My son Ryder was born in April 2013. He has VSD, pulmonary artresia, TOF & DiGeorge Syndrome. I found out he had a congenital heart defect when I was 18 weeks along. I remember how excited we were for that day because we were to find out the sex. At a prior ultrasound we were told that they thought he was a boy, but at our 18 week ultrasound they'd be able to tell for sure. THAT was a hard day. So we found out he was a boy with a heart defect & told to Google DiGeorge Syndrome.
I had a scheduled C-section at one day shy of 40 weeks. He was 8lbs 7oz & 23 inches long. At three days old they did a heart catheterization & were able to balloon & stint his pulmonary artery avoiding open heart surgery for the time being. He was in the NICU for seven weeks. At six weeks old, Ryder wouldn't pass a swallow test & had reflux so they did a fundoplacation & put in a G-tube. He had his second catheterization at four months old.
Upon bringing Ryder home, he started gagging & choking; it got worse & worse over time. Each episode left him unable to breathe until I suctioned his nose out. Finally in October, he was having to be suctioned through his nose within an hour of every feeding time. My husband and I were physically and emotionally drained and I had been making calls to anyone who would listen to try to find out what his problem was. I was told to bring him to the hospital. We stayed three days and not once did he "perform" for a doctor or nurse. We were sent home but this time he was to be on a continuous feed.
For the next two weeks he seemed a bit better but his spells started to creep back up slowly. The Monday after Halloween I was back to suctioning his nose every few minutes. I couldn't be any further than an arms-length away for weeks for fear he would be unable to breathe from a spell if he wasn't in my sight. The only time he seemed to get any break from it was when he went to bed at night. That Monday night after Halloween, he began to do it at night. We stopped his feed and called 911. Into the ER we headed that night and back to the hospital where he finally "showed" a doctor what happened after a feeding. I was told they were called "death spells" and that he would need a different G-button bypassing his stomach going directly to his small intestine. His stomach wasn't allowing food to drain so it would fill up his tummy until he was so full the food had nowhere to go but up and out of his nose.
Ryder was due for his third heart cath, so they didn't want to do the button placement until after the cath in case it would put stress on his heart or if his sickness was heart related. Care Flight to Vegas and then they did the cath first, dilating the stint and removing collateral arteries. Shortly after his cath he started fussing and almost bled out. I knew something was wrong and uncovered him to find him in a pool of blood. I thought I was going to lose him but they stabilized him and gave him a transfusion.
I was never so happy to see him all cranky the next morning. Finally, moving on to the stomach issue three days later including putting in the GJ-button which bypassed his stomach. We got home in time for Thanksgiving (not quite two weeks being home); then three days later Ryder became so sick that I took him to the doctor. The doctor told me he wanted Ryder admitted to the hospital yet again. The hospital is four hours away and I had to leave with only the clothes on my back.
Ryder had influenza A and was in the PICU for another two weeks. His sats were in the mid to high 80's and the hospital wouldn't let him go home until he was satting at his normal level without oxygen. They sent us home on December 16th with Ryder on oxygen for fear if he stayed in the hospital any, longer he'd catch something else. On January 3rd we took him to the pulmonologist and cardiologist; we were told that Ryder was good to go without oxygen. We spent Christmas and New Year's Eve at home together with my husband and four year-old son, finally together.
Ryder recently turned nine months old, at home! He's due for his heart repair in February or March of 2014. Since his GJ-tube placement we've had no gagging or choking spells. Ryder just had two bottom teeth appear & he's just a happy sweet little guy. Since it's all so new I'm not sure what lies ahead with his diagnosis of DiGeorge Syndrome but happy I have found support groups like this to help us on our way.