Day 115

Day 115

Parker is doing well with his feedings. He has been taking the bottle first, and whatever he can't finish goes in the tube. Thankfully he's been doing really well with his bottles. He is up to 80cc every 3 hrs. We still don't have an official date for home yet, but I'm thinking Wednesday, Thursday at the latest. Just talking about home seems so surreal. I still have a few things to get together before he comes home. I don't want to be running around like crazy when he gets to come home. Although I'm sure I will be a little crazy.

Day 114

Another father/son day. It's so hard being away from Parker during the day. Thankfully I got out of work on time and got to snuggle with him for a while. We even started him on bottle feedings today. He gets 40cc every 3 hours. He chugged his 40cc like a champ. We didn't thicken it nearly as much as we did before, and he got it down with no problem. They'll continue to gradually increase his feeds until he gets to his full amount. He's still off the oxygen and doing well. Although they did give him Ativan to help him relax and that didn't work, so they gave him morphine right after it and he was out. I think he forgot he still had to breathe. I told John he doesn't need drugs, he just needs his mommy! I can't wait to spend the next few days with him again!

Day 113

Today was a father and son day while mama worked. I was sad I didn't get to spend the day with my son, but at least I got to visit for a while after work. John said Parker did well. He was taken off his oxygen completely. He had some morphine throughout the day, so he was nice and chill. Of course when I got there he was wide awake! They started him on some feeds through the G tube today. We got the ball rolling with home health and supplies. So hopefully as long as things keep going the way they are Parker will be home sometime next week. We are so excited to have out little man with us at home. No more driving back and forth. It'll be nice to be at home as a family.

Day 112

Parker pulled through his 3rd surgery with flying colors. He came up intubated, and he was fighting it. He was gagging and fussing. So they decided to extubate him and put him on high flow nasal cannula. He's been doing great on that. So much more chill without that tube in his throat. His incisions look great and his G tube is being vented so that his belly doesn't fill up with air. They will most likely start him on his feedings nice and slow tomorrow. Hopefully we can start getting stuff set up for home so that we can be home by the end of next week.

Day 111

Day 111

Parker had a really good day. We tried the bottle a few times with little success, so we gave him a break and gavaged. Tonight I have him a good bath settled him in his blankets and he took his full bottle. What a good boy. He does it when he wants to, and we can work with him at home on that. He is all set and ready for surgery tomorrow. His surgery is scheduled around 11am. We know he will do great! He is one tough kiddo. Surgery #3 here we come.

Day 110

Parker had a night of fighting his feeds and another day of fighting too. His reflux was so bad today that at one point that his heart rate and o2 sats dropped pretty low. So after much discussion John and I have decided to do surgery. They will do a fundo which will help his reflux and a G tube so that we can feed him when he doesn't drink all that he's supposed to. And the G tube will be a temporary thing. Once he is stable after surgery we can take him home and continue to work with him on his feeding skills. We feel this is the best move for Parker. We know he'll do so much better at home.

Parker had a pretty good day otherwise. we gave him some breaks from feeding and gavaged it. He was really happy this afternoon. He was cooing and making sweet happy noises. We did some tummy time so he could work on his head control. He does really well with that. Gets those legs kicking too. We love play time. But mama love snuggle time even more. We get a lot of that!!

Day 109

Had a good sleep over with Parker. He did really well waking up on his own and taking most of his bottles. Then the morning came and it was a fight to feed him. All day long he wouldn't take his full feed. Very frustrating. I don't know if it's because of the thickness of the formula makes it harder for him to suck, or if it's the rice that makes him fuller. So he had his NG tube placed back and we gavaged whatever he couldn't eat. I feel like we're running out of ideas for this kid. We had a pow wow with his doctor. We talked about the possibility of a G tube for his feedings if he continues to not drink all his milk. John and I already have discussed the possibility of a G tube, and we're fine with it. After discussing our feelings and thoughts with Parker's doctor we decided to set a deadline. We have given him a week. If he does not show progression then we will plan for a G tube. Mr Parker better show us what he's made of. Whatever happens we ate still proud of how well he has done and how much he has overcome!