The River Church Community

11/18

Hannah Jane had vomitting am unsure why yet.  Awaiting blood levels, but she is stable now.  She is awakening some  screaming  in discomfort from the IV and splint; please keep praying.

11/18

Infusion is complete (they said at 1pm we'd have another hour wait til 2 pm but 5 minutes later Dr Kurtzberg came in so no time then to send update; sorry.

After two IV attempts.  So hard to hold her when she is crying so much hurting but I kept praying and humming I love you, Lord the song I sang all my pregnancy to her.  Rod gave her sweeties (sugar water from doctor) while she sucked on my pinky; thank you to Polly for showing me that with Trent before Hannah Jane was born.  She is on IVs now for several hours; will update later in the evening.

She is resting in my lap as I type this into the phone. Thank you for your blessed prayers!  Our guardian angels watch over her with me as yours are for you too.

11/18

We are checking into the hospital at 10:30 am but the infusion probably won't begin until 1 pm.  I will post closer to the time it starts and am asking you to send up a prayer of peace for Hannah Jane and strength and courage for me.  A reaction similar to what happens during a blood tranfusion is possible (swelling tongue or breathing, heart rate, blood pressure issues etc.) but usually will occur in the first 10 minutes.  She'll be there until 7 pm or so if all goes well.  So blessed to have your prayers; thank you!

11/17

It's the night before Hannah Jane's infusion and she's sleeping so sweetly right now.  I've been crying today and struggling to not buckle to my fears for my precious daughter; were blessed to get a meeting with a Duke neurosurgeon, Dr Grant today.

Worries re Future
We discussed her prior MRIs and pathology report.  Concern that the ventricles are so severe still especially on right side may inhibit current and future brain growth.  Her next MRI on 12/3 will tell us if this is true and if tumor is growing. Is still possible that she has aquductal stenosis and with catch in left arm, floppy trunk (hypotonia), tongue thrusts found out today that these can point to cerebal palsy.  If MRI shows concerns, development/cognitive issues get worse  more surgery (third ventriculo.) or shunt will be needed to reduce ventricles as her csf may not be reabsorbing or they push her brain too hard to let it develop.

For God's Glory
So what can I do with these further painful thoughts and findings?  I can and am realizing that the tumor and possible more surgery and cerebal palsy and disabilities is not of God or created by Him, but because He is God, He can take this often painful journey and turn it to His glory- only He could take this pain and use it for good.  I do not believe that He has abandoned us; I know He is carrying me, Hannah Jane, Rod and that He is carrying you too.  Jesus cried out to God why have you forsaken me?  God had to do this so that He could fold us as flawed people into His arms and that is where I must believe that we live - his little ones always.  That cliff that I often feel I am crawling to and fall off of is when I wrestle with my fears and waver in surrendering and begin yet again to ask WHY my precious daughter and not me?  I must surrender yet again, trust that His staff is to guide me; not to hurt.  May I leap into this new chapter of this journey with faith and coura  ge.  Last night the Spirit of God spoke to me and said, Be still and know that I am God.  As I go to sleep and pray on this may God lift you into His comforting arms and may your hearts be filled to with His love, mercy and hope and I pray that I learn to surrender yet again  and grow in Christ's light.

11/14

Wanted to share that even on this 5 hour drive frm Virginia to Duke in the mist and rain I feel His sun on my face still!  So deeply blessed that we are taking Hannah Jane for her infusion; God is amazing in His miracles using medical procedures.  Dr Kurtzberg may be doing the earthly part; but the glory is God's, and His alone.  We got a last minute call from Corporate Angel Network to fly with Verizon Executives from Oakland to Dulles.  We rented a car for the trek to Duke and are on the road singing praise music with nursing stops.  :). We canceled  Continental to save her from exposure to germs especially since she got sick on Moday but unfortunately we couldn't get the refund but are so glad she was able to nurse easily and without excessive exposure.  Precious Hannah Jane needs to nurse now; more updates soon.