I just realized that I never told the full story of my first-born baby girl, Madelyn Rose. It all started in December of 2005 when I found out I was pregnant, we were going to be parents! We were beyond excited as were all our family and friends. This baby was going to be the 1st grandchild on both sides of our family and both our mom's were so ready to be grandmoms (well a Nonna and a Mimi but you get the picture).
My pregnancy was uneventful and I enjoyed every minute of it. We had an ultrasound early on to help confirm the due date and then 2 more at 13 and 16 weeks pregnant. Everything looked great so there was no reason to have another ultrasound. On August 8th we had dinner with good friends and I wasn't feeling well. I was so uncomfortable and went home and took a nice warm bath. I went to bed that night and was excited when I slept for 1.5 hours straight (by this point I was getting up every hour). When I stood up to walk to the bathroom my water broke. It was so loud that Patrick heard it! We went to enough of the birthing classes (yes, we dropped out after the first 2) to know that if my water breaks we just head to the hospital. I was only 37 weeks and 1 day along so we weren't really prepared and ran around throwing stuff into a bag! We arrived around 3:00am and immediately went up to L&D and got hooked up to all the monitors. The baby looked good and the contractions were coming along.
They weren't really painful so by 8:00am we started an IV of pitocin which increased my pain so much that by about 11 or so I was ready for the epidural! After that was placed things didn't really progress any quicker and I think I ended up stalling at 7cm dilated. Around 4 or 5 they did an ultrasound to find out why I wasn't progressing and that's when they first told us there was swelling in our baby's head. I started to freak out but my OB said that it could just be because the baby couldn't fit out and had been pressing on the bone for too long. He said we could continue for a while but he was pretty sure I needed a c-section. So, we decided to just go ahead with the surgery and within an hour I was being prepped and taking into the OR.
As soon as I was told I needed a c-section I started to panic a bit. I just wanted everything to be ok with my baby and was starting to worry that something was wrong. The surgery began and it all seemed normal. I have watched enough labor and delivery shows on TV to sort of know what to expect. All of a sudden a haunting silence came over the entire OR and someone said that she was born but nothing else. There was no cry, no words. Patrick stood up to see her and he was pushed back down. I'm not sure exactly what happened after that. I know I was just crying out "she's not crying, why isn't she crying?". Crying out over and over again. Patrick told me that eventually he was brought over to where she was and was told that she was very deformed. He told them he didn't care, she was his daughter and he wanted to see her now.
He left the OR and followed her to the NICU while I was mercifully sedated for the remainder of the surgery. I woke up in recovery with Patrick in front of me, crying and telling me that our daughter was very sick. I asked to see her and they told me I had to wait, that I could see her after I calmed down and my blood pressure was better. Um, no...there would be no waiting for anything so they wheeled me down to the NICU and I was able to see my precious Madelyn Rose. She was on a ventilator and her face was very deformed. Her eyes were protruding out of the sockets, she had swelling in her cheeks and the top of her head was very elongated but she was MINE. My beautiful, first-born, much loved, very desired baby girl. Born Aug 9, 2006 at 6:11pm: 7lbs, 13oz.
I'm not sure the exact order but, at some point they said they wanted to take her for a CAT scan of her brain. Before they took her away Patrick baptized her (he's a pastor) and prayed over her. They took her down for the test and we went to a room to wait. While we waited a few doctors came in including a geneticist to tell us their suspicions about her condition. He was fairly certain that Maddie had a very rare condition called Pfeiffers Syndrome Type II. He said that it happened when she was conceived and it was just a random thing, nothing I did or didn't do caused it. He also said that words that I pray I never have to hear again, her condition was "not compatible with life". Those words are the most haunting words a mother could ever hear about her child's condition.
After she came back from her CAT scan we were told that it showed very little brain tissue and her prognosis was grave. We decided to remove her breathing tube and just enjoy any time we could with her. She actually cried a little when the tube came out and that was the BEST sound I have ever heard. We took her back to our room about 9pm and just took in our baby girl. A photographer from Now I Lay Me Down to Sleep came a little before midnight and gave us the most amazing gift, pictures of our new family of 3.
There were many times during the night that Maddie would quit breathing and I would put my hand on her chest and rub her and call out her name. The nurses kept telling me to get some sleep but I didn't want to miss a minute of time with her still with us.
She survived the night and saw the sun come up on a new day. At some point during the night I actually started to think that maybe she would survive (remember I had been up for over 30 hours by this point so I was a bit delirious) and we would get to take her home. After shift change, my new nurse wanted me to take a sponge bath and had a NICU nurse come in to hold Maddie while I did so. It was during this time that Maddie stopped breathing for the last time. The nurse brought her over and said that she had taken her last breath about 10 seconds earlier and her heart was still beating. I took her and held her tightly. We got Patrick and he and I just held her and each other until she was gone. It was very peaceful.
I have so much guilt that I wasn't holding her when she took her last breath, even now 4 years later. I held her all night long and the 10 minutes I wasn't is when it happened. It still hurts so bad that I wasn't the one holding her at that moment. As I type these words I just can't believe how torn apart I still feel. I really hope that I can eventually move past it and forgive myself.
After that things really get blurry. They took her away to be cleaned up, get foot/hand prints as well as have blood and photos taken to document her condition in case the suspected diagnosis was proven wrong and they would need to figure something else out. After all that was done we were able to see her again.
I was in the hospital for 3 days and came home without my little girl. The funeral director actually came when we were ready to be discharged and he walked out with her one way while we walked out the other. On one hand it made me feel better that we were leaving at the same time but, on the other hand it completely stunk that she wasn't leaving the hospital with us.
The next few days were filled with lots of phone calls and lots of family flying into town, making arrangements for her memorial service and cremation and a lot of tears. The pastor from my home church in PA flew all the way out here for her service and he was a great source of comfort for me. Her memorial service was beautiful but it wasn't what I wanted. I wanted her, here, with me.
I had a lot of anger and was very bitter for a long time, I was supposed to have my baby with me, I was supposed to be a mother, she was supposed to LIVE. I had a perfect pregnancy, we were going to be great parents, what did I do wrong to deserve this? These were all the thoughts that ran through my head on a daily (sometimes hourly) basis. I have reconciled most of them at this point and although I wish she was here and miss her so much, I am in a much better place and finally able to talk about it without completely breaking down.
If you are still with me then thank you for listening to her story. I know I am missing many details but I hope I have remembered the important ones. I know I am not the best writer but I hope that I have honored her memory with my telling of her story.