Little Hearts

Julia, born 2005

People ask me how I lost all of my weight after the birth of my daughter. I tell them I went on the "my daughter needs heart surgery diet". Funny how you don't even think about food, but I do not recommend this diet.

I was going to write about how we found out that Julia had Tetralogy of Fallot as well as a narrowing of her pulmonary artery (PS) and how we felt but I am not going to do that. I am going to tell you about a small man with magic...hands and piercing blue eyes that used his special gift to save my daughter's life. I could have worded it differently but let's face it - that is what he did! I will never forget him.

To this day, I have only spoken with Dr. Quagebeur for five minutes after the surgery where he was able to do a full repair but I thank him every day. A nurse told me then, "Your baby won't remember any of this...you will be scarred for life." She was right!

Instead of Julia being in her new bassinet, my daughter spent the first three weeks of her life at Columbia Presbyterian Children's Hospital. She had the hospital lights above her rather than the teddy bear mobile that I had in her new crib at home. She did not drink from the new bottles I had sterilized for her but from an IV. The alarms and wires attached to her made it difficult to hold her and there were days when I was not allowed to. But, I was by her side the whole time. I was her Mommy, a new one at that. I went from my hospital bed to a chair next to hers. I felt a fear that I had never felt before and hope I don't have to again.

We were just getting to know each then, me and Julia. Now, we are old pals. My daughter today is doing great! Her smile can light up a room, it lights up my heart every day. She laughs, claps her hands and has just started to walk. There is so much ahead and she will never remember those first three weeks. I will never forget them.

Story by Julia's mom, Dawn - New York

4/18/2011
Kalila, born 2008
« previous
4/18/2011
Joshua, born 2004
next »

 
Mask
Become a Member Arrow
  • No cost to join
  • Access to support services
  • Connect with other parents
Share your Stories of Hope Arrow

Have a baby that is newly diagnosed with a CHD? Read our stories of HOPE from other people just like you.

Little Hearts, Inc.

P.O. Box 171, Cromwell, CT 06416
Phone/Fax (860) 635.0006  Toll Free 866.435.Hope
SecurityMetrics for PCI Compliance, QSA, IDS, Penetration Testing, Forensics, and Vulnerability Assessment Web Solutions Connecticut CT Web Design & Development Company