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9/9/2016 Latest post:
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On Tuesday, September 6th, Emmett started refusing to nurse, which he's been doing pretty good with. By Thursday night, he was refusing to even take a bottle. Any little bits we could get him to take he would then throw back up. He spent the night snuggling with Mike and I and seemed pretty normal, except the refusal to eat.
Throughout the night and into Wednesdsy morning, we noticed him making this moaning sound with every breath he took. At first, we thought it was cute. He's been a pretty vocal baby so we figured that's all this was. As the morning wore on, I noticed he was breathing a little harder than normal. He didn't seem "right" but my first thought was he was starting to get a cold.
We went about our morning, me taking kids to the dentist and Mike, off to a job interview. I took him out of his car seat at the dentist and he seemed tired and fussy. His breathing wasn't getting any better so to be safe, I dropped Willow and Korbin off at home while Zoe, Wynter and myself headed to the pediatrician to get him checked out.
When we got there, I went to take him out of his car seat. He was limp and all his limbs were grey. He wasn't crying, wasn't hardly moving. The doctor rushed in, did a fast assessment and called 911. They got a pulse oxygen meter on him and his numbers were in the 60s. He wasn't reacting to anything they were doing and he had no pulses in his legs.
When the ambulance got there, they loaded him up pretty fast. I had to leave Wynter and Zoe sitting in the waiting room till my Mom could get there. I was afraid they'd freak out but they thought it was super cool that Emmett and I left in the "fire ambulance" with the sirens blaring.
We got down to the Minneapolis Children's Hospital and we were met by Mike, who beat the ambulance there, and a room full of doctors and nurses ready to get to work on him. That's when every Mother's nightmare came true. We watched them repeatedly try to intubate him until they finally got a line in. They poked him every where possible trying to get an IV started and get blood so they could start tests. There were so many people working on his tiny little body, we could hardly see what was going on.
Finally, he was stable enough to get up to the NICU. Once up here they did an echo of his heart and thought he had something called a disrupted arch. There's a hormone he was getting from me and that reserved in his blood that was keeping this flap open that was supplying blood to his lower limbs. Yesterday, that hormone ran out and the flap closed.
We found out today that his arch isn't actually disrupted, but rather he has a narrowing in his aorta. That flap being open was supplying that extra blood he needed to work around the narrowing. Once it closed, he went down hill fast.
Now, he is comfortably sedated and holding very stable. All the doctors and nurses are happy with how all of his numbers are holding steady.
He is scheduled to have surgery on Monday to essentially remove the narrowed area and bypass it all together. The procedure will take 2-3 hours.
The good news is out of all the heart problems to have, this is about the easiest one for them to fix and for him to manage. Long term, he may need some other surgery(s) on his aorta to fix a funky valve that could develop on the opposite side, but only time will tell. He'll need yearly echoes to check his heart function, he'll probably always have a heart murmur, and he won't be able to have his blood pressure taken on his left arm because of where the narrowing is causing those numbers to be inaccurate in that arm. He may need to be on blood pressure meds for the foreseeable future, but beyond the yearly check ups, a change in lifestyle won't really be necessary.
That's our story up to now. Sorry it's so long. Please keep Emmett in your thoughts and prayers for us. I am truly giving this one to God and trusting Him to heal our littlest dude.
Love to all, Michael, Corissa, and th rest of the Stevens clan