Sunday, December 19, 2010

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

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.

Friday, December 17, 2010

Eye Surgery, Part 2

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.

Wednesday, December 15, 2010

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

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).

Sunday, December 5, 2010

Of Synagis, SICC and Many Cute Photos

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.

Thursday, December 2, 2010

Laughter really is the best medicine

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!

Wednesday, November 24, 2010

November 24th

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.

Sunday, November 21, 2010

Babies and Stuff

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

Wednesday, November 10, 2010

6 Month Check-Ups

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!

Monday, November 8, 2010

Guest Blog: AHC Foundation President Jeff Wuchich

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 use of one or more of their limbs for minutes, hours, even days.  Imagine these episodes were often painful.  Imagine this mysterious disorder essentially caused parts of the brain to “short circuit”, and affected your child’s ability to learn.  These are the sad realities for those afflicted with Alternating Hemiplegia of Childhood (AHC), an extremely 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 at birth.  He spent the first 10 days of his life at Rex Hospital in Raleigh, NC.  He visited hospitals many times his first 2 years of life (he is nearly 3 ½ now).  There were other AHC symptoms early on, but the primary symptom (the baffling attacks of paralysis in one or more limbs) came at 6 months, which we now know is typical for AHC sufferers.  I say “now” because it took until Matthew was 18 months old for us to arrive at the diagnosis of AHC.   Because it is so rare, the vast majority of neurologists do not know about this disorder.  The agony we went through of knowing something was very wrong with Matthew, but not having a name for it was heart wrenching.  We were fortunate to eventually find doctors here in the Raleigh area who are familiar with it.  Many families are not as fortunate.

But despite our fortune in getting to a diagnosis, Matthew will continue to have a very challenging life.   These attacks often can affect breathing or swallowing.  In fact, we nearly lost Matthew in March of 2009.  There is no known 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 disease onset; it is a permanent disorder.   Some adults are able to live semi-independent lives performing menial jobs, but many require permanent full time care even as adults. 

Research has been ongoing for several years, but funded solely through the AHC Foundation by families with afflicted children doing grass roots fundraisers.  That is why we are striving so hard to win the $250,000 this month on Pepsi Refresh.   Our idea is simple, straightforward, and ambitiously hopeful at getting to the root cause of AHC.  The project will perform a full genome sequencing on a sample population of AHC patients in the United States.  From this process, we should have identified common genetic mutations.  We will then be able to screen the other AHC patients for the identified mutations & arrive at the root cause of AHC, or at the very least eliminate genetics as a root cause if none is discovered.

We are grateful for any support you can provide to help us win this grant.  We certainly do not want to take focus away from efforts to cure SMA, but as previous 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 NOW button.   Follow the directions.  Make sure you hit VOTE NOW again after logging in.
2. From your mobile phone:
Text 104112 to 73774 (73774 is in the “to” field; 104112 is in the body of the message)
3. Please share with everyone you 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!

Saturday, October 30, 2010

6 Months? Really?!?

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).

Tuesday, October 26, 2010

Isaak's Eye Follow-up and other Weighty Matters

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!

Monday, October 25, 2010

Isaak and the Big Field of Vision

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





Saturday, October 23, 2010

Just in Case You Were Wondering...

...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.

Wednesday, October 13, 2010

Isaak's Eyeballs Open Post

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.

Tuesday, October 12, 2010

Isaak's Eyes are not Smiling Today

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.

Friday, October 1, 2010

For Cindy R.

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!


Sunday, September 26, 2010

Which the Chicken and Which the Egg?

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....

Thursday, September 16, 2010

This is Ollie's Tale. This is SMA.

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.

Monday, September 13, 2010

This Post Just Couldn't Weight

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.

Thursday, September 9, 2010

New Photos and a Word about Eyeballs

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.

Thursday, September 2, 2010

Twins in the House

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 :).

Wednesday, August 25, 2010

Notice Anything Different About Isaak?




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!

Wednesday, August 18, 2010

Sound Medical Advice (and an update on the Twins)

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...

Tuesday, August 10, 2010

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

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.

Sunday, August 8, 2010

Isaak's big Update

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.

Thursday, August 5, 2010

Happy Birthday, Oliver!!!

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.

Tuesday, August 3, 2010

Ollie: August 5, 2008 - August 3, 2009

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.


Monday, August 2, 2010

Penny loves being at Home and Isaak is Complicated

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).