Monday, October 26, 2009

Penelope and CHD - Part VI

Get It Down; 31 for 21
You can read where I left off in Part V right here.

The Thursday afternoon, I sat there nodding my head at all the things Katie had to tell me. Katie was the physician's assistant to the pediatric cardiac surgeon. Anyone who has met Katie will agree with me here that she is phenomenol.

She mapped out what was wrong with Penelope's heart and explained the diagnosis of Tetralogy of Fallot with pulmonary atresia. I was told that Penny would need a surgery immediately, but that the sugeon, Dr. Mello, was scheduled on important cases throughout the week at other area hospitals. There were two scenarios of what would occur during surgery. The preferred outcome was a complete repair. This is where the doctor would cut inside the heart, fix both the holes between the atriums and ventricles. Also, a donor artery would be used to replace the missing vessel. This was only a possibility because when working with a heart so small, the coronary arteries can cover a lot of the surface area of the heart, making it difficult to find a safe place to cut into the heart. If the coronary arteries were too much in the way, Dr. Mello was going to insert a BT shunt between her pulmonary artery and aorta (kind of like a synthetic ductus). The shunt would allow Penny to stay oxygenated so that she could grow and develop, but also her heart would grow bigger, possibly allowing the space to perform a complete repair later.

So, the advice was that we were to play the waiting game. We prayed that Penny would be kept stable enough to wait until the scheduled surgery on Monday.

Later on Thursday, I met with Penny's primary nurse, Rhonda. I loved her way of letting me keep as much control as possible since I was the parent. She also insisted that I get to hold my child so that Miss Penelope could understand that her mother was there for her. I have to say that day I got to hold my newborn for the first time since she was taken away from me in Manchester, it was wonderous. I got to smell her, feel her soft skin, kiss her warm head, and wisper all my love to her. As saddened as I was still of the diagnosis of Down syndrome, and then the news of the heart defect, I felt all the tension float away as I got to settle in with Penny in the chair.


The next couple of days were a blur of the NICU, coming home to find all the flowers and cards people were sending, pumping, and napping. Scott or I were always are the hospital. There was never even a discussion about this. We could never have let our daughter be alone even for a few minutes. So, we took turns staying home with Nathaniel and making sure that his needs were met. My mother also watched him a lot.

It should be noted as well, that at this time, Scott's 59 year old mother, Sandy, had been recently admitted to the same hospital to be treated for some respitory concerns. She would get into a wheelchair and get her husband to take her down a few floors to come into the NICU and visit. It was tough to see her so sick, but I loved that we could not keep her away from her new granddaughter.

By Saturday, it was clear Penelope had a very difficult time keeping her little body going. The balance to keep her respitory and blood pressure rates where they wanted it against the ever important blood oxygen saturation level (or pulse-ox) was difficult. I got a call from Scott in the middle of the Saturday night that they were going to intubate her. He came home to switch shifts with me and we both wanted to go to the hospital to see her. After we left Nathaniel with my mother again, we headed off.

Seeing Penny with the breathing tube was very traumatic for Scott, it reminded him of his ailing mother and I remember how moved I was by his tears. For me, it was honestly just one more thing. She was going to have surgery the next day and she would have been intubateted so I saw this as one less thing to worry about tomorrow! But it was still touch and go and Penny was a very sick baby. My grandmother called her nephew, the deacon and asked him to meet us at the hospital to baptize her. Scott and I were so happy for this because we didn't want to take any chances.

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