Today we experienced a pain that you cannot describe. A deep sadness that physically hurts and changes every fiber of your being. Today we had to let our sweet Caleb go.
Early Thursday afternoon, we were told by doctors that the head ultrasound they did revealed that Caleb suffered a severe brain bleed, most likely occurring during the night. It covered about 6-7 cm of his brain. It’s the kind of bleed that leaves permanent and devastating damage. Severe developmental delays, the inability to walk, talk, etc. Coupled with his severe heart defect, this was not something Caleb would survive. The blood thinners that Caleb had to be on to go through surgery and keep the flow to the stent in his heart open likely caused the bleed. There is a risk for brain bleed since preemie’s blood vessels are so tiny and fragile. Any future procedures on his heart would be impossible due to the fact that he would need those blood thinners, and most heart procedures are done on bi-pass, which requires them as well. No surgeon would ever perform them since he likely wouldn’t survive them and this wouldn’t improve his quality of life. Brain bleeds are unpredictable and you cannot treat them.
The feeling of being told something scary and serious is one that seems to slow down time. You know that what you are hearing or about to hear is going to hit like a tidal wave, but your mind and body fight to process this. I hate that feeling of not being able to breathe, the ringing in your ears, and a racing heart. This happened when Dr. Bailey said she needed to share some difficult news and that a team would like to meet with us in the conference room.
Walking in that room and sitting with doctors that had their heads hung and hands clasped together- it was a heaviness that was tangible. I sat staring at the NICU doctor with over 30 years of experience as he told us about these devastating findings. At one point, my mind put this all together. I lunged forward in my seat and struggled to cry out- “You’re saying he’s not going to make it?!”. He reached for my hand, shook his head, and said, “No, I’m so sorry”.
Adam and I sat and cried so hard with these doctors all around, the sadness in their eyes mirroring the devastation in our hearts. Why had things gone down hill so quickly!? He was doing well, we had good reports each day! I could feel the waves of realization washing over me. The desperate feeling of trying to cling to something as you’re falling. This was it. This was the one worst thing we could have imagined.
Dr. Engstrom’s words quietly repeated in my head- “When you’re gripped by fear and think that the worst of the worst is happening, think about what this truly means. If we were to lose him that means he gets to meet the face of Jesus”.
We sat together after they left the room. We cried in each other’s arms. We cried painful tears. We cried out the “Why’s?” and “How’s?”. We desperately tried to put a firm foot down to stop the spinning world around us. After some time we went back to his room and spoke with several people about how to even begin moving forward. Through tears we spoke about when we should let him go, having a baby dedication conducted by the chaplain, the Childlife team to help Aaron and finally with the amazing nurses that arranged approval to have our family come to see not only Caleb, but Gabriel as well. It would be arranged for them to bring him to be with all of us and to lay with his brother one final time.
We were told that there was no rush. We discussed what would happen to his body if we waited. None of these scenarios were something we could fathom putting him through for the sake of our grief. We knew that what he deserved was to be in the arms of the Father, to see Jesus face to face. Caleb fought from the time he was first developing in the womb. He fought so hard the day he was born. Doctors fought to keep him alive. He continued to fight while lying there with so many tubes and machines. There was no need to fight anymore. God didn’t want him to have to struggle or fight any longer.
This morning, Adam and I had the chaplain come and do a baby dedication for Caleb. We committed him to the Lord and prayed over him. The day before, the chaplain shared with us that he himself is a surviving twin. What an amazing thing this was to hear. Dr. Schwartz came by the room (The other interventional cardiologist that conducted Caleb’s first surgery and spent hours afterwards holding the bleeding entry wound on his leg from the catheter procedure) and spoke with us, offering condolences and expressing his sadness for Caleb.
