NICU Day 9

The mornings are always the toughest part of the day. Besides the letdown of waking up to no baby kicking the inside of my belly and no baby sleeping soundly next to my bed, the first thought that pops in my head is: “Is Sol ok? Did he have any issues overnight? Are we going to get bad news today?”

We can call Sol’s nurse at any time of the day, which I typically make Mike do around 8am. (It is less scary if he makes the call.)

This morning, we decided to forego the call and headed straight to the NICU at 10am. Sol’s nurse for the day, Stephanie, filled us in on all the updates for the day as soon as we arrived.

The update: Sol is still on a roll!

Other than the news that there were no updates overnight (as if Sol is saying to me “Don’t worry, Mom, I got this.”), many positive changes are in store for the day:

– He took his new feed level well, so they are increasing feeds again, from 40ml of breast milk every 4 hours to 40ml of breast milk every 3 hours.

– Michelle from Occupational Therapy stopped by in the morning. She said he was very active and kept his eyes open for her. The two things she noticed were that his eyes tended to shift to the left and that his left side was less active than his right. The good news is that there are exercises that she will show us to help with both of these. She is also going to work with him a little every day this week, and then will help us get set up for in-home and outpatient  therapy after Sol comes home.

– Speech Therapy also came by, but Sol was a bit too sleepy for her to get a proper evaluation. Stephanie did work with him on taking a pacifier, which he sucked on a bit this morning. He was happily sleeping with it in mouth when we arrived at the hospital.

– He is doing well on his current oxygen levels, so the team will move him to a lower level of oxygen on a less aggressive machine.

The plan for today is to have another head ultrasound and 12 – 24 hours of EEG. These will continue to check on brain swelling and brain activity, respectively. While it’s no fun to watch your child go through something they don’t like, we always get a kick out of Sol’s reaction to the EEG lead application process: his face gets red and he vocally complains each time they blow cold air on his head to affix each lead. After having a sleepy baby for a week, it’s nice to see a some attitude come out of the little man.

To everyone keeping Sol in their thoughts and prayers, thank you. We are so encouraged by Sol’s progress and by everyone’s messages, and we know that so many prayers have already been answered. I hope to have more positive recaps for you as we move through the week.

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NICU Day 8

Today was a good day.

Sol’s head ultrasound confirmed that the swelling in his brain is continuing to subside. All of his blood labs are coming back as normal. His feeds are increasing from 30ml every 4 hours to 40ml every 4 hours, and if he takes the increase well, on Monday they will begin feeding him every 3 hours and will take him off the TPN IV that is now providing him with extra nutrients.

Early this upcoming week, he will be evaluated by physical therapy and speech therapy teams. His physical therapy team will work with us on a plan to maximize his mobility – he is already quite wiggly! Speech will be looking at his ability to swallow, which will be super important in his progress to move away from IV feedings to bottle feedings. He’ll continue to have head ultrasounds every other day to monitor brain swelling, and then on Monday, they’ll do another EEG to monitor his brain activity.

Most importantly, Mike and I both got to hold him and read to him for a good 2 hours today. The extra bonus was when he opened his eyes (something we haven’t seem much this week) and looked right at Mike. These little steps are huge in terms of him coming home with us. We hope this good juju will carry into this week!

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NICU Day 7

Having an infant in NICU is tough stuff.

I spend roughly 3 hours there every day, rocking Sol, reading to him, telling him about the dogs that he’ll get to live with, his room, his grandparents, the great grandparents that he reminds me of, all the plans I have for him. I try to push out of my mind the fact that some of those plans might never come to fruition – it all depends on the damage that’s been done to his brain and how his brain decides to rewire itself. This situation is tough for any new parent, but for someone who likes to plan every minute of her life, its excrutiating.

At night, I ache to go back over there. I worry that he’s lonely or that something will happen because I don’t go. I itch to hold him in my arms again, to smell his sweet smell (according to Mike, he smells like sugar cookies.) In reality, if he were at home, he’d probably spend the same amount of time sleeping, and I might handle him the same amount of time that I do when I visit him at NICU. I realize that he’s getting amazing care, that there’s a nurse always watching him, that if something does go horribly wrong someone would call me, and that more likely than not, when we call the nurse in the morning for an update, every thing will be status quo.

The last couple of days have shown us great progress. He’s getting more active every day. While he isn’t fully awake yet or opening his eyes, he’s starting to fuss, cry, punch, kick, and wiggle like crazy. He had a head ultrasound today, which our doctor believes will show us just how much his brain swelling has gone done. He’s due to start speech and physical therapy early next week, the former to make sure he can still swallow without a problem and the latter to show us what activities we can do in the instance that any side of his body was weakened by the stroke. An EEG next week will show us if his brain is more active, and an MRI will confirm what areas of his brain sustained the most damage. Regardless of what those show, there’s a chance he’ll come back further than even the doctors believe he can – I’ve read stories of similar miracles and know it can happen. What I’d love is just to see his eyes. Maybe tomorrow, we’ll get something just a little more. I will continue to have hope.