Meet CASE!

This amazing boy was born 12-21-10 at a whopping 2 pounds, 13 ounces due to an unknown syndrome and Inner-Uterine-Growth-Restriction. His doctors didn't expect him to live but living life to the fullest is what he does!!!!
This Is his story:
-Case was born with a multi-cystic, dysplastic non-functioning left kidney (that has since shriveled up) and fluid pockets on his right.
-He is currently J tube and TPN dependent and fed 24 hours a day intervieniouly and straight into his intestistines due to swallowing issues, poor motility and intestinal issues.
-He has suffered from Crainiosynostosis (Sagittal), Chairi Malformation a tetered spinal all corrected via surgery hopefully to never return......
-He was born with an ASD, VSD, PFO and several "normal variants of the heart that are currently stable.
-He suffers from Failure to Thrive and extreme short stature.
-He started growth hormone therapy in March, 20015. He gets daily shots and they are WORKING!
-About a year ago, he passed out in a hypoglycemic shock with sugars below 20. He was quickly stabilized being we were at the hospital (thank God)....He still suffers from severe Hypoglycemia and can not go without nutrition for more than two hours, even at night.... He has home health nurses at night and while at school.
-Case also has very severe GERD on top of the motility issues and lack of function in his gut. He was unable to tolerate night feeds and is now on TPN and Lippids through a central line in his chest. He takes several medications to help but nothing seems to completely work....
-Due to lack of growth and intestinal failure he had his central line placed 1-20-15 (this is a semi-perminante IV in the major vein by his heart).
-On top of all of this Case was born with many birth defects and congenital anomalies. We hope to some day have a "name" to go with what ever syndrome he suffers.....but for know, we are blessed to have our boy with us.

Monday, May 21, 2012

I have a confession.


I have a confession. I'm tired of fighting the food battle. For all of the 17 months Case has been alive, I've been fighting my butt off to get this child to eat right and grow well. The food battle started as soon as Case was born. They whisked him away from me via helicopter (even though we were only minutes away in Magee Women's Hospital) to Pittsburgh Children's Hospital. Once he was gone, the food battle started. I pumped around the clock every three hours to have milk for the time when they allowed me to nourish his tiny body with bottles then with breast. If only it would have been that easy. He was about a week old when they first let him eat, after a day or so they stuck a tube down his nose. Eventually they let me try to nurse. He was too weak. Once he was sent home, they took the tube out of his nose and I was feeding him fortified breast milk every 3 hours (around the clock). I was also pumping. This went on until I could no longer keep my milk (around 3 months). He never physically could nurse. He went to Similac Expert Care Neo-Sure. He didn't handle that well, so they switched him again. He's never been a good eater. I begged him to eat. I wiggled him. Walked him. Tapped his bottle. He cried, I cried. I bounced him. supported his chin etc, etc. Once I added solids, I was still begging. Now I held his hands down. Held his mouth open. Got spit on. Vomited on. I cried, he cried etc, etc. Finally when he was 11 months old, they placed a g-tube. He weighed less than ten pounds. I had high hopes for the G-tube and fundo. I thought things would get easier. He would just "eat" and grow. I was wrong. Things didn't get easier, just different. Since then we have switched formulas 4 times. He retched (violent heaves because the Nissen doesn't allow vomiting) so much that he now vomits. He has been constipated; had diarrhea for 4 solid weeks. He is now 14 pounds 6 ounces, 17 months old and once again the doctors are at a loss. This past month his weight went up and down. He isn't gaining right. He is eating next to nothing by mouth and lately gags, chokes and sometimes vomits with most foods (even applesauce). He wants to drink but he chokes, gags and aspirates thin liquids and hates the thickening powder I put in it. I could go on with the "feeding battles" but I'm sure you are already losing interest. :)

Long story short, I'm trying hard not to lose my focus. I've gotten caught up in this never ending (or so it seems) battle. This new formula (he started it Friday) has real foods. We add a powdered calorie and fat booster. I really thought this was it, and I am still holding to the hope that maybe it will take a few more days... We were in public yesterday and he vomited everywhere-the floor, my diaper bag, me. It's not spit up. He doesn't just open his mouth and let it pour out. He retches, sweats and heaves until it comes up. More times than not, something does come up. I was sad, discouraged.

With ALL that being said, I am doing well- just needing to trust in the big plan. To keep on keeping on and count my unending blessings. So, unless you come to my house and find me dead on the floor, I am getting stronger. Ha. Besides, this is what has been chosen for me. I still would not change my special boy, I am just tired of seeing him hurting and sick. I am ready for the feeding battle to end. I'm not in a hurry to get the tube out, just wanting the tube feeding process to go more smoothly.:) After all, what doesn't kill me will only make me stronger.Things could be a lot worse. I still feel blessed.

This is what a nap on a bad day looks like.:)

5 comments:

  1. I wish I had words that soothe....this came to mind. Thess.1:2 I give thanks to God always for (all of) you, constantly mentioning you in my prayers, 3 remembering before our God and Father your work of faith and labor of love and steadfastness of hope in our Lord Jesus Christ.

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  2. Except for the feeding tube, boy do i feel your pain. My 15lb 11 month old doesn't like to eat and its getting ridiculous. He throws up randomly. It's the mystery of the world haha he're seen so many doctors and heard so many theories. I think he's just not really my son because I love to eat and seem to gain weight when I blink haha

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    1. Sorry to hear you are fighting the feeding battle too. I hope it gets better! It's no fun and not for the weak of heart! ha.:) By the way your babies are adorable!

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  3. I'm sorry for your struggles. I hope that soon you can find the right solution/answers in order for Case to grow and for you to take a huge sigh of relief. Hang in there! You're a great momma!

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    1. Thanks Lisa. I hope so too. I'm sure it will all get straightened out some day. You are a great momma too and a wonderful friend!

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