Wednesday, May 6, 2009

Wow..... talk about a cliff hanger hu? So sorry. Life got OUT OF CONTROL around here.... but I am back now :) And ready to try and finish this story. Or at least this part of this story.... since Nathaniel's life is an ever evolving story!

After all of my calls on Friday Mark and I spent the weekend doing a ton of research. My belief has always been that knowledge is power, so I was going into this battle as armed as I could get!

We looked up the surgery on the Internet.... it was so new that there were NO printed publications on it AT ALL! The more we learned the more terrified I became of one thing... THE SHUNT. I thought I could deal with the orthopedic impairments, I knew I could find strength to deal with the bowel and bladder issues, and nothing was really written (that I noticed) about the extreme behavioral issues, but that darned Chiari Malformation and the Shunt... terrifying! And we already knew that the child I was carrying had sever Hydrocephalus and Mild Chiari Malformation. The one interesting thing was that all the research kept pointing to a decreased need for the shunt with the babies that had the surgery...Food for thought and prayer!
About this time this really cool picture had started circulating around pro life groups.....

This photo features a 21-week-old human fetus (Baby Samuel), still inside his mother's uterus (womb). The photo was taken during an operation (Vanderbilt Univ, 1999) to correct spina bifida, a congenital condition.

The other thing that we spent the weekend doing was getting our affairs in order. I mean I was only half way through my pregnancy, and who knew how long I would be hospitalized for...Being the Organization Queen that I am, I cleaned house, made sure all the laundry was done, paid all the bills, made lists of EVERYTHING anyone might need to know to take over for me, and basically tried to take control of my out of control life. Only latter would Mark and I laugh at this... such a noble attempt to control SOMETHING that weekend!

So, back on April 17, 2000 my husband and I got up at 4 am and headed up to UCSF for a marathon day of testing, introductions and many prayers.

We met with Jodi early that morning, and she was our guide for the day. I had another round of ultrasounds, a full blown physical from the OBGYN there, we met SO MANY Doctors I was dizzy from them all! We got to fill out two or three trees worth of paperwork and give our life story so many times that I thought I was stuck in a constant replay world. Some of the doctors were excited about the prospect of the new surgery and the benefits to the unborn child. Some of them were cautious, not wanting to get our hopes up. Others were full blown pessimists, pointing out that if I had the surgery there was a good chance the baby would die, if I didn't have the procedure there was a good chance the baby would live. Talk about a roller coaster! We toured the fetal surgery recovery area of the hospital, we toured the OR, we went in circles and circles and circles... and my little brain went onto OVERDRIVE.... it was all so overwhelming.

The one theme that we kept hearing ALL DAY was that there were no promises. UCSF had only done this procedure 4 times... In one there were compactions and the baby died soon after. In one the surgery went well but the mother couldn't carry far, and the baby was born VERY premature (around 25 weeks). In one the mother and baby did well, mother carried to 29 weeks, but the baby still needed a shunt. And the fourth one..... she was still pregnant! Four procedures.... we would be the fifth.... was I ready to be a lab rat????

Then the last appointment of the day came. The one I had purposely been putting out of my brain, for it made me nauseous to think about it too much.

The Fetal MRI......

Ever had an MRI??

You know those BIG machines that make LOTS of noise.....

And did you know that I am MAJORLY Claustrophobic????


But the things we mommies endure for our children. I climbed on in there and prayed m way through the first round of images. I held SO STILL there was NO WAY these images were going to have to be redone! I was so proud of myself :) Even Mark was impressed with how well I did! Then the technician came in... and her face was NOT GOOD. She said it seemed that I had a frisky baby in there.... and that baby was moving WAY TOO much... we would have to redo ALL of the images! I broke right down and cried! This was sheer hell. And HOW to you get a fetus to how still for an MRI??? You can't give them a sedative. You can't reason with it. You just wait it out. And out. And out. Three and a half hours latter, two MAJOR breakdowns on my part, and the patients of a saint on the techs part, we FINALLY had passable images. It seemed that every time the machine noises would start my baby would think it was music to dance to.... UGH!

