May 7th, 2016 by Maribeth

Baby Ella survival story.
My daughter Ella was born at 26 weeks and 5 days, she like many others I have read about was born in great condition within 24 hours she was on room air by 48 hours they had dropped a ng tube and we’re giving her my breast milk, for almost a week she did great but when she was about a week old the NICU nurse called us on the way to the hopsital and told us that Ella’s abdomen had begun to distend and they were running some films and test but they felt positive her bowel had perforated. My husband and I rushed to the hospital to find our sweet baby girl completely lifeless and in the process of being resuscitated they rushed us away from the grisly scene and brought a priest to our aide to comfort us which did nothing of the sort, it only made me more terrified! However I prayed and prayed for strength and healing for my sweet angel!! The surgeon on call inserted pin rose drains into Ella’s abdomen and we were told that she would receive antibiotics and be extremely closely monitored but most the time Nec would heal itself and they holes in the bowel would close up and she would be ok!! With much faith we stayed by her side and prayed relentlessly that she would heal, day after day for almost two weeks she continued not to get better but worse finally another surgeon made the call that it was time to open her up and see what was actually going on inside her bowel, he was only in the Operating room with Ella for 30 minutes when he came to get us from the waiting room, he informed us that most of her bowel was necrotic from what he could even make out and that her condition was grave and that her prognosis was and I will never forget these words as long as I will live: Her prognosis was BLEAK!! For about ten seconds my heart shattered and then my faith in God overcame my fear and I refused to believe this personally I know the God that I worship was bigger than any prognosis a doctor could give and I chose to believe in God and I refused to give up on my baby girl! After telling us her prognosis was BLEAK… My husband who is very matter of fact asked for statistics and the doctor replied: if she makes it two weeks which I doubt she will than she has about 1% chance of survival… Well momma bear dismissed this and I went back to Ella’s side. She was still open in her abdomen Bc the inflammation was too bad for the surgeon to close her back up and she was left this way for at least a month, the next four to six weeks was a waiting game filled with blood and plasma transfusions, antibiotics, ventalitors, the works, we were
Told over and over again how each day may be Ella’s last, well she survived and got a little better in the time line the doctor gave yet the surgeon never seemed to want to move forward, so we got a second opinion when Ella pulled her picc line out one day and the surgeon on call replaced it, she asked us what was the plan with the other surgeon and when we informed her that as far as we knew he hasn’t made one she was not happy, so this surgeon took Ella on as her patient and a few days later she took her back to surgery and was in surgery with Ella for 8+ hours she dissected, repaired and reattached all of the necrotic bowel to the healthy bowel, also placed a g-tube in the end Ella was left with approx. 54 centimeters of short bowel, and no illocecal valve. For the next 3 months she was started on continuous feeds a little at a time and when we went home 5 months after her birth from the hospital she was on a continuous feed pump. We since that time have been going to Cincinatti Childrens Hospital for all of her GI care and she is now a 3 almost 4 year old living breathing vibrant beautiful angel of a miracle!! She still has the g tube but we only use it for periodical bolus of a supplemental nutrient and she eats and drinks by mouth like any other typical child!! Our family has been through it we understand the pain and fear you might be feeling. Have faith and know there is light at the end of the tunnel and these babies are so much stronger than we are! Your in our thoughts and prayers always all of you!!

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