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I've stumbled across this board in the past and now I've recently found it again. I'm glad I've found it ~ I'd like a place to share even my most ridiculous fears with regard to my precious baby Allison...

Our story is a long one, but here's the gist of it:

Late in my second pregnancy I was measuring HUGE, and the doc suggested an ultrasound to check things out. All heck broke loose when it was discovered that my baby had a tremendous about of fluid building up in her abdomen and that I had 5 times the amount of normal amniotic fluid. Three days later (Oct 13), she was delivered via c-section, unable to breathe due to the excessive fluid. At birth she was 9lbs, 13oz ~ the doctors "tapped" her tummy and allowed it to drain and 24 hours later she was down to 6lbs, 13oz. For four long days no one knew what was wrong with her. Testing eventually revealed that she had a jejunal atresia ~ part of her small intestine had become impassible. During surgery to fix it, they found not only the atresia, but also a perforation, meconium ileus and volvulus (everything was twisted). They were unable to fix her intestines at that point and reattach them, so they brought the two ends out the surface of her tummy, creating stomas that they planned to reattach after about 6 weeks. The surgeon suggested that we have her tested for CF due to the presence and severity of the ileus. The test came back on her 18th day of life, my parents’ 32nd wedding anniversary ~ our little baby had tested positive for two of the ΔF508 genes. Devastation. Obviously Allison was in the NICU, as she had been since the day of her birth, awaiting surgery to reattach her intestines. She developed a respiratory infection labeled “bronchitis” and with us being so new to the world of cf, we just assumed that the coughing, hacking, wheezing and excessive mucous production were just part of the natural progression of the disease. But after the required two week round of TObra and Timentin and the added inhaled meds, she was doing much better. She got her intestines reconnected and we thought we were on our way home… but 10 days after this last surgery, her wound eviscerated, exposing her abdomen contents. She was quickly paralyzed and placed on a ventilator. Two days later, they decided to do surgery to repair the wound. They also decided to treat her for Enterobactor, since she was on the vent, etc and it was silly not to. Another two weeks, only this time it was Meripenim and Amikasin (spelling?). After about 9 days, we get her off the vent and start once again on the road to recovery. By mid to late January, it was clear that she wasn’t going to tolerate oral feeds into her stomach due to severe reflux (she had been on an OJ drip for weeks after coming off IV nutrition). The fear was also there that she would aspirate into her lungs, so we were pushed to make a difficult decision and put her through surgery once more for a Nissen GT (in a Nissen they literally wrap the stomach around the esophagus thereby exerting pressure on the “mythical” valve that exists between the esophagus and the stomach in an effort to stop the reflux action and the GT was her G-tube placement). Because of her poor ability to heal, we were fortunate they were able to do the procedure laparascopically and reduce the risk of yet another evisceration. She then contracted Pseudomonas, and underwent treatment for her third “exacerbation” in three months.

Because of her extended stay in the NICU, she never learned to eat orally. She is exclusively fed through her Gtube and in feeding therapy. She’s behind developmentally, but catching up nicely. She came home after four months in the hospital and on Oxygen, a drip feed (due to an extremely leaky g-tube site) and the pulse/ox monitor. We’ve been able to eliminate all those since she’s come home, and it’s a blessing to walk around with your “unwired” child… She’s on Actigall for her liver, Aldactazide as a diuretic, ADEKS, Iron, Prevacid for the continued refluxy issues, Xopenex, Pulmozyme, and Pulmicort nebs and we just finished five days of Zithromax and two weeks of TOBI for her last throat culture (p-monas). We also spent last weekend in the hospital due to unexplainable intestinal bleeding. We don’t know why it happened, but it seems to have stopped for now. We do treatments twice a day (her lungs sound fabulous!) and she’s no longer as fond of the CPT as she once was.

If you’ve gotten this far, I appreciate you taking the time to read this ~ I hope we can get to know each other better and share in our journeys. I’m sure I have a lot to say!


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