Tuesday, August 12, 2014

Rods and Tubes

    I really need to get better at keeping up with this, at the very least for posterity's sake.  Next week, Evey and I will be left alone for the first time in our entire lives - the older 3 will all be attending our beloved American Heritage School together - what a bittersweet day.  So, there will be much more time to blog, work with Nate, and hopefully clean.  Maybe in that order, maybe not.
     On a short note, Evey had yet another spinal expansion surgery.  She handled it like a champ; we still don't take that for granted.   She came out 2 inches taller, a little mad at me, but mostly hungry.  Which brings me to what I've been wanting to write about for a while.  Evey's tube feeding weaning success story.

    Outside of the medical world, the tube feeding phenomenon is a little hard to understand.  There are several different reasons why a child has to be tube-fed; Evey's was apparent from her first few weeks of life.  From the very beginning, Evey didn't have the proper throat function or construction to swallow food.  Most of what she drank from her bottle ended up right in her lungs, which ended up turning into pneumonia, which ended up with her going straight to the PICU at Primary Children's Hospital, which is where she lived for what seemed like the whole first year of her life.
    By year two, she had received over a dozen surgeries, she was getting stronger, and was able to take bites of food.  However, most doctors, nutritionists, and dieticians usually don't have a clear-cut 'weaning off the tube plan' because every child is different, and quite frankly nobody wants to get sued by telling a parent with a medically fragile child to wean their kid off their main food source ... trust me, I get that.  So we were doing bites here and there, while supplementing with formula through her tube.  In return, Evey's GI tract got really angry at her.  She started vomiting more and we got so frustrated we just wanted to return to the formula altogether.
    As a last ditch effort, I decided to stop in at a different dieticians office at the hospital while we were there for a surgery, and this awesome, bold dietician told me to just go try and feed Evey by mouth all during the day and make up for what she wasn't eating through formula at night.  We tried that for a week and it went pretty well, but she still wasn't getting enough calories during the day.  She would barely drink anything throughout the day because the formula she was getting at night kept her full and not thirsty, and she still had vomiting issues.  So one Sunday night after much frustration and prayers over the issue, I looked at Nate and told him, I'm just going to cold turkey her for 3 days.  I'll count her calories, keep a close eye on her, and if she loses weight and gets dehydrated I'll put her right back on the tube feeds.  My mothering instinct was telling me to go for it.  (Disclaimer: all of this which is not medically advised - I am by no means a doctor, nurse, or medical professional - even though I pretend to be a lot of the time) but hey a mother's gotta do what a mother's gotta do.
   So after 3 long, incredibly stressful days of counting calories and layering whole milk with heavy whipping cream, our girl did it!  She conquered the tube beast, and decided that food is for her and she wanted to be a part of the gluttonous party.  We are officially 5 weeks tube-free and one surgery out and she has gained a pound!  She has not gained this much weight this quickly in a long time.  Needless to say, we are so happy.  We are still working hard staying on top of her calories, but we are officially out of the woods.  She now has an incredible appetite and is a legitly a Johnson and gets full on hangry. (hungy/angry)
    All of the stars had to align for a successful wean and by no means is it this easy and advisable for everyone (more disclaimers), but we are so grateful and so happy to have some typical toddler stuff going on with our 2 year old lady who is anything but typical.  We love you Evey, especially your older sister Zoey, who now follows you around trying to feed you everything because she's so happy that you can eat with her.  And as usual, Nate and I cannot take credit for Evey's huge accomplishments.  Her spirit is strong and we continue to have amazing support and love both on this side of Earth and from her peeps on the other side.  We are blessed.

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