It was a nice autumn day in October when Tracy and I went to her 20 week appointment. We were having our first ultra-sound of the pregnancy (well, first official one. Tracy had an ultra-sound when she was eight weeks pregnant and had kidney stones). Excitement ruled the day! Lots of feelings and thoughts run through your head when you think about the first ultra-sound: Is it twins? Is it a boy or girl? And will the ultra-sound tech or doctor mess up and tell us the sex of the baby even though we don't want to know? Is the baby healthy? Awe, this is the ultimate question. Of course you know all the horror stories. You've seen the specials on 60 Minutes about the twins joined at their heads, the babies born with a genetic hemoglobin defect that turns their skin blue, or the stories that tear you up inside about the little boys and girls who are born with horrible diseases that take their lives so early. As you watch these shows you think the same thought that everyone else thinks: "That's sad. Glad that's not us." So, as you drive to the ultra-sound appointment you take comfort in the fact that most of that stuff that you see happen in TV is rare and probably won't happen to you.
Our appointment started out like any other appointment would. We had the ultra-sound, made small talk with the technician and made darn sure that she knew we did not want to know the sex of the baby. The appointment seemed to go well. The technician did her usual thing, or at least what I expect is her usual thing, and then referred us to our regular room to wait to discuss things with our doctor. No alarm bells, no red flags. We would expect that our doctor would want to discuss the ultra-sound with us. Talk to us about how healthy our little boy or girl looked. How he or she was still not quite developed at this early stage but she could just tell by the ultra-sound that he or she was cute. I remember that moment like it was just seconds ago. Our doctor said "the baby looks healthy." Sweet! Just what you want to hear. Nothing to do now but try and keep Tracy from getting sick and ride out the next twenty weeks till our little bundle of joy came. "There is something else though," our hearts leapt into our throats. Something else? That's not words you want to follow "everything looks good." The words I was looking for at that moment were "so that's it," or "ok, I'll see you guys in four weeks." She went on to tell us that there was "something" coming from out of the baby's mouth. She was not sure what it was but she wanted to refer us to a specialist. As she left the room moments later, Tracy broke down into tears. As I consoled her the best I could all I could think about was I guess I spoke too soon.
The very next morning we were in the specialist's office. The excitement of going to the "baby doctor" had been lost. It was replaced now with fear and anxiety. The specialist doctor, Dr. Seybe, did his own ultra-sound just to be thorough. He told us then that the mass, as it had been referred to, was a teratoma (see my tab above for more information about teratomas). The teratoma was coming out of the baby's mouth but he was unsure of where it was stemming from and why or how it was there. He then said that an idea that isn't uncommon is to abort the pregnancy because the quality of life for the baby may not be good. This of course, was not an option for us, but just hearing a doctor say it as though it was almost a recommendation didn't feel good. At this point, I had reached my limit on new information. Like a grad student reaching that last ten minutes of their three hour nigh class, I was at my limit and didn't want anymore information packed in. Regardless, he then told us that he did not think the baby should be delivered in Boise. He gave us a list of some of the best hospitals where the baby could be delivered: San Fransisco, Philadelphia, Chicago, Dallas...He told us he would make some phone calls, do some research and get back to us when he came up with some recommendations. We left the office in a daze. Not only is our baby "at-risk" but we now have to go to some other city hundreds if not thousands of miles away to deliver? How's it going to work? I wondered. And how long do we have to be there? Do we fly in a couple of weeks before the delivery and then fly back a week or two later? That's not so bad. But where will we live? How will we afford this? That day was the start of something that would become a constant in our lives which still exist today. That day we learned that our lives would be filled with more questions than answers.
As we adjusted to the news, we began to tell small groups of friends and family. A friend of Tracy's, Mike Kasper, is a pediatrician in the Kansas City area. When he learned about our situation with the baby he informed Tracy's mom that Children's Mercy Hospital in Kansas City had just added a Fetal Health Center to the hospital that delivered babies like Jude who were high-risk. As this news spread to us Tracy encouraged me to call Dr. Seybe's office and notify them just in case they weren't aware of this. As it so happened, he was not aware of this. What was funny though was the fact that Dr. Seybe graduated from KU Med and had old colleagues in the area and yet still was not aware of this. I think this was God's way of giving his "two cents" to the situation. At any rate, Dr. Seybe called a few days later and said that he recommended Children's Mercy in Kansas City for our baby's delivery. He said it wasn't the absolute best hospital in the country, but he believed that having family nearby outweighed a couple of the other hospitals in far away cities that had more experience.
The next month was full of preparation. Preparation to not only have a baby but to move temporarily to Kansas City. We had no clue at this point how long we might be gone from Boise. As we met with our new doctor in Kansas City over Thanksgiving break, that was our biggest question (well, our biggest question for ourselves anyway. Obviously, our baby's safety and health was our top priority). Our new doctor, Dr. Bennett, once again knocked my socks off with new information. First, he told us that this would be a big procedure, not just a regular birth with a couple extra hands in the room. He said it would require a team of doctors from all different specialties to deliver this baby and that it would be risky. He was a very candid, honest man and said at that point he felt they could deliver the baby successfully and if that changed he would tell us and help us make arrangements for a different hospital in a different city. I felt that familiar feeling of too much information coming my way again. He then said that we would have to be in this for the long haul if we come to Kansas City. The baby would need several surgeries over the first couple years of it's life and would most likely have some deformity and physical difficulties to overcome. He couldn't give us a time line but said that it would not be a situation in which we would deliver the baby in February and be home by March. It's tough being told that your family needs to relocate to another city for a bit. It's even more tough when your stay is open-ended. This statement was never more true for anyone than my wife. Tracy would plan her funeral if she knew when she was gonna go. So not being able to really plan the next three months? Six months? was, and I'm sure on some level still is, killing her.
As we returned to Boise we thought about how to break the news to our friends in Boise who have become like family to us. We all hoped that God would intervene and that our baby would be born in February and blow the doctors away with his ability to heal in just a month's time so we could go back to Boise. We all knew that wasn't going to be the case though, so we hoped for the best we could: Deliver the baby in February, and be home some time in April, maybe the end of March. So, after about of month of packing, preparing ,and planning as best we could we took off for Kansas. We arrived just a couple weeks before Christmas. We hoped that we would have a nice, restful ten weeks to finish out the pregnancy...Jude however, had different plans and came ten weeks early on December 28th. And the rest is history, or at least can be read about in some of the earlier blogs on the blogs page...
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