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.

Sunday, February 10, 2013

My Super Tubbie!

Today is day one of Feeding Tube awareness week. The topic today is: "Tell your story. Educate people as to what life with a tube feeder is like." Case has struggled with eating his whole life. He spent 38 days in the NICU leaning how to eat.

I finally got him to take just enough breast milk from a bottle that they took the NG tube out of his nose and sent him home. Once home the battle only got worse. Case had to be fed round the clock every 3 hours with pumped, fortified breast milk.

I was the only one he would take a full feeding from (and by full feeding, I mean 1-2 ounces, at best). He had a weak latch, swallowing issues and other birth defects/stomach problems we didn't find till later in his life. I continued to try to get him to breast feed. The harder I made him try, the more weight he'd lose. Finally, after 4 months of pumping, fortifying and begging my milk dried up and I grieved. I grieved because my hopes and dreams of a breast feeding, 4th child were simply unattainable. We switched Case to full formula feeds and I battled daily to get him to eat enough. I was still the only one who could really feed him and feeding him was painful.

It involved tapping the bottle, chin support, wiggling Case, holding his hands down, etc. We took Case to his pediatrician every week for several months to have weight checks.

  I was excited to introduce table foods and hopeful that things would get easier. They didn't. I had to strap him down and force feed him. He spit on me, threw up on on me and cried at me. I cried too.

 I couldn't do for my fourth what came naturally with my three children before him . I couldn't make my  baby eat and grow. Finally, at 11 months old and less than 10 pounds he was male-nutritious and needed a tube. I felt defeated and hopeful at the same time.

 During Case's G-Tube placement they also did a Nissen fundoplication to stop the vomiting but Case started retching (violent dry heaves) all the time that he now overcomes the fundo and eventually throws up anyway. After the tube insertion and 5 days inpatient we went home. I thought the feeding battle was over but it wasn't. The tube was a blessing but Case's body still wasn't digesting and absorbing right.

 6 months, four pounds, two ER visits and lots of retching/vomiting later his G-tube was switched to a GJ. He now is fed 22 hours a day into his J and "vented" 24 hours a day out of his G.

His tubes saved his life and although he is a barely 17 pound 25 month old he is alive. He is happy and he is strong. His feeding battle isn't over. I don't know if he will ever fully eat by mouth or if the tube will ever come out but I know that after 14 months of tube feeds, beeping pumps, G-tube yank out, GJ- tube yank outs, trips upon trips to CHP, vomiting, retching, Meds, bags, feeding back packs and more I couldn't be more grateful for his tube and his doctors that have listened to me cry, responded to 11pm texts messages and are dedicated to finding the best way to nourishing our complicated Case.

We may never figure him out compleetly but we will always have his lifeline that hang out of his wee belly.

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