Today you celebrated by sleeping the whole day and attempting to suck on a binky! We'll see if we can make your two month birthday a little bit more exciting.
This week has been full of weaning from medications and then increasing them again, adjusting vent settings back and forth, increasing calories, gaining and losing weight, and finding out that Mad's mitral valve repair didn't hold like we were hoping. They did an echo the other day and found that his mitral valve had moderate regurgitation, as opposed to the mild leakage that he had when he left the operating room. Pretty discouraging. We aren't sure yet what this means for Maddox's immediate future. If he is able to be extubated(take out the breathing tube) and handle it and is able to gain weight and grow then we'll just watch and keep an eye on that mitral valve. If he can't get off the ventilator and grow and gain weight, then it will be back to the OR to attempt to repair the valve again. There aren't any other options for fixing his valve right now, other than what they already tried, because Maddox is so small. The kid only weighs 5 lbs at one month of age. He isn't even up to birth weight yet. So, with this new information we are trying hard not to be discouraged. I feel like we are at a standstill, and that is frustrating. As Jeff says, now we have to adjust to the new normal. It takes a day or two sometimes to come to terms with the new situation, but, like everything, we get used to it.
We are fasting for Maddox and this specific problem tomorrow and will be asking our Heavenly Father to help the mitral valve to leak less. If he only has mild regurgitation there will be less fluid backed up in Maddox's lungs, which should enable him to breathe on his own without burning up all his calories so that he can grow and eventually leave the hospital and come home. It's a whole month until Christmas, and a lot can happen in a month, so I still haven't given up on the "being home for Christmas" goal. We are continually learning that the Lord is in charge and that with Him all things are possible. We are learning how to increase our faith and trust that there are blessings in store.
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Wow, that one month went by so fast! I cannot believe he is that old already. I am sorry you received discouraging news, but keep your faith up. He will come home and be healthy eventually! We will be fasting with you tomorrow for little Maddox and hoping and praying that all goes well. Remember who is in charge! He will help.
ReplyDeleteI can't believe he is already one month. He has been such a trooper. We hope and pray that things go better for him and you guys can come home soon. It will happen. You will make it home sometime. Love you all.
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