Of course he tasted it through a tube in his nose, so I'm not sure it counts, but at least the calories count!!!
Overall it was a good day for Maddox. They did an echo this morning and his ductus is closed and his heart is handling it just fine. His mitral regurgitation looks a smidge less severe, his aortic valve is still leaky, but his ventricles are squeezing well and overall the doctors were pleased with where he is for now. They took him off of the paralytic and a drug called fentenyl, which is a narcotic, and they put him on morphine and versed which have kept him pretty loopy today, but at least not paralized. He is working on breathing, and taking more and more breaths on his own, but still needs the ventilator to keep himself going. He was transfused again today, which I have been told will happen a few times a week. Not 100% sure why, but I think it has something to do with his size, and having blood drawn for labs many times a day among other things. His coloring looks good and his stomach is noticably smaller due to the drain. They aren't just letting him drain constantly, but they take a certain amount off every four hours. Hopefully at some point he'll be able to keep the fluid off on his own.
Jeff flew home today and Maddox and I are sad. I told Maddox that he has to behave from now on so I don't have to relay bad news, or events of hard days to his dad over the phone. Jeff hates that.
Hopefully we'll all be together again soon. We are still praying to be home by Christmas with Maddox in tow. One week down and we are making progress.
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I already miss you two! And that's right. No bad news over the phone! Love ya.
ReplyDeleteMilk in the tummy such a Big step in the right direction. Go Maddox!!!
ReplyDeleteWhat a big milestone for him to get breast milk now! You are still in our prayers. Hope you keep the good news coming!
ReplyDeleteThat is great. Good news Maddox.
ReplyDeleteHe is beautiful Alissa. Simply beautiful. And you are strong. I wish I could just drive to Boston right now and sit with you.
ReplyDeleteYou two are in my thoughts and prayers constantly. I can't hardly pray for my little Judah without praying for Maddox too.
ReplyDeleteI'm sad for you that your hubby is gone now but it sounds like Maddox is going to help keep you busy. :)
You are doing a fantastic job, Mama. He is simply beautiful and so are you!
Looking forward to meeting you.
There's a song I've been listening to in preparation for our fetal intervention. It's by Watermark called "Mended":
You repair all that we have torn apart and
You unveil a new beginning in our hearts and
We stand grateful for all that has been left behind and
All that goes before us
Chorus:
You've got all things suspended
All things connected
Nothing was forgotten
'Cause your love is perfect
You are our healer
And you know what's broken
And we're not a mystery to you
(to you, oh Lord, to you)
We will dance 'cause you restore the wasted years and
You will sing over all our coming fears and
We'll stand grateful for all that has been left behind and all that goes before us
-Chorus-
Bridge:
Lord, you mend the breech
And you break every fetter
You give us your best, but what we thought was better
And you are to be praised
You are to be praised (4x)
-Chorus-
(to you, oh Lord, mender of the broken)
We are praying for both of you to be home for Christmas too! I'm glad Maddox is finally getting the good stuff!
ReplyDeletewhat a handsome boy! so happy he's finally getting breastmilk-go maddox! praying that he'll continually get healthier and that you'll have comfort. Hang in there! :)
ReplyDelete