Brylee Nikole was born on 2/6/2013 weighing 1 lb 14 ozs, 25 weeker she was delievered via C-Section due to serve preclampsia & placenta previa. Brylee come out crying and kicking one little fiesty girl. Per protocol the doctors put her on cpap due to her gestational age. The doctors stated that I had one fiesty preemie on my hands. As Brylee laid in the incubator the first three days of life she took off the Cpap with her feet. And the temperature probe she pulled off. Setting every alarm in her bed. The doctors said well our goal is to have her home at her Expected due date. Then on 2/17/2013 I lost my mother to kidney failure. And her viewing was on 2/19/2013 in NC. However due to my complications my doctor wouldnt release me. And my 2 week checkup was Feb. 19th. As I set in NICU kangaroo holding my daughter I noticed that her stomach was hard and when I burped her a weird smell. And she begin to cry uncontrollable.
The nurse had told me "Oh she is just gasy." I went to the Charge Nurse and let them know I had my two week check up and something is wrong with my daughter. I would be back and someone needs to tell me what was wrong. So I left and went for my checkup and when I came back they had done a xray, mri, catscan & drawn all kinds of blood to find out that there was an infection in her intestines. Within an hour of me returning Brylee went limp and unresponsive. So, they did emergency bedside surgery inserting a drain tube in her stomach. Later that evening her stomach continued to get big. That is when they took her down to the OR and ended up removing 20 cm of intestine that was infected and deased. On 2/21/2013 her stomach continued to be decended and they went back in removed 5 cm more; 2/24/2013 another 5 cm, 2/25/2013 they inserted a woundvac and opened her ostomy leaving her remaining intestines unlinked. For the rest of Febuary through March 2nd they continued going into her wound to inject it with antibiotics and cleaning the woundvac. Then on August 26th they went back in to link the remaining intestines a 2-4 hour surgery that took 9 hours to find out the the stoma was dead, part of the remaining intestine fused into her right ovary causing her to lose her right ovary. They continued fourth with her surgery and upon finishing the surgery, inserted her Gtube, she was left with only 8cm of intestines. They diagonised her with short gut syndrome. They are keeping her on TPN & Lipids to grow and put her on the list for an Intestinal Tranaplant. However, the transplant will not take place in Houston but in PA. The doctors are now trying to aleast start feeding to see if the remaining bowel is functional. If it is a little functional that will buy time until the transplant because too much TPN can affect the liver. Now, with everything that is going on little Brylee has never been out of NICU since birth and she is now 8 months old on the 6th. And we don't see a date anytime soon of coming home. Once we get to PA we will be there also for 4-6 months to make sure the transplant takes and is functional.