Wow, yesterday was rough. Joey and I barely made it out alive. Finn, however, remained strong post-op: even temperature, no breathing tubes, steady heart rate, soft whimpers, small sticky bowel movements and pain medicine-induced stupors.
The day began early with visits by my doctor, the nurse’s assistant (who checks my temperature every three hours…it’s really fun), the all-too-chipper nurse, someone wanting me to fill out a hospital survey, the overzealous lactation consultant, the housekeeper, room service, friends and two visits by the urologists who insisted we should not maintain hope that Finn will pee on his own…”All SB children need cathing or surgery. Yours will be no exception.” All this before 11:00am. Our parents said their goodbyes and we were on our own.
A little respite came as I got to enjoy “skin time” with Finn. In a recliner next to his NICU crib, they laid him on my bare chest, covered us in blankets and we reveled in an hour of human contact. Although I had to stroke his back amidst all the tubes and bandages, his skin was soft and warm and I felt a little like a mommy. Joey’s turn for skin time came later that night…and Finn didn’t even complain about all daddy’s chest hair.
This beautiful experience with Finn was quickly interrupted as the neonatologist requested our presence in a conference room. We expected a debriefing on Finn’s progress, but instead were drilled with questions about family history and our lifestyle habits. The purpose of the meeting soon became clear: “After reviewing Finn’s CAT scan and analyzing his severe case of hydrocephalus (fluid on the brain), you should expect some degree of mental retardation. It may be mild. It may be quite severe, but it will be present. After watching you visit him, I got the impression that you had no idea of his mental challenges and felt you needed to know the truth.” He showed us the CAT scan to “prove” Finn’s demise.
Joey wheeled me to our room in silence. The all-too-familiar sobs began. For five months we have been preparing ourselves for Spina Bifida, a neural tube defect that affects everything below the lesion in the spine and sometimes implies developmental delays or learning disabilities due to hydrocephalus. We were prepared for the possibility of math tutors, speech pathologists…not severe mental retardation. We felt like we were starting at the beginning. Like this was a whole new prognosis. Not only will Finn be unable to walk, pee, poop or stand on his own, he may not be able to engage in relationship with us? He may not be coherent enough to communicate? He won’t be capable of making friends?
Too much. Too overwhelming. More than we could handle (Yes, I believe God often gives us more than we can handle…not more than He can handle, but friends, this is MORE than we can handle.)
We were numb; in shock. We were in the valley and there was no way out.
We called our doctor, the neurosurgeons and the nurses for a second opinion, but could reach no one. A sleepless, hopeless night ensued. I’m glad Feb. 29th only comes around every four years.
This morning, we awoke at 5:00am for some more “skin time” with Finn. Somehow things are better in his presence. We met with the neurosurgeons when they came by for their rounds and told them about yesterday’s interaction with the neonatologist. They were more hopeful, as they perform these surgeries for a living and see all kinds of cases and miracles (whether they acknowledge them as such or not). They reassured us that though there may be some developmental delays or learning disabilities for Finn due to the amount of pressure on his brain, there is no guarantee of any brain damage. They warned us not to look so far down the road, to take it a day at a time and not to worry about the mental challenges that may lie ahead. Our specialist came by later to check my incision and he said basically the same thing: that everything is unpredictable at this point and that Finn’s shunt surgery tomorrow will help release the pressure and drain the fluid on his brain. Only 10-15% of SB children experience some form of mental issues. Things aren’t so grim. They could be, but it isn’t guaranteed. Especially when The Healer is involved.
Please pray these things with us:
-Finn’s brain drains properly and completely tomorrow as a result of the brain shunt surgery
-The shunt is placed correctly and a revision is not necessary
-Finn’s brain matter expands, giving him all he needs for communication, comprehension and critical thinking
-Finn’s head compresses back to normal size
-Finn’s legs begin to move
-The doctors are coherent and precise during surgery
-Peace comes “like a river” for Joey and I. Though we are trying to remain hopeful, our faith is fragile.