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. 

Double Ear Infection/BlendedDiet/Lanie

For once Liam is not the one sick, and for that I am very greatful. I am in the 5th week of an ear infection. Almost at the 5 1/2 week mark. When it started, my right ear clogged up. After two days, I started buying everything on the market I could find to help. NOTHING worked. After two weeks of this, and worsening symptoms, I broke down and went into Urgent Care. This was a monday.
          * the right ear was completely clogged with wax
          * the left ear was just days away from being completely clogged.
          *Both ears were flushed and mass amounts of gross wax came out (Ill spare you the details)
          *The left ear was perfect besides the wax build up.
          *The right ear drum was red and inflamed. It was infected
The infection caused me to have  trouble breathing, a cough, stuffy nose, goopy right eye and migraine. The doc prescribed a Z-Pack oral antibiotics and antibiotic eye drops.

The following monday, I was worse instead of better and yet again could no longer take the pain. I returned to Urgent Care, this time with even worse symptoms. The doc this time was very understanding and had just gone through this herself. After a quick look she said both my ears were infected from the drums to the canals and my glands were swollen in my throat. She prescribed another oral antibiotic, antiobiotic ear drops and sulfate ear drops to dry out my ears and prevent future infections. She told me that people who have chronic allergies tend to get this problem alot. I explained that yes I have chronic allergies but have never had this issue in the past. She said if this course of antibiotics doesn't work then I am to go to my primary and request to be referred to an ENT. She said she herself just went through 3 months of this and 6 courses of antibiotics before going to an ENT and didn't want me to go through this that long. She saw Liam and I explained his medical history and needs and she pushed me even harder to make sure I get this taken care off. I'm halfway through with this course of antibiotics but my ears are still hurting. Some days worse than others. I think it completely sucks and wish it were over very soon.

Liam has been started on 2 baby food bolus's a day now. Its called the Blended Diet. I push it through his tubie. Since starting it Ive noticed some significant changes:

*he sleeps better all night long. Doesn't wake up like before.
*has more energy
*is less cranky
*wants to eat by mouth more and is hungrier
*drinks water out of a sippy cup
*stool is more normal
*his color looks better
*you can visually see him putting on weight. The top part of his legs look chunky, his arms and face too. His tummy is even starting to even out. Before his stomach was super skinny and not porportioned to his body. Now its almost even.
*he tollerates feeds better

He seems to be doing great. My goal was to get him bulked up before winter because bulking his body and immune system up will help fight off bugs. Sister is starting school and will surely bring some nasty bugs home so its very important we get a head start. Most GI's do not agree with the blended diet because your putting food into the feeding tube and their worry is that it'll get clogged. I know I will have a fight on my hands when he goes back and I explain what weve been up too. Liam was on 30 cal formula for 3 weeks and still didn't gain any weight. I couldn't let another 2 weeks go by without doing something. He had already started to not tollerate bolus formula feeds. It was time to be proactive. I spent 2 years doing it their way and their way didn;t work. It was time to show them that there are other ways. Our peditrician approved it immediately. He already knew about the blended diet so when I told him what I planned to do he was all for it. There have been no negative side effects of BD.

Lanie has been doing good. She's having some issues with change. Liam turned 2, shes getting ready to start school and shes unsure of herself. It's been a problem. Shes so emotional about everything, will cry at the drop of a hat, LITERALLY. Shes says shes excited about starting school but she has stopped asking how long before she starts. Before shed ask me daily. All we can do is comfort her and tell her everything is going to be fine and that theres nothing to worry about. She'll see.

Day in and day out its the same old routine. Work with the kids, clean the house, update facebook, attend to Liam's medical needs.

Liams new FB page is http://www.facebook.com/groups/LiamMichaelBryant Its a private group so we can monitor it better.