Today I went into the office for half the day and then worked from the hospital in the afternoon. I had a sobering conversation with the doctor this afternoon about E’s feeding progress. I guess maybe I was naive or in denial but I kept thinking any day the light bulb will go on and he’ll figure out how to nurse. But the doctor today gave me some preliminary information about the possibility that E could end up having g-tube surgery. Basically they insert a port in his belly directly into his stomach, so instead of feeding him through a tube that goes down his throat, it goes straight to the source. It’s a semi-permanent solution to chronic feeding issues. In some ways it makes life easier becaue there’s no tube for him to pull out, and while dressed he’ll look just like a normal baby. But… surgery. And the dashed hopes that he’ll just grow out of this. Granted, we’re not quite there yet. The doctor said we still have a few weeks before we start seriously talking about surgery. But the fact that he’s not made any progress after that initial latch a couple weeks ago isn’t good news, either.
The physical therapist stopped by after I talked to the doctor, and I could barely get a few words out to her before I broke down. I’m just so heartbroken. But she’s going to work with us and help us hopefully move toward feeding by either bottle or breast. I had held off on introducing a bottle because I’d really like him to breastfeed — but it’s not even like a bottle would help at this point. In fact, the physcial therapist said she wouldn’t be comfortable giving him a bottle because it would probably overwhelm him and he’d shut down. She gave us a few pacifier exercises to do whenever he’s alert, and then maybe we’ll see if he’s ready to try a bottle in a week or so. Meanwhile, I can keep trying to nurse him a couple times per day. Once we introduce a bottle — IF he even takes it — there’s probably no going back to breastfeeding. But as much as I hate the idea of giving up on breastfeeding, today’s conversation with the doctor certainly put things in perspective. I’ll happily bottle feed over having him go through surgery and feeding him through a hole in his belly.
Of course, we got all this news right before D and I had plans to go to a concert tonight (yes, another one. We had a busy summer planned, thinking I would still be pregnant!). We had a good night out tonight together, though I kept spilling my soul to anyone who would listen. I guess I was a real buzz kill tonight.
3 thoughts on “NICU day 72”
I will cross my fingers for you that the doc is wrong. I get they want to be honest -it’s their job, and they have seen it before but this kid is a fighter. I’m going to cross my fingers that after all he has overcome he just needs more time. And, B did bottle first and then we clawed our way back to bf (he did both in there mind you). So there is hope yet. It’s good to know reality and hear science. .. now we’ve got to look at the art of hope. He may surprise us yet. After all, you try to breathe, grow, and eat all at once. Plus we all know white males are the slowest babies to improve in the nicu. Basically they told me the boys were usually the laziest to figure out eating.
It’s also perfectly ok to be scared, heart broken and a buzz kill. There is so much about this journey that isn’t over yet.
In addition to PT and lactation do you have a speech therapist in yet? They usually have great feeding perspective too. We had PT/OT and speech as a team about this time.
H also learned the bottle first (and would bf with a nipple sheild 1-2 times per day) until we went home. I was just so focused on getting him home that I didn’t nurse him as much as I wanted. I really never knew if he would figure it out, and the dr’s and nurses weren’t super positive. But once we got home nursing him got way better, and while he still had to have fortified bottles, he ended up breastfeeding until he was 18 months. Don’t give up, he could still surprise everyone! A friends baby went home on a g tube and is about to have it removed. every baby is different and Emmett has some time. He looks healthy and strong. Hugs to you both!
Oops that was from me 🙂