His first MRI

Lucas was such a champ yesterday at the hospital! This boy continues to amaze us. He was sleepy and content in the car ride over, and started to get a bit fussy while we were waiting for the MRI to begin, but sucking on esther's finger seemed to satisfy him just fine. We held his hands as the anesthesiologist administered gas to put Lucas to sleep so that they wouldn't have to put the IV in his arm while he was awake. An hour later, we were at his bedside in the recovery room, and within 10 minutes he was awake enough for Esther to feed him (and boy was she ready to!)

Yesterday wasn't actually his first MRI, by the way. If I were a proper blogger, I'd have started this thing a long long time ago (that's what last August feels like today anyway - a long time ago) - back when I heard God tell me in the desert of Baja, Mexico that we would have a son and that we should name him Lucas.

Baja, Mexico

2 weeks later, Esther was pregnant (very unplanned) and our world was changed forever.

A lot has happened since then. A whole lot.

At our 20 week ultrasound, the doctor took concern with Lucas' brain development. After more ultrasounds and a fetal MRI, Lucas was diagnosed with holoprosencephaly - a rare brain disorder where the right and left lobes of the brain fail to correctly divide. We were given lectures about how horrible this diagnosis is, and spoke with many doctors who had no faith. Fortunately for us (and for Lucas) - we did have faith. A lot of faith. And we know that doctors get things wrong (at the same 20 week ultrasound, they told us that he was going to be a girl!), and weren't going to allow a diagnosis determine the future of our baby.


20 week ultrasound

When we first found out that we were pregnant, I began reading the Bible to the baby twice a week before we went to bed. Once we got this diagnosis, I began reading to the baby every night - and continued that throughout the pregnancy. With Esther reading to him in the morning, and with me reading to him in the night, we figure that we've read through the entire Bible with him while he was in utero.

As we got closer to 40 weeks, we found out that Lucas' head was very large - due to excess fluid in his head. We had taken a 10 week Bradley class that focused on natural, drug-free childbirth, but it was apparent from the size of his head that a natural birth wouldn't be possible. So we scheduled a C section for May 14th - 2 days after Esther's graduation from nursing school.


Graduation Day Pinning Ceremony - May 12th 2007

During the C section, the nurse (Tammy - who Esther did a preceptorship with a few weeks earlier) was cleaning up our baby and said "Didn't you tell me that you were having a girl? This here's a boy!" My heart leaped, knowing that it was Lucas - and that God's hand really was in this. I mean, we knew God was in this from the beginning, but now we really knew. Esther and I had never settled on a girl's name, but as we wheeled Esther and our new baby back into the room, we proudly announced to stunned family and friends that "his name is Lucas".

Lucas' head size was much larger than we expected at birth - because of the excess fluid, and so the day after his birth we were whisked away to the NICU at St Louis Children's hospital so that he could have a shunt surgically installed. Lucas spent a week at the NICU, and Esther and I slept in a room on the same floor as him during the entire time. The shunt has done it's job well, and Lucas's head has shrunk down about 2 inches, and his brain has expanded to it's normal size now that the pressure has been relieved in his head.

At Children's Hospital, Dr Leonard (his neurosurgeon) told us that he wasn't ready to say that Lucas had holoprosencephaly (HPE), because the fluid was preventing them from getting a clear picture of his brain. The MRI yesterday gave Dr Leonard a clear picture, and it was clear from those pictures that he does in fact have holoprosencephaly.

If you read about HPE on the web, you will see that it almost always comes along with facial deformities and asymetrical features. This is not the case with Lucas. Also, Lucas is not exhibiting any of the motor skill delays that are common with the disorder. He actually is advanced for his age in motor skills, and is coming along nicely in his head movement and vocalizations. So - we know that his brain is not normal, but we don't know what this means for his life, since each case of HPE is unique. We have no doubts that God has great plans for him, and that Lucas is a wonderful, precious gift and we couldn't ask for a better son. We have the highest hopes that Lucas will live a normal, joyful life, and we will continue to update you all on how he continues to wow the doctors.