This is not a note we wanted to write.
It’s been longer than we wanted between updates but it’s been a really rough couple of days. On Monday we had a Family Meeting at the hospital with the neonatologist, a physician’s assistant, a nurse, the head of nursing in the NICU, and a social worker. The point of the meeting was to get our questions answered and come up with a plan for what is best to do from here on out.
The doctor had spoken with the neurologist and they had come pretty much to the same conclusion. The abnormal brain activity they’ve seen on the EEG, the level of seizure activity they have seen, her lack of muscle tone and the fact that they’ve seen really no improvement since her birth has led them to give us a pretty bleak outlook regarding her future. He told us that it is unlikely that she will ever be able to do much, that she will likely not walk, talk, eat on her own or possibly ever be alert enough to know who we are.
He said that her life expectancy would not be long as the likelihood is high that she would aspirate (breathe food or saliva into her lungs), catch pneumonia from that, get an infection whether in her lungs or from hygienic issues or from being in one position for too long.
I apologize if this all sounds very detached or clinical. Please consider it a mode of preservation at this point. I really can’t explain what it’s been like these past couple of days because they feel so intensely unreal.
Every night before we leave her we say a prayer thanking God for giving her to us and asking Him to heal her. We thank Him that though her life has been only twelve days long and only in the hospital, she has made already made an impact for His Kingdom. We commit her every night into the loving hands of the One who made her and ask that He would be glorified in her and in us.
As we go on we continue to covet your prayers and ask God to reveal His plans and wisdom to us as we try to understand how best to walk the road He has set before us. We still believe in our God who can work miracles for His children and for His glory and ask that you would faithfully go before Him in prayer for miraculous healing that would amaze the medical world.
In August of 2009 God changed our lives by giving us a beautiful little girl. Lydia was born with Zellweger Syndrome. Lydia went to be with Jesus in April of 2010. This is the story of her life and death, and of our journey through grief in search of healing.
Jen,
ReplyDeleteI can only imagine the pain you are going through right now. I know it is quite a bit to think about and i'm not sure you want someone to talk to who has been through something similar and could maybe just listen or even offer some advice. My parents went through something very similar with my sister and I know my mom would be more than willing to listen, answer any questions or just talk. There is always hope and you should keep praying. My sister was given the same prognosis, she would never walk or talk or be anything more than a vegetable and my parents were told to put her in an institution... but by the grace of God she is alive and well at 15 walking, talking, learning and loving... i'm not trying to say that your situation will or won't turn out the same way but the power of prayer is amazing.
We stand with you in agreement before our God. To Him be all the glory and honor. Amen Amen Amen. ~Lori & Tony
ReplyDeleteAnd a friend of mine had a 10 week premie (barely 3 pounds at birth) who endured a stage 4 brain bleed and rare almost fatal blood infection. She was told the same thing you were just told. Now he is 3 years old and running around lighting up everyone's life with joy, laughter, and songs. Picture the prayers of everyone rising up and being poured out on your precious Lydia - God bathing her in His love, mercy, peace, and power. We love you.
ReplyDeletePraying for God's grace and strength for you and Micah each of these difficult days and grateful for your continued confidence in the One who knows, hears, and answers.
ReplyDeleteMy prayers continue for God's peace that transcends all to be with you and Micah, His healing hand be upon your daughter, His courage and strength be with you as you make the difficult decisions ahead, wisdom for baby Lydia's doctors, nurses, and other caretakers, and the gentle, loving presence of our Heavenly Comforter for all of your family.
ReplyDeleteJenn, I can't imagine. I cry every time I read your posts because your heart must be breaking. I am so, so sorry for what you're going through. I hope that despite all of what's happening, that you feel surrounded by love and peace.
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