Friday, December 7, 2012

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.

Monday, November 19, 2012

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.

Thursday, November 15, 2012

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.

Tuesday, October 23, 2012

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!
 
 
What Trisomy 18 looks like for Maddy
 Overlapping fingers

Rocker Bottom Feet

Small Chin

 Enlarged back of the head

 Feeding tube in her stomach

Slow growth- At 8 months she weights 8.9lbs and is 22in long.

Tuesday, September 18, 2012

It makes me so mad and breaks my heart

I wanted to shared something that my family has been hearing for the last few days alot. I am so mad at the world for the way kids with trisomy 18 and 13 are treated. These are great kids that laugh, and play, and know their families but alot of doctors and the medical world dont give them the value they deserve. I can't believe with all we have achieved medically that they cant and wont be given a chance. A life saving surgery wouldn't be considered for a child given the diagnosis of trisomy- how wrong is that. I feel that God wants them to be here or they wouldn't exist so why not do everything possible to help them. I have heard too many storied since Maddy was born in February about parents fighting for their kids to have procedures done that a non-trisomy kid would get no questions asked. Its not fair. When my husband and I started researching trisomy 18 to find out what we were facing we concentrated on the good stories of living children. They were few to be found-but even so there were some out there. I have found many more since then. I can only imagine that if pregnant women weren't persuaded to abort when trisomy was confirmed or the babies actually had easy access to life saving procedures how many happy stories we could have found. If you are reading this I appreciate you visiting my blog and ask that you share what you may have learned here and maybe do a little internet research on trisomy. Help raise awareness about what is happening to these families with beautiful children!

Oh and I would like to add that since we came home from the NICU Maddy has gotten great care at the hands of her doctors and has not been denied anything that may help her! We have been blessed by the people that have come into our lives in the last 6 months to help our baby girl!

here are some great places to start learning about trisomy 18-
www.trisomy18.org/
www.en.wikipedia.org/wiki/Trisomy
 and there are a few great facebook groups that are full of parents of trisomy kids

Thursday, September 6, 2012

Maddy is 6 months old and doing so well. She has made it all the way to 7.10lbs! We are so proud of our little fighter. She is showing everyone she meets how strong she is. We have a new nurse now to come and make sure Maddy is doing what she is suppose to be doing and will be starting thearpy very soon now! Im excited to see her grow and learn. We've been seeing more of her beautiful smile around here- even big sisters Makayla and Morgan have gotten a few! We are truly blessed and I thank God everyday for this little angel in my life.

Wednesday, August 22, 2012

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!

Wednesday, August 15, 2012

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!