Penny, the baby girl: Heart Link I discovered

Wednesday, June 25, 2008

Heart Link I discovered

I never realized that the Little Hearts Website linked you to a John Hopkins tutorial website that gives really great visual information on all the different kinds of heart defects. I finally understand what an overiding aorta means when reading the information on Tetrolgy of Fallot.

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Penelope's Story

After waiting the full 40 weeks for this bundle to arrive, I finally went into labor on Memorial day, 2007. At about midnight, I called my midwife's office. I was told to wait. At 2 am my contractions felt on top of each other and I called my midwife's office again. By the time my dear husband, Scott was ready (I had my bag and Nathaniel's bag packed previously) it was 3 am. We arrived at the hospital at 3:30 after dropping Nathaniel off at my mother's house. When I was checked, it was discovered I was already at 6 centimeters! My wish was for a natural delivery so Scott worked hard at rubbing my back and making me comfortable. Oh, yeah, and I worked hard too! At 4:45 am I was ready to push! I thought this part would be quick since my first child took about 30 minutes at this stage. However, this baby decided to take her time. At 6:30 am I was still pushing and my midwife, Mary, arrived just in time for the delivery. As she was gowning up I had to stifle my urge to push for a few moments and then before I knew it, Penelope Adara Ringrose came into this world at 6:51 am! Scott cut the umbilical cord as she laid on my abdomen.

It was a surprise that I had a baby girl, and I am glad I decided not to find out the sex. Another surprise we learned at birth was that Penelope had a little something extra, as in an extra 21st chromosone. I knew the second I saw her that she had Down syndrome, but I thought I could have been wrong. Then at 7:30 am, the acting pediatrician explained to Scott and me that our daughter had a lot of characteristics of Down syndrome. I couldn't believe that on this day that was supposed to be so joyous, I was receiving what I thought at the time was such devastating news. I didn't know much about Down syndrome. Scott and I were left alone to bond with her for a little while and then she was taken away at about 9 am to be checked over. The worst news was yet to come when we learned at 10 am that they suspected cardiac issues. The neonatalogist introduced himself and advised that Penelope could not maintain her blood oxygen saturation on her own and would have to be transfered to another hospital where she would need life-saving surgery. At CCMC (Connecticut Children's Medical Center), we learned that she has tetralogy of Fallot with pulmonary atresia (she is missing the pulmonary artery).

Her first surgery was on June 4, 2007 when she was just 6 days old. The surgeon had hoped to be able to do a full repair at this time, but Penny's anatomy did not enable this to happen. The surgeon was able to put in a Blalock-Taussing (or BT) shunt which kind of gives the blood a detour to the lungs so that it has a chance to be oxygenated. After 20 days total in the hospital, Penelope came home the day before she was 3 weeks old and was able to attend her brother's pre-school graduation.

She was scheduled to have her second surgery on November 27, but during triage at CCMC, it was determined that she had a pseudoanerysm on her right groin and the surgeon did not think it was safe to proceed. The pseudolanerysm resulted from a diagnostic catheter procedure that Penny had on November 14 to see if she was ready for another surgery.

We took our chances that she would be home for Christmas and had her surgery re-scheduled for Monday, December 17 . It was an uneventful surgery except that it was longer than we anticipated. We last saw her at 7:50 am and we did not hear news until a little after 4 pm. The breathing tube was taken out at about 2 pm the next day. Wednesday, the chest tubes were supposed to come out, but a pneumo thorax was found in the chest space and perhaps, leaving the chest tubes in was a better idea. One of the three tubes was removed on Thursday and we were able to begin feeding her from a bottle. Friday, the remaining chest tubes were removed and I was able to breast feed her again! Penny was doing so well she came home the next day and was indeed home in time for Christmas.

We all love her so much and can't imagine life without our beautiful baby girl.

Penny, the baby girl

Wednesday, June 25, 2008

Heart Link I discovered

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