Penelope and CHD - Part IV

Fact: 50% of people with Down syndrome are born with a congenital heart defect.

You can see pictures of her scar here in Part III. Or read where Part II left off here.

Scott and I finally left the Manchester Hospital a little after 7pm. Again, all I can tell you was that it was so surreal. I know there are plenty of moms that like to leave the hospital as soon as possible, but I was not one of them. Only 12 hours earlier, my daughter Penelope was delivered.

I needed to see my son again before the night was over as well as pick up the prescription for the sleeping aid so we headed out to my mother's house while the prescription was filled. I hugged and kissed Nathaniel so much that night. I had already begun to project my feelings of loss onto him and wondered how his life was going to be affected by his new sister. After I was satisfied that Nathaniel was settled in for the night, we made a quick stop back at the pharmacy and then off to Hartford we went.

Scott had stayed with Penny for several hours earlier in the day so he already knew where to go and what to expect.

It was close to 9pm when we parked at the garage. It was a warm spring evening when we walked out of the garage and across the courtyard and into Hartford Hospital. CT Children's Medical Center is adjacent to Hartford Hospital so CCMC is able to place their NICU in HH to have that unit close to the maternity ward. We were stopped briefly since visiting hours were over, but were quickly on our way up the elevator.

As we approached the large steel security doors to the NICU, I almost didn't want to go in. We were eventually greeted at the window and given nametags. On the other side of the doors, Scott schooled me on how to scrub in. I remembered back to when my baby brother Joe was born premature. I was ten and I was allowed to see him, but I had to scrub in as well. Scott and I headed to her little alcove there in the North wing of the NICU. About only five beds were permitted on this wing and it was so quiet. All the lights were off and I could hear the soft beeping of the machines. Occasionally, an alarm would ring in the distance. But in Penny's small wing, she was the only really sick one. The nurse on duty greeted us and led us into her little corner.

The first time I looked at her, I actually felt numb. A whole lifetime must have passed since last I held her at 9 am. Her eyes were so incredibly swollen that the edge of her eyelids flipped out a little, especially when she cried or was upset. In fact, the whole top part of her head was red. The corners of her small mouth were downturned and her chin was all scrunched up from the scowl. Her arms and legs were sprawled out. I tried to comfort her, and patted her arm. This immediately got her agitated and her eyes looked even more firery. The nursed warned me that it might not be a good idea to touch her while she was on the medicine to keep her heart working. "It can make you grumpy," is what she said to me.

So much time has passed since her birthday; I can't even recall how many lines were in her. But at minimum, she had an arterial line, two peripheral i.v.'s, a sensor on to continuously monitor her temperature, a pulse oximetry probe, and sensors to measure her respiratory rate. I quickly learned the meaning of the green, blue, white, and red lines on the monitor hanging above her bed space. I don't even remeber if she had a nasal canula at this point. I know that she was not on a respirator at this time, even though the prostaglandin medication she was on affects the respiration rate. I wasn't able to stay long. And even though it seemed unintuitive to leave my newborn behind me, I had to leave. I had to get out of that place.