When the darned MRI was FINALLY over, so was I! I was overwhelmed, stressed out by being around all of the strangers, tired and cranky! Basically the last person on our list told us "you have all the info, the surgery is set so you just have to call us and let us know. Bye now" So weird to me.... but I was so done! I wanted to GO HOME and think. That hadn't been the plan. The plan had been to stay there and figure out what we were doing. One little problem. I don't like cities. I don't like lots of people. I am not comfortable in unknown areas. I was stressed out, on information overload and NEEDED my comfort zone! So at about 6 pm we got back in the car and headed south. Mark was pretty confused by this time, but being wise, he chose to shut up and go along with what I said. Smart move since I had the keys to the car and the only drivers licence between the two of us :)

Now was this a smart move? NO WAY. I had been up since 4 am, stressed out all day, had a tone of information to process, and decided to drive four hours home.... WAY NOT SMART! Around Gilroy (about 2 hours south of San Francisco) I decided it wasn't safe to drive anymore so we pulled over to get a hotel room for the rest of the night. Now notice I didn't not say to SLEEP the rest of the night... that was NO WHERE in my plans. I had information to process and a decision to make. Now Mark on the other hand just wanted to sleep. I am sure you can see the basic male vs. female differences in full play here... and I can ASSURE you they were ugly on this particular night! I grabbed my bible, worship CDs and journal out of the car.... Mark grabbed the overnight bag (catching a theme here??) I sat down and started writing down everything I could remember from the day.... Mark got changed and headed to bed.I kept asking the "Do you remember what that Dr said about such and such?" questions... and Mark kept asking when I was going to sleep. Once I finished writing I started seeking answers out of His word. A thought would come to me, I would look up scriptures surrounding that thought, and on and on. Thus the Lord and I conversed much of the night. Every once in a while I would come up with something enlightening and I would wake Mark to share it with him. On and on the night went. I felt like I was running in circles, but had no idea how to stop the circles.

The question came to me.....

What would I tell my child when he or she was a teenager or young adult IF I didn't have the surgery and IF it became main stream medicine....

If that child asked me

"Mom, why didn't you do this for me before I was born?"

WHAT could I answer????

I was too scarred???

I didn't trust God??

It was new??

Yea... I couldn't come up with an answer that I would be willing to give my child 20 years down the road.....
Okay God, I get it. If I can't come up with an answer I would give my child, then there isn't one to give you either...

So, yet again, I woke Mark up....
Me: "Hey Mark I need to have this surgery"
Him: "Yes, I know"
Me: " So we are going to do this?"
Him: "Yes, we were always going to do this.... you just didn't know it yet."
Me: " UGHHHHH!!!!"
Me: "WHERE are we going to do it??" (at this point I was leaning heavily toward trying to go to Vanderbilt because they had done it so many more times..)
Him: "You'll figure it out soon..."
Me: "Are you going to help me?"
Him: "No.... God is. I am going to sleep...."

Back to the prayers..... I must have prayer for hours.... Then I finally shut up and listened.... REALLY listened for the voice of God. But I don't think I really expected to HEAR the voice of God! You could have knocked me over with a feather when, clear as day I heard Him say:
"It will be MY hands that heal your child, no matter where you go."

The Lords hands...... NO MATTER WHAT.... NO MATTER WHERE... it's all in the Lord's hands...

I cried with relief... I finally KNEW! We were having the surgery.... and here at UCSF, because it was all in the Lord's hands! And HE could do a miracle here in Ca just as easy as if we ran all the way to Tennessee! The LORD would guide whoever was working on us... HE would heal us!

I woke Mark up one last time that night... and asked him:

"Don't you think we should NAME this baby that will be having surgery tomorrow?"

(yes, by this time it was WELL into Tuesday, and we still didn't know if the baby was a girl or boy and it wasn't named yet either!)

So much to do... always! But at least I had the Lord's peace now!

This is the web site for the current study going on about the procedure if you know anyone who needs the info or would like to read more yourself: