You know that moment when you find out weather it was successful or all for not? Today was one of those day. I've spent so long worrying and fighting to get Liam to gain weight. There have been so many sleepless nights filled with tears of anger, hurt and worry when nothing seemed to be working. Times when it felt like we were barely keeping Liam hanging on. Times when the thought crossed my head that how could Liam survive Congenital Diaphragmatic Hernia and ECMO just to possibly not survive due to something that comes second nature to us, food. I think his Failure To Thrive was harder for us to overcome that CDH most days. Everything always came back to his feeds.
"His lungs would be so much better if we could just get him enough calories"
"This wouldn't be a problem if he was a bigger baby"
"His right diaphragm needs to be fixed but we can't do surgery until he gets bigger. We're still holding hope that it will resolve on its own as he gets bigger. If only we could get him to grow"
No matter what we did, what feeding schedule or regimen he was on, it didn't work. Or would only work for a short period of time. Today, I just wanted to cry.
.jpg)
"His lungs would be so much better if we could just get him enough calories"
"This wouldn't be a problem if he was a bigger baby"
"His right diaphragm needs to be fixed but we can't do surgery until he gets bigger. We're still holding hope that it will resolve on its own as he gets bigger. If only we could get him to grow"
No matter what we did, what feeding schedule or regimen he was on, it didn't work. Or would only work for a short period of time. Today, I just wanted to cry.
FINALLY!! THANK YOU GOD!! THANK YOU!!
We've reached a new point that we've never been before with Liam. HE'S THRIVING! The day time bolus's of baby food and special blends are working wonders. I went in ready to fight the GI and nutritionist today. I had been warned that I'd have to fight over the Blended Diet so I went prepaired with my notes, recipes, feeding regimen and callorie intake papers. It was everything they'd need and apparently more. I explained the tiny maybe 4oz weight gain between July 3rd and 18th and how I stepped up and made the decision that it wasn't good enough and things needed to be done.
Liam's GI looked down at his paperwork, then peeked at the nutritionist trying to hide a small smile. He tried to school his features before looking back at me but it was too late, I had already seen him and was waiting for his comments, unsure if they'd be negative or not. He proceeded to say:
"You know I can't reccomend the blended diet right?"
Yes yes, I know that you can't because it's not medically proven.
"You know the biggest concern is the tube getting clogged right?"
Ofcourse! If he had a GJ tube still I wouldn't be risking it.
Then came a huge grin and he said "I have heard of it and I am happy that it's working for Liam."
Not once did he say "No don't do it" or "I think it's a bad idea".
After going over everything I brought and seeing how well Liam was doing, things took another turn. I did NOT expect.
Our GI was so happy that he had doubled his daily weight gain goal and that he's tollerating my adjustmtents and changes. He said that for once Liam looks calm and relaxed and breathing easy. It was a sight they both loved seeing.
So the twist in the story? Liam will be very slowly (over the next few months) be transitioned completly off formula!! Now his new stuff will be, I believe he said something called pediatric total nutrition. He will be getting me samples and we will spend a few months doing day time bolus's before trying it at night. He explained that it's not a formula it had everything that food has but its approved. Im still aloowed to do my version of BD but will be adding their as well. His night feeds will go down when we start too. They came to this decision because the BD diet has gotten Liam to eat and drink more by mouth and that hes obviously handling regular food that he no longer needs an ameno formula. GI said it was a huge jump from one to the other, one not normally made, but from what he could see in Liam from doing BD, there just wasnt a reason not to do it. After the decisions had been made, I was completed on my work. The nutritionist did another look at my papers and said that I had done her work for her and was in awe. I was taken back by this and thought to myself "don't all parents do this?". Then remembered that no not all parents have to deal with this, that even though it might be a normal everyday thing for me to make list, charts, count callories and keep track of meds and EVERYTHING else for Liam, it wasn't normal or neccessary for most parent too.
I am so proud of my little man. Yet again he has shocked and amazed us all.
