Fearfully but Wonderfully Made

Grace was wonderfully made. From my perspective she's also fearfully made in the respect that the way she was made has provoked fearful situations many times.

We just returned from the neurosurgery clinic. We reviewed the MRI results with the surgeon who, not surprisingly would like to do surgery. That's kinda how it goes. Our conversation went a little something like this:

Me: so what you're saying is that these two issues: a little longer than normal spinal cord, plus the presence of fatty tissue (both of which she was born with and have always been part of her) in the lower part of the spinal cord is enough evidence to warrant surgery.

Doc: Yes.

Me: You know for certain that the spinal cord is tethered?

Doc: No. These two things combined suggest possible tethering.

Me: So it might *not* be tethered.

Doc: Um...It's possible. We would look to any symptoms of tethering for more evidence.

Me: Such as...

Doc: Urinary incontinence, poor bowel function, lack of strength in legs, lack of coordination, numbness in the legs, trouble walking and climbing and general mobility.

Me: So currently we have no evidence of the things you just mentioned (I say this as Grace is pushing a chair all over the room, climbing on chairs). And with her being in a diaper still, it would be hard to tell. Although, she points to her diaper many times a day and then urinates or has a bowel movement.

Doc: Symptom wise these are all good signs.

Me: So if you do the surgery, and discover there is no tethering - the recovery is the same (laying flat on your back for 2 days sedated, discomfort, and then restricted mobility for a few weeks once discharged). There are more risks doing surgery vs. not doing surgery...surgery risks include: bladder and bowel problems, numbness, infection, headache, spinal cord leakage...

Doc: that's correct.

So this is a hard call for us. I brought up the fact that she Grace had a very difficult pulmonary recovery post cardiac surgery and laying flat for two days would not help her lung function especially if she would develop pneumonia. Being that we are headed straight for cold and flu season, it seems that this would be the *worst* time of year to be in the hospital and unable to move from a pulmonary standpoint. I'm planning on giving her pulmonologist a call.

It seems cruel, to me, to put her through an operation at this age, where she cannot comprehend why she needs to remain flat for a few days and then restricted for a few weeks. It's especially dodgy when  the risks from surgery out number the risks of not doing surgery. Oddly enough several of the risks of having this surgery are identical to the risks of doing nothing. There are risks of spinal fluid leakage post op which would require subsequent surgery and prolonged hospital stay. There is a high risk of infection because the incision is so close to the bowel.

Situations like this make life so exciting...

At this point - she has zero symptoms of any spinal cord tethering. They can only see two things that lead them to believe that tethering is possible, or likely.

So we left saying that we needed to think, pray, consult our other doctors and get their opinion.

It was not the morning I hoped it would be, because it seems there is no right safe, happy, answer yet - and there might never be. We could do nothing and regret that decision should those symptoms arise that she does not have currently. We could do the surgery and regret that decision should any of the common or uncommon risks happen. We could wait and see. Doing surgery at this moment in time would not affect her quality of life and as it stands her quality of life could very well remain the same or improve if we wait or decide against surgery at this time.

Would you pray that God leads us to what is best for Grace? Would you pray that the impossible is possible and that her spine is just fine? Would you pray for peace and wisdom as we seek the Lord and trust Him enough to be brave enough to act knowing He's in control; or brave enough to wait knowing He's able to heal her.

How do people do these things with out faith in God?
How do people do these things with out a supportive family and friends?

I'm so thankful I will never know.

What I *do* know, is our daughter is fearfully and wonderfully made. God formed her precious little body with all it's quirks and crookedness and beauty. I don't know why, but I know He knows and He has always known. That's good enough.

For you created my inmost being;
    you knit me together in my mother’s womb.
¹⁴ I praise you because I am fearfully and wonderfully made;
    your works are wonderful,
    I know that full well.
¹⁵ My frame was not hidden from you
    when I was made in the secret place,
    when I was woven together in the depths of the earth.
¹⁶ Your eyes saw my unformed body;
    all the days ordained for me were written in your book
    before one of them came to be.
¹⁷ How precious to me are your thoughts,^[a] God!
    How vast is the sum of them!
¹⁸ Were I to count them,
    they would outnumber the grains of sand—
    when I awake, I am still with you. Ps. 139: 13-18