So yes, we were trekking but enjoying ourselves all the while. It didn't take long until shopping gave way to hunger, for all three of us, and we were conveniently stationed near Chipotle. As we sat there eating our burritos and pureed fruit, sorry Micah, something dawned on me. It was a year to the day since we began Micah's medical journey.
One year ago, Andrew and I were sitting in a waiting room, ecstatic over the news that we were having a boy, and joking about who he resembled, from the ultrasound pictures in our hands. It's amazing how quickly things can change, as five minutes later, as the Dr. called us both to come back, a sense of 'not right-ness' settled in my stomach. It's the sixth sense that tells you something is wrong, paired with an all too serious Dr., and the fact that Andrew shouldn't have been needed for this part of the appointment, I knew things were veering from the norm. No, this was not the norm. What they were seeing was fluid in our sweet babies brain. Hydro...something... nothing to be done in the womb, monitoring, university of maryland, no guarantees, that's what we heard. We left in tears, united but feeling defeated. The phone calls we were so anxious to make only minutes before, were now dreaded. After arriving home, I called the Dr. back twice to confirm what we were told. I found out the 'hydro something' was hydrocephalus and other bits and pieces of info that were lost in translation from the shock.
How was this happening to us, mid twenties, healthy, active, planned, taking every precaution to ensure a healthy pregnancy? I knew nothing could have prevented this but the questions remained.
We were scheduled for an appointment, at The University of Maryland, for a second, more extensive ultrasound, and confirmation. Surely, this appointment would lead to a different outcome, so for the next few days, we prayed, cried, and clung to that hope.
That appointment came and went, along with the result that our Dr. had been correct. Micah's brain ventricle measurements were 18 and 19, high end of normal is 10. We began weekly ultrasounds to monitor the fluid levels, and found they were steadily, but not rapidly increasing.
We met with another Dr. who encouraged us to weigh our options and decide whether we could handle continuing with the pregnancy. We assured her this was not an option, we were prepared for whatever challenges this brought us and our little growing life. She proceeded to explain our options, again, in a way that made us feel selfish for choosing to continue on. What kind of life were we offering him if he in fact had struggles that we could have avoided? Well, thankfully our convictions did not waiver, and we knew that the struggles of this world are not limited to possible handicaps or a less than normal appearance. We left the office sure in our decision but disheartened knowing how many parents might choose another option. Not because they are bad people, but because they were made to feel selfish, that a "less than perfect" child, does not deserve a chance. We also left knowing we would not be seeing that Dr. again.
At 26 weeks, we were scheduled for an MRI of Micah's brain, yes of his brain, in the womb, crazy stuff, and this we were told, would allow us to see if there was damage being done to his brain, as a result of the pressure building from the fluid. We prayed that his skull would be reacting as a forming babies should, growing to allow room for the fluid, and thus lessening the risk of brain damage.
Yet, once again, as we sat in the specialist's office, that sixth sense for 'not rightness' kicked in. "Buckle your seat belts, because you're about to be sent on a roller coaster ride." was how the Dr. worded his intro. In summary, he said, our baby did not have hydrocephalus. No, it was worse, he had holoprosencephaly. This meant, that yes there was extra fluid, but the fluid was there where brain was not. The front lobes of the brain had not seperated and brain damage and handicap were imminent. "Kids like this will never be lawyers." verbatum. (Yeah, I don't need to tell you what we thought about that comment.. ) We were also told that, at birth, our baby would either live with minor to major handicaps, or be born without the capacity to thrive. Basically, we knew nothing, and it was all a waiting, and praying game. We left feeling once again defeated, but prepared to face whatever challenges this new diagnosis would bring us and our growing baby.
We had been praying fervently all along, but it was at this point that I started questioning how I was praying. If I prayed for healing, did that mean I could not accept a less than 'normal' child? No, this was not the case, so I felt guilty for this form of prayer. But did this mean I did not think a miracle was possible and was it wrong to want a child to not face the struggles of a handicap? No, so I should pray for a miracle. Back and forth I went until I realized that God knew we were prepared to accept this sweet life, however He chose to give him to us. He knew our faith was growing more than ever and wanted to hear the desires of our hearts, so we prayed for healing.
Around 30 weeks in the pregnancy, we moved home to PA. We felt the need to be close to family during this time, and the fact that Hershey Children's Hospital was highly recommended for pediatric neurosurgery, sealed the deal.
We continued on, being strengthened by an outpouring of love from friends and family. People ask how we got through, and I can say that it was by being lifted up by so many but primarily from our faith in God.
One story that lifted us up, probably more than any, was a vision that my Grandma had. She, at the time, was very sick and in the hospital. Her health was touch and go, however, it was during this time that she had a dream. She told me " I saw your baby and he was beautiful." She said he was perfect and could see him clearly. Well, whether this would turn out to be true, we thought it was a beautiful dream and an amazing encouragement.
Time rolled on and soon enough Andrew and I found ourselves in a labor and delivery room at Hershey. We no longer carried dread for an uncertain outcome, we decided to leave that behind a couple of months ago, and instead went about the day as any 'soon to be parents for the first time' would, with excitment and anxiousness.
At delivery we had three Dr.'s; including the head Dr. of the NICU, the nicu nurse practioner and two labor and delivery nurses. They were ready for this baby.
At 3:17 a.m on July 22, 2010, Micah Andrew entered the world in all his screaming baby glory. He proceeded to leave a roomful of Dr's and nurses with a whole lot of free time. I was told beforehand that he would be whisked away and to prepare to not be able to hold him. I in fact did hold him, and not just for a minute, but the same amount of time any new Mom would. He was taken afterwards to the NICU, where he stayed for two weeks, due to being a slow eater, unrelated to his brain or prior diagnosis. He did not have holoprosencephaly, but did have a mild form of hydrocephalus. The fluid levels were much lower than were being displayed in utero and he was able to be monitored as an outpatient. Even though the two weeks were long, the elation we were experiencing as he continued to progress and develop normally carried us through. He was astounding the Dr.'s and us.
Finally, the day came to bring him home. We continued to track the fluid in his brain. The goal was to make it to three months of age, at which point he would be eligible for an endoscopic third ventriculostomy to drain the fluid rather than a shunt. The fluid stabilized until he was around 2 1/2 months old. This allowed him to have the ETV done at three months of age, another huge answer to prayers. He now has no shunt, and a new, natural way for his brain to drain the fluid and no appointments with neurosurgery until a follow-up next January! Talk about an answer to prayers! He is also hitting his milestones and showing no signs of delay.
And, best of all, my Grandma, upon seeing him, recognized him from her dream. She said he was just as she saw him, perfect, beautiful, and with the same face. I know this vision was a gift, a blessing to her during a time of struggle and a huge encouragement to us. I will carry this memory forever, especially as she left this world just last week.
This is all a far cry from sitting in a sterile room, listening to our options. It pains me to think about that day but we hope to use Micah's story as proof that there are no guarantees, even in a seemingly certain diagnosis. The jury is still out, as to whether he will be a lawyer, but we are fine with that. :)
So, there we sat in Chipotle. Realizing what the day meant and also remembering where we would eat after every depressing visit to the University of MD, Chipotle. It is true, after our appointments, Chipotle was on our way home to Easton. We would stop, drown our sorrow in a 'days worth of calories burrito' and head home. What a strange coincidence to be eating there on that day, only on much happier terms. As we sat there watching our Micah, sitting happily in a high chair, throwing his toys overboard and being every bit as "normal" as the other 8 month old at the table nearby, we had nothing to feel but extreme joy.
