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....

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.

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.

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.

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 :).