Day +18
Bella was never allowed a chance to eat normally. Too many bowel obstructions, surgeries and complications destroyed her chance,no matter how hard we tried.
We never stopped trying though, and supporting her but she has had to overcome and push through many obsticales just to eat and drink.
I cried today as we attempted another "Food Play/ Tasting" time because my daughter didn't just taste and hold food... She ate and wanted more! If you could understand the agonizing details of what it has taken to get to this today... You would understand how much of a mirical this truely is.
Our baby girl has had to fight to keep food down after fighting to even be able to eat it. Her first 8 months of life were a struggle with only being fed by TPN through her iv, and NG sump down her nose/throat to suck out stomach contents because she had a blockage while waiting for surgery. This hard, plastic sump tube had to be reinserted down her throat multiple times. Then she had the ng feeding tube when the ng sump tube could finally come out. She battled many days and nights being NPO for many reasons. NPO is when she is not allowed anything to eat or drink. Bella also fought to eat because she fought multiple daily emisis episodes because of her bowel issues and bowel motility issues that became a problem from all the surgeries. Many days I have sobed and been scared wondering if my baby girl will even care about hunger any more. She's been given a hard road from all this I have seen her days with out food become less and less of a problem for her. That's terrifying. She's just a baby and already fed up, leaving her with no desire to eat. She has been "fine" with not eating because of all the horrific situations she has been through.
It's gotten to a point where (well even by month 2 of being in hospital) I cry when I see other children eating or other babies being able to drink from a bottle. I break down and cry. I still can not hold back tears when I see other children eating so easily. This weighs heavy on me because what Bella has gone through.
But her hard work is paying off! She ate today! I'm full of pure joy. I know she'll eat on her own some day, I know she can do it.
Remember back in Sept. 2014 when I was so happy Bella had her ng tube out of her nose and was wanting formula? Thinking about those days is so devistating for me now. Not knowing she had SCID and the risk we took feeding her the way we did, when she was still puking a lot, and then she aspirated and got lung infection. The guilt I feel from those days puts an unbearable weight on my chest, when I think about it, I can't breathe.
I know... Most tell me, "Kyla, you didn't know." Ya, but that doesn't erase the pain I feel from the risk we unknowingly took, trying to feed her the way we did. We were just so happy she was wanting formula, at that point she still wasn't eating food. It was detrimental to feed her enough so she had the nutrition she needed. I didn't want to have to put that ng down her throat ever again. It was devastating.
Bella tried so so hard to want to eat. She faught so hard and I don't blame her for only being able to handle so much. Months of a tube down her throat, puking, thrush in her mouth when we didn't even know, underlying SCID being the reason why she dealt with these infections for so long. It tears me apart thinking about what she's had to go through just to eat, just to try to drink. So the doctors weren't suprised she developed an oral aversion and would not want any bottle, food or hand near her face. She even stopped sucking her soother for a while.
Her history is proof why today's hunger for tomato soup is such a miracle.
We were never giving up on her of course. I've always told myself, my baby girl is going to eat someday, she'll understand what hunger is and be able to eat someday. Until then, I'll do everything I can to help her.
When she was fighting infection in October and when we found out she had SCID and needed a BMT in Novemeber, we were told, "No Oral Feeding."
Can you imagine being told you can not feed your child? After all she had been through, after a year, and I still couldn't feed my own child. The risk of teaching her to swallow food, was too great because we could NOT risk aspiration that could lead to infection, before transplant.
So the Gtube came Dec. 1st,2014. That was part of her surgery, a tube in her stomach to feed her that way, and not by mouth.
Thank God the ng tube was finally out of her nose/throat. That was horrible and no child should need to be held down to have that inserted multiple times. But no one could foretell the future, so sadly she had the ng for a year. Otherwise, the Gtube would of came in sooner. But we always thought we were going home after every surgery. After every surgery we thought the ng was temporary until she could eat again. Little did we know.
So now we are in April 2015! It has been 16 months of helping our daughter learn to eat. 16 months of daily trials with food, bottles/ now sippy cups. Trying to lesson her aversion from the pain she had to go through in her first year of life. Just... to... eat.
I know the pain we've been feeling will be nothing compared to the joy that is coming. The joy that came today when Bella took 21 spoonfuls of tomato soup!!!
The most she has even tried before was 4, 4 at most! 21 blows that away! I started counting after 5 spoonfuls because I was so excited. Then we dipped her celery in the soup and her crackers in the soup, and she sucked on those and loved that too! I feel like I could type for hours trying to explain what this means to me.
I have been so scared, so so scared that my baby girl would not eat or could not eat. I've been diligent in faith, working with her day after day exposing her to as many different tastes and foods and utensils as I can, to battle any possible aversions before they pop up.
The SLP and specialists here have helped give me the tools to get Bella as much food exposure as possible with the least amount of risk, given her diagnosis and what we can't risk because she can't fight infection.
Today was a victory. And I look forward to many more. I know she'll eat again. I have faith, one day she'll eat and drink on her own. One day she will understand hunger and thrive. One day her Gtube will come out and she'll eat on her own.
I pray before every meal not just to thank God for the food but for the strength He gives me to want to eat... when my daughter can't, and for the faith that someday, she will.
Day +17
Bella is now off of morphine and gaining more of her energy back! She hasn't been up for being in her jumper since before chemo.
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