Friday, October 15, 2010

God and Tomas, part four

Another month rolled by as Thanksgiving approached. Much of my husband's family and us were renting condos up in Williamsburg for the holiday. I went to the maternal fetal doctor for my monthly check up and he went back and forth on whether to let me go. Finally, he decided the driving wouldn't be an issue but I wasn't allowed to do much walking. The extra fluid put me at risk for early delivery. Believe me, walking was the last thing I wanted to do. I was huge, and I mean huge. We decided it was time to tell the family about the birth defect and the DS risk, since I would be mostly hanging out at the condo while everyone else was sightseeing. About a week before we left we told everyone. There was much lamentation and crying on their part, mostly about the DS, which some of them saw as a lifelong burden we would bear. I just tried to be patient and let them come around. Also. we decided to tell the girls, even though we did not know for sure if the baby had DS. But we thought they should know he might, and also we needed to tell them about the surgery. We had met with the surgeon and he told us to expect a 4-6 week NICU stay, possibly longer if the baby did have DS.
So I sat on the sofa one day, with my then eight and six year olds, and tried to explain the surgery and what Down syndrome was and how it would change what the baby would look like, and how it might make things harder for him to learn and do. They took it all in, and then the eight year old asked, "Mommy, just one thing - is he going to want to play hide and go seek?" That's it, all boiled down, without any grown up baggage - will he find joy in being alive. Will simply being be enough to thrill him? Yes, Virginia, there is a Santa Claus.
We went to Williamsburg and had a great time. It was freezing, even for them, that November. I sat on benches and in visitor centers and we all still had a great time. Occaisonally, I would walk around a little with them, and once I even stayed behind at the condo and let all the rest go have fun without me. That was my initiation into the frustrating labrynth of medical care and insurance. The surgeon did not take our insurance and I was in a scramble to find one who did and had rights at the children's hospital, otherwise I would be at one hospital recovering from a c-section (2 previous - so no choice there) and the baby would be at another recovering from the surgery. I spent about 6 hours that day on the sofa and on the phone and in the end did find a surgeon who could operate at the women and children's hospital.
Shortly after arriving home, I began having contractions. Real ones, painful ones. I was only 30 weeks pregnant. I went to the doctor who sent me to the hospital who monitored me and stopped the contractions. This was the beginning of a very repetative pattern over the next few weeks. All the doctors wanted me to get to 36 weeks, and they also began to lobby very hard for an amnio. They wanted to know what they were dealing with and how to best prepare. So a few weeks later I went in. I had never had one before and a dear friend went with me (husband traveling again) to hold my hand. Funny thing is God had prepped me for it and I didn't even know it. And boy, oh boy, are God's ways not our ways:
Before we left for Virginia, I went in for an endocrinology check up for my thyroid. I had a goiter and a hyperactive thyroid in my twenties, had a radiation treatment for it, and had been hypothyroid ever since. During my pregnancies the doctor monitors closely to make sure my levels were normal for the sake of the development of the baby. At this check up she felt another goiter and sent me for an ultrasound. It came back much larger than expected and she then wanted to biopsy it to make sure it wasn't thyroid cancer. If it was I would need surgery, but it could wait until after the baby was born she re-assured me (hah - didn't work). Two weeks before the amnio I went to the endo's office for the biopsy. A needle the length of a baseball bat lay on the table (ok - I exaggerate - but you get the picture). Pregnant lady, so nothing for calming of the nerves, just lay on the table please. Anyone tried to lay flat on their back and not move while you are 7 months pregnant? Somehow I made it through (mostly by counting the little black spots on the acoustic tile of the ceiling). When she was done she sad she couldn't get a good sample and wanted me to go to the hospital to have an ultrasound guided biopsy done. What? I have to do this again? A week later and there I was, on a different table, with a different doctor, just a topical , counting those same stupid spots. Let me tell you, a ginormous needle to the neck hurts - a lot. Flash forward to the amnio and it was a breeze!!!
Biopsy came back negative, amnio came back positive. God works in mysterious ways.

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