Today we made the first step in getting Maddy therapy to help her with some of the things she has been having trouble with. Hopefully within a month we will start the actual therapy! My hope is that we can help her learn to take her bottle and work on her head and neck control. Maybe soon she will even be turning over and being more mobile too! We are also looking at different nursing options for her. It may mean changing services to another company or even looking at some extended nursing hours to help me out more. I will update when I know more.

And on the the more important thing Maddy will be 6 months old on Friday!!!! My baby girl is doing so good and is such a fighter! She is gonna show everyone that she was ment to be here and have a full life!

My daughter has trisomy 18. It is a genetic condition where she has three of the 18th chromosome where she should only have two. In most cases (like Maddy) there is nothing you can do to cause or prevent trisomy18. Trisomy 18 affects alot of the body in different ways. Most children with this have major heart problems and feeding issues. Maddy was no different. They also have apnea issues where they stop or have trouble breathing. It can effect how they grow and develop but there are lots of happy little ones (and some older too) out there showing that with medical care these kids can survive and be huge parts of their families and communities. We love Maddy and she loves us! I would love to answer any questions I can for you and offer support if you have or are expecting a baby with trisomy 18.

Maddalyn's story so far.....

Our daughter Maddalyn Elise was born February 24, 2012. On that morning my husband and I went in to have what we thought would be a healthy but small baby girl. I was having a C-section because my head- strong little one would not turn around to get into position. Once she was born there were noticeable markers for trisomy 18 that the nurse noticed almost instantly. Throughout my pregnancy I had multiple ultrasounds to monitor our baby girls growth. She was doing great- just not growing. At 37 weeks the doctors decided to get her out before something bad happened to her since they didn‘t know why she wasn‘t growing. I had a amino done to make sure her little lungs were ready and she passed her first test. The hospital we delivered at didn’t even have a NICU as my doctor or the specialist didn’t see anything to cause worry with Maddayln while she was inside me. Both my daughter and then later I were transferred to a close sister hospital with a great NICU within a few hours. We sat, waited, and prayed for our little one. The NICU doctor called the room to let us know she had results and was coming to see us. She sat down beside my husband on the little hospital couch and turned our worlds upside down. “Your daughter has something called Trisomy18.” She went on to explain that Maddys chances were very small for survival and there wasn’t a lot that could be done to help her. She brought us three printed sheets from the internet about trisomy 18 and recommended finding support online. She also set it up so that my daughter who I hadn’t got to hold yet would be brought to my room so we could bond with her incase she didn’t make it long. She was on oxygen in the very beginning but by this point they had taken her off because she didn’t need it! I got to hold my baby for the first time at 11pm that night. After she was taken back to NICU my husband and I started to research. We found great information online about living children with t18 but the doctors only said her chances were small she would be one of those children. As soon as I could I was in the NICU visiting her every chance I could. They would have to make me leave. I would come back to my room to find a cold dinner tray every time! We brought my older two girls (7 and 3) to meet their sister. NICU let Maddy come to our room to visit a few times since the girls weren’t able to go back. My husband explained to the girls that their sister was sick and may go to be a angel. The hospital sent a woman who helped us understand how to talk to the older girls and help to make memories with our baby. She took lots of pictures of us with Maddy and even let the girls draw on special dolls that their sister could have in her bed when she went back to NICU. After a extremely bad night the doctors asked us to sign a DNR for Maddy. She had stopped breathing a few times and was have several heart decelerations. We signed with tears in our eyes. They told us she could go home with us then. Oxygen to give her blow bys was ordered and they also got us a heart/breath monitor for our comfort. Maddy also had a NG tube for feeding because the doctors thought it would be to hard on her to try and feed. We stayed one more night in a bonding room where Maddy got to stay with us. It was the first time I had gotten to take care of my baby and it was the best feeling. She had one more heart decel the day we left the hospital but once we got home we never had one! Life started to become a new normal. We came home with hospice but soon graduated because Maddy was doing so well. Maddy has continued to grow a little at a time and progress on her own schedule. The VSD she was born with has almost fully resolved- the dr even released us from his card! At 5 months it was decided that she should have a peg tube put in for feedings since her bottle habits weren’t getting any better. She did great through the surgery only staying 5 days because of some extra air in her stomach. As of today Maddy is almost 6 months and doing great! She loves her big sisters and adores her Daddy. She recognizes her mommy’s voice and will turn to see me when I talk to her every time. The doctors said we probably wouldn’t have long with her but at this time theres no reason the think that at all. Of course I try to stay aware of everything about her and its exhausting but worth it every time she smiles at me or I see those big blue eyes!