Gianna’s Story, Part I

Matt and I found out we would be parents of 4 Monday, May 10 of this year. I had just given away the last of my maternity clothes and baby things 2 days before.
I found myself laughing out loud when I first realized that 2nd pink line was there. I’m 43, Matt would be 42 in August. I knew people my age who were still having babies but it had been 3 1/2 years since my last baby and we assumed there wouldn’t be anymore.
After that, I found myself alternating between happiness and fear. Fear, mainly because of my age. Matt would figure things like this, when the baby graduates from high school, I’ll be 60 (laughing nervously).
I got through the 1st trimester with the usual amount of nausea and tiredness, the couch and I became very good friends during those first 12 weeks.
My energy level came back up again and we picked up the busy-ness. I think by the time you have a few kids, you don’t notice that you’re pregnant so much. Life is on hyper-speed and so are you and baby. I would think, well, you’re the 4th kid, you’re along for the ride babe.
We went to Hershey Park the first week in August and I was looking forward to coming back to have my sonogram that Monday, August 9. I would be almost 19 weeks and we were looking forward to finding out if it was a boy or girl. During that week in Hershey, I began to feel the baby move. That’s the time when I love being pregnant… feeling that little squirmy baby move around, there’s nothing like it.
We went to the sonogram Monday afternoon. The kids were with us and we piled into the tiny room to look at the tiny screen to look at the tiny baby. We were there for an hour and a half – tons of measurements, not much talking. We left there with the news that the baby probably had a cleft palate or lip and that they couldn’t tell the sex of the baby.
I was a bit nervous and in my worst moments I had quite a bit of anxiety about the possibility that the cleft was just a symptom of something bigger. I would do my best to shake it off and be positive that it was just a cleft and there was surgery for that. We made an appointment to see a perinatologist for a second ultrasound the following Monday.
My mother came up to stay with the kids that Monday and thank God for that. I met Matt at the hospital and with quite a bit of trepidation we found our way to the 2nd floor antenatal unit. I can’t explain why but we were both extremely nervous.
The ultrasound began. This time, no talking at all from the person running the ultrasound (ultrasonographer?). Unless we asked her questions. We did ask her to tell us the sex of the baby if she was able to tell. She focused in on the baby’s face and was about to go 3D when she asked us not to look at the screen because sometimes the 3D version is too much for some people. I had no idea what she was talking about and I looked anyway. I could tell she had a midline cleft lip. She looked beautiful. After about an hour of more measurements and no talking, she left the room. She came back in to tell us that she couldn’t find the left side of the heart and the cleft lip, cleft palate. “Oh, and by the way, it looks to be a girl.”  We were ushered out of the room and into the perinatologist’s office who confirmed what the other lady had told us. She called it Trisomy 13. I believe she also told us that 90 something percent of Trisomy 13 babies don’t make it to birth or die within minutes of birth. I think she told us that, though I’m not really sure I heard anything after Trisomy 13. She suggested an amnio. I told her we would be meeting with my OB in the morning and we would make that call after I talked with him. She was very kind and hugged us. We must have looked shell-shocked.
Later that evening, Matt and I went out to talk. One of the things we wanted to discuss was her name. I had been praying to St. Gianna Molla since finding out I was pregnant and had thought that if it was a girl we should call her Gianna. Matt liked the name too and agreed.
The next day we went to see Dr. B. from Tepeyac. There’s nobody better… truly and I am thankful to God for him. He was the unfortunate one to break all of the news to us. Not only did she have a cleft palate and lip and her heart was missing the left side, but also her kidneys didn’t work. He told us she was probably a sleepy baby because the ammonia builds up in her body from the non-working kidneys and makes her sleepy. The esophagus may or may not be connected, they weren’t sure. Also, the hemispheres in her brain, though there are 2, didn’t seem to be connected. She has extra digits on her hands and feet. Essentially, she has midline (meaning it runs down the middle of her body) multi-system failures. If it was just one, they could work on that one and she might have a chance. But with so many problems, her frail little body could never put up with the amount of work that would need to be done.
We came up with our plan – try to get me to 35 weeks and do a c-section (because I’ve always had c-sections). The doctor or a priest would then baptize her. Then the doctor would cut the cord and hand her to Matt and I so she could spend whatever time she has here with us. The problem is getting to 35 weeks, he told us it could be any time.
Dr. B. told me she was in no pain, she doesn’t realize she’s sick, she’s really just like every other baby right now. And she is. She’s moving, kicking, she finds my bladder every. single. time., she moves around quite a bit after some really good dessert like cheesecake and when Nicholas decides to throw a temper tantrum.
I realize this may be the only time I have with her. This has slowed me down, we’re not on hyper-speed right now. This baby is not just along for the ride. I’m along for the ride. And every moment that we have is precious.

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