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Allie was born on Thursday, April 1st 2004, 11:24 am PST, Good Samaritan Hospital, San Jose California. She weighed 5 lbs, 8 oz. and was 20½ inches long. Just 4 months before she was born, a routine ultrasound revealed the presence of polyhydramnios, which is excessive amniotic fluid. Polyhydramnios is correlated with many different problems, but is generally a good indicator that something is wrong with the baby.
After numerous hospital visits, monitoring sessions, and multiple high-resolution scans, the doctors remained as puzzled as before. We were told that there was a good chance that nothing was wrong, but that if there was, it could be potentially life-threatening, so arrangements were made for us to have Allie at Good Samaritan, where they have a Level-Three NICU. Good Sam lies about 50 miles north of our former home in Salinas, CA.
After she was born, her weak cries and low initial APGAR score (5) meant that she was whisked away to the NICU for supplemental oxygen and examination with only a few brief moments for us to see her. After several hours in the recovery room, the neonatologist and a surgeon came to see us. Allie had been born with a weak diaphragm that allowed her abdominal organs to push up into her chest, compressing her developing right lung and putting pressure on her heart. Although her condition was technically not a
congenital diaphragmatic hernia (CDH)
, but rather an eventration of the right hemi-diaphragm, Allie generally falls into the class of patients suffering from CDH. We didn't know if she would live even long enough to get the surgery necessary to save her life, so at 4:30 pm on Friday afternoon, Allie was baptized.
That evening, the surgeon summoned us to the NICU and told us that Allie's pulmonary hypertension that had been making her so unstable had corrected itself enough that she could have her surgery on Saturday morning. We went to see her that night, not knowing if it was our last time to see her alive. She looked so fragile and helpless laying there. Because she was on a ventilator and was being fed through an artery in her neck, she was kept heavily sedated and paralyzed.
Allie went downstairs for her surgery at 7:30am. She even opened her eyes on the way down, and looked at us for a brief instant before they took her into the OR. Her surgery lasted over 3 hours. Eventually, the anesthesiologist came and took us up to the NICU with Allie, who had survived her surgery with flying colors. She was also tolerating the chest tube well, which itself was a source of risk to her. They told us that Allie needed to rest after her surgery for at least a day, then they would slowly wean her off of her medications, wake her up, and feed her her first meal.
Taking her off her medication proved to be difficult, because she had become dependent on the morphine and developed a bad case of the shakes when they tried to take her off of it cold turkey, so she had a few days of continuously decreasing dosages of morphine. She continued to tolerate her chest tube well, and eventually it was removed. Allie never had to be in an incubator, because (thankfully) she could regulate her own temperature. The next project was to get her to eat something, but Allie would not or could not nurse effectively, so she had to be fed with a naso-gastric tube. Despite the best efforts of everyone involved, Allie never did start eating enough to sustain herself.
Our time in California was drawing to a close, and we had to find some way to get her home. The hospital had run swallow studies, stomach-emptying studies and reflux studies, as well as a CT scan of her brain and a chromosomal study to try to figure out why she wasn't eating, and why her respiration rate remained so high. All of the tests came back normal, except for the reflux study which detected a small amount of reflux in her esophagus. In order to prevent possible aspiration of stomach contents into her lungs, and to ensure she could be fed, Allie went back for another surgery in early May to perform a fundoplication (folding and stitching of the upper stomach to keep anything from going up the esophagus) and the placement of a gastric feeding tube (or g-tube). Again, she tolerated the surgery very well, and we were able to take her home on May 12th, a month and a half after she had been born.
Shortly before we left California, Allie had a Mickey button put in to replace the dangling g-tube. Allie tolerated the move to our new home across the country extraordinarily well, despite the series of problems that beset us during the move. She is now 8 months old, as of this writing, and by all indications she is doing fairly well. She still has a small atrial defect in her heart, and the inferior lobe of her right lung will never be fully functional. The hyperplasty of her lung means that any respiratory infection could result in hospitalization, pneumonia or even death. She's had one head cold and now may have the flu, despite our best efforts to protect her. Anytime she coughs we worry. Additionally, the lack of normal tummy-time and the resulting general weakness of her back and neck muscles has meant some gross-motor and other delays for her, but with ongoing PT, and OT we hope she will be walking by the time she's two. She has just started saying Da-Da and Ma-Ma,loves her big brother and sisters, Keegan, Jae, and Emily - especially Emily - and while she is not out of the woods yet, Allie looks to have every chance in the world. She is the toughest and sweetest little girl we know, and we humbly, and with deep gratitude recognize the miracle that she represents.
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