Ezra

Yesterday Ezra went for his first road trip down to the MRI.  The results came back quickly and we both knew that when that happens it's never good.  During this whole journey we've asked God for his guidance and clarity according to his will.  He answered that prayer yesterday.  Ezra's brain has been extremely damaged, to a point that even if the progressive damage stopped right now it would most likely not be compatible with life even without all his other medical issues. It showed that he had fairly significant damage a while ago, maybe even when he was in the womb but we can't say for sure because as soon as he was born we had to sedate and paralyze him.  He also has had progressive global damage over the last week, meaning damage has occurred in every part of his brain.  The seizures most likely started in the last couple of days but again we weren't able to see this until the paralytic was off.  The swings in his blood pressure that we thought was from the fluid shifts may have been those happening.  It's hard to say exactly what has caused this for sure but what they think has happened is due to the pressure caused by his abdomen and hypoplastic lungs there has been compression on the venous blood vessels that caused congestion to a point that normal flow out of the brain was inhibited which caused back up in the brain and therefore damaged it in all areas. They also think this is what may have caused the chyle leak. Unfortunately there was no way of knowing this was happening and there is no way of stopping it now even if we do know.  When looking at his future he would most likely never be able to ever get a kidney transplant with this extent of brain damage. The neurologist said if someone presented this case to him he could not ethically approve a transplant. He also would most likely get epilepsy around his second year of life and we would be very limited to what medication he could be on because of his kidney function. He also wouldn't be able to eat, walk, and would have very limited to no way of communication. We of course would never be able to know for sure about this but based on medical knowledge and the way Ezra is presenting himself now this would be the case and that is what we have to go by.  We have chosen to listen to Ezra and to God that this life on earth is not meant to go on.  As painful and heartbreaking as this is we are so thankful that God has shown us this clarity and we have been able to love on him and cherish him for these last four weeks. The joy Ezra has brought to us and many others is indescribable.  This news came as a shock to everyone involved in his care.  He had many people crying over his bedside yesterday, including the whole NICU team.  As tears were running down everyone's face in the room as they told us the news we continued to be comforted in unsurpassing peace and the realization how deep Ezra's short life has touched people. God has performed miracle after miracle during this process, much to do with all the prayers lifted up for his sake, and even though this doesn't seem in our selfish minds like the right outcome we know it is the best one because it is God's plan, not our own.  He has shown his presence during this time so many times and we will forever look back and be grateful at how much that presence and those miracles have grown us in our faith and relationship with God, each other, as a family, with friends, and complete strangers.  But now it is time to let go. As we were reminded yesterday, just because we can continue on doesn't mean we should.  In some ways it feels like we are giving up hope in another miracle but then we are gently reminded that our greatest miracle has already happened and that is the gift of Ezra's life.  A life that was placed in our hands. Being able to be called Ezra's mommy, daddy, sister, and brother.  As a family we were trusted by God to trust God.  It has opened our eyes so much to how much of an honor it has truly been to have been a part of this journey of Ezra's.

The plan moving forward will be to spend time with Ezra today, hold him for the first time, celebrate his life tomorrow, and let him go to the arms of Jesus on Monday.  Ironically Monday, December 12th was the day he was suppose to be born with a planned c-section.  Now it will be the day he is born into heaven and he will be restored with no more pain or broken body.

We can't tell you how much we've appreciated you all joining us in prayer.  Our one last request is to ask that you also join us in celebration of his life over the next few days as well. As we do will be listening to the song below-

https://www.youtube.com/watch?v=XQan9L3yXjc

With love,
Jeff, Nicole, Mikayla, Malachi, & Ezra

I will praise you, Lord, among the nations; I will sing of you among the peoples. For great is your love, reaching to the heavens; your faithfulness reaches to the skies. Be exalted, O God, above the heavens; let your glory be over all the earth. ~Psalm 57