So I think it is finally time to share what is going on. I’m just going to start from the beginning.
My wife and I celebrated our three year anniversary on August 15th. With a new house and a baby on the way, this one seemed special in a whole new way. In the days after our celebrations, we returned back and were settling in for what we expected to be a beautiful journey through the second and third trimesters. Instead, things got complicated.
We were both at work on Monday, August 20th. My wife, the assistant branch manager of a credit union here in Colorado, is unable to answer her personal phone throughout the day (for good reasons). So, when she spotted that she had a missed call from our OB, she was more than a little confused. In the first part of pregnancy, we get monthly visits that don’t really amount to much. And we had just had our four month checkup.
When my wife called back, she got someone who was not the nurse who called. All that they could tell her was they they wanted her to come in and they had an appointment in two hours. She said okay, knowing there really wasn’t any other option. That was when she called me. I was lucky enough to not be in an interview. I talked with her–and together we tried not to worry as we planned out the afternoon.
We both talked to our employers and were able to take the afternoon off (we both work with surprising flexible organizations, thank God). We met up at a park-N-ride and talked all the way to our OB–where we arrived far too early. We knew something was wrong–they don’t call you in like this for nothing. And they know that Sofia works an hour away.
So, as we waited in the exam room, I could feel the energy in me build. I knew something was happening. I just didn’t understand what. I kept myself sane by trying to keep my wife occupied. We spent a few minutes examining the floral painting on the wall. The flower had about 100 petals–and each petal had a different design. Or so we thought. After staring at it awhile, we started pointing out which patterns were reused on a different petal. It turned into a game.
Until the doctor came in.
Our doctor is young and light-hearted. She sat down right away and told us she wasn’t going to dance around the issue. She explained what we already knew–that blood was taken for a few tests when we came in for the four month checkup. She told us one test came back abnormal. As she explained what that meant, I moved my chair closer to my wife as she started to tear up. I guess I wasn’t ready to cry, I just needed to understand what was going on.
And the hardest part was that she could not tell us much. At first I asked her if this was the test that had a bunch of false positives. She tentatively said yes, then explained that the result was such that that was highly unlikely. The gist of the test is: a certain amount of a protein that baby produces is expected to flow out of the placenta and make its way into the mother’s bloodstream. If that number is under 2.5, it’s considered normal. If it’s over 2.5, there is likely a hole in the baby…and they have to figure out where. This test is usually used to diagnose neural tube defects like Spina Bifida.
Our test came back 6.77. This wasn’t going to be a false positive. She told us that we’d be referred to Maternal Fetal Medicine Specialist who would do a 3D ultrasound and pinpoint what was going on. The reality started to set in that something was wrong…and that we weren’t going to be able know just what it was right away. Our doctor let us know that appointments could take as long as two weeks.
As we sat out in the car, trying to digest what had just happened, my wife got a call from the OB. They were called to let us know that they got us in the following day. That changed the mood of everything immediately. The concept of knowing there is a hole in our baby and not knowing where for almost two weeks was terrifying. How were were supposed to focus on work for two weeks?
Sofia and I took the next day off. We cooked breakfast, took the dogs to the dog park, and generally tried to distract ourselves. The Specialist called us in even earlier than expected. So we made our way to Poudre Valley Hospital–not sure what to expect. We had Googled so much that I didn’t know what to think.
So, when we finally got pulled into the dark room with the 3D ultrasound, time kind of stopped. The technician when straight to the baby’s brain. That would have been the would case scenario. But the baby’s brain was perfect. Then they moved down to the spine. The moment I saw the picture, I could feel a huge sense of relief flood over me. The spinal cord was completely inside the body. Our biggest fear–Spina Bifida–was not what was wrong.
As I held onto my wife’s hand, the technician moved to the abdomen. As she moved around, she started talking to us about what she was seeing. The baby’s intestines were not inside the abdomen–and the abdomen had never been able to close as a result. There was, simply, a hole in our baby’s abdomen. The intestines were floating–hanging out with the umbilical cord.
As the technician finished measuring the baby, I felt relieved. I was so focused on the worst case scenario that I didn’t even consider a situation like this. We talked for awhile after the technician left. The relief was evident, but were had no idea what this meant.
The Specialist has been doing this all his life. As he sat down, he handed us a bunch of papers. This included a five page printout of the Children’s Hospital explanation of what was going on. And he finally gave us a diagnosis–Gastroschisis. Although, putting a name on it didn’t change much. They don’t know that causes it and there’s nothing they can do about it until birth.
He let us know that we would be giving birth at the Children’s Hospital of Colorado. He talked to us about how they do this all the time. He even explained how they slowly move the intestines back into baby’s body after birth. As he explained everything, the relief that it wasn’t worse started to fade. He told us we would likely be in the NICU for 6-8 weeks, which is the average for this situation. We’d be staying at the nearby Ronald McDonald House.
He scheduled us for a full day visit with Children’s the following week. In the meantime, we returned to our normal lives. The reality that we would know about this for five months before we could do anything about it was quite strange. We started telling friends and family…and starting planning for what will be a crazy winter.
On Thursday, August 30, 2018, I was sitting in the family waiting room on the fourth floor of The Children’s Hospital of Colorado in Aurora. My wife and I had finished lunch early and were anxious to meet with the doctors. While we waited, we both had our phones out. I was reading the news.
As I waited to hear on the status of my unborn baby, I read the White House Decree that all federal employees would go without a cost-of-living adjustment in 2019. I would say it felt like a slap in the face. But, I expect nothing less from this administration. Whenever this happens, I just lose more respect for his supporters.
As I fumed, I knew I was just trying to distract myself. I stay politically informed, but my world is consumed by the unborn child my wife is carrying. It had only been a week since we got the diagnosis: Gastroschisis. Since then, we had done the truly millennial thing: Google everything until you have a list of questions and very few answers. Luckily, we were about to meet with five experts: the neonatal surgeon, the Maternal Fetal Medicine Specialist, the Neonatologist, the Head Nurse of the NICU, and a social worker.
It felt surreal when we were finally called into that room. All these experts had come together for the tiny person still growing inside my wife. They went around the room one by one and told us the plan of action. Our baby’s abdomen never closed. In the ultrasounds, you can see their intestines hanging out–just floating there. They will be born this way.
Our baby will have surgery within the first hours of their life to start the correction. As my wife recovers in childbirth, our baby will start down a long road to recovery. We were told to expect 6-8 weeks in the NICU as the intestines are returned to baby’s body and they make sure they are able to digest food correctly. They let us know that they are shooting for about 37 weeks for the birth to avoid late-term dangers. That is January 2nd for us. They also tell us about the risk leading up to that date–and tell us we should move down to the Ronald McDonald House Aurora in Mid-December.
We didn’t quite know what to expect when we were sent down to Children’s. What we got was an action plan. In the months that lead up to December, we will get to see baby a lot through continuous ultrasounds as they check to make sure the intestines are doing alright. Then, in December, we will start our long stay in Aurora as we wait for baby to arrive. And they could arrive at any time between then and early January.
And then the hard part. Two months in the NICU. It doesn’t sound as scary to me anymore. When I first heard that, it took me aback. But my wife and I are planners. I already picked out the book I want to read to our baby as they recover: The Count of Monte Cristo. It’s my wife’s favorite and my best friend bought her this beautiful old edition of it.
So here we are. With 3-4 months to go, it’s rather strange how little has changed. But, as the appointments start to increase, that will certainly feel different. We are eager to meet our baby, even knowing the road ahead is going to be the hardest adventure we’ve ever had to face. We hope you will keep your thoughts with us as we prepare for the months ahead.
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