-05-08T23:41:00.000-04:00

This article is from a blog interview with Alexa Stevenson of Flotsam. Last year, she did us a great favor and posted a story about Oliver and helped us to spread the word about our special little guy, SMA and carrier testing. She has a daughter that was born at around 25 weeks and has faced many developmental challenges. This experience makes up much of the content on her site.

In this interview for another site, she sums up far more eloquently than we ever could the challenges and frustrations of having preemie babies in intensive care while you are at home. A lot of this applied when Bekka was on bed rest in the hospital too. Thanks for the tip Amanda M.

Take a gander at it here.

Isaak and his Not so Great but Not so Bad Day + Holding Penny

2010-05-08T23:30:00.002-04:00

Today was a tough one for little Isaak. Last night they had discussed the possibility of switching him from bubble CPAP to SiPAP due to his recurring bradycardia and occasional apnea. This morning they made the switch. SiPAP differs from CPAP in that it actually provides "breaths" if they don't breathe themselves. If they are breathing OK, it acts like CPAP but if they need the assistance, it will pulse a set number of times per minute. CPAP simply provides constant pressure to keep their airways open and lungs inflated.

One positive: it appears that some of his issues might be caused by secretions. Twice, they suctioned out some pretty nasty stuff and he immediately began breathing and behaving better. We are well familiar with the impact of secretions thanks to our time with Ollie. We really hope that more frequent suctioning will help Isaak out. He had a fantastic late evening while we were visiting - let's hope it continues through the night.

In other news, Penny has been rock steady and I was even able to hold her this evening! Pictures will be forthcoming but let it suffice to say that it was incredible! She is just a little snuggle-bunny, so warm and soft. Feeling her little heart beat away in her chest is one of the most amazing things I've ever experienced.

Bekka's mom went home today. She was a big help during the week and we are so glad that she was able to meet her new grandchildren. We'll miss her.

Of Seven Days, Kangaroos, Poops, Pics and PICCs

2010-05-07T23:59:00.004-04:00

Wow.

A week old. It is really hard to believe seven days have gone by since being woken up in the early morning by doctors talking about c-sections. It's been a crazy few weeks but we have two beautiful children fighting their way forward each and every day.

We are now moving into a critical time. Penny seems to be doing best, but this isn't uncommon as little girls are often at an advantage when born this early. Isaak is still experiencing quite a few bradycardia events but is keeping his O2 sats up. Both babies are pooping regularly; this is a huge step and means they are tolerating their food. The docs hope to go up to 4ml per feeding on Sunday if all continues well. For reference, 13ml would be a full feed so they are getting there slowly but surely. Their best chance is for the doctors and nurses to follow the protocols gradually and carefully.

Isaak received a Peripherally Inserted Central Catheter, or PICC, today. His umbilical venous catheter had shifted and they needed a way to continue feeding and medicating him. They prefer not to use regular IVs as they don't last long in the tiny little veins. The PICC can stay in place for months and offers higher volume flow and a lower risk of infection. The placement was not picture perfect, but will be OK for now. Penny will probably receive one of her own in the next couple of days as her UVC will need to come out soon. If feeds continue to increase, they may only need it for a week or two. Let's hope that's the case!

Grandma Karla was able to hold Penny yesterday while they did a bed change and Bekka was able to perform a little Kangaroo Care with her today. Dad hasn't gotten to hold either of them yet but hopefully that comes soon. It's pretty tough not having had that chance. If Isaak is doing well tomorrow, I'm hoping to hold him during his bed change.

More pics are up of all this so pop over to the gallery and check them out.

Quick Update on the Twins

2010-05-05T23:44:00.000-04:00

Just wanted to let everyone know that everything is going fine. We finally have some pics of Penny (with her eyes closed, sadly). I'll get those up tomorrow in the evening. Between trying to get some sleep, going back to work and visiting the little ones, it's been a busy day. The last few weeks seem like such a blur and it's so hard to believe they will be 6 days old tomorrow morning.

The little guys are still experiencing periodic bradycardia and apnea episodes but these have continued to be short and almost completely self-correcting. Periodically the nurses do have to jiggle them or tickle them a bit to speed up recovery. The nurses tell us they'll likely experience these episodes right up until they go home but they will get better with time. So often in the last month, hurrying up and waiting seems to be on the agenda every day. Overall, they truly are doing well and have exhibited no other issues except for the elevated bilirubin levels. Both are under bili lights again, but are expected to be off tomorrow. Again, this will be a common occurrence.

