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Kelly in January 2007!

My husband and I have a very healthy daughter, born in 2002. In March of 2005, my husband and I lost a baby at 23 weeks gestation to a heart anomaly called Epstein’s. Then we got pregnant again in May 2005 and at 12 weeks of gestation the baby was diagnosed with a gastroschisis. I was shocked to find out that I had another baby with an anomaly. We had genetic testing and counseling, and as much as they would have liked to link the two pregnancies, they could not. They were completely different and independent anomalies

I started my pregnancy in Chicopee, Massachusetts and then my husband got a new job East of Cleveland, Ohio. I had to find a new doctor and a level III hospital that we could trust with our special baby. Dr. Mitchell Reider is the best OBGYN I have ever encountered. He was experienced with gastroschisis pregnancies and was very calming during my entire pregnancy. Kelly was born vaginally at University Hospitals in Cleveland on January 16, 2006. She was immediately sent to Rainbow Babies and Children’s’ Hospital (just next door). She was born classified with a very large defect, all of her intestines, bladder, ovaries, appendix etc outside of her body.

The pediatric surgeon was able to do a primary closure four hours after she was born. She was in the NICU (neonatal intensive care unit) for 17 days. Then she was moved to the step down floor for 7 days. When she was in the NICU she was on antibiotics as a precaution to kill off anything that may have entered her system after birth and before the closure. She was on the TPN (total parental nutrition) and lipids for about 2 weeks. Her first feeding was pedialyte fourteen days after she was born. Two days after that she was able to have controlled amounts of breast milk and a week later they let me nurse her.

Five weeks after she was born, she gained over a pound, and is doing great. I did a lot of research on the internet during the pregnancy, hoping to find answers to my questions regarding this mysterious defect. The tales of loss and grief far out weigh the positive and happy ones. I offer this advice; try not to get discouraged or sad. Stay on top of the doctors and nurses; make sure you stay informed about your baby’s health and the new advances in medical technology. We live an hour from Cleveland and it was very tiring commuting, but I felt it was important that I check up on her and the medical care she was receiving.

I had to commute 2 hours for those 17 days she was in the NICU, but then she went to the “step down” floor where I was able to room-in with her. That was a true blessing. I could stay with her and do all of her primary care. I did not leave her side until we came home from the hospital, a week later. I know how difficult it is to care for a family (my husband and 4 year old) and a baby in the hospital. Thank God I had my mother to come and stay with my older daughter. I am very happy with Rainbow Babies & Children care and facilities. They let you room-in with your child; provide a refrigerator, bathroom and a lot of great medical care. However, NO ONE is going to take care of your child as well as you can. Be there with your child as much as possible.

Update as of July 30, 2006

On April 9, 2006 (2 ½ months old) Kelly was noticeably uncomfortable. She was pushing her bowels but nothing was coming out, gas or feces. She was screaming and crying so much that she exhausted herself and slept for 3 hours. She did not eat or have a bowel movement for 9 hours when I took her to the emergency room at Rainbow Babies and Children’s Hospital. Prior to April 9th, Kelly had eaten every 2-3 hours and had 10-14 bowel movements a day!

We went into the hospital at 9pm and the doctors could not decide to admit her. They did an x-ray and saw nothing. They admitted her to the hospital and decided to do an upper-GI the next morning. FYI: an upper-GI takes 24 hours of x-rays to complete. Getting her to drink the barium was a challenge – she kept throwing it up – it was all over me and her and the floor. They ultimately saw nothing from the upper-GI. I talked to her pediatric surgeon (Dr. Parry) and we decided to wait it out and perhaps she would pass the obstruction on her own. She was receiving fluids through an IV, but no calories. After 3 days of fluids, we decided that Kelly needed surgery to find the obstruction.

We made a list of questions to ask Dr. Parry before her surgery: What do you think you will find? (Twist, pinch, intestinal damage) Do you think you will have to remove any of her bowels? What will her recovery be like? What kind of painkillers will she have? How long will she be on antibiotics? When can she eat? What is the first thing that she can eat? How much longer do you think she will be in the hospital? The surgery was expected to take one to two hours. Four hours later Dr. Parry came out with Kelly. He found many adhesions (pinching points) and a very large twist that only a small amount of feces could have traveled through before shutting down completely. He believed that her bowels had been in this position since the original closure after birth. He cut the damaged portion out and removed her appendix.

When we first saw her, she looked like she was (and I hate to say it) dead. She was not responsive and was still very heavily medicated. The first night was the hardest because I did not want to fall asleep for fear that she would die or her pain medication would be forgotten. At 2am, Kelly woke up screaming very loud and very painfully. I could sense her pain and began to cry too. Her morphine was 2 hours overdue! I searched for the nurse desperately until I finally got so mad that I pushed the panic button and everyone came running. From that moment on, I decided that I was going to have to be more aggressive in my daughters’ medical recovery.

Waiting for your child to have a bowel movement was much like waiting to go into labor. Everyday I told myself, ‘today is the day she is going to poop’. After six days of recovery she finally did poop. Kelly had a diaper change and drank pedialyte. Then she had another bowel movement and got some breast milk. She ate regularly and had more bowel movements and came home the next day.

January 22, 2007

Kelly has celebrated her first birthday and I am forever grateful. It seems like yesterday that we were in the hospital everyday visiting her. She has wonderful health, is growing beautifully and is a very happy and normal child. While I was pregnant with Kelly, I was desperately trying to find answers to my many questions of gastroschisis. I found few documented cases and found no one to talk to about it. Please if you need to talk to an actual person who has been through it, email me: kgreels@hotmail.com, I would love to talk.