In June of 2010, Jim and I were so excited to learn that we were expecting again. I had miscarried a few months prior and we weren't expecting to be blessed with another pregnancy so soon after our loss. Madelyn's was due in February. I had a pretty normal pregnancy up until my 34 week appointment where I found out I was measuring 2 weeks ahead of my due date. My doctor scheduled an ultrasound for the next week to make sure everything was OK. He was worried I was going to have a big baby.
On January 12th, I had my ultrasound. Madelyn was measuring right on track, but my AFI (amniotic fluid index) was 53. A normal range is between 9 and 25. No wonder I had been so uncomfortable. The doctor didn't seem too concerned, but said he had to do some research and get back to me. The next day I received the phone call that I had been dreading. My doctor wanted to schedule a high resolution ultrasound for the next morning. I immediately freaked out since he made it seem so urgent. I knew deep down that something was wrong, but tried to convince myself that everything was ok.
On January 14th, we went for the high resolution ultrasound. The ultrasound technician spent about an hour looking at every little thing, but not saying a word. Finally the doctor came in to take a look. I finally had to ask him if something was wrong. His response "Oh yeah, there are a lot of things that look concerning." He thought that Madelyn's cerebellum (at the base of the brain) looked abnormal since the vermis looked short. He thought that she had a Dandy Walker Variant. He didn't explain anything. I had to go home and look it up on the Internet.
After many doctors appointments, we basically thought we may have a child with special needs, but there was no way of knowing until Madelyn was born.
I was induced the evening of January 31st (before the ice storm hit) and after a very easy labor delivered Madelyn at 6 am on Tuesday, February 1st. She was beautiful.
The NICU was already there and assessed her right away. Her APGAR scores were 7 and 9. The NICU doctor came over and told us that Madelyn's head was small and that she had some muscle tone problems. Her muscles were very tight. They scheduled an MRI for a few hours later that day.
We learned the next day that Madelyn's brain was severely underdeveloped. At some point, it stopped developing and was basically filled with fluid. Her brain stem was also very small.
While in the NICU, Madelyn could not breathe very well because she could not swallow her own secretions. They would build up and block her airway.
For a little over a day, she breathed on her own, but had to be suctioned very frequently. On Wednesday night, while Jim and I were by her side, she was not doing well at all and was placed on a ventilator. It was very difficult to watch my baby almost die in front of me, but thank God that they were able to stabilize her with the vent so that friends and family could have a chance to meet her.
Our family was able to hold Madelyn and get to know her. Her time here was much shorter than I would have planned, but eventually we had to make the decision to remove life support. The hour and a half that Jim and I had with her after she was taken off all of her monitors, etc were the best we had. Since she wasn't hooked up to anything and we were finally able to hold her and kiss her in a normal way. Both of us were incredibly calm which I know for a fact was God's gift to us. We were with her when she went to heaven. Now we know we have an angel watching over us, so in a way, we are lucky.
<<Meet our little Madelyn>>
