Sunday, July 18, 2010

The Story of Tait (part 2)

If you missed Part 1, go here.

Welcome back. ;)

When we left off, my sweet baby girl had come home from the NICU and was having some symptoms of something else being wrong - though none of us, including our pediatrician, could put our fingers on it. The 1st symptom was her size. She was born 5 weeks early, but weighed 7lbs 5oz. She was a giant compared to the other babies in the NICU. But her size didn't really raise a red flag. The symptom that really puzzled us was the size of her tongue. It was so big that she couldn't keep it in her mouth. It stuck out 100% of the time. She had a very difficult time eating because of it and we tried every single bottle nipple on the market before we found one that she could use. Her large tongue also meant that her airway was smaller, so she got sick easier. A common cold would land her in the PICU because it would turn into croup and other breathing problems. My father-in-law did a little research and found out that a large tongue could be because of a thyroid problem, so we had her thyroid checked. It was normal. Our pediatrician, Dr. Jim Ed Martin - seriously, who COULDN'T love someone named Jim Ed? - who was the pediatrician on call the weekend Tait was born and was a total and complete answer to prayer, didn't give up. He knew something was "off" and vowed to research and test until he figured it out.

Then one night, as I was up during the middle of the night feeding a newborn, I decided to do a little "home doctor research" - ie, Google research - on the computer. I Googled "infant large tongue" and the link to the Beckwith-Wiedemann Children's Foundation popped up. I clicked over and it was like I was reading Tait's biography. I, of course, freaked because I didn't know what this was, what the prognosis was, or what our lives were about to look like, but I knew without a shadow of a doubt that Tait had it.

In the middle of all of this happening, Spencer and I were really feeling the urge to move back to Alabama. We were living in Tallahassee, and loving it, but knew it wasn't home. However, WHERE in Alabama we would move to was a huge bone of contention between the two of us. We wanted 2 different things, and neither of us would budge on the issue. It was the first, and to date the only time that we haven't been able to come to a compromise on an issue that we were facing. We talked with our pastor about our conflict and he gave us some great advice that I will never forget. He told Spencer to use spiritual discernment when making the decision as to where we would move, not just decide based on what he wanted. He told me to shut up and hit my knees (not in so many words, but that's what I heard). Spencer was, and is, the head of the household. He is the leader, backbone, and breadwinner in this family. I knew that ultimately the decision was his, and that my job was to pray that he made a decision based on where God was leading us. It was a rocky time. I spent a lot of time in prayer. I begged God to send us to a city where there were more opportunities to grow and raise a family than where Spencer wanted to go.

Meanwhile, Dr. Jim Ed wanted us to go see a genetecist in Gainesville. Because Alabama is home, we chose to go to Birmingham, Children's Hospital, to see a genetecist there, instead of Gainsville, which has an amazing Children's hospital, but is completely foreign to us - with both of us being from Montgomery, Birmingham was much more familiar than Gainesville. Children's Hospital has an unbelievable reputation and we knew we would get world class care there. So we scheduled a trip to Birmingham to meet Dr. Maria Descartes, a spunky, brilliant, Hispanic doctor, who has become one of our favorite people in the world. Tait was 12 weeks old at the time. We were still living in Florida and still undecided as to where we were going to move. Spencer applied and interviewed for a couple of jobs in Alabama, and doors kept closing. Frustration was setting in. We had a 4-year-old, and a 3 month old who had a syndrome that no one had ever heard of, and scared the pants off of all of us. We were living 5 hours away from our families, and now we had a doctor that we loved in Birmingham - 6 1/2 hours away. I wanted to move to Birmingham. Spencer, to put it mildly, did NOT. To say times were tense is an understatement of epic proportions.

The test for BWS is very primitive, so Tait was clinically diagnosed with it. BWS is characterized as an "overgrowth syndrome." The main "issue" associated with BWS is that children with it have an increased risk of developing certain abdominal cancers within the 1st 8-9 years of life. BWS kids are tested every 6 weeks (until age 4) for hepatoblastoma (a tumor in the liver), and every 3 months (until age 8) for Wilms Tumor (kidney) and Neuroblastoma (affects the nerves, but mostly begins as a tumor on or near the adrenal gland). So Dr. Maria set up a schedule of tests for Tait, beginning immediately. The liver test requires a vial of blood to be drawn and the Wilms/Neuroblastoma test requires an abdominal ultrasound. Tests began and we had our new normal. BWS isn't usually fatal (praise HIM!) and Tait seemed to have a very mild case (many kids with BWS suffer from major eating problems because of their tongue size, and have to be tube fed until a tongue reduction is performed. They also have hemihypertrophy, which means that one side of the body grows at a different rate than the other side. Tait had none of those issues). We were rolling along quite well until one ultrasound threw a kink into our plans and completely knocked our feet out from under us.

To be continued....

7 comments:

Phyllis said...

Doing my own personal diagnosis, there's a little boy in our church here with this! He has a huge tongue and some odd health problems. Of course, there's nothing to do about it here. They're already watching him for blood sugar and some other things. Please pray for him though! He's almost 2.

Mocha with Linda said...

wow. I had never heard of this. And once again you leave us dangling in suspense. (Have you ever considered writing mysteries?!) :-)

Aimee said...

Thank you for posting Tait's story! I'll keep reading.

I'll keep thinking about writing my Abbie's story, too. :-)

From one BWS Momma to another,

Aimee

Melanie said...

I have never heard of this either. Praying all is well... I guess I have to wait until part 3?!? ;)

Blessings!
Melanie
~ melscoffeebreak.blogspot.com ~

joven said...

beautiful blog..pls visit mine and be a follower.. thanks and God bless..

http://forlots.blogspot.com/

Izzy said...

I never heard about it either. Where's part 3?

Leah @ Point Ministries said...

I'm clueless on this. Never heard of it either. Blessings on you Robyn. EAger to read part 3.

Leah