Axel had his G-tube placed on October 29th. It was quite different than Jaxon’s procedure because Jaxon got his while we were still in the NICU whereas Axel did it as an outpatient. So it was a lot harder for me as I had to get up at 3am (who am I kidding, I just didn’t sleep!) to leave the house at 5am (1 hour pump sesh included) to get to the hospital for 6:30am. Whew.
It was a crazy day and kind of weird being alone with only one of my babies. Axel cried most of the way to the hospital (he had to fast 6 hours before surgery) but we made it in time. We waited around for them to take him to the OR. I had to change him into a TINY hospital gown. Like seriously it was just an adult hospital gown shrunken down to baby size (and with long sleeves). So cute! Though I couldn’t figure out how to tie it. Guess some things never change.
The surgery was quick, only about 1.5 hours. I had to stay in the waiting room for them to find me when it was done. Not a problem, other than I had to pump and it was a bit awkward. I had to go into the bathroom to hook up my pump parts (I’m not good arranging things under one of those covers. I need to see what’s going on people!). The bathroom stunk like poop and it was pretty gross. Plus I had to haul all my bags with me (Pump bag, diaper bag) since I was alone and I didn’t want them to get stolen. There were about 20 people in the waiting room like 5 feet from me as I pumped but I had to do it… pumping in public is just always going to be awkward I think! The worst was I couldn’t wash my pump parts afterwards (because the only option was that gross poop bathroom – no thanks!).
After the surgery, we waited for 3 hours for a room to be ready upstairs. They had a normal room ready for us but Axel had a few desats after surgery and needed more oxygen than a baby his age should, so they wanted him on the more intensive monitoring ward. Not surprising considering his chronic lung disease – but he’s just fine! Just takes his little lungs a bit longer.
I rushed to pump again when we got to our room since he was still sleeping. It was a really nice room, in the new part of the hospital where the NICU is too. It had its own bathroom and a pullout couch for me to sleep on, and a recliner to cuddle Axel on. It was weird seeing him with all the monitors and wires again (pulse ox, heart, respiratory etc) and he had an IV in his hand again which made cuddling cumbersome. It’s been so long since we had to navigate so many cords to cuddle! Now at home it’s just the one cord sometimes (for G-tube when it’s running).
I stayed overnight and Axel slept okay, let me get about 4 hours. He has been vomiting a lot as we are working back to full feeds (after having an empty tummy for a day). He vomits a lot anyway so it’s hard to know if surgery was the reason.
We got to come home the next afternoon since we didn’t need any training on the G-tube or care for it, because of being through it with Jaxon. I’m sitting in their room right now watching their feeds go as I type this. With the NG tube, we always had to watch Axel to make sure it didn’t move out of place or it could be very dangerous. With the G-tubes, we don’t have to totally watch them during the feed, because it can’t move into the lungs or anything like that, but I want to make sure Axel doesn’t move too much since the hole (stoma) is healing. I gave him a break on trying a bottle this time because he had just vomited up bus Tylenol and was fussy but then settled in his crib. So he gets a pass for this one. 😉
It was hard being back in the hospital. I kept thinking, “what if he doesn’t get back to full feeds soon? Will they keep him here? Will he get to go home? What if something else happens to keep him here?” Etc. I mean if something did happen obviously I’d be grateful we’d be in the right place, but still. It gave me a lot of anxiety.
Another thing that was weird was making decisions for Axel… I got to decide when we fed him, how much, how long to run the pump over, etc. I was used to the doctors making those decisions in the NICU. They were always sure to involve us as parents and we were free to speak up if we wanted changes, but it felt weird this time being the ONLY person making those decisions. Ya know, like a parent?! Honestly feeling like a mom is still a foreign and new concept to me. I think it will take awhile to sink in fully with everything we’ve been through.
We’re so glad Axel has his G-tube! We’ve come to accept that while it’s not what we wanted for either of them, it’s a device that helps them live. Without it, they would not be doing well. They need calories to grow. We look forward to trying solid foods by mouth in a few months and hope they take to those well! But for now, we’re thankful for their tubes for helping us get to that point.