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. 

Inner battle

I've been ragging an internal battle since wensday when I took Liam to his GI. At first the wanted me to completly cut him off of eating and drinking orally but after my protest they said I needed to atleast severely restrict what I have him. They're doing this because every one of his doctors and specialist thinks he's aspirating while eating. He did just get out of the hospital for aspiration pnuemonia so that didn't help our case. I told them that I would not restrict him but I would not offer him food or cuppies but if he wanted it I would give it to him. I've cought myself offering him food and cups all weekend. I can't help it. We've waiting 2 years for him to eat by mouth. I've spend the last 1 year and 9 months fighting with the feeding pump. Many many times in tears because the pump refused to work and Liam's intestines fought against it. I even broken down once and looked Liam in the eyes and asked him why he refused to eat. The feeding pump has been my worst enemy since he's gotten it. I've spend countless nights up all night trying to get it to work. I think of how Liam's pretty much slept through night for the last year and a half (not counting waking up for nightmares) and how much sleep I've lost out on during that time because I had to continue to get up to feed the pump. I can with all honesty and sincerity that I am Truely exhausted. It took 2 years but I am exhausted. I get frustrated. I've worked so hard getting him to eat by mouth the last year and 9 months and now he's finnaly eating small amounts and they want me to stop. Since wensday Liam has thrown atleast 5 fits a day for food. He's cries and screams until he gets what he's asking for. Even tries to get it off the counter himself. How am I supposed to deny a baby who is desperate and begging for food? I can't. We'd give him about 5 minutes before we would cave an give it to him. Today being day 4 we don't even deny for that long. Logically, how is he ever going to learn to swollow properly if he doesn't keep at it? He's not! The doctors at children's did this to us once before when Liam was just starting to eat. He was 6 months old and they're way to his heavy breathing and possible aspiration was to just stop feeding him. When Liam was 8 months he was flown back to UCSF where they were apauld to find out that Childrens hospitals solution was to stop feeding him. They restarted him on oral feeds. He's supposed to have a swollow study done on Monday. I am praying hard that he isn't aspirating but from what his lungs sound like after eating sometimes I think he is. I'm also praying that there's another solution besides to stop feeding him. If he's aspirating from his stomach up instead of mouth down then his surgeon will be called in again to reevaluate redoing his Nissen. We know for a fact that he is aspirating from the stomach up we just don't known if he is from the mouth down. In aggravated at the entire situation. I hate watching Liam go through all this. I am also amazed that he continues to be happy and have a great temperament despite everything. With Gods grace he will continue to be this way and just take life in stride. 

Feeding Pump Tip

After months of Liam sleeping through the night but having to continue to wake up to add formula I the feeding pump and to re-prime it every 4 hours, I was fed up! Formula cannot stay un-refrigerated for more than 4 hours because it goes bad. My solution? I got those insulated bags from when they'd mail me Liam's refrigerated meds that needed to stay cool during the journey. I figured I meds can stay good traveling for 2 days in these bags, surely formula will be fine for 12 hours. I cut a small hole in an upper corner, where the opening is so I could hang it on his IV pole. Then I cut a hole in the corner diagonal to that big enough for the tubing to go through. After filling the bag with the formula he needs for the night, I add a few ice packs to keep it cold. Liam normally uses just a bit more formula that the bag can hold at one time so I just refill it after I go to bed a few goes after he does. I've been doing this for a week now and its been a life saver. The next morning the bag doesn't look gross from old milk either because the milk never went bad. His tummy also handled is better. You can buy insulated bag at most stores. I've also used a zip lock bag and a few other things but this works the best.