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♥️ Miss Maddie ♥️

To our friends and family: 
Many of you have been messaging/texting asking how you can help besides prayers and thoughts, so I figured I would make this page and share our journey. 

Many know that Miss Maddie is truly a blessing, even know the odds were stacked against her from the beginning.  We found out early on in my pregnancy that she had some health issues.  A simple ultrasound found one abnormality that prompted all our visits to the High Risk Perinatal Center. After many tests and appointments, they found that Maddie had several challenges. Two of the main issues being with her brain and heart. She was given the condition called Dandy Walker Variance. Which meant that fluid was built up in her 4th ventricle the cerebellum, which caused two of her ventricles to become enlarged and spread apart causing the fluid to build up instead of going down the spinal cord as a normal. 
They found in her heart that one side was bigger than the other, which can be okay and nothing to worry about. But her valve was narrow and they were scared of it collapsing upon birth when it had to have strain put on it; upon several other factors which made the heart a worry. 
Later in pregnancy I was dignosed with Polyhydramnios. Which meant that I had extra fluid. Normal is 8-15, 25 is considered high and I was measuring at 38-42 for fluids. This prompted more tests, as there was a reason the fluid was so high, whether it was from Maddie not swallowing properly or her brain/heart issue they didn’t know. 

I was admitted to the hospital after being super sick for a week. Once i was released from the hospital I had a PICC line in place because I had to do intensive infusions everyday, which meant that I couldn’t go back to work, which definitely put a damper on the finances. I was expecting to work right up until the day I popped. Because let’s face it, you have to. 
The big day, or should I say night! I was just going to bed after having Ali, jinx it and say that she wished Maddie was here already. Maddie was super active, to the point I had just started googling super active baby at 36 weeks.  Before I could even click on an article my water broke. My water had never broke with my other babies so I was a little startled!  I got all ready, showered, learned that your water keeps coming out, so don’t put socks or pants you like on, and that more than one towel for the vehicles seat is probably a good idea. 
After 4 hours, lots of pain, and worries. The final pushing came. Maddie wasn’t liking contractions so I was forced to pushing for 30 minutes while she recooped.  And let me tell you, not pushing when you are having contractions is impossible!  Finally I could start pushing again, we got to the point where it was screaming, Maddie having her heart rate drop to ten and the doctor yelling at me telling me to push as hard as I could and she was going to suction Maddie out. So I did.  And Miss Maddie was  born ♥️

The specialist teams that were there for her delivery checked her out and ran all their little tests while I watched from across the room waiting to hold my baby girl. I finally got to. But then she started breathing funny and her heart rate and oxygen levels dropped and she was taken to the NICU.  There they found that only one nasal passage had formed and the other was very narrow. She would need surgery to cut away the membranes to make a passage. 

Within the first 12 hours of Maddie’s life she had her echocardiogram, brain scan, tests, a camera put down her nose/throat, etc;  But she did it like a champ. 
Her tests confirmed the issues in the brain. And found new ones in her heart, as she was a little early and it didn’t have time close properly.  

Update as of February 25:

Maddie has been a very busy girl! She’s had lots of testing done and plans are starting to be set for her journey.
It was determined that Maddie has CHARGE Syndrome, and that ties all of her problems together. CHARGE is an extremely complex syndrome, involving extensive medical and physical difficulties that differ from child to child. Babies with CHARGE syndrome are often born with life-threatening birth defects. That would explain her brain, heart, immune system, hearing, vision, breathing, etc; issues. It all ties back to the CHARGE syndrome, which resulted from just one coil in her DNA complex not unwinding like it should, sort of say. Something so minute, that causes so many issues.
Some of the testing was also done on her brave big sister Ali, to see if she was a bone marrow match. Unfortunately, she wasn’t. But it turned out to be okay due to Maddie’s rare “flavor” of SCIDS. I’m Maddie’s case she needs a thymus transplant. After many different tests it was determined that Maddie not only had no T cells, she had no thymus. So that meant even if she was given a bone marrow transplant it wouldn’t have helped in the long run, only temporarily. Maddie is now on the transplant list and the FDA has approved her surgery at Duke University.
Maddie also had surgery today to fix a few of the minor problems and exam some of the others. She had a GI feeding tube put in due to breathing complications and not being able to swallow properly, making it impossible to feed naturally. The oral feeding tube was working, but it was causing her already restricted and smaller than normal airway to become swollen and started posing more problems than it was helping.
She also had tubes put in her ears due to fluid build up. Some other issues were found in the ear but nothing that can be fixed right now.
Her nasal passages were also looked at and the one side that is closed will need to be fixed down the road when she has an immune system to help her bounce back.
Due to reflux issues Maddie had some muscle wrapped around the top of her stomach to hopefully help reduce the acid that was also causing issues to her airway.
All in all, Maddie came out wonderfully and did such a great job. She is sore and very hoarse right now but in the end it will all be worth it. She will make it through every surgery and procedure she needs because she’s a strong little fighter ♥️♥️♥️




She has a lot to face and will have a tough road, but she is a fighter and can do it. She’ll be in the NICU for a while they say. But she’ll be in the best hands in the nation at the UW children’s hospital. 
Thats where I’m asking for help. With her being in the NICU, it will be a lot of trips, stays, everything and honestly, I had no way of planning this finically.    I know money is always tight after the holidays, and I wouldn’t be asking, except I want to make sure that I can be with my baby girl as much as I can be.   
If you’re not able to help finically, prayers and thoughts are still amazing. As I know God is taking care of Maddie, but there can never be too many prayers sent up.  

Thank you guys ❤️❤️
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  • Anonymous
    • $150 
    • 5 yrs
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Tiffany Masseur
Organizer
Albany, WI

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