Penelope and CHD - Part II

Fact: 50% of people with Down syndrome are born with a congenital heart defect.
You can read about Part I here. The next time I saw my beautiful girl, it was about 11:30 am. You can see that she was tucked away into the incubator and ready for transport to Connecticut Children's Medical Center (CCMC). Everything was still a blur. I remember the physician from UConn going over a waiver with me. I remember he had this tick and said "hmm" between practically every sentence and that annoyed me. But, he was nice enough and he promised to take good care of her en route to CCMC.

I still hadn't grasped the enormity of the situation. I look back on this picture with distaste. Why was I smiling? What did I possibly have to smile about? Why was I holding my belly like I was still full of child? I guess, I still didn't know what to do with my hands at this point. Only 5 hours ago, there was still a baby in there. Immediately after this picture I had to yell at Nathaniel for playing with the buttons. I didn't know what these buttons did. He might have done some serious damage!

Scott was welcomed to follow the ambulance. Enter friend: Mike, this kid that Scott had met only a few months ago came to visit us immediately after hearing about the news. He brought me the most beautiful flowers and stood by Scott's side the entire day. Later that year, he moved onto another job and Scott and he lost touch. He was a tremendous source of support for Scott during this time and I was glad to have him. Mike was able to drive Scott behind the ambulance. We are so blessed that CCMC was only 20 minutes away so I wasn't worried that my family was too far away. My mother took Nathaniel back to her home and I was left alone to rest.

Proir to my mom leaving, as I sat there wondering what to do with myself, the obstetrician that attended during the beginning of my labor paid me a visit. We had just met earlier that morning, as I had all of my visits with the midwives in the practice. He did not stay with me through to the end of my delivery. Another woman who labored at the same time ended up with an emergency C-section and he moved on to her when my favorite midwife arrived to deliver my daugher. Yet, while I sat and stared, this doctor came back to me. He came in to see how I was doing and to offer any advise, should I seek it. I thought that ws very nice of him.

The plan was that I remain at the hospital a few hours for observation and my midwife would discharge me after dinner. I thought in my head that Scott would find out what was wrong with our daughter, wait for her to get settled in and come back in time for a dinner together . After dinner, we would promplty be freed and then he would take me back to Hartford. I expected all would go according to my plan and I would be reunited with my daughter by 7 pm.

It seemed forever until Scott returned to my side. He couldn't recall the issues that were concerning Penelope's heart or a name of a diagnosis. But he said that the Dr. Cardio said it was pretty common and the outcome was hopeful. I was warned that she was on medication to keep her heart working until they could decide on a proper course of treatment.

I seem to remember that Scott must have ran home to do something, because I was left alone, waiting for those discharge papers to come. Dinner came and went and still no word of when I could be let out. I decided to get myself to the nurses station and get in their faces a bit. My midwife was bound to be out there somewhere. As I head out to the station, I could hear the other mothers with their babies and I started to get emotional, yet I continued on to the desk. I stood and waited for an eternity for someone to pay me some attention. Since no attention came, I walked further past the desk to the great window of the nursery. There were no newborns in there right then, but the hurt in my heart began to deepen because I could not even opt to have my baby there. I headed back to the nurses station and with each step, another tear came down my face. By the time several nurses had time for me, I was weeping. I demanded to be discharged! Why should other mothers that had their babies get to go home before me??!?!

I remember being held up by two nurses, one on each side, to escort me back to my room. On one side was the new midwife on duty. She sat in with me and let me cry. The one thing that anyone said to comfort me in those first days was from her and it sticks with me to this day. She said to me, "You grew her the best way you knew how." Which was to mean, this was in no way my fault. It was such a relief to hear these words even before she went through the specifics. My baby was a wonderful 7 lbs 5 oz. She was born at 39 weeks and 6 days! All the work I did to keep myself healthy during my pregnancy will pay off because I just gave her every advantage I could to make it on the outside. Of course, my work wasn't done. The daunting task of pumping and storing my milk was ahead, but that is another series for another week.

This midwife and I had a discussion. I remember sobbing over the fact that my son was not planned (Scott and I weren't even living together when this miracle was made.) And it was hard in the beginning to get through all that. Now, Scott and I were married, settled, and decidend to bring a new life into this world, and it wasn't anything like we planned. (Geez, I sound like a poster child for "Welcome to Holland") She told me it was ok to feel this way. In a very obvious way she expressed her concern about post partem depression for me and that she wanted me in for a check up at four weeks. She also prescribed some sleeping pills. This prompted me to voice my concerns about my expressed milk. She told me that I can take the first night off from that and my milk would still be there the following day. She ordered me to take that first night off and really get a good night sleep in order to face what lay ahead.

AS ROUGH as that was, I am glad I took her advise.

More to come in PART III