My Beautiful Baby Boy

Our Family Photo

Starting Something New

I have never had a blog or subscribed to a blog before. Today I was searching google for random things and came across a blog that inspired me to do this. 3 weeks and 1 day ago I lost my son to a lethal form of skeletal dysplasia. He was 11 weeks old and named Gavin. He was my first child and the light of my life. We new when I was 7 months pregnant that Gavin had some type of dwarfism, but based on ultrasounds the doctors told us that they thought it was an unlethal form of skeletal dysplasia, achondroplasia. We always thought that he would just be little. We had frequent ultrasounds and Gavin seemed to be doing great. He was small for his gestational age, with short long bones. There are scary stories out there, and I avoided the internet a lot before he arrived. Gavin was born on May 28th, 2009 in St. Louis. He was a little guy at 4 pounds 5 ounces, but he was so perfect. Gavin had very unique hands and feet, fingers and toes. They were much smaller than the average baby. Very cute. His long bones were slightly short, especially in the legs and he had a smaller chest. We spent 22 days in the NICU and finally came home. Gavin had some difficulties taking to eating, coordinating sucking, swallowing, and breathing. He never needed any oxygen at this time. The third day we had him home he had an episode of apnea and we were back in the NICU, this time to find out he had reflux and aspiration pneumonia. This time in the hospital the litlle guy really blossomed and put on the weight. We were finally released after ten days, but this time with Gavin on oxygen. We were home 11 days and Gavin had to be flown to the hospital with respiratory problems. He had aspiration pneumonia again. Many tests were done by specialists to make sure his heart and throat were structurally correct. Everything was looking good and we were moved from the PICU to the TCU, a step in the right direction. Gavin started having episodes where he would have trouble breathing and catching his breathe. He was the calmest, sweetest baby and seeing him struggle and get upset was so hard. We had a meeting with all the doctors together and they told us that Gavin wuld not be able to make it. Thet couldn't tell us how long, but that his chest was not growing and that it was too small for his lungs to fully function. This was something we had known to fear since we found out he had a skeletal dysplasia, and it is the worst fear. After this meeting we had xactly one beautiful week with our son. We have so many wonderful memories with Gavin, he had the prettiest blue eyes. He was so sweet and so much fun. My heart just aches from the loss. I started this blog because I saw a few blogs that story had had a happier outcome than ours. Gavin skeletal dyplasia was never diagnosed because the one that he was thought to have, opsismodyplasia, the gene to diagnose by has not been discovered yet. We really are left in the dark about if we can have more children and the odds they will have the same thing. It has been nice to vent, but I have to go now.