Life after NICU and losing my baby girl

About Me

Ok, so most people reading this blog will know who I am. But for those who don’t, here’s a little on me. I’m a 26 year old stay at home mom/very part time cashier at my Hubby’s grocery store. We were married July 21, 2007, got pregnant in April 2008, miscarried 3 days after the positive test. After picking ourselves up and getting “back in the saddle”, we got pregnant again in March 2009. Happy, healthy, uneventful pregnancy resulting in our amazing son, Anthony. He’s named after my husband’s best friend from high school who went over, fought as a proud marine and died in Iraq (RIP Ant). I never got to meet the guy, which I feel is a huge loss to me. We decided to continue growing our family and found out we were pregnant again a week before Anthony’s first birthday, November 2010. That’s about when things started going haywire.

At 16 weeks, we were told we were at risk for having a Down Syndrome baby. We did a level 2 ultrasound at 20 weeks and found that the baby had a serious heart defect that would need open heart surgery before its first birthday. Through monthly ultrasounds and regularly scheduled appointments with our regular OB (perinatologist one week, 2 weeks later we went to see the regular OB), we made a plan for delivery and the surgery that would be needed.

The early morning of July 13, 2011, we found ourselves in the hospital, giving birth to a livewire little girl just 2 1/2 hours after being admitted to the hospital. Bailey Diane. Bailey was a name we both loved and both wanted to call her the moment she was born (we refused to find out boy or girl before birth and so didn’t have a name picked out for sure) without even telling each other. Diane is my mother’s middle name, following a special naming tradition on my mom’s side. Sadly, Bailey was born quite blue and with a big oxygen issue. After a very short 5 minutes in my arms, she was taken to the NICU. Little did we know, this is where things were going to really blow up. She was first put on a CPAP machine to try and get her oxygen back up. That didn’t work. She was then put on a ventilator, a chest tube was put in, and still no sustainable progress. I was medically released from the hospital to follow her down to the U of M Amplatz to be put on a Heart and Lung Bypass machine (ECMO). All of this came about less than 12 hours after birth.

After 2 weeks of trying everything they could think of, they decided to get more aggressive and did a lung biopsy. Longest weekend ever, we got the results on Monday, August 1, 2011. Alveolar Capillary Dysplasia (ACD). A devestating, congenital lung defect with no known cause. No treatment. No cure. We let our little princess fly up to dance with the angels on Tuesday, August 2, 2011 at 12:58pm. 20 precious, perfect days with our little girl have resulted in a life that is straight out of a parent’s worst nightmare.

We (along with a phenom group of ACD parents) now are devoting all we can to helping educate the rest of the world about this rare lung defect that has been named Cause of Death in less than 300 baby deaths. No child has lived to see their first birthday, with a bulk of the children lost before they are 3 months old. We also have become advocates for people to take part in prenatal testing. Had we not gone through that quad screen at 16 weeks, we would have only had one day with our little girl.

More information can be found on www.acd-association.com


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