2:30 am
We were in full “Get Peter to eat to get him out of the NICU mode” as we woke up in the middle of the night to go feed him. He still wouldn’t take the breast, so to try and keep the overall feeding time down we transitioned to bottle after about 10 minutes of trying. He also really struggled with the bottle, but after enough prodding he finally took it and drank his full 1 ounce. (His stomach is about the size of a marble right now, so that’s a lot). His blood sugar went up to 66 which is great as well and he’s overall just looking good! If we can get just a couple more good feedings in to prove he can sustain then they’ll let him go soon.
5:30 am
Back up and at ‘em to go feed Rocky. Started off with a similar story, he tried breast feeding and just wouldn’t take. But this time we tried to get him to take the bottle, and he wouldn’t either. Wouldn’t wake up long enough to even get it in his mouth. So we ended up having to put a feeding tube down through his nose to get any kind of calories in him. His blood sugar was still fine, a 70, but it’s just not a good sign for him to never be waking up hungry. And where we don’t really have great control over his blood sugars yet, we can’t really risk him not eating and dropping. Normally a baby not eating means a hungry angry baby. A baby with blood sugar issues that isn’t eating for long periods of time means possible long term brain damage. So it’s just not something we can risk.
Having to use a feeding tube is a small step back though. Probably means having to extend his stay here in the NICU. We can’t really even talk about discharging him until he is eating better. So our focus is just right there.
Rachel and I are both so tired, but we are still happy that lil rocky is getting the care he needs. We’ve been assured this low energy is very normal behavior for a bat at his gestation. They just aren’t quite fully developed, so first he had to put all of his energy into breathing, and we helped him out with the cpap, now he has to put all of his energy into eating, and he’s just needing a little bit of help with that too. Given enough time he’ll perk up and have more energy to eat. It’s just hard to be wishing our baby would be doing all the things most parents are hoping their baby would be doing less of. Wishing he would sleep less, wishing he would fuss more, wishing he’d have any display of comfortable energy. We’re praying our baby does more of. He’ll get there, it’s just hard to not have him there yet
8:30 am
Rachel’s doctor came through on rounds to check in on her. He said everything is looking right on pace with her, but said he’s not gonna consider discharging her early when Rocky is still here. So we’re gonna try and max out the hospital stay that insurance will cover for Rachel so she can stay close. He nurse came by too and gave her the last dose of medication. Being her last they got to take off her IV from her arm, which is the last piece of equipment still on her. So she is well on the road to recovery, just still in a lot of pain, and a lot of the simple things (like walking) are still just gonna take a good recovery time to get back to.
We came down to feed Rocky, and he still just wouldn’t wake up. Not for a breast, not for a bottle. So the nurse just had us hold him while they pumped the breast milk though his feeding tube. They say it’s still good to build those positive associations of him feeling full while being held/close to the breast so that he doesn’t develop any aversions.
11:30 am / 2:30 pm / 5:30 pm / 8:30 pm / 11:30 pm
We’ve settled into a schedule with Rocky now, where we go down to see him every three hours, I change his diaper, Rachel breast feeds him (not a lot comes out but they want him to keep practicing) then they start him on his “nasal gavage” as they call it. Feeding tube up the nose to the layman. It pumps milk directly into his stomach for ~30 minutes while Rachel and I get to hold and snuggle him. Some of the best bonding we’ve gotten to do with him so far and we love it.
In between feedings we’re eating, trying to get as much sleep as possible, working with lactation, working on Rachel’s discharge checklist, and sleeping more. Sleep seems to be all we do and yet somehow it’s never enough for either of us to feel rested. Realistically we’re probably totaling 4 hours a day, but it’s broken up into a bunch of 15-60 minute increments.
Peter did finally get to meet Lucy today. After the nurses told us this morning that he was gonna have to go on a feeding tube and wasn’t gonna be ready to go home by today, we asked if there was any possible way we could get an exception to the 18+ rule in the NICU so that Lucy would be able to see him before she left for home. The providers and nurse pushed the request up the chain and eventually the floor manager made a compromise, not to have Lucy come into the nicu, since that could compromise the safety of all the babies (extreme, I know, but there’s legal things there I guess) but instead she approved us taking Peter outside the NICU just to the other side of the entrance doors for just a few minutes so Lucy could come say hi.
It was a pretty emotional little reunion as Lucy got to meet her nephew for the first time. Becky and Jared were there too. Before everything fell apart we were excited for Lucy cause she has never held a baby before, and little peter was gonna be the first. But given the circumstances, just being able to see him up close in real life meant the world to Lucy and to all of us. Very grateful for the nicu staff that were willing to accommodate that for us.
The one fun update from all the otherwise same repeated visits to see Rocky. As I said before, nicu staff like the parents to be involved in caring for the babies. So I have usually been the one that changes his diaper, and changes his clothes and switches his sat monitor and hands him to mom to feed. Rachel’s been in a lot of pain with her recovery and it has been pretty hard for her to even stand up sometimes. But tonight she was feeling pretty good and was able to stand up at the end of his feeding and be the one to swaddle him up. After she swaddled him he fell straight asleep, and we stood there with him for family prayers.
