We’ve had Dex home for 7 weeks now, and we fiiiiiiinally feel like we’ve gotten in the swing of things. I’m still amazed at how many reach out to us to ask how he is. How we are. It means so much to have others cheering for him.
Surgery threw us for a loop, but much of what we are working out now is the same as the NICU. Lungs, eating, weight gain. Lungs, eating, weight gain.
The silver lining of surgery (other than that our little dude rocked it, and we got to see our favorite nurses from L&D and the NICU) was that while we were in the hospital, we found out that Dex has a pretty severe milk protein/soy allergy. Calprotectin measures intestinal inflammation, and the upper limit of normal is 160. Dex’s was 883. So, in an effort to secure his status as Million Dollar Baby (no, really, this priceless little babe may do it!), he’s on Elecare, which is an amino acid based formula that’s $44.97. A can. 🙈. He’s now been on it for 4 weeks, and we are seeing a difference in his comfort level and weight gain. Yay! When we went for appointments the last two weeks, he finally hit the ounce a day goal.
We met with pulmonology the week after his surgery, and they gave us the ok to begin weaning his oxygen. Ahhh! Neonatology had warned us that sometimes pediatric pulmonology is slow to wean, but his doctor was impressed with how he did with surgery and his first month home. He came home on 0.5L flow and is now down to 0.25L. Despite being “allowed” to wean him to 0.125L, Dex is really the boss and will let us know when he’s ready. I don’t think we are there quite yet, but once we are, he will be allowed to try 2 hour stretches without it. 😱. He’s 16 weeks old, and I’ve never had a tube free little face. I’m 100% positive me crying is a bet you’ll want to take. This sweet boy has been through so much, and I’m just so proud of him.
This is our first week since he’s been home that we haven’t had a doctor’s appointment, and that feels pretty monumental. Even though he is only 8 weeks adjusted, he’s doing many things that a term 3 month old would do (his chronological age). At his appointment, he sat on my lap and tracked his pediatrician around the room. He’s rolling over, cooing, and even cracked a grin for his cousin and me this weekend. While he stared down his doctor, she said, “he looks just like a term 3 month old! Just a miniature one.” 😂. He is still a tiny little tater tot (just reaching 10 lbs!), but I continue to be amazed by all the ways he beats the odds.
My little boy that wasn’t supposed to come home with me is here. And he’s thriving. God’s sweet grace.
He still has battles ahead. Sometimes it’s tough to sort out what’s from prematurity, what’s from my water breaking so soon, and what’s just who he is. But, he’s a tiny little fighter and oh so loved, so we will just keep taking things as they come and be thankful he’s here to face them.
I don’t think I could ever be prepared for all the ways Declan has turned our world and our family upside down. A baby boy has never been more loved by his sisters. He’s the apple of Harper’s eye, and every day when she comes home, she rushes to wash her hands and change her clothes and then demands to know where “her” baby is. Her mini-mothering skills have been the only reason our family has eaten something other than takeout over the last month and a half.
The last six months have changed me in many ways, but most of all they’ve strengthened my sense of grace and patience (which I’ve heard is a good thing with three kiddos). No Pinterest-worthy preschool class present? Oh well. Baby crying all night? Bring on the snuggles. When you’ve experienced imminent loss, it helps everything become Big Picture. Our baby is home, our girls are healthy and happy, and we couldn’t be more thankful.
