Penny, born 2007After waiting the full 40 weeks for our bundle to arrive, I finally went into labor on Memorial Day around 9PM and Penelope Adara came into this world on May 29, 2007 at 6:51AM.
It was a surprise that I had a baby girl. But the surprises did not stop there. Another surprise we learned at birth was that Penelope had an extra 21st chromosome. I knew the second I saw her that she had Down syndrome, but I thought I could have been wrong. I couldn't believe that on this day was supposed to be so joyous, I was receiving what I thought at the time was such horrible news. We were left alone to bond with her for a little while and then she was taken away at about 9AM to be checked over. The worst news was yet to come when we learned at 10AM that they suspected cardiac issues. The neonatologist advised that Penelope could not maintain her blood oxygen saturation on her own and would have to be transferred to another hospital where she would need life saving surgery.
At CCMC, we learned that she has Tetralogy of Fallot with pulmonary atresia and would require several surgeries throughout her life. It was a tough six days before she could have surgery that even required intubation because the prostaglandin suppressed her respiratory system.
After surgery on June 4, 2007 to put in a BT shunt, Penny had to prove that she could eat before she could be discharged from the hospital. At 20 days old, she was sent home and did very well gaining weight. She was constantly in the 90th percentile for weight on the Down syndrome charts.
On November 14th, she had a diagnostic catheterization to determine if her heart was big enough for the full repair. Her heart looked good and surgery was scheduled for November 27th. Unfortunately, we returned sooner as a pseudo aneurysm was discovered at the cath insertion site and surgery was rescheduled.
On Monday, December 17th, Penny went back to CCMC for the full repair. It was a wonderfully uneventful surgery. She received a homograph conduit to replace her missing pulmonary artery. On Tuesday, she was extubated and she resumed breathing on her own just fine. There was a delay in removing her chest tubes because a pneumo thorax had developed on the left side. It was really hard not being able to hold my girl for so many days. On Thursday, we were able to begin feeds. On Friday the chest tubes were removed and we came out of the PICU. She still needed morphine and a nasal canula with oxygen. The next day, Saturday, she was a new baby who was sent home just in time for Christmas and has been happy ever since!
Story by Penelope's mom, Maureen - Connecticut
Nathan, born 2008