The River Church Community

10/22

Dearest Angel Helpers,

It's been another set of tough days; without God I know I would no longer be able to bear all that has happened to our precious daughter.  Even with Him in my heart, I falter as I struggle to stand up only to find that as I catch my breath, I am driven down again and again.  In my time down on my knees, I cry out to Him for mercy, not for me, but for my Hannah Jane.  Please have mercy on her; she is so sweet, so innocent, so pure – is there any way to pass this from her onto me?  How can it be that this happening?  Through it all she struggles and fights and I am ashamed that I break down so often trying to be strong.  And here she is, this beautiful miracle of God who has very special “milestones” already -- she was conceived eve of Christ’s birth and born on 9/11 – the day of such tragedy for countless people, not only our nation, but for the world.  She is so very wanted and loved, our precious miracle girl after a miscarriage two months before her conception.  Y  et, she has been a strong girl from the beginning; her life in my tummy was full of challenges all along with spotting, then later bleeding and to sustain her, I needed progesterone injections given to me by her Aunt Cindy, a choroid plexus cyst at 18 weeks, the placenta abruption with contractions coming every minute at 31 weeks, and so much more.  Still the Holy Spirit nestled her in my womb and grew her into the most beautiful girl there is and her Guardian Angel surrounded us both.  Now, outside here in this world, I must find a way to constantly surrender and trust the Holy Spirit to comfort her, to lift me up in trust to Christ and to surrender over and over and over and over again.  And just when I think I can bear no more tough times and news for Hannah Jane, Christ asks me to walk out the edge of the cliff and jump once again and trust that somehow, someway He will catch me even as I feel I am coming crashing down on the rocks below. 

Today: Brain Injury/Damage
Truly today my heart feels shattered and I am praying that He can mend me back so that I can be renewed to hope and trust more deeply each time I crawl to that cliff to go over the edge and once again fall.  The CT scan from last week showed that her ventricles are still severely enlarged.  Today we were told that her right ventricle is so enlarged that it extends almost to the outermost part of her brain and that there is brain damage.  The extent will not be known until she is 3 years old.  His physical exam shows what he calls a catch in her left arm and left side.  He said that her seizures occur with her left arm and that is indicative of the damage done on the right side of her brain as well.  The right side of the brain controls motor function, speech etc.  He has seen babies with this level of damage have various levels of disabilities from a slight speech issue to children that cannot speak and need a wheel chair for life.  He could not promise us what her outcome wo  uld be.  He has referred us to two more docs for her, a pediatric developmental doctor and another specialist in addition to the occupational therapist and physical therapist.  I asked if that fact that she moves her legs well that she would walk, but he said this is not a predictor.  I refuse to call what is happening “damage” – I must believe that even with his diagnosis of this that healing and wholeness belong to Hannah Jane.  He can do anything, He is the miracle worker and whether His plan for her is to have developmental/cognitive disabilities or not, I must trust in Him.  He formed her and planned all the days of her life; I in my humanness, struggle so hard as to WHY this happened and so much more happens day by day – I pray that He use this in a way that will glorify Him, how I do not know.  But, I pray that she be comforted in the way that only Christ as I am a very flawed human who tries to be a comfort and encourager to her as her mommy, but know that ev  en in her short life, I have already failed in countless ways.  May she forgive me my flaws and sins and be lifted up in Christ.

Last Friday: Red Blood Cell Transfusion
We found out on Friday night from a phone call from Hannah Jane's pediatrician after she had yet another blood draw that revealed a very low red blood cell, hemoglobin & hematocrit  that during Hannah Jane's surgery at Stanford she was given a transfusion of red blood cells due to blood loss.  While we had signed an authorization for a blood transfusion for her, we were never told that she had this transfusion done during surgery and that even before her discharge her numbers continued to be low and that a possibility of another transfusion would be needed for her.  Very frustrating that once again her care at Stanford was not handled well!  I had asked for a blood draw when we went to the ER two weeks ago because I was concerned that her tummy may have been upset because she was getting too much iron.  Thank God we went to the ER that night and that God put it on my heart after talking with Pat to have her level checked.  If her next blood test on Thursday is still low, she  will need another transfusion.  I am looking into donating my blood as she and I are the same type; I was unable to donate for her brain surgery because I had just had the cesarean and they don’t allow it so soon after that surgery for me.  Rod is getting typed to see if he can donate and whether there will be time to process our blood for her.  Her doc hopes that the low number is because of the blood loss in surgery and stress of surgery and hospital stay, but we will have to wait to see.  Because of this situation and because of his increased concern that she not travel unvaccinated (her vaccines are due on 11/11 – her daddy’s Birthday) we are trying to get her cord blood procedure at Duke on 11/17 instead so that she has her vaccines for 2 months.  Am so grateful for this procedure and pray that it can help Hannah Jane.  It broke my heart to see the video that Stacy Dow sent with the little girl trying to scoot along on the floor and not able to crawl, may God spar  e Hannah Jane these struggles. 

Shadows
I do trust in Him to heal either in a moment or bit by bit – I must continue to release any preconceived ideas of what that healing is, but trust in Him that He has a plan and that it will bring glory.  How I do not know, and yet, somehow I must continue to raise my face to His light as each new day dawns and look to moment by moment renew my faith in Him.  May you, too, lift your face and allow His warmth to bring light into the places of destruction in your life.  May we together discover that the darkness that surrounds us when we feel so alone be transformed into the shadow and comfort of his wings.

1 Be merciful to me, O God, be merciful to me, for in you my soul takes refuge; in the shadow of your wings I will take refuge, till the storms of destruction pass by.

Blessings and Love,
Shannon

10/17

Hi Angel Helpers,

It has been a very tough road the past two days especially.  Hannah Jane has found her voice, which is a blessing.  The super hard part is that she is crying in distress a lot.  We took her to her doc on Wednesday because of it was not "average" baby fussing, she was distressed.  He thought it might be gas, so have been giving her drops.  Yesterday had a lactation visit and she was absolutely inconsolable during it and wouldn't nurse via breast or bottle for a long time.  Finally got her a bit of bottle and then she spit it up because she had cried so hard and had lots of air in her tummy.  We have another doctor's appt to get her checked out this morning.  The crying could be irritability from the phenebarb I was told, but her neurologist will have to determine that.  After weeks of no sound her intense crying while a blessing that she is now able to express herself hurts me that she is so uncomfortable.  Because I couldn't get her to nurse and didn't pump with so many docto  r's visits recently, my milk production is way down.  I have started pumping last night and didn't get much.  It also may be a supplement that I am taking for mood balancing, am checking with the pharmacist on that.  Please pray that this changes, Hannah Jane does so much better on breast milk than formula and I need to have enough for her.  My heart is in a discouraged place when I feel so helpless and my esteem dives down when I can't help her more or am too stressed out to be balanced.  Thank you so much for stopping by and allowing me to share this journey with you.  I am praying for you too - may our hearts continue to be restored and our minds renewed in Christ.

Love,
Shannon