Doctor Updates

We had a head ultrasound and appointment with neurosurgeon today.  Her ventricles look good.  Her left one is normal and appears to be functioning as it should!!  We are still unsure if her ventricles are communicating or not (we want them communicating or sharing fluid).  The right ventricle is still slightly enlarged.  Part of what makes it look so large is due to the fact that when Bella had the massive brain bleed, the blood spilled out of the ventricle and onto part of her brain.  This area of the brain was damaged by the blood.  So, she is missing a small portion her brain.  What does this mean?  Possibly nothing, or it could mean some more significant disabilities.  We have the good old "wait and see" approach.  Our neurosurgeon is amazing and always helps me look at the positive.  She reminded me to "treat the patient, not the scans".  Meaning that Bella is so neurologically appropriate for her adjusted age so focus on what she is doing and not what her scan says.  This is great advice.  It is still hard for me though.  The doctor is giving Bella about another month to see if her brain can figure things out.  If not we will be placing a permanent shunt. 

Bella also had her home visit with the therapists yesterday.  They too feel that she is right on track for what a 1 month old should be doing.  The whole adjusted age thing takes some getting used to.  Everywhere I go, I say she is 5 months, 1 month corrected.  People kind of look at me funny sometimes.

I took some pictures today after her bath.  We had to change her o2 cannula and "dots" so I took advantage of having her completely free of tubing to take some photos.  In some of them you can really see the "softball" sized pocket of fluid on her head.

I am still learning lots as we continue on this journey.  I am not always great at explaining things but here we go.  I have learned that to really be able to "accept God's will or plan for us" is easier said then done.  I have learned that it is ok to pray for what I feel is the best as long as I remember the Lord knows better then I do.  I struggled for a while, wondering what I should be praying for.  Should I be praying for Bella's head, eyes, body to heal or should I be praying to accept the God's will no matter what.  The answer I got was that it is absolutely alright to pray for the best outcome.  So that is what I do.  I pray that her head will heal without needing further surgery.  That she will grow and develop normally and meet her milestones on time.  I feel these are good things to pray for.  But I have also realized that God will mold her and me and our family in the best way.  Maybe that will happen just like I am praying for.  Maybe it won't.  What I know is that God is good.  That this life is temporary.  That eternally we will all be well and whole.  That we are meant to struggle to grow.  Does that mean I love the situation that we are in or that I would have chosen this for Bella and our family?  No, it doesn't.  What it means is that I know that no matter what, Heavenly Father will be by my side.  He will provide a way for us to make it through. 

Do I struggle to be ok with our current situation some days?  Yes, yes I do.  Do I cry, almost daily.  There are happy and sad tears.  Happy the day Bella looked at me and smiled.  Sad for the days when I ponder on the unknown.  I read an article recently about "what is normal".  I am struggling to find our new normal.  What does that normal mean for me, Matt, Bella and the rest of the kiddos?  I don't quite know yet.

Prayers for continued healing and being able to accept God's will.