Shutting down

Today seemed to be such a big day and it's only half done. 

This morning Liam was so excited to go to preschool. In fact at one moment he thought we were leaving without him and he got upset. When he realized he was going he was super excited. 

See that smile? That's Liam happy for school. 

Everyday we wait at the gate until the teachers are ready for us. This pic screams "let me in" lol. He was shaking the gate because he wanted in so bad. 

Every morning the kids go find their names on the table then stick the. To the Velcro strips. This helps them recognize their names. Liam had no trouble finding his. 

Today when I picked Liam up from preschool I could see in his eyes that he was shutting down. Today had just been too much for him. This was the moment I feared. I was afraid that every school day would be like this but turns out this was the first. He refused to talk. He looked at me but wouldn't make eye contact with me or anyone. He wouldn't wave bye. I asked him if he wanted me to carry him and he just lifted his arms. After picking him up he laid his head on my shoulder hiding his eyes in the crook of my neck. It broke my heart to see him like this. 

I put him in the car seat and he just sat there quietly until we got home. Still at home he refused to talk or play. I have him a bolus feed and took his shoes off. He soon fell asleep but the rest was short lived. He woke up extremely cranky and cried and screamed. Yes today had deffinatemy been too much. Unfortunately it wasn't over. I had to take him to his GI appointment. 

At GI Liam calmly and quietly petted Nemo. We got some good news. 

As far as his proportionate growth he is in the 3rd percentile. That just means his height, weight and head are more porportionate than he used to be which is good. His weight and height for age is still off the chart, or barely on I'm not quite sure. We agreed that as long as his porportionate growth is getting better then we wouldn't worry about the age to growth ratio. Brittany (Our GI's NP) and our GI are ok with his growth as long as it's porportionate. They'd love for the porportionate growth to be in the 10th percentile and I agreed to up his feeds to give it a shot. They don't expect miracles with him and understand that if he doesn't make it then he just doesn't BUT they said that if he continues this growth pattern then he will reach it by the next appointment in January. 

Liam's stoma is showing signs of prolong but the good news is that what had popped out of his stoma popped right back in when I pushed on his gtube. She said this was ok as long as it popped back in and didn't stay out. If it stays out then we have a problem she said. The skin around his stoma is breaking down 😔 and I have to keep a close eye on it. If it shows sign of infection I have to call right right away. 

They gave me samples of a protective cream to keep this from getting worse. I have to use it and neosporin. She said that it should be better in about a week and a half. 

On other good news she gave me more gauze because home care isn't sending enough and she's contacted them and sent a script for them to tripple the amount of gauze he's getting now. She said I should not have to pay for it ever. 

What an eventful half day and that was only for Liam lol. I feel blessed that Liam has such great care providers that actually care. 

Take That FTT

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.

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.