Mickey Mouse is a key member of our family. You might recall that Mark purchased a super-sized Mickey for the boys while I was out of town earlier this fall.
Notice anything about this picture? We cannot figure out who is obsessed with "pantsing" Mickey, but we find him like this frequently (in an effort to show respect for Mickey's modesty, I am intentionally showing you his back side).
If you're viewing this in your email, you'll need to click through to the blog to see the video below.
We got a Wii for Christmas. Micah used to wake up in the morning and ask for Mickey Mouse. This week he's asking for "Wii" or "Dancing Dora" (meaning, he wants to dance to the Nickelodeon Dance Wii game). Micah doesn't hold the remote, but he loves to dance and he has song preferences, LOL. If you double-click on the video below, it will open it in YouTube and you can see more of Micah. My blog screen isn't wide enough to show the whole video here and I don't know how to fix that.
We had a very brief visit with Leah and family at the ophthalmologist today. It was great meeting Asher (the newest addition to their family who came home from Serbia recently) and Angela (who skipped the Step Up walk last fall so I didn't meet her there, but Leah was at the walk with Axel).
Eye summary: Micah will be getting surgery on both eyes to repair his strabismus (eye crossing). It's a fairly simple surgery that takes about an hour. This will not require an overnight, thank goodness. Micah has been hanging out on the border of whether or not this surgery would be necessary for three years now. But today's visit confirmed that it is time. When his eyes cross, they don't automatically straighten quickly anymore (they used to correct quickly). If I understood the ophthalmologist correctly, he will go in and basically detach the inside muscle from the eye, adjust the eye straight, then reattach the muscle (gives me the heebie jeebies).
I should get a call tomorrow letting me know when they were able to schedule his surgery (in conjunction with a dentist cleaning his teeth).
For those of you outside the "feeding challenged" community, you'll recognize this as a container for honey. But put a straw in it and you have an oral motor feeding tool called the honey bear cup.
Micah recently figured out how to suck from the straw in the honey bear. And this morning, he drank ALL of his morning nutrition from this. Six ounces of Boost Kid Essentials (1.5cal). Through a straw. NOTHING through his feeding tube for breakfast.
He didn't have as much for lunch, but wow. There's hope to get rid of this tube this year.
Micah had a BLAST at the family event. It was a large gym, filled with people and toys, and he walked in, said, "Ball!" and strutted around like he owned the joint. More on GiGi's Playhouse Twin Cities soon.
Seriously. Nathan came home from school wearing a right gym shoe and a right Croc. Yesterday he came home in both gym shoes. I told him this morning to wear his gym shoes back to school and come home wearing his Crocs (which are soft-lined loafers, not regular Crocs, for those of you who worry about my child's feet being too cold here in MN). Apparently he couldn't find the left shoe, so he followed instructions to the best of his ability, LOL. Hoping he can find the other shoe tomorrow...
2:32pm, Saturday, January 5, 2008 - Our sweet Micah was born.
That morning started like most of my mornings for the previous month: bed rest with contractions anyway. Mark had gone out on some errands (my mom was at our house helping me and Nathan). Contractions weren't decreasing following my procardia dose, so I called the OB to ask about increasing my dosage. Nope. Not over the phone. Come on in to Labor & Delivery (L&D). So I called Mark and he came home. I was drying my hair and he was trying to rush me out of the house (basically like, come on, let's get this over with, because I had a couple of admissions to L&D during this pregnancy so he knew that we would get sucked into the L&D vortex for most of the day).
What I didn't realize until we arrived at the hospital is that they don't stop labor once you get past the 34-week mark. They declared me officially "in labor" and were getting things rolling to send me to Milwaukee via ambulance so that I could deliver him at Children's and be at the same hospital.
[Background: Micah had duodenal atresia, so he would need to go to Milwaukee for surgery.]
