Monday, August 3

Back by Popular Demand...


Pictures of Bryce

Bath time...Bryce is not a fan...


Bryce looking at Mommy's hand intently while contemplating extubating himself (again)...


Bryce all dressed up for the first time. Daddy trying to calm him down after his bath with his paci. No that is NOT a dress - that's a size preemie shirt!
Still not happy, notice the movement of his right foot - the leg kicking thing is how you know you've really made him mad.

Finally calming down thanks to his paci. Now if he could just get that person to stop pulling on his ear he'd really be happy. He has no idea that person is him!
And this one is for the ladies!

Full Feeds

YEAH! Bryce began full feeds yesterday. Full feeds means he is getting all of his necessary nutrients from my milk! This is so exciting for us because it shows he is able to tolerate my milk and process it quickly enough to eat every three hours just like a full term new born would do. They're even adding a protein fortifier to his milk which adds 2 whole calories to each feeding for a grand total of 22. I liken the fortifier to a free boost from Jamba Juice - it's a little powder they mix in to make it even just a little more healthy than it already, naturally is.

He was on the full feeds all of yesterday and last night and has had little to no residuals. Every time the nurse feeds Bryce she puts a syringe on his feeding tube (that goes down his throat into his tummy) and pulls back to see what, if anything, hasn't yet been processed from his last feeding. The first sign of feeding intolerance is "high residuals" but Bryce hasn't had any!

Unfortunately, Bryce's surgery is tomorrow and so he will have no food for 4 hours prior. We're not yet sure what time they will schedule the surgery for and probably won't know until this afternoon sometime. After he comes back from surgery and begins to wake up - a couple more hours - then they will likely start him back on half the amount of food he is getting now. If he tolerates that first feeding after surgery well then they'll probably go right back to full feeds every three hours with the very next feeding.

Caleb and I hope and pray that baby Bryce tolerates this surgery as well as he did the last. If he can come back on about the same ventilator settings as he leaves for surgery on (like he did last time) then the docs will most likely try to extubate him to CPAP again sometime around Friday. And if he comes back and goes pretty much right back to full feeds he'll be even bigger and stronger on Friday - and hopefully better equipped to stay on CPAP than he was last time. He's already so much bigger than just the week before last when they tried the first time. But only time will tell.

My sincere apologies for taking the weekend off from updates. We were so busy between the hospital and visiting with Caleb's brother while we still can. We also managed another "vacation" to home on Saturday evening. It was our most relaxing yet, maybe because we cooked and cleaned and so it genuinely felt like home. Of course, walking into the NICU feels more like home than any other place right now. When we're not at the hospital all we think about is being there. We laid in our seeminly gigantic bed on Saturday night, where there is an ocean between us (so nice!) and imagined Bryce laying there with us some day. I cried.

There is simply nothing in the world I want more than to take our little bundle of cuteness home with us. And I can finally say that I feel in my heart we will get there, we are all going to make it to that glorius day. And as G2 said so many weeks ago - we'll break out the brass band the day Bryce goes home!

Friday, July 31

Back to Surgery

Well Bryce's new subgaleal shunt, put in a week ago last Wednesday is doing a great job of draining the excess cerebral spinal fluid off. But the ventricle where the shunt from before was is now swelling. The swelling was first noted on Monday but the plan was to just continue to watch it with the weekly head ultrasounds. A sudden increase in Bryce's head circumference was noted by the nurse last night and so an early ultrasound was ordered and done this morning. The neuro team reviewed it and decided something needs to be done to relieve the extra pressure on Bryce's brain.

We were expecting a neurologist to come in and to a "tap" to relieve the pressure by inserting a needle into Bryce's brain and pulling out up to 10 ml of fluid, which they had done twice before he was healthy enough for his first shunt. Well next thing we knew there was a whole team of neurologists in Bryce's room. We were obviously and immediately concerned but they were just there to say that they are watching him and have him scheduled for a new shunt on Tuesday unless he takes a sudden change before then. I hope he can wait until Tuesday because the taps always made him so uncomfortable afterward but at the same time the pressure and extra fluid in his head have also always made him so uncomfortable.

