Our Sweet "Heart": Tuckered Out

Wednesday, May 5, 2010

Tuckered Out

Playing is such hard work!!

Such a goof!

Maddox is trying to get used to his new encumberance. We are working up to wearing the helmet 23 hours a day. He has been soaking his shirts with sweat. Perfect timing -summer in Texas. He is a trooper and so good natured about all the crap we put him through.
He's still on oxygen, but just a whiff. I'm sure we could let him be off of it more than we do, but we have a hard time getting a good read with the monitor and so are erring on the side of caution. I got sick around the same time Maddox did, about a month ago, and we are both still coughing. It is getting better though. Whatever the virus was, was a doosey!!

I'll try to post about our special weekend with family soon.

4 comments:

Latter-day GuyMay 6, 2010 at 4:28 PM
Worse than headgear... maybe he'll have that too, but it's too soon to worry him about orthodontics!

Glad he's feeling better. Hope you are too!
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AshlieMay 7, 2010 at 7:22 AM
Poor little guy, that looks so uncomfortable! Hopefully he gets used to it soon!
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Jake and RachelleMay 13, 2010 at 9:51 AM
Hope he's feeling better. What a trooper he is! Love you guys.
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colbyanddeniseoveryMay 13, 2010 at 10:46 PM
My sister's twins are probably going to be getting helmets soon. I've always thought babies look so cute in them. Kelsey almost had to get one. We took her to Primary Childrens for a fitting but she didn't end up needing it. I hope Maddox gets use to his soon.
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Maddox Revere Dixon

Welcome to our story of modern day miracles. We have seen first hand the wonders of our Heavenly Father and have been joined with people all over in earnest prayer for a baby boy... our Miracle Maddox.

Maddox was diagnosed prenatally with Aortic Stenosis and Mitral Regurgitation. We found out at 27 weeks gestational age that he had a congenital heart defect. By 29 weeks he was in heart failure and had developed hydrops(fluid under the skin, in his abdomen, and around his heart). The plan was to deliver him at 30 weeks via c-section and after birth attempt to get him stable enough to try to open up his aortic valve. We were also given the option of doing nothing and delivering vaginally once he had passed away, which they thought would be soon. The doctors gave him a less than 1% chance of survival if we tried to intervene. We started planning his funeral. The week we were scheduled to have the c-section we were given the option of flying out to Boston to do a fetal intervention where they would essentially operate on Maddox in the womb. The doctors in Boston weren't even sure that Maddox would be alive once we got off the plane. Two days later we had the fetal intervention where they ballooned open the aortic valve, put a stent in the atrial septum as well as a hole above the stent, and removed some of the fluid in Maddox's belly. Maddox was the 9th baby with his unique heart condition to have undergone this type of intervention. It was successful, and Maddox was delivered at 37 weeks in Boston, where he underwent open heart surgery at 3 weeks of age. At two months of age Maddox came home to Texas. We are now trying to adjust to the new normal: multiple weekly doctors' visits, g-tube feeds, medications administered throughout the day, insurance claims, and including our three other children in the care of their amazing little brother. What an adventure. More surgery is in the Mad-man's future, but he has a future, and for that we will be forever grateful.