The EMT's who would be taking me to Milwaukee came into my room, asked me some questions, and went outside my room to fill out the final paperwork. The on-call OB came in to check me one last time before transport and she declared, "You've gone from 2cm to 5cm in 1/2 hour. You're not going anywhere. We have to deliver Micah here." My heart went into my stomach. I'm crying about it just typing it here. I knew that meant I would be separated from my baby.
Spinal was administered and Micah (5lb, 6oz, 18in... a big boy for a kid with Down syndrome at 34weeks, 5days) was pulled out at 2:32pm. The NICU team was there, but after they cleaned him off and puffed him with some oxygen, they did let me see him before taking him away.
I did not get to hold him that day. Or the next. Or the next. Mark went to Milwaukee and I stayed in the hospital. They did wheel Micah into my room before sending him to Milwaukee, but he was already "packed for transport" so I couldn't take him out of his little box. This is as close as I got to him (note the clock on the wall in the upper left):
That photo was of me seeing his little hand for the first time. Oh, how sad I was... he was diagnosed with amniotic banding syndrome on his left hand. His fingers stop before the first joint. "Just one more thing for kids to use for mocking him," I thought. No one had told me before then. It was a surprise at birth. With all of the ultrasounds I had during this pregnancy, everyone always talked about how cute it was that he was always making a fist ("My little fighter!").
We knew Micah had duodenal atresia. We knew he had a complete AV Canal heart defect. We knew he had Down syndrome. We were "ready" for those things (aka, we had already spent time grieving that stuff). But not being able to hold my baby and finding out he had ANOTHER birth defect... so hard.
Off he went to Milwaukee, but not in the intended helicopter. There was too much fog in Wisconsin that evening, so they put him on an ambulance instead. Knowing that it would be hectic getting Micah settled into the NICU at Children's that night, and that Mark didn't have a "go bag" prepared, we opted for Mark to sleep at home that night, come by the hospital in the morning in hopes of us deciding on a name for our baby boy, and then hit the road for Milwaukee. Micah was on the surgery schedule for Sunday afternoon (though he was eventually bumped due to a critical cardiac case... always better to be the "bumpee" than the "bumper"). This was my first blog post after his birth (I didn't post until Tuesday... other friends had guest blogged about his birth).
I need to go back to the operating room for a few minutes. After Micah was born, the OB's (there were two in the OR for the c-section) were asking Mark and I some questions about our intentions to have more children. We told them we didn't know, but that we weren't planning on having my tubes tied. They were satisfied with that answer, but they came by later to explain why they were asking. The OB told me that I had a very large "uterine window," which is a thinning of the uterus, usually due to adhesions caused by scar tissue from a previous c-section. She could see her whole hand through the wall of my uterus. She took that moment to tell us that it was a good thing that we didn't get on the ambulance, because if I had labored another hour, my uterus probably would have ruptured. Yes. Ruptured. On an ambulance. And both Micah and I probably would have died.
God truly protected us that day. And given everything else Micah has been through since then (a very difficult heart surgery, toxic shock syndrome, etc.), I can say with certainty that He has HUGE plans in store for this little guy. He is a blessing and a gift.
As you can see, I haven't been the most consistent blogger lately. But, I wonder if a goal to just post a picture each day would work. I'll give it a shot.
We went to the children's museum as a family yesterday. They have an exhibit about children's books. Micah's favorite book is Chicka Chicka Boom Boom and it was well-represented in the room. He could have stayed there all day!
Welcome to our family blog. We have three boys: Nathan (7), Micah (4), and Matthew (3). Nathan is our energetic, sports fanatic first-born. Micah is our charming little guy, who happens to have an extra 21st chromosome (aka Down syndrome) and multiple associated health issues. Matthew is our big-boy-wanna-be. I started this blog the day after we found out that Micah has designer genes (Trisomy 21, aka Down syndrome). We've been through a lot of ups and downs (and a lot of time in the hospital), but God is faithful and continues to show His love toward us.