Wonderful People

After an uneventful pregnancy except for swollen feet in my second trimester, I had many appointments with the Perinatal Center for the last trimester due to the baby being a little on the small side. I had to go every month for ultrasounds and blood flow studies. During my eighth month they had me coming every week, and the day before the baby was born I was in for a Non-Stress Test which didn’t have good results. The doctors then performed a Biophysical Profile which in turn wasn’t very good either. The baby was not moving much and having trouble breathing; they then proceeded to induce my labor. The perinatal doctor, along with my wonderful OB, decided it was best to deliver her to have better life outside the womb. Alyssa Leigh was born on April 24, 2007. She weighed 3 lbs. 2 oz. and was 33 weeks gestation. Alyssa was in immediate respiratory distress and was put on a ventilator for the first few weeks. When Alyssa was seven days old, she was diagnosed with Emanuel Syndrome, partial 11/22 which really scared us. My husband and I didn’t know what to expect of her now. The Genetics Counselor, Kay, sat down and explained everything she knew about the disease and expectations. We were so scared to hear that our daughter was born with a genetic condition we knew nothing about and this was the first case the hospital had. At two weeks old, Alyssa developed NEC (necrotizing enter colitis), a severe bowel infection and had to have emergency surgery to remove the infected bowel. She was given a very poor prognosis due to the fact she was left with 25 cm of bowel. Our little fighter proved the doctors wrong. On June 20, Alyssa had to have surgery for PDA (Patent Ductus Arterious) which she recovered from well. She did well after this surgery. Due to the fact that she was having aspiration episodes through feeds the doctors decided to proceed with surgery on July 12 for Fundoplication, G-tube and Enterostomy. Then in the beginning of September the doctors spoke to my husband and I because they were planning on sending her home or to a Ranken Jordan Pediatrics hospital. Alyssa would have needed around the clock care due to her not being able to eat by mouth or take a bottle. Since the day she was born, she relied on TPN (total parental nutrition) which in turn damaged her liver. Unfortunately, Alyssa never made it home because had recurrent yeast sepsis that developed and never was able to recover from that. She had a broviac catheter replaced on September 28, which was her last surgery. Alyssa stayed on the ventilator after surgery and decided to remove it herself on Sunday, September 30, the day before she died. My daughter may have been very sick but she was a true fighter. On October 1, 2007, Alyssa died in my husband’s arms at the hospital. It was the hardest thing that we ever had to go through but we now have an angel in heaven. My husband and I are grateful for the five months we got to spend with her; she taught us so much. It was tiring at times but you we have to be there for our babies. If Alyssa wouldn’t have been born we wouldn’t have known about this disease. The hospital staff comforted us on the day of her passing along with our priest Father Rich. Alyssa's nurse, Anna, took very good care of on that day and made sure we had professional pictures taken in my christening gown which is what she was buried in. Maggie with Heartprints was wonderful as well and very comforting. I have met many wonderful people at St. John's and continue to go there for my care. When we have our next child, we plan to deliver there as well.

 

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