Friday, May 21, 2010

Peace for Charlie

Our sweet baby Charlie, who fought so hard for the past 25 days, went to heaven last night, in the arms of Mom and Dad. The day so quickly spiraled downwards; it breaks our hearts to write this.

During rounds yesterday, we were all extremely hopeful. Charlie was doing well; the ECMO was on the lowest setting possible and Charlie was being a rock star, like always. The decision was made to attempt to take off the ECMO that afternoon. The only missing piece of information we needed during rounds was the follow up head ultrasound.

Shortly after rounds, the doctors came to speak to us. The small spot on Charlie's brain was indeed a bleed, with a part of the brain showing ischemia. Our baby boy had a stroke due to the ECMO. They were waiting for a follow up head CT scan in order to confirm their theory. While waiting, they decided to give Charlie a chance and clamp off the ECMO circuit, to test and and see how he could handle it. The first 20 minutes were golden - but his blood pressure suddenly started dropping, and he was not perfusing well. At the same time, they were watching his heart function on echo and found that there was no longer a pericardial effusion, however, there a was a collection of fluid in front of his heart, about the size of his heart. With all of this information, we weren't sure if Charlie would be ready to come off of ECMO after all.

The CT scan confirmed the stroke, however, and the decision was made for us. While on ECMO, Charlie had t0 be on Heparin, a blood thinner. This would only make the brain bleed worse. Ready or not, Charlie had to be taken off of ECMO. Before the decannulation, Dr. Sinha was to drain the fluid from the front of his heart, in hopes that it would help in Charlie's heart function. The doctors were very clear with us - if Charlie was unable to survive off of ECMO, he was not a candidate to be placed back on it. He was out of choices.

Mom and Dad read Charlie a book before his procedure, and then left to wait with family. It wasn't long before they told us our worst fears were coming true. Charlie's pressure had dropped with decannulation, and he was bleeding out from surgery. It was very unlikely they would be able to revive him with CPR, and we had the choice of going in and holding him, or making them do CPR. We chose to hold our baby boy during his last moments here on earth, without doctors and procedures. Just the four of us; mom, dad, Noah and Charlie - together one last time.

We are so incredibly proud of our sweet, brave boy. He didn't live long, but he put up a hell of a fight. He inspired people throughout the globe; prayers around the world were sent for him. We feel those prayers have been answered. Our baby boy will no longer feel pain; he will never have to have his chest opened again. He is in heaven, Noah's personal guardian angel. We feel overwhelming emotions...sadness, grief...but happiness that Charlie Baer will never have to suffer again.

We love you, Charlie Baer. We miss you so much, but we will all be together some sweet day.


  1. Praying hard for you and your family, Josh.

  2. Josh and Marina,

    Our thoughts and prayers are with you and your family during this time. May you find peace and comfort in God and family and knowing that Charlie is with Jesus and that you will all be reunited again one day.

    God bless your family.

    Christine (Poznaniak) and Jonathan

  3. I am so desperately sorry to read this. We have been following your story and praying for you all, and our hearts are breaking for you as you have had to say goodbye to your little Charlie, on this side of Heaven. Your brave, beautiful little boy will never be forgotten. Sending our love and support from across the pond. xxx

    'Breathe now great breaths of Heaven,
    'Run fast, all pain has gone,
    'Shout loud and sing, your heart beats strong now,
    'Precious little man.'

  4. Marina and Josh,

    We are so sorry to hear your news, we have read your blog every day. Last night after reading your blog Scott and I stopped and prayed for you and your family because we knew last night would be difficult. You now have an angel to guide you as you care for Noah, how beautiful. There are now words I know that are best during this time, but please know all of our thoughts and prayers are with you guys.

    God bless you and your family,

    Michelle and Scott Strain

  5. my heart if filled with so much love for you all! and so much sadness and so much gladness (what a conflicting time!) gladness for knowing charlie is resting, without pain in the hands of God, what an amazing place to be! he has been such an incredible human being, and he will be missed! thank you guys for sharing him with all of us. i love you guys and pray for your strength every day!! if there is anything you need, let me know.

  6. Dearest Marina, Josh, and Noah
    My heart is bleeding with this sad news. I love you all so much. I know that Charlie is in a nice pain free happy place now. Be at peace knowing he will always be there to watch over you all. He sure was a fighter! Both Jay and I send our love and prayers for your hearts to heal.
    Lots of love.
    Stacey and Jaysen Kim

  7. My heart is heavy for your family. I was thinking about Charlie last night, and how you guys have kept an amazing attitude throughout all of this. I am praying you find peace and comfort in the coming days.

  8. Marina, Josh and all who love Charlie,
    We have not met, but our son Matthew has been asking us for our prayers for little Charlie for quite some time now. What a beautiful little boy he was! We are so very sorry to hear of this deep, sad loss. Our prayers will continue to surround you these days, and we send you our love.
    Our deepest sympathy,
    Ana and Walt Beier from Duluth, MN

  9. I saw your blog through someone that was once a part of my church and I have kept up with your blog everyday and prayed for little Charlie. I know Charlie is resting peacefully in the arms of Jesus and is healthy at last. I hope you find peace in know that you will one day see him again. My heart and prayers go out to you and your family.
    Mandy Wroughton
    Willow Spring, NC

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  11. My prayers are with you and your family. I cried for the loss of Charlie. But I am glad he is pain free. I pray that you will feel God's loving, supporting arms around you at this time.

  12. Our thoughts are with you during this time of sorrow. May you find the strength to look ahead.

    Mario and Bernadete

  13. Lots and lots of tears for you. I have a CHD angel, as well, and am here for you on this sad, sad, journey. Much love to you.

  14. I saw your post thru a mutual friend. We lost our little heart baby Cali when she was just 7 days old after many attempts to correct her heart. My heart goes out to you. I know we've never met but you hold a place in my heart and my prayers will be with you in this difficult time.

  15. You are such a strong, strong family. I can't even begin to understand how this struggle has effected your lives. I'm terribly sorry and the hearts of everyone in my family go out to you.

  16. Marina and Josh, my heart goes out to you. Your courage and love have been such an inspiration... I know Charlie is proud of you. The picture of him shows such peace on his face. Lots of love to you all.
    Samantha & Nick Backer

  17. I recently was given your blog site from a friend as she asked for prayers for Charlie. We too have a Charlie at home, but have included your Charlie in our prayers ever since we learned of him and his difficult fight. Please know that you continue to be in our hearts and we will say a special prayer tonight knowing that your angel is watching from above. Matt and Jori Showalter Family, Hampton, Iowa

  18. I am so very sorry for your loss. Praying for you from a heart of understanding.

  19. We are aching for, so sorry. You are in our prayers and we hope you find peace in the knowledge that he is a shining star of joy now. No more pain or fear, just God's light. Annamarie, Paul, Jack, Elle and Eve (16 months, heart survivor)

  20. I am so very sorry for your loss!! Charlie is a beautiful boy. Know you're in my prayers and thoughts--fellow HLHS mom.

  21. I'm so sorry to hear of your loss. Three years ago, I lost my son to HLHS after his Norwood and 29 days of ECMO. If you would like to talk to someone that has been there, my e-mail address is

  22. I am so sorry for your loss. You and your family are in my thoughts and prayers.

  23. Marina, Josh and Noah, My thoughts and prayers are with you as you mourn the loss of your precious Charlie. His short life has forever touched the hearts of so many.

    Kindest Regards,
    Denine (an online friend of Patricia's).

  24. Jordan shared your story with us. I am so sorry for your loss. Charlie fought hard to share those days with you. He will always be with you all, looking down on you and watching over Noah. God bless you.