Our Sweet "Heart": Quick update

Thursday, November 5, 2009

Quick update

So we just switched rooms and have a different phone number from the one I posted.

New number: 617-355-9817

Also Maddox is going to be having surgery next week. We don't have a definite date yet, but the doctors feel that he has gone as far as he can go without surgical help. While this is what we were expecting at some point, we were hoping to miraculously get by without it, or at least have more time for Maddox to put on a few pounds. Apparently this is what Heavenly Father will use to give Maddox
the "healthy, normal life" he was promised in his blessings. The surgery will be long, intense, and not completely
straightforward due to the fact that both the mitral and aortic valves need serious help and that there are several options to choose from. One of which requires using Maddox's own pulmonary valve as a replacement for the aortic valve. I'll post more when we have a date and know more of what, when and how things are suppsed to go.

Today they switched out Maddox's breathing tube because there was a serious leak which was preventing good ventilation.

The new tube they put through Maddox's nose, which honestly surprised me. The tube doesn't look like it should fit. It is enormous compared to his little nostril.
Hopefully now he won't be gagging quite as often.
My poor baby !!

- Posted using BlogPress from my iPhone

5 comments:

HeatherNovember 5, 2009 at 9:20 PM
I pray for him every day. Say hello to Jennifer Mckinney and Stellan tomorrow. He is having surgery next week. Maddox's eye lids look so sad. I know you can't wait to hold him and snuggle him close.
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chrisnbriNovember 6, 2009 at 8:26 AM
Alissa, You are amazing!We are praying for little maddox and your family daily!
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Erin SNovember 6, 2009 at 11:14 AM
We will be praying that his surgery goes well and you can get him home so he can meet his brothers and sister and get snuggled lots and lots! He's just so precious, we love you guys!
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AllisonNovember 6, 2009 at 7:34 PM
Wow. That is one huge ET tube through his nose! I have never seen a baby intubated that way, but hopefully it helps the air leak and lets him gag less! Will he take a pacifier now that the tube is out of his mouth? Good luck as they determine what to do in surgery... that sounds very complicated indeed!
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cheeriBABYNovember 6, 2009 at 11:35 PM
We are keeping you and your sweet baby Maddox in our prayers. Your faith and strength are absolutely amazing!
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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.