If you missed our first update, you can catch up here.
On Thursday, November First, Sofia and I went in for what was turning into a routine ultrasound. It was our eighth. After the diagnosis of Gastroschisis during Week 17, we had been under fairly intense observation. This ultrasound was being performed every two weeks. Our fridge was filling up with photos. Now at 28 weeks, we were starting to think that the constant ultrasounds were just a precaution.
But, as the technician started measuring our baby, it became apparent that this was not going to be normal. We’ve had very normal results all around–baby even had a big head like me. Overall, growth is in the 35th percentile or so. But, as the results of the ultrasound showed on the screen, a single result glared down on us. The abdomen was measuring in less than the first percentile. The line graph next to the number actual had us off to the left of the lowest expected result.
We were taken aback by this result. After all, Gastroschisis means that the intestines are not inside baby’s abdomen. That means the abdomen will not grow as fast. We had been told that. But this was unexpected. In the growth ultrasound from a month ago, the abdominal measurement was in the 45th percentile. In his growth ultrasound from two weeks ago, the abdomen was in the 25th percentile. It’s almost like baby’s abdomen was doing fine until a month ago and then…stopped.
It took our specialist a long time before he came in. It turned out he had been making calls to ramp up how closely they would be observing baby. He let us know that our ultrasounds would be moved to weekly starting immediately. This, on top of non-stress tests and biophysical profiles means that we have 2-3 appointment a week for the remainder of the pregnancy.
He went on to let us know that all the research available indicates that complications due to prematurity are severe enough that there is little that will make them decide to delivery early. So we’ve entered this strange place where observation will be constant–but where nothing can be done. We are sitting here in some strange purgatory.
They will not let us go beyond 37 weeks for increased risk of stillbirth. That means we are in the final 60 days. In all likelihood, our kid will be born before the end of 2018. The real question: How healthy will baby be when they arrive? I still count myself among the lucky–knowing that this could have been much worse. But that provides little solace when we hear results like we did this past Thursday. Instead, we find strength in each other.
And, since we live in the United States of America, where our economy is so broken an unfair towards women and those not in the one percent, Sofia’s last day of work was this past Friday. This country has no organized paternity leave. Even FMLA is a joke. It doesn’t provide enough time off for a healthy birth. When looking at the protections given to us for a diagnosis like this, we quickly realized that there were none. The only protection we have is that Colorado’s Medicaid system was expanded under the Affordable Care act to provide our kid with 100% medical coverage if we stay in the NICU for more than a month (which we most certainly will). That brings the cost to us down to $0–Instead of $250,000-$500,000. Thanks Obama.