Our beautiful girl is missed everyday.

It hs been too many years since I last held my sweet girl. I miss her everyday. I still do my best to teach those around me about trisomy 18 and Maddy. I hope that someone will come across this blog and learn something. We have learned a lot as a family and grown by adding a new baby as well. Maddy hand picked her sweet brother to send to us. I see her in him so much I would do just about anything to have her here again but I do take some comfort in my beautiful girls and handsome little man.

Maddalyn's first birthday

Yesterday we celebrated Maddy's first birthday. We all released ballons up to our angel at the park by our house. It was a perfect moment watching them rise up further into the clear blue sky. The kids ran around and played and we all just enjoyed the sunshine. Later we came home and spent more time as a family with Maddys aunt and uncles and cousins. After everyone went home myself, Aaron, and the girls made cupcakes for Maddys birthday and sang Happy Birthday to our baby girl. It was a wonderful day. We love you so much babygirl. Happy Birthday!

Life now

It has been months since I have updated the blog. We as a family are trying our best to be happy and remember our little angel. Some days are hard. My four year old is in tears weekly because she misses her sister. She sleeps with one of Maddys blankets. I dont know how to help her heal. I miss her too. We all do. Mothers Day was yesterday and it wasn't the smae without my baby here with me. I loved all the gifts and pictures the girls gave me but it was hard at times to not break down. We have been working in Madddy's room to rehome the baby stuff and make room for her sister to move in. the older girls have been sharing a room since before Maddy was born because I thought it was important the baby have a room. Now theres no reason the room should sit unused when Maddy's sisters need the space. We have been so touched by our family and friends remembering Maddy. We know she impacted the world around her. She had such a great energy around her and everyone felt it! I miss you babygirl. have a good day in Heaven angelbear!

maddy celebrated her 9 birthday yesterday in the picu at ochsner hospital in new orleans. we came wednesday after finding no change with the bigger tube at the hospital we were at. she was air lifted and my husband and i made the 5 hour trip. I wrote this and never actually got done with it that day. Maddy did better at the new hospital for a couple of das. I was even able to put her 1st Thanksgiving shirt I made on her. That Sunday my husband and I made the trip back to Bossier City to see our other 2 girls and spend some time with them. It was so hard to leave Maddy that day but she was doing better on her vent pressure and they had even dropped the amount down by 5 on the amount of oxygen. We made it home around 10:30 that night and at 4:45 I received a call from the night nurse that Maddy was having lots of trouble keeping her oxygen stats up and we needed to get back. One hour outside of New Orleans we got the call our baby girl had went to be with Jesus. When we arrived we were ledto her room where she laid on the hospital baby bed dressed in a pink dress and swaddled in blankets we had brought from home with her favorite toy beside her and her little bible close to her head. They also had the praise cd we had brought playing. She had to tubes or iv's. She was just out little princess. We got to hold her and I rocked and sang our song to her one more time. Then we said goodbye to Maddy and came home to share the news with our other daughters.

one more thing to try

After everything we have gone through the last few weeks we are now at the last option to help Maddy be able to come down on the vent she's on. Her VSD is causing the blood to shunt in large amounts and she cannot maintain her O2 stats without a lot of help from the pressure on the higest vent setting. We are approching permanent damage. The doctors last idea is to put in a larger tube to allow the oxygen to go in better with lower pressure but they are concerned they won't be able to get it replaced in time and she may go into cardic arrest. She already did that today while we were meeting about her case. This may not even help anth d if that's the case we have no more options to help her. We can't even look at getting her heart fixed with the oxygen stats dropping like they are and they won't get better until her heart is fixed. We are asking they try the tube change tomorrow and putting it in Gods hands. Please continue to pray for Maddy.

my precious maddy is in the hospital right now. we came in for our mri and she started having trouble maintaining her o2 stats. we then found out she had pneumonia on her left side. antibiotics were started and she was put on a cpap machine to force air into her lungs. after 10 days her left lung was looking better but she continued to have problems with her oxygen stats. it was decided to do a scope so the doctors could see if she had an obstruction. before they could look around her stats dropped into dangerous levels and a breathing tube was placed. she was sedated for the scope and they have kept her sedated since. even with her being intabaited maddy was having trouble so a echo was done of her heart. that was when the problem was found. she had a rather large vsd that is causing blood from one side to mix with the other. a vsd is a hole in the lower part of the heart. the mixing of the oxygen rich blood with the non is causing her stats to be low and to bounce from high to low within seconds sometimes. she also has pneumonia in her right lung now. we have to get her well before we can move foward on trying to get her heart repaired so this doesnt happen anymore. im trying to hold on to my faith that god has a plan for maddy and remember that he can heal her.

I just posted some pictures of Maddy and the things that trisomy 18 has affected her in appearance. There are also things going on inside that are different than they would be if she wouldn't have been born with trisomy18. We had out first neurology appointment and while it was more of a meet and talk kind of appointment we learned some new information. The doctor ordered a MRI to be sure but he thinks that she has something called Dandy-Walker syndrome.  Dandy-Walker is a congenital brain malformation involving the cerebellum and the fluid filled spaces around it. A key feature of this syndrome is the partial or even complete absence of the part of the brain located between the two cerebellar hemispheres. This diagnosis explains alot of the problems Maddy has had with eating, talking, and blinking. From what I understand the nerves from the face, eyes, and neck aren't connected the way they should be. Its not great news but its information that we didn't have before that we now have. Now on to the good stuff. Maddy has been doing therapy for a few weeks now and she's already showing some improvement in areas! Today she picked her head up and held it up for a few seconds looking around at everything! She is becoming more vocal and has found how to get her fingers to her mouth to suck on too. The other night Aaron and I laid in bed listening to her babble and coo. We both had big smiles on our faces. We were told that we wouldn't have this time to get to love and know our baby girl, that she wouldn't make it this far. Well as I watch her swing in her swing ,falling to sleep as she goes back and forth, I thank God they were wrong!