Annalise now

When Annalise was born

The Recovery

We found out that Annalise had a CHD at our 18-week ultrasound. My husband and I were playfully arguing over whether to find out the sex of the baby when the doctor came in to deliver the terrible news. Our child had pulmonary atresia. We could not believe that this was happening to us. The pregnancy itself was a complete shock (my first child Jacob was barely 3 months old when we found out that I was pregnant again).

The wonderful team at CHOP saw us the next day. They decided to monitor our baby twice a week. She was beginning to develop fluid around her heart, a sign that her heart was failing. Within weeks though the fluid was gone! We had overcome our first obstacle. They still continued to monitor her weekly and discussed the possibility of an in-utero surgery. Thank God, her heart continued to grow and became stronger each visit. Soon the appointments began to spread out. The fear that we would lose her before we would even meet her had started to subside. Before long our beautiful baby girl arrived.

The in-utero diagnosis was correct. She had pulmonary atresia with severe tricuspid regurgitation. The right side of the heart was also smaller than it should have been but would hopefully grow once the PA was corrected. They decided on a balloon valvuloplasty to correct the PA and hopefully the tricuspid leak. We were so happy. It was the least invasive of all the procedures we had discussed and she would be home in a week.

During the procedure, her right ventricle was punctured causing Annalise to go into cardiac arrest. They were able to stabilize her and the rest of the procedure was a success. Within hours though Annalise was on a downward spiral. Before we knew it she was in cardiac arrest for the second time that day. She was rushed to the operating room for an emergency open-heart surgery. We were told that her chances for survival were slim. Miraculously, she pulled through! They never even had to put her on bypass!! The weeks that followed were very trying. She was intubated for two weeks following the surgery with two failed attempts at extubation. She suffered some mild brain injury, seizures, liver and kidney failure and put on four pounds of fluid. Slowly, she recovered and four weeks later we were able to bring her home. She came home with an ng tube and 9 meds.

Annalise is 5½ months old now. She has only 3 meds left (hooray). She pulled out the ng tube 3 weeks ago (something she has become quite good at doing) and we have decided to let her fly! With any luck it won't be going back in!! She sees the feeding team at CHOP who actually started her on rice this week--so far so good. Her recent neurology and cardiac appointments went great. She has pt weekly and her next cardiac appointment is in a couple of weeks. It is possible that she may need another surgery but we hope and pray that our little fighter continues to fight.

She is a wonderful baby with a great personality. She is always smiling especially at her big brother. I could not imagine a day without her in it.

We would like to thank all our wonderful family and friends who have supported us and continue to support and pray for us. We also want to thank the wonderful doctors and nurses at CHOP who took such wonderful care of our daughter. We will be forever grateful to them!