Saturday, March 2, 2013

Trisomy 1

For Trisomy Awareness month (March 1-31st), I will be featuring a family with the Trisomy or Chromosome for the particular awareness day.  March 1st is Trisomy 1 awareness.  The story below, features a family for Trisomy 1 awareness day! 

Owen's story:
I had a fairly normal pregnancy until my third trimester. For the last ten weeks of my pregnancy I was in and out of the hospital because my amniotic fluid kept getting very low. The doctors blamed me, said I wasn't drinking enough water. I was reassured over and over that my baby was perfectly normal, just a little small. At 38 weeks my fluid dropped very low again, so they decided to induce. He came very fast, I didn't even have time for an epidural. He needed oxygen for a few minutes, but again I was assured that he was fine.
When he was about a day old I noticed that his feet were still purple. I pointed it out to the nurse who brought him to the nursery for observation. His pediatrician told me he was fine and would be sent home the next day. It took two nurses, a respiratory therapist and another pediatrician to convince him to send Owen to the bigger hospital that has a NICU. He was there for ten days and they found he had several heart defects, issues with his kidneys, hearing loss and the front part of his brain was undersized. Still no talk of a chromosomal abnormality though.
We were home for less than two weeks when Owen had to go back to the hospital. He was there for about a week when his cardiologist decided he needed open heart surgery sooner than he originally though. We were able to be home for almost two weeks before we traveled to Dallas for his heart surgery. That was the longest day of my life, waiting to hear if my baby had survived. After the surgery his surgeon casually mentioned that Owen had a chromosomal defect, something we had never heard before that. We have since been trying to find out more about it but his specific abnormality is very rare so they have very little information about it in any books. Its scary not knowing what could happen next.
Since his surgery last October, Owen has been in the hospital several more times. We have not been home longer than two weeks at a time since he was born. He recently had a gtube put in so he is finally starting to gain some weight, but he is still just over 13lbs at six months. He is on oxygen at home but we are hoping to wean him off soon. He is generally a very happy baby and will always smile for his older sister. He is significantly delayed on his milestones, but i am optimistic about his future.

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