A Scary Story with a Happy Ending ~~

It was March 14, 1995 and mommy Suzanne was feeling very sick. Daddy Ron was away and she was all alone. She says that she felt like she was either in labor or dying, and either way she had to get to the ER. She took a cab -- luckily one came quickly -- and was admitted to Huntington Memorial Hospital. She met her doctor there and he told her that I needed to be born because I was sick. So I was born, 1 lb 10.5 oz (760 grams), 13.5 " long. My head and shoulders were bruised very purple from the birth and my eyes were fused shut because I was so early. I was very swollen and lost weight quickly. I couldn't breathe by myself so a neonatologist with an Argentinian accent and nurse Gidget with big blue eyes put a tube in my throat and hooked me up to a ventilator. The neonatologist told my mommy that he probably would have to tell her very bad news later that night. I had a very bad infection (GBS) and they thought I wouldn't make it through the night.

Mommy called Daddy and he took a plane the next morning to be with us. When daddy first saw me some nurses were standing over me and a respiratory therapist was "hand bagging" me, trying to get me to breathe. They told daddy to call a priest or whoever he would like. Daddy was very scared. But I fooled them again.

I had to live in the NICU for 4.5 months. I spent 3.5 months on a ventilator, sometimes on the high frequency oscillating ventilator, that's the one they use on the "sick" babies. I had a very bad illness in my lungs called PIE. One of my favorite roommates went to heaven because of PIE. I miss her alot. After I got over the PIE I had BPD, which is a chronic lung problem that many premies have but my lungs are doing very well now.

When I was about a month and half old, the doctors thought that I would be able to breathe on CPAP, but I didn't do so well. Mommy and Daddy weren't too surprised, they felt that something wasn't quite right. That's when they found out about my heart defect, coarctation of the aorta. Its a long and scary story how they found out, but the moral of the story is that parents should always trust their instincts first and foremost and stand their ground. I ended up with NEC at this time and almost died. I didn't peepee for over 16 hours. And the worst part was that nice Dr. Vogt wouldn't let me have any formula any more. I was hungry!

The coarctation made my upper body blood pressure 2 - 3 times normal, but my lower body blood pressure was so low that it couldn't be measured. Everyone was afraid that I might have a fatal brain stroke from my upper body blood pressure being so high, or that my kidneys would shut down again from my lower body blood pressure being so low. My doctors had never seen anything like this with a micropremie but once before, so they were not sure exactly what to do. They were trying to manage a surgical problem with medicine. They did a darn good job! When I was 3 months old and my aorta was mature enough to be operated on and I was big enough to hold my body temperature on the operating table, Dr. Starnes fixed my aorta. I got to ride with my mommy in an ambulance to Children's Hospital L.A. I only had to stay there for 3 days.

About two weeks after heart surgery when I was back in the NICU, I got RSV, a very nasty virus. My mommy noticed tiny red spots all over my trunk and my bluish hands. They put me into solitary confinement -- they call it isolation -- and my mommy and daddy had to wear gowns and masks and gloves when they saw me. My friend Jennifer was in isolation next door with RSV, we got it from the same person. She is a triplet, but luckily her brother and sister were not sick. We were also very lucky that it was June when we got it -- so it was out of season and not a bad case. I had just recently been extubated (taken off the ventilator) and I was on a nasal catheter that delivered oxygen into my nose. I didn't need to go back on the ventilator, but I needed to go back under an oxygen tent.

When I was getting over the RSV, the eye doctor said that I had ROP stage 1. It went to ROP stage 3, Plus disease, and then I needed to have cryo/laser eye surgery. I also needed bilateral inguinal hernia surgery, they were huge! So they did both surgeries at the same time.

On June 30, 1995, mommy and daddy took me home! They were so excited! I was very chubby -- 7lbs 10 oz, and 19.25" short! That's because Dr. V had to fatten me up with high calorie TPN (IV nutrition) so I would stay warm enough during my heart surgery. I think I was the fattest premie ever!

I had to have just a whiff of supplemental oxygen and be on an apnea monitor and a pulse oximeter at home. The pulse oximeter told my mom and dad how my blood oxygenation was doing and the apnea monitor told them if I stopped breathing (never happened). We had a big ugly green oxygen tank in the bedroom, and smaller oxygen tanks to take with us when we went out. The oxygen went through a tube from the tank to a catheter in my nose, taped to my face. It didn't hurt at all, but it tickled my nose sometimes. I am off the oxygen now, yeah! Mom and dad were getting really tired of hauling those tanks around!

I have been healthy since I have been home, just a few viruses, but I get over them quickly. Mom was concerned about my head shape from laying around the NICU so long, and she wanted to find out if something could be done to help along the reshaping process, so we went to see a very nice neurosurgeon. He told my mom that I have craniosynostosis, the premature fusion of a head suture and that I might need surgery! Luckily at the next appointment with the neurosurgeon he said my craniosynostosis is mild and my head shape improved and I will very likely not need to have surgery. Whew.

(Written when JH was 2):
I have occupational therapy twice a week with Judy. She is a wonderful OT and has helped me alot. I have been doing very well since I have been home. I don't like sitting still, I only like to move. I took my first careful solo steps at 12 months old and by 10 months adjusted age I could walk pretty well, and now I run everywhere. My favorite game is running away from mommy. Now I am taller and skinny, probably from all that running around and because I don't have time to eat -- got too many fun things to do! I love Winnie the Pooh, or Babapapooh as I call him, the best. I take one of my Poohs with me everywhere.

October 1998

I am 3.5 years old and go to preschool and read and write and add and subtract and love to play! I've been very healthy and happy. I still have my model figure, but I love to eat, just not too much. Mommy says I'm a lucky boy. I wonder what she means?

Thanks for reading my story!