In exciting and very positive news, their feeds get upped tomorrow to 2ml every 3 hours. This is double what they are getting now and is a great sign they are tolerating mommy's delicious homemade milk (really, you should see them smack their lips when they get a little in their cheeks). Stomach residuals have gotten a little better every day indicating that processing is occurring. Now we just need a couple of tiny poopie diapers to make the nurses, docs and proud parents happy.

Something I forgot to mention yesterday: They are both in the same cubicle now so we can visit them together! If all goes well, they will eventually wind up in the same crib, but this is so much nicer for us to not have to "choose" which baby to visit.

Remember, pics tomorrow with any luck!

Mommy's been Discharged and Other News

2010-05-04T19:17:00.000-04:00

Today, they let Mommy out of the hospital. We will miss all of the wonderful doctors and nurses at WakeMed that have been taking care of Bekka but it will be nice to have her home and I know she is so looking forward to sleeping in her own bed for the first time in almost a month. It's so very bittersweet leaving our babies there.

The twins are doing great today. They both had a couple of short apnea episodes but recovered on their own. This is very expected - they told us they will get a little worse before they get better. Self correcting is a good sign in any case. Did you know they give them caffeine via IV to keep them stimulated and breathing? How many times have you heard someone joke about needing a coffee IV, and these little guys actually get it. I think there are some espresso junkies that would be very jealous!

New pics have been uploaded to the Picasa album. Enjoy.

No other big news to report today.

Penelope and Isaak - Day 4

2010-05-04T00:00:00.001-04:00

We hope updates decrease in frequency pretty soon but I know we have an anxious audience refreshing their browsers like mad waiting for the next update. At this early stage in their little lives each day is a big deal and everyone wants to know what is going on - we understand.

As of now, things look pretty good. Both babies seem to be tolerating mommy's milk well and it's really cute when they're fed. You put just a drop in their mouths so they can taste it and you can see their little lips smacking on the yumminess. Next they get a 1ml bolus feed through their tube. This allows them to associate the taste and sensation of the breast milk with having a full belly.

For those mommy's out there, Bekka is producing 2-3oz of milk every 3-4 hours. This is fantastic given the preterm delivery - it takes a lot of effort to get milk volume ramped up that early. She's a champ! We now have our own basket in the ICN freezer so we can put plenty away to feed them as they begin to eat more.

Bilirubin counts are just about in the normal range today and there is a good chance they will remove the lights tomorrow. We'll be able to see their little eyeballs! The twins will be on and off the "bili lights" over the next few weeks, but coming off the first time is a good step. Weights are still looking good. Penny remains at 620g while Isaak has dropped a bit more to 690g. That is still a good number and he had a bit more to give up. They'll be upping fluids and calories to keep both of them no more than 15% below their birth weight. The goal is to get both babies back to that weight by two weeks of age.

We happened to visit earlier this evening just as they were starting Isaak's evening assessment. The result is that we have a few great pictures of him, some with his eyes open and without CPAP! Mysteriously, I can't pull them off the SD card using the laptop so you'll have to wait and see those after I get back to house and get them down/uploaded. Penny was on her belly under the lights so no great pics of her. We hope we can get a good shot of her little face very soon.

During the assessment, Bekka was able to hold Isaak in two hands (inside the incubator) while they changed his bedding. That was a very sweet moment. When I get the pics up, it will give you a better idea of his size. We really hope to be able to do "Kangaroo Care" in few more days and really get to hold the little guys. That will be a special moment.

Bekka should be discharged tomorrow. She's recovering very well from her c-section. Today, she has managed to walked all the way down to the ICN several times, getting a little faster and more confident with each trip. Not only is she recovering from surgery, but also from being in bed for 3 weeks.

What an amazing wife I have.

The Twins - Day 3

2010-05-02T22:01:00.000-04:00

Today has been pretty much the same story as yesterday. Bekka continues to recover well from her surgery. She actually sent me to sleep at home last night because as she reasons it "Someone needs get some rest and I'm in the hospital". After spending 3 weeks in here myself, I really didn't argue too much. She is having good luck steadily increasing her milk supply - something that will be so important for the babies nutritionally and to help them build immune systems from scratch.

