Who am I?

I decided to tell you all a little more about myself. I will do this by talking about my oldest son, who comprises a large part of who I am. While I do work as a PICU RN, this is my career and not who I am as a person. My family, and especially my sons, define who I am as a person. So, without further adieu, allow me the honor of telling you about my Andy, the one on the right in the black shirt on my sidebar.

Andy is 5 years old born in May of 2002. My wife and I had tried to have a child for 7 years before Andy came along. We had visited infertility doctors and had reached the point in the spring of 2001 where they had told us that our only chance of having children would be either in-vitro or the injectable drugs that seem likely to produce multiple births. Throughout that summer, we talked about it, prayed about it and finally, in October of 2001 agreed that we could have a full life together without a child of our own. Perhaps we would look in to adopting, we even discussed. What we didn't know at the time was that we already had one of own on the way. My wife has something called polycystic ovarian syndrome, or PCOS. Not only did it make it difficult to get pregnant, but it also causes her to have very irregular cycles. Like only 3-4 a year. Therefore, Andy didn't make his presence known to us until mid-November of 2001. We, of course, were very excited but Andy wasn't finished surprising us yet.

We went through all the 'normal' experiences of being pregnant. Doctors visits, blood tests, ultrasounds, etc. Then in December, right before Christmas, we got one of those classic phone calls from the doctors office. It seems there was a positive blood test that needed further testing. Seems the MAFP level was elevated in a blood test. Of course, at the time, we had no idea what this meant. All that we were told on the phone that day was that it could mean nothing at all, could mean down syndrome, could mean ....... Basically, until we were able to get an ultrasound done, in January, we wouldn't know what, if anything, it meant. So we spent Christmas wondering if there was something wrong with the baby.

Finally, January came and we had an ultrasound done. The ultrasound showed signs of something call an 'open neural tube defect'. We had no idea what this meant. We met with a 'genetic counselor', who again gave us a wide range of possibilities. From a child that no one could tell had any problems all the way to a baby that only survived for a few hours after birth, and a whole bunch in between. As the shock of this was setting in, we were asked for immediate decisions on two things. First, would we allow them to do an amniocentesis in order to confirm the diagnosis. This one was an easy yes, even with the risks involved. We needed to know something concrete. Then, the 'counselor' kept asking us over and over again whether or not we wanted to terminate the pregnancy. No matter how many times or how many ways we told her "no, even with the possible problems, we will not abort', she kept on asking. She said later that we seemed overwhelmed and that was why she kept asking. Since when does being overwhelmed with finding out that your baby is not going to be 'perfectly' healthy translate into wanting to abort your baby?

So, then another 2 week wait for the results of the amnio. When the call came, it was confirmed our fears. It was positive for an 'open neural tube defect'. What did this mean. Again, anything from only living a few hours after birth to significant physical disability to not even being able to tell. Again, a huge range of unknowns, a theme that will follow throughout Andy's life story. They also asked if we wanted to know the sex of the baby. We originally wanted the traditional surprise at birth, but decided that since we now had this whole new host of unknowns, we wanted to know the sex so we could name him and also so that we would at least know one thing for sure. We found out he was a boy and gave him our previously decided 'boy name' of Michael Andrew, and we would call him Andy. As an aside, we used his middle name and wanted his 'legal' name to be M. Andrew. Don't make this mistake, it doesn't work well. Right now, he is Michael A. to most people, but on my insurance, they dropped the M. and he is listed just as Andrew. Explain that to the billing people at the doctors office!!

So, we drifted along not knowing his future for the next 4 months. Many more doctors visits, an ultrasound every week and more and more tests. They were able to determine that he had the form of 'open neural tube defect' commonly known as Spina Bifida, so we went to work on the internet. We learned all we could about Spina Bifida, yet still would not know where in the range he would fall. The range ran from no one would be able to tell to totally wheelchair bound with lots of issues. Again, the range of unknown.

Finally, we made it to May and had a prescheduled C-section scheduled for June 9th. Since Spina Bifida is where a part of the spine grows outside the body, they usually recommend a c-section to prevent further damage to the spinal cord during birth. At our now twice weekly (we lived an hour from the hospital) appointment and ultrasound with our new OB on May 23, 2002, we had yet another surprise. New OB because we now had to see a high-risk specialist. She finished the ultrasound and stated she wanted to do another amnio to determine lung development and see if we needed to go earlier. The amnio was done and we went home to wait. We no sooner got in the door and the phone was ringing. My wife answered it and, thinking sooner meant in a week or so, was shocked at what she heard. The doctors exact words were "He's fully cooked! Be here at 7 am tomorrow morning". TOMORROW MORNING?!?!?! We were not ready for it to be that soon! We called our parents and told them Andy's birthday had changed. They were shocked as well.

Well, the day finally came. We were at the hospital at 7 AM as scheduled and Andy was born at @ 9:00. He was immediately taken to the NICU as we had expected. The neurosurgeon we had met in the past few weeks came in to the recovery room to meet with us and have us sign the consent for Andy's first surgery. This surgery would repair the defect in his back and protect the spinal cord from further damage. I was able to go and see him in the NICU that first day, but my wife wasn't allowed to. The staff on the post-partem unit would let her leave the unit and go to the NICU. Andy was taken in to surgery the following morning at the ripe old age of 23 hrs. We waited in my wife's hospital room. After a couple hours, the neurosurgeon and the anesthesiologist came in to the room. Seems there had been a 'minor' complication. During the surgery, Andy had an 'episode' where his heart rate got dangerously low requiring a dose of epinepherine to correct. They had actually stopped the surgery on his back, turned him over and were prepared to start CPR. Luckily, the Epi worked and they were able to turn him back over and complete the surgery. They believed the episode occurred because of 'positioning'. This did concern us a bit, but we decided thats alls well that ends well.

Andy recovered from the surgery and we went home after 6 days in the hospital. We had no idea what the future would bring except that we would be seeing many different doctors and specialists. All we knew for sure is that we would handle whatever we had to. What else would you do for your child. Tomorrow, I will post about what Andy has had to deal with since coming home from the hospital. A little hint, he has been back a total of 15 times since birth.