Thursday, October 21, 2010

From Mutterings and Mussings

This beautiful girl you see is Lucy. When Nichole was first born I found a wonderful forum for parents of children with Down syndrome. Lucy, and her mommy Courtney was a member of this forum, and since we both had babies, I really felt a connection with Courtney. I valued that they had journeyed with Down syndrome a little bit longer than we had and ever since then I have been following their family blog.

Just yesterday I got to read Lucy's birth story for the first time! I was surprised at how similar our stories were.

So I wanted to share their story with you, since it is down syndrome awareness month. Happy reading!

The Beginning

It really all started with a phone call in February, though I wouldn’t know that for another five months. The day after my 20 week ultrasound, the obstetrician’s office called to tell me that they thought they saw an echogenic foci on the baby’s heart. They told me this was a “soft sign” for Down syndrome. They asked me to come back in for a Level II ultrasound.

I remember being so scared. I couldn’t get an appointment for five days for the follow-up ultrasound. They were the longest days I had known to that point. I didn’t want to tell many people about this “complication”, but I was really struggling with pretending nothing was wrong. We were in the process of buying a house at that time, and had just put a bid in on a house I loved. Mark came into the room and I was crying. He thought it was because they had accepted someone else’s bid. I had never cared less about a house in my life.

My mom went with me to the ultrasound. “Everything looks perfect.” Sigh of tremendous relief. A few more months of blissful ignorance.

I felt my first contractions on Saturday, June 30…literally just moments after taking care of the final preparations for Lucy’s arrival. In the car after having the carseat inspected, I patted my tummy and said, “ok, Peanut, we’re ready for you now.” She listened.

The labor itself was horrendous. I didn’t know it at the time, but I was having back labor. This fooled me into believing that I was farther along than I really was. Sunday night I made Mark take me to the hospital, convinced this baby was coming any second. They sent me home at 1 cm. I felt foolish and vowed not to go back until I was sure she was on her way. The end result was that in a stubborn snit I waited far too long and my precious daughter was dangerously close to being born on my living room floor.

Mark was at work, so my sister took me to the hospital and stayed in the delivery room for the whole ordeal. I progressed from 5 cm to 9 cm in less than 25 minutes. No epidural. I was sure I was going to die. The consolation was that she came fast. I barely pushed. Mark barely made it in time. From the moment of checking into the hospital until the moment she was born…56 minutes.

They took her to the nursery immediately for observation. I was so disoriented that this did not alarm me. They said it was nothing to worry about, but they wanted to monitor her breathing. They came back quickly and said she was breathing fine, but her temperature was low so they were going to put her in the warmer for a bit. They took me to my room, but we stopped by the nursery so I could hold her for a few minutes. She was gorgeous. She looked like Mark’s Mom, brother, and aunt. I was smitten.

It wasn’t terribly long until they brought her in to the room. Maybe an hour? I was eating and don’t really remember. Life was still too surreal to be keeping track of time. We held her. Took pictures. Sometimes when looking back I feel like something was off, something that I couldn’t put my finger on. But sometimes I think it’s just hindsight.

A few hours after Lucy was born, maybe about 4 or so, I was in my room with Mark and his parents. The pediatrician came in to examine her. She was listening to her heart. For a long time. A really long time. My FIL, not one to beat around the bush, questioned the doc on the intensity of her exam. This pediatrician, whom I had never met before, looked at him and said, “well you know the baby has Down syndrome, right?” (I remember it slightly different. I thought she said, “we think the baby has Down syndrome”, but Mark and his parents agree on the original version so that’s what we’ll go with). Mark responded with “Excuse me?”, to which Dr. Bedside Manner replied with, “Are you the baby’s father?”. I am sure there is a lawsuit in there somewhere, but when it was relevant, I didn’t have any fight left in me. Needless to say, this woman is NOT my pediatrician.

“Well, you know the baby has Down syndrome, right?” No. I didn’t. I had always heard the expression “all the air left the room”. I had never felt it until that moment. It left the room. It left my lungs. It was as if someone had physically punched me in the gut. I was shocked. But given our scare way back in February, I wasn’t necessarily surprised. I wonder sometimes if that made it easier. That little non-warning.

The doctor then preceded to show us all the physical characteristics that lead them to the conclusion that Lucy had Ds. After she left, we preceded to explain them all away. Her almond shaped eyes, well, Mark’s family has almond shaped eyes. The small, low set ears, well, I have really tiny ears and I have always felt they were a little low. The slight curvature of her pinky, well, I have a good friend whose pinkies are slightly curved and she most certainly doesn’t have Down syndrome. We’ll wait for the karotype to come in, but we’re pretty sure they’re mistaken.

But, later that night, when everyone else was gone and it was just me and Lucy, I unswaddled her. I looked at her feet. I could not explain away that gap between her toes. And in my heart I knew, though I wouldn’t admit that I knew until the next day when her new cardiologist told me that she had a heart defect and would require open heart surgery within the first year of life. When he walked out, Mark and I both admitted we didn’t need to wait for the karotype any longer.

When she was two days old, we took her home. Knowing what I know now, about how many babies with Ds spend time in the NICU, I feel tremendously blessed. We took her home, relatively healthy, and began the long process of rebuilding our reality

1 comment:

  1. Thank you for posting your story. My daughter has Down Syndrome and had to have open heart surgery as well, at 5 months old. She is just over 9 months and doing so amazing!

    Its nice to be able to read other blogs of parents who also have a child with Down Syndrome. I as well try to blog about it, but have not really felt inspired to write anything lately. Maybe its just nerves or something, but reading your blog has given me a little inspiration, thanks!


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