Mary Caitlyn

My granddaughter was born 5 weeks early on March 15, Wednesday, in Hilton Head, South Carolina by emergency C-section. I received a call from my daughter Michelle that her water had broken and she was on the way to the hospital. She called later to tell me that the baby was here and weighed 5 lbs. 8 oz. and that she was doing well.

The next morning I received the panic call that the baby was being moved to the Medical University of Charleston (MUSC), two hours away and Michelle could not go with her until the next day. She was diagnosed with HLHS on Friday and moved from NICU to PCICU. We were give the three options Compassionate Care, Heart Transplant or three surgeries. We chose the three surgeries. When she was 7 days old Dr. Bradley attempted the Norwood, but was not successful as he could not get her on the heart lung machine, but he did place bands so that the pressure in her lungs would not be so high. Dr. Bradley's recommendations at the time were to let her gain weight until she reached 9 pounds keeping her in PCICU the whole time and then he would do the Norwood.

After much discussion and prayer we decided that our daughter would stay at the Ronald McDonald to be with the baby and we would go home and visit as much as possible (we live 4 hours away). Our daughter was living in the Ronald McDonald house in a strange city with a critically ill baby. After the first surgery attempt Mary Caitlyn's father left as he could not deal with a sick baby, so Michelle was also homeless. A very trying time for all of us.

Little Mary Caitlyn thrived in the PCICU, she had a Broviac placed in April other then that the normal tests were done. Finally in May she was 9 pounds and the heart cath was done to see exactly what needed to be done. Dr. Bradley decided that he would do the Norwood and the bidirectional Glenn in the same procedure on June 12. Papa and Nana left on June 8th for Charleston as we wanted to be their before the big surgery and she was to be baptized on June 10. With all of that accomplished her big day came, a very long day.

Mary Caitlyn came back from surgery finally about four that afternoon and the doctors were very concerned about her oxygen levels, as they were low. They sent us home about 7 and called us back at 9 as she was very critical. The doctors sat by her bedside most of the night. This unit is absolutely the most caring place I have ever seen. The decision was made the next day to undo the bidirectional Glenn. She was returned to surgery on June 14, the bidirectional Glenn shunt removed, her sats improved and she continue to improve. She is a little fighter.

Mary Caitlyn finally was allowed to leave the PCICU unit and go to a regular at the end of June. She is having trouble with feeds and a GI tube was placed on July 7, but that allowed her to come home to her Nana and her Papa. My miracle granddaughter will be four months old on July 15th and she is finally out of the hospital. Her mom and the rest of the family cannot say enough about the wonderful compassionate care that Mary Caitlyn received at MUSC. I also know that the Ronald McDonald House and the hospital took wonderful care of her mommy's needs.

Mary Caitlyn does not have to return to MUSC until November 2006 for another heart cath so see when to do the next surgery. We are all enjoying having this little princess at home.

September 15, 2006 Update

Mary Caitlyn, was 6 months old today and she lost her fight against HLHS. She was a brave sweet wonderful giggly granddaughter and she will be missed by her whole family.