Micahs Miracle Medical Story

On June 9, 2009 we went in for our 24 week ultrasound. After what seemed like forever of looking at it, she called in the doctor. Didn't take a rocket scientist to know something was up. The doctor explained as kindly as he could that he had some sort of mass on his neck, but didn't know what it was. Two days later we went to the high risk doc, who explained it as a cystic hygroma, a mass that had a 50/50 chance of being fatal before birth. An amniocentesis ruled out genetic abnormalities, which meant he had an improved chance of survival barring cardiac failure. If he made it to 30 weeks, we'd be sent to Cincinnati for further evaluation. Obviously, he made it! His 30 week tests came out as well as they could, no cardiac problems, no obvious airway blockages etc. They asked us to "relocate" to Cincinnati in 2 weeks, as these babies typically come early. At 32 weeks when we returned I was hospitalized for pre-term labor, ended up being there 17 days that month. Micah was insistent on holding on which was fantastic!

Micah decided that instead of waiting til his planned C-section a few days later that he'd make his appearance at 8pm on August 31st. They did what was called an exit-to-airway procedure (I was under general anesthesia) to do their best to ensure they could intubate him before he was cut off from my oxygen supply. From what they say, he handled it like champ!

Welcome Micah!!!

5 pounds, 13 oz and 19" long.
What we hadn't talked about much was the impending surgery, and the fact that I wasn't going to get to hold him until after surgery (ended up being 6 days, yikes!) He had surgery on September 3rd. This was Micah after surgery number 1, the first day he could be held.

After another week or so they decided he didn't need his breathing tube anymore, and he was extubated. About a week later he started showing signs of respiratory distress and after a particular test they found he was aspirating on his saliva very severely. Luckily, he'd been tube fed or had IV nutrition until this point.

There wasn't a lot of discussion to be had, he had to be reintubated and eventually trached. He also needed a permanent feeding tube. He had his feeding tube at 5 weeks, and after finding mass in his trachea, he was trached at 6 weeks. After his trach surgery we were so happy to see his little face! We were on the grow and get trach trained plan for a few weeks after that. Not to mention the "insurance won't pay to let us have what we need to go home so they'd rather pay for weeks of the NICU" plan. Irritating beyond belief!

By now, Micah had a firm diagnosis of lymphatic maformation. In very easy terms, his lymphatic system did not form correctly. It happens in about 1 in 6000 live births, but often not this seriously. It is not a genetically inherited condition, completely random. His type primarily consists of macrocysts, very tiny little bubbles filled with lymphatic fluid. This type of LM basically is a disease that is managed, not cured. It recurrs, although hopefully with less severity after each surgery. We believe that his mass at birth inhibited the growth of some of the branches of his right facial nerve.

He got to fly back to Indiana on a medical airplane ride, where he spent three more weeks in the hospital before getting to come home. Spent a whopping 3 months in Cincinnati, he spent 8 weeks in the NICU there and 3 weeks in Indiana.

Welcome home Micah :) It was mid-November when we finally took him home. It was a beautiful crisp fall day.

At about 6 months old he was declared safe to start trying baby foods. By this point though, he wasn't interested despite the hard work of the therapists. At about 11 months he was cleared for liquids but agian, same problem. He has multiple difficulties in his mouth/tongue/jaw area that make it difficult to do oral feedings.

Micah at 5 months

We didn't have to go to the hospital much for the next year. He had a few procedures to remove the mass from his airway and a few other odds and ends (scopes, P.E. tubes, etc). Considering his prematurity and time lost in the hospital, Micah was hitting most of his developmental milestones very nicely. (Of course, not speech or feeding, but we'll focus on the good.

He had a really big birthday party and we went on vacation that fall. By now, as you can see, the mass had be returning pretty rapidly and decided that a spring surgery would be in order. As you've probably noticed about Micah, he's a happy, pretty well adjusted little kid. He has about as much personality as you could handle, and he brings people a lot of joy.

The March 2011 surgery was a doozy. They werent able to accomplish as much as they'd hoped because of major blood loss. It helped though, especially with his ear and probably his hearing. Unfortunately the surgery results didn't hold up as well as we'd hoped. He still made a really handsome little man dressed up for Easter (here's the before/after)

His surgery recovery wasn't very easy. He spent 3 days in the PICU (the Peds ICU) and about 7 more days in the hospital after that. He lost a lot of fluids from his drain, and it lasted a total of 10 weeks. He needed replacement IGG (immunoglobulin G) and eventually a crazy medicine to stop the drainage. For whatever reason, a medicine they use to prevent transplant rejections often works to stop lymphatic drainage (don't ask, I don't know!) Problem is, it's an immune suppressant. He was on the medicine a total of about 4 months before the next surgery, just this August. The August surgery was much longer, but overall less dramatic than the March surgery. (THANK GOODNESS!) He spent 8 days in the hospital, and is still draining (about 3 1/2 weeks later). The results from this surgery are much more obvious. I don't have a super recent picture on my computer, I apologize.
 Here's a brief update on the last year.  Micah will be turning 3 very soon!  This year was a little less busy than the previous two, but still had some big surgery.  They removed a large muscle in his face that had never formed correctly and was holding his mouth too shut.  While this surgery helped, it ultimately didn't solve our primary problem.  Progress has been slow, and now we need to wait for him to grow so that he can have enough room in his mouth for them to fix his airway issues.
Micah has been doing great.  He's ornery and fun and has a ton of energy.  He babbles to his hearts content (when he wants to, he's also very stubborn!).  He will start preschool this year in hopes it will help him catch up on some of the social aspect he's missed.

Physical Therapy- Febrauary 2012

Micah at the zoo, August 2012

 It has been quite the ride, I won't lie. I wouldn't change it for a thing. I remember reading all the scary words that come up with the term cystic hygroma.. the fetal hydrops, the poor outcomes. It's not easy, but this kid was put on this earth by God for a reason. Never one day have I doubted that. He's our Miraculous Micah. :)