Hope

Most women remember the ultrasound where they find out the sex of their little one. I had two previous ones and two little boys. When I went to the one in May, 2009 I was expecting to hear that we were having yet another little boy. I was happy and didn’t really think too much about the appointment. I look back on that day so often. I can remember it like it was yesterday. The ultrasound technician left the room to get the regular doctor and I sat there knowing something was wrong. When the doctor told me they think our little girl (yes, they told us that too) had a heart problem I didn’t really think too much about it. I figured it was a hole or something that could be repaired. Little did I know that our little girl would be born with ½ a heart (Hypoplastic Left Heart Syndrome - HLHS). Just typing that today…after almost 9 months with our little girl is really hard.

Hope was born on September 14, 2009 at 10 pm. She was not whisked away from us, but was kept in our room to spend time with our families and to be christened. She spent nearly 2 hours with us in the birthing room before being transported to Akron Children’s Hospital. Prior to Hope being born, we knew about her HLHS as well as her missing kidney (renal agenesis). Amazingly, God answered our many prayers and after Hope was born, they were able to find two kidneys…very small kidneys, but they were both there! Hope was also lucky because she did not need any artificial help breathing. She was on room air the entire time she was in Akron. Her Norwood was scheduled for September 22nd. On the 21st, the surgeons in Akron determined that Hope was not an ideal candidate…they would not perform the Norwood. Devastating is the only word to describe our feelings. We were frantic and determined that our little girl was a fighter and besides…she looked too good not to try and save her life. We had her transferred to Cleveland Clinic Children’s Hospital and prayed the surgeon there would be willing to perform the Norwood. On September 30th, we held Hope in our arms and then watched her being taken back for open heart surgery. It was a long hard day, but it was also a special day because we knew she was a fighter and wanted her to show the world and especially the doctors all the fight she has!

Hope came through surgery better than anyone expected. Her kidney’s worked better than expected and her recovery was better than I expected. Hope came home for the first time on October 28th.

On March 8th Hope went in for her bi-directional Glenn. She did AWESOME. She was home 6 days later. She had to have her left pulmonary artery ballooned on the 13th of May and is now enjoying her time at home more than ever.