JORDAN

Jordan started from one missed birth control pill. I knew my conception date exactly from the beginning. I had a very hard pregnancy. I could hardly eat anything and was hospitalized a few times for hypermesis: extreme morning sickness. Phenergan became my best friend. I couldn't take prenatal vitamins as the iron made things worse, so I took Flinstones. I grew, and from what the doctor said, Jordan grew fine. I didn't show until I was almost seven months pregnant. After I began, I quickly blossomed so I thought that I had just "caught up" to where I was supposed to be.

I was wrong. Jordan was induced on my due date, April 8th 2003. At exactly 40 weeks gestation Jordan weighed in at 5 lbs 2 oz's and 18 in. long. She looked like her skin was hanging loosely off of her bones. She had little to no body fat and no muscle tone what-so-ever. I, along with everyone else, was shocked. She was expected to be a 7 lb. baby. I wasn't prepared for such a small baby. I had no clothes or diapers for her that would fit. My OB-GYN suggested that I use her take-me-home dress as a blanket. We were all stunned. After a 5 day hospital stay (she passed meconium right before the cesarean and I became infected) we went home and I expected her to just pick up and gain weight and grow like the doctors told me she would. By the way- SGA and IUGR were terms never mentioned to me.
I had so many problems feeding her. We went through 6 different formulas until she settled on Nutramigen. She didn't know when to stop feeding. She would just eat and eat and eat, then throw up everything. I thought she was bulimic - kidding aside - I knew something wasn't quite right, but the doctors assured me that she was fine. They were lying to themselves as well.

Jordan grew slowly but she grew. She achieved all of the milestones early: walking at seven months, speaking in complete sentences at a year. Jordan was counting at two, knew her colors at a 1.5 years. I was so happy that she was so advanced that I figured that she would just be small and that nothing is wrong. I mean, obviously she's getting enough nutrition because her brain is working great, right? If something were seriously wrong, she wouldn't be so smart, right? She has to be getting enough calories; she's still advancing, right? Wrong.

At two and a half years old, the doctors mentioned FTT to me. They ordered a number of tests at the hospital including bone age testing. All of the labs came back great: the bone age was just right- everything was fine. She's just small and will grow along her own growth curve said her pediatricians. Wrong.

At her three year old check up I was anxious. She was still wearing clothes that fit her the year before: size 18 months. She weighed 23 lbs. and was 34 in tall. Way too small. She hadn't grown at all in a year. More testing and a referral to a pediatric endocrinologist led to her current diagnosis: SGA. The new bone age tests came back with shocking results: two years and two months old. Not only had she not physically grown at all, but her bone age hadn't advanced either. GH was mentioned, and all of this being new to me. I freaked. I didn't go back but instead went to another pediatric endocrinologist for a second opinion. The second opinion agreed with the first: SGA, but he differed in treatment opinion- he did not recommend the use of growth hormone at the time. What to do? Who should I listen to? I went on the internet to find out more info on SGA, and that is when I found MAGIC. I attended the Magic Foundation Convention to find out more on the syndrome and it literally saved Jordan’s life. We met Dr. H for the first time there. She concurred with the other two endocrinologists- that Jordan is SGA, and that Jordan needs growth hormone therapy.