Our Hurricane Baby
by Kristina Bice

They ran all the usual tests after birth, and sent us home believing our precious boy was perfectly healthy. I was nursing Patrick constantly—every 1 to 1 1/2 hours. He also was urinating a lot, although I didn't know at the time that it was unusual. He was my first child and I assumed that all babies went through that many diapers!

All seemed perfect with the world. I went and had my 6 week check up and asked the doctor if there was a type of birth control pill I could take that wouldn't dry up my milk. He started me on birth control with the promise that it would have no affect on my milk production. Just one week later, Patrick started to get fussy. He wanted to nurse even more often. After a few days I couldn't even take him off the breast or he would scream. It didn't take long to figure out that my milk had dried up. I called his pediatrician and asked what kind of formula would be best.

Patrick did okay on the formula. He slept longer and didn't need to be fed as often. At the time I thought that maybe this was a hidden blessing. If only I had known.

Within a week Patrick was vomiting constantly. He ran a low-grade fever all the time, and he became constipated. His pediatrician ran all kinds of tests and put him on three different kinds of antibiotics—one after the other. She thought it was his stomach. All these tests took about two months.

In the meantime we are giving him prune juice, using glycerin suppositories. Going through countless diapers. Trying desperately to get him to take the formula. As soon as we started the prune juice he no longer wanted anything to do with the formula. All the tests came back negative.

Patrick’s doctor wanted to try one more antibiotic. We started the antibiotic and three days later, Hurricane Andrew hit. We had evacuated the Keys.

The day after Andrew we headed back. The devastation was horrible. Traffic crawled back into the Keys. We turned off the air-conditioning and put the windows down to prevent the car from overheating. Patrick became fevered and cranky and wouldn't drink anything. We ran out of gas because we didn't know that all the gas stations between Miami and the Keys had been blown away. There we were, stuck on the side of the road, no phone, no gas, still 100 miles from home.

Patrick was getting worse. He still wouldn't drink. I started pouring water on him to cool him down. It helped. Just at that time God's hand guided my sister (who was living in Miami at the time) to us. She drove us home.

Following Andrew there was no electricity to the Keys. It gets really hot there in August. Patrick got to the point where he was sleeping all the time, he was running a fever, we could barely wake him to take a bottle.

His Pediatrician had also evacuated and had not returned yet. We took him to another doctor, who immediately suspected there was more going on than just a stomach illness. He sent us back to Miami to Jackson Memorial Hospital, where within an hour, they pinpointed his kidneys. His initial sodium level was 174. They brought us a bottle of pedialyte to give to him while they admitted him. After a while they realized his sodium was still going up. That's when Patrick got his first taste of water. After that he would take nothing else. After a week of testing, they finally had a diagnosis...NDI.

He was 3 1/2 months old by then. They started him on diuril. Patrick's sodium was back to normal. The doctors informed us that Patrick could have some brain damage from the swelling that occurred from being dehydrated for so long. Time would tell.

Patrick was given a nasal-gastric (N-G) tube. His body temperature couldn't regulate itself. During the day he would run fevers, and then as soon as he fell asleep his body temperature would drop. They had to bring in an infant warmer. He was still throwing up more than ten times a day. He broke out in a rash where they had the N-G tube taped to his face. The doctors recommended surgically inserting a gastric feeding tube. We decided to go for it. He was eight months by this time and we wanted to take our baby boy back home. If the doctors thought it would help then we would try it.

Patrick who had been almost 9 lbs at birth only weighed 11 lbs eight months later. The surgery went well. Except that Patrick was fed intravenously for 5 days after the surgery and every time they put in an IV the vein would blow. They even shaved his little head and put one in there. That one didn't last either. Finally they did a cut down and put it in a deep vein in his leg.

My baby had tubes everywhere. At 8eight months he had never even learned how to sit up. The doctors thought it was a sign that there had been some brain damage.

I was sure they were wrong. I had been with him through everything, I had never left his side. I even slept on a cot in his hospital room. (Home was 150 miles away.) I knew he was all right. At nine months Patrick finally got to come home.

Within the next month he learned to sit, stand, and walk! The light was shining at the end of the tunnel. Patrick ate his first bite of food when he was just over two years old. He had surgery to have tubes put in his ears, which helped decrease his tendency to vomit. He had gained weight.

Patrick's follow up care was done at Miami Children's Hospital by Dr. Felix Ramirez. His feeding tube was finally removed when he was 2 1/2. Patrick is now eight yrs old. He is now on 500mg chlorothiazide twice a day, and 50mg Indomethacin twice a day. He not only doesn't have any brain damage, but he is in the gifted program at his school with an IQ of 136. Patrick also now has a sister, Jordan, who is four years old and a brother, Garrett, who is two-and-a-half years old and who also has NDI.

We now live in Nashville, TN—away from hurricanes and into tornado valley! Patrick and his brother both see Dr. Aida Yared who is the head of the pediatric nephrology department at Vanderbilt University Hospital. She is an incredible and compassionate doctor. To us Patrick is a miracle. And we thank God every day for bringing him and all of our children into our lives.