On top of that Caleb's brother is now at home under hospice care and has taken a sudden turn for the worse.

Please keep us all in your prayers especially over these next few days.

A debt of gratitude,
Our Little Family

Wednesday, July 29

Quick Update

Hi Y'all! Baby Bryce is doing astoundingly well! He hit the landmark weight of 3 pounds (even) last night and is so far still tolerating his daily increasing feeds. He's up to 12 ml every 3 hours now, the most he's ever had.

Just like a normal little baby he sleeps a lot. He's usually awake for an hour in the morning and maybe an hour at night.

He follows our voices, looking for us when he hears us talking to him. His eyes get bigger and brighter every day it seems. And his hair continues to get longer and thicker, it's even beginning to show signs of a bit of a wave. Maybe he did get something from his momma?

Bryce has the biggest stretches, coupled with very dramatic yawns, for such a little guy and they will literally melt your heart!

We're hoping to get to put some preemie clothes on him tonight, too! I even left for a good little while today to search out something special for Bryce to wear for his first dressing. Have no fear - there will be pictures coming soon if we indeed do get to put some of his new, tiny little clothes on him.

Caleb's going to hold Bryce tonight though for sure. He needs some Bryce time more than ever right now, maybe even more than little Bryce needs his daddy time. Caleb's brother is very ill and it's a lot for Caleb to be dealing with. Your prayers for Caleb and his family would be greatly appreciated during this trying time for everyone.

I'll try my best to keep you all posted as things continue to develop for baby Bryce! Thanks for checking in with us!

Monday, July 27

Monday Rounds

We just finished up rounds and everything appears to be going just as well as it possibly could be.

Bryce is 50 days old today and weighing in at a whopping 1290 grams (2 pounds and 13.5 ounces).

They are upping his feeds today to 8 ml every 3 hours, as well as increasing his proteins, fats and caffeine to try to get his weight and strength up for another try at extubation late in the week.

Hopefully he will continue to tolerate his feeds though we were nervous that they would go up on the frequency to every 3 hours today. That is when he stopped tolerating them last time and they had to stop feeding him all together for a few days. BUT the big difference is that he is now - finally - having real stools. He's been pooping for about a week or so now, but those were all still meconium. Saturday he had his first bowel movement that was obviously milk passing all the way through his little belly. And he's been steadily going ever since.

Also on Saturday, while Abuelita was babysitting and Bryce was still extubated my mom thinks she heard baby Bryce cry for the first time. I wasn't here, unfortunately, so I can't attest to it but she is sure she knows what she heard. Maybe this weekend we'll get to hear him for ourselves, though of course we hope he has no reason to cry.

Caleb and I did get to go home again on Friday and it was so nice to see our furry children, but especially to sleep in our own bed! Our bed at home is like an island unto itself compared to the bed at the Ronald McDonald house. Though we are so grateful to have a bed so close to Bryce available, otherwise I might be sleeping in my car in the hospital parking lot.

We're going to do our best to make Friday nights our night at home. But you know what they say about the best laid plans. We should know better than to try to plan anything anymore.

While we were home on Saturday the painter came by to lay the groundwork for Bryce's nursery. Caleb and I had installed the laminate flooring and put up the crown molding for his dimmer rope lights but that is as far as we had gotten before he made his surprise appearance.

So my mom, aka Abuelita, had a painter come paint the walls and ceiling a beautiful, baby-safe blue. He also repainted the door and trim a fresh, clean white. It's a small start but it looks great already. Next will be the green hills on all three walls (one wall is all closet) and then come the Seuss characters. I'll keep everyone posted as the nursery progresses. I'm so excited to see it all ready for him to come home to!

We've been here seven weeks now and can't help but wonder if we're almost half way there? We know better than to get our hopes too high but the day we drive Bryce home, in the slow lane with all the crazy Austin drivers honking and passing us by, will be the best and second scariest day of our lives!