Little Man, Big Changes

So many things have happened in the last two weeks with Alex. I recovered from my cold and was able to see Alex after 8 days of staying away from the NICU. I wore a mask for a few days when I first went back, just to be sure he'd be safe.

Alex still loves his baths and loves to be held. He doesn't enjoy certain aspects of his cares, like getting his temperature taken, having his tummy felt, measured, or any kind of handling. As the development specialist has begun to examine him weekly, she has shown us his stop signs when he's bothered. Like putting his hands out, putting them together, yawning, hiccups - things like these that we didn't realize were his signals for us to stop or slow down - we just thought he was being cute. That has been extremely helpful for us to realize that he is bothered, so we can take our time in his handling. When he gets very bothered, it affects his oxygen saturation and heart rate.

We love this outfit we received from a friend.
His shoes are so cute!

About a week and a half ago, he was considered stable enough to be transferred from Room 1 in the NICU, and is now in Room 3. Room 1 is for babies who need much more critical care. This was a very happy day for us! But it quickly went from feeling like he was a big fish in a little pond to a little fish in a big pond. The babies in the other rooms are babies that cry, and many are in open beds instead of isolettes. Babies that eat at least in part from a bottle or breastfeeding.

This has made us feel like our NICU stay will not actually last an eternity. Seeing other families going home with their babies, seeing Alex growing into a baby that needs his mommy and daddy in different ways than before. The first two months of Alex's life whizzed by for us, when he needed such critical care, and we could do hardly anything for him. Now that he's currently 4 lb 7 oz, things have changed drastically. He knows when we're there, and cheers up significantly. He seems more like a real baby to us now, and just about drives us crazy with how cute he is.

The most exciting for me, was when we started doing non-nutritive breastfeeding, where I would pump, and then he would practice sucking. He did this for about a week, and loved it! Whenever he was a little stressed or not too happy, it would cheer him right up, and help him relax. I have seriously loved that closeness to him, and to be able to offer him something more motherly. He smiled a lot when we did this. After meeting with the development specialist and the doctor, it was decided he'd be able to try actual breastfeeding. His first real breastfeeding session was awesome. I've been able to do it with him a couple of times a day, and he's gotten very good at it. It's been almost a week since we started doing that. Eating is a very difficult skill to learn, and requires a lot of work. Learning to suck, swallow, breathe, repeat. He will often forget to breathe while sucking, and this is the main issue. But for the most part, I have been extremely impressed, and very proud of this little guy. He's learning to do it so well. He loves it, and so does his mommy.

When Alex reached 1800 grams (almost 4 lbs), he was switched to an open crib. Hooray! No more isolette. He's done pretty well maintaining his temperature, while still gaining weight. It's fun to have such easy access to him.

Along with being in Room 3, he is also in his very own private suite, an isolation room. We love this. It's much more secluded, and he still needs his ears protected from much stimulation. With the noisier babies in the other rooms, this is really nice.

We've been told by the doctors to not be surprised if Alex goes home after his due date (February 24th), and to expect that he will go home on oxygen. So even though he's made so much progress and has done very well, he still has a long way to go yet. It isn't the size that determines when babies can go home, but their ability to maintain their temperature without losing weight, and they need to be able to go 48 hours being fed completely by breast or bottle, without being supplied any through the tube. Doesn't sound like much, but it can keep babies in the NICU for a very long time.  So we're happy to continue the journey, and will just be patient. Alex is the one who will determine when he's ready to go home, and we'll give him all the time he needs!

Alex has had further eye exams, which have shown us that his eye development has gotten worse, and he has mild ROP (Retinopathy of Prematurity). He will have another followup exam on Saturday, and if it has gotten worse again, then he will need treatment to prevent loss of vision. The treatment would be a shot in each eyeball to help the affected blood vessels normalize. We are hoping that there will be improvement before Saturday, but we will see.

Steven and I attended a class for Infant Massage at the NICU, and Steven gave Alex his first massage this week. He loved it! He loved the time with his Daddy, and was very relaxed and happy.

Alex has had many de-sats (de-saturation, when his body isn't getting enough oxygen) and bradys (drop in heart rate) in the last week, since they took him off the caffeine which they use to keep preemies' minds alert enough to remember to breathe. The need for caffeine is something they eventually just grow out of.

Our concern for Alex has lessened significantly from where it was a month ago, but is still there. We of course want him to be comfortable and happy, not ever be sick, not have bad days, and be ready to leave next week! But overall, life is so much easier now than it was even a few weeks ago. In looking back at our experience, we had no idea how dire his situation was in the beginning. Seeing other families and their experiences and other 23 week babies has been both sobering and miraculous. We are grateful for his progress and very happy to have our little tiny baby boy. He's still so little, and will be for a good while. But his growth has been amazing to see, and his spirit is so big. He's pretty great. And wonderfully adorable.

Teeny Little Super Guy

A Week of Daddy

As I've stayed away from Alex this week of necessity, I've been slightly relieved to see that my desire/need to see him is superseded by wanting what is best for him. The sore throat/cold I've had for 8 days now has kept me away from the NICU, which is the best place on earth right now. I've handled it surprisingly well, but there's nothing more I desire than to be with my baby every moment. I'm so incredibly grateful that Steven has been able to go every day and care for Alex, talk to him, hold him, change his diapers and give him a bath. And above all, take pictures! After every visit, I ask if he told Alex I love and miss him. And of course he does. He's wonderful like that. I can already tell that he and Alex are going to be great buddies. 

Alex has really had an awesome week. He was extubated on Tuesday, and put on the Vapotherm. Hooray! He had a round of steroids as he was getting off of the vent, and this helps with the inflammation that comes from having a tube in his lungs, giving him the boost he needs. So far he's been very steady on the Vapotherm, and is having little to no desats, and no bradys, as far as I'm aware. He's big enough now that they can put his feeding tube down his nose into his tummy, so his mouth is completely free from anything! He's very happy about this (I would imagine), and is sucking like crazy.

Steven tells me after each visit how many nurses have said that Alex is getting so big, and is looking more now like a baby, instead of a baby who is still obviously supposed to be inside his mommy. He has quite a fan club at the NICU, and we love those nurses. It's easy to love people who love and are so sweet with your baby all the time. 

Steven gave Alex a bath for the first time a couple of days ago. And it seems that Alex loves his baths these days! He loves the warm water and gets pretty relaxed in the bath. Keeps his eyes shut for the bath, but then is wide-eyed afterward. Though he does seem a little overwhelmed, like "Wow, what's this? Water? It's nice. Hey! I don't have any wires on my body. Mmm. That head massage feels great. Oh my. What's this? A warm towel? This is the life." 

I want to squeeze this tiny little guy! Right before I got sick, I got to hold him skin-to-skin for a good while. As I had my hand on his back, he grabbed my thumb, which was very sweet and priceless. I can't wait to do that again. He's such a happy little bright spot in my life. Him and his Daddy!