Both babies are continuing to do well. Their bilirubin counts are decreasing. The nurses tell us they will likely be under the lights most of this week and then off and on for a couple of weeks while their livers get up to speed. Their skin already looks remarkably less red and purple than it did on their birthday.

The 48hr blood cultures for both came back negative! That's very exciting and meant they were both able to come off the more powerful antibiotics. Penelope will be on ampicillin for a another day or two as a precaution against lung infections since she had the ruptured sac.

Isaak weighed in at 730g this evening, about 50g lighter than this birth weight and Penelope weighed in at 620 which was 30g less than birth. This is considered very reasonable as they are both under the lights and only today started receiving food in their stomachs.

As of now, they are getting about a milliliter of mommy's colostrum/milk every 3 hours.The report from the first couple of feedings is good, as each had minimal amounts left in their tummies. Hopefully this means they can process milk without a problem. At this development age, preemies digestive systems are not "primed" and ready to go like a full term newborn. They have to ramp up their intake through their stomach slowly.

We forgot to relate one really neat thing in earlier posts. Nowadays, the nurseries take advantage of the umbilical cord and actually place lines into both a vein and an artery. This allows them to give fluids and take blood samples and instantaneous blood pressure readings without having to poke the little guys repeatedly. This is less painful AND greatly decreases the infection risk. Typically they can use this connection for about a week and a half. How cool is that?

That's all to report for now. I'm sure we'll have more as the week progresses.

Penelope's and Isaak's Second Day

2010-05-01T16:45:00.002-04:00

Today has been a pretty good day. We went back to see the babies around 12:30 (boy did we both need sleep after being up 24 hours - and Bekka had a little thing called a c-section during that time!).

Both babies are still doing very well. They are under sun lamps to take care of the elevated bilirubin levels. Most impressively, both babies have already had a BM! That's a great sign that the plumbing is working well. We also found out that since being on CPAP, Isaak has had only 1 (one) instance of apnea and Penny none! Apnea is very common with these babies as they aren't used to having to do so many things at one time and their autonomous nervous system doesn't quite do everything smoothly sometimes.

The nurses in the ICN have take 3 photos for us. They are scans of so-so prints, but at least you can see the little guys. Just a warning that they are very very "real". Remember that they aren't quite done baking! In one of the photos, Isaak really looks like a little ET doll. You will also notice that their skins are red. This is due to the last two layers not yet having developed. That should happen in the next couple of weeks and they'll have more normal skin tones.

So many things stand in their way; from infection (their little immune systems are barely there) to high risks of cerebral hemorrhage and an increased risk of cerebral palsy. That being said, they have gotten off to a running start in their very young lives. Thanks for following their story!

Friday Night Twins' Birthday Update

2010-04-30T22:58:00.001-04:00

Tonight things are going pretty well.

Bekka continues to recover from her c-section and they should have her up and walking around tomorrow.

We made a visit to the twins this evening around 9pm. It's amazing how well they are doing. Both of them are on a bubble CPAP machine without supplemental oxygen. That's really incredible for 25 week babies on the day they are delivered.

Isaak has some bruising due to the delivery and his bilirubin levels are elevated. His little liver isn't really fully working at this stage of development so to help him out, he'll likely begin tanning sessions tomorrow. Penny is doing great and both of them have maintained their birth weights. They are likely to lose a bit of weight, but this is a good start.

We were able to see some really cute yawns and stretches and some funny but painful looking hiccups. Poor little guys shake their whole bodies when they do that!

If they are doing well, I'm hoping to make it by the house to scan some pictures taken by the nursing staff. (We aren't allowed to take pictures at this stage - we are anxiously awaiting the day).

The ICN staff has been fantastic - well really the whole OB and pediatric staff at WakeMed has been looking out for Bekka and the babies. Looks like we'll be seeing them awhile longer...

Thanks for the kind words, thoughts and prayers. Keep them coming as these little guys can use the support!

Babies are in the ICN and Bekka in Recovery

2010-04-30T08:34:00.002-04:00

We are waiting for an update from the ICN (Intensive Care Nursery) staff but both looked pretty good when they took them back. Good heart rates and very wiggly. Both opened their eyes a crack when I talked to them. That was a tear inducing moment!

Bekka is doing well in recovery. They were able to do a modern c-section (across the belly) which is very good for her recovery.

More once I get to see the little guys...please continue praying!

Bekka back for c-section

2010-04-30T06:35:00.002-04:00

More later. Little girl was just Too unstable.