Aaron and grandparents were able to come in and meet our sweet boys. We shed tears together, celebrated together and spent time loving on each other during this unimaginable situation. We made a handprint canvas, created castings of hands and feet, and held these babies tight. After family left, it was time to do what nothing in this world EVER prepares you for- letting our baby go. There is no pain that matches this. There is no way to prepare. You are forced to reimagine your world without him when you spent so long imagining him in it. You are losing not just a child, but a lifetime you’ll never get to witness and be apart of. The pain of this is gripping and one you know that will never go away. A pain you learn to live with- and hopefully use to create some good someday.
Our dear friend Amber Scavo said this to me- “Remember you are on holy ground- that tender place where the veil is pulled back. It is like nothing you will ever experience, but God will meet you there. He is faithful and He is good. You can do this. You are Caleb’s mama and daddy and exactly what he needs in every way”.
We let him go in the most peaceful of moments. We talked to him and prayed with him and cried for him. We experienced peace as we knew he was meeting Jesus and finding a peace like none other. We gave him back to God. We know we will see him again and embrace this sweet boy who is now “Whole-hearted” and completely healed.
A question we all ask in dealing with death, especially untimely death, is “Why?”. We have talked about this repeatedly since Thursday evening. They truth is, in Caleb’s case, I feel that the purpose of his short time here on Earth was to make an impact and impression on not just us as a family, but others as well. Even people we do not know. I never anticipated using a blog to process and cope with this journey. I never anticipated sharing it. But through telling his story and the story of these twin boys, we have experienced the most amazing love and have gotten to share the most amazing love of the doctors, nurses, heart warrior families, hospital staff, and everyone who has reached out to us. For our family, he has changed our lives completely. You realize how fragile life truly is, what is important and that we can choose a side of the coin. We can choose to walk through this world with the incredible faith that has brought us so much strength. It isn’t easy, but it will bring you through the most unimaginable times you can’t even fathom going through.
We would like to ask a favor from anyone and everyone who has followed our journey, even just recently. We would love for those of you who feel comfortable, to share with us how Caleb and this journey has impacted you. We know you never got the chance to meet him, but we are so touched to have heard from several of you that he and his story, and the story of these twins has made a difference. Whether it be a comment on this blog post, an email or Facebook message, we know that the week he had on this Earth was impactful.
Thank you for every single prayer, message, text, gift, etc. We are overwhelmed and sustained by God’s grace and the blessings you all have been to us. We will stay in Charlotte until Gabriel graduates from the NICU and is able to come home. I will continue to update with how he is doing, arrangements for Caleb, and prayer requests for the difficult days to come. Please continue to pray for us. We need it now more than ever. God has wrapped his arms around us and we know each of you have as well. ❤️
13 thoughts on “Our Heart Warrior Has Gained His Wings”
Amy and Adam
Words cannot express the sorrow I felt learning of this yesterday I consider myself a spiritual person, I faithfully said my novena every day for Caleb and Gabriel. I asked why to Mary, I pleaded and begged to make Caleb’s heart whole. To carry him through to be a healthy little robust boy along with his brothers Aaron and Gabriel. I was disappointed – Mary hears our prayers and brings them to her son who fulfills them!
Reading the blogs daily and following updates, it dawned on me especially yesterday that she had heard my prayers, she had carried you all through, she did enable him to be a robust little guy-but he will now be an angel for his brothers, they will always know he was a fighter and was destined to be an angel. In his short time here on earth he has reminded me that faith runs deep and is sometimes complicated that our prayers are always answered even when it’s not the way we imagined it or wanted it
I said this before Amy and Adam, the strength and love you have shown throughout this journey-I am in complete and utter awe-I will continue to keep praying and reciting my novena for your family. Love and many hugs to you both💕💙💙💕
I have prayed continually since hearing about the arrival of your two sweet blessings. Caleb has brought love and light into this world. You and your husband loved him before you even knew he would be, from the time you decided to start trying, your hearts were filled with joy and love for the little one that would come. Your love for him would grow once you found out you were pregnant and continued to grow as you journeyed through pregnancy, labor and life. You, Adam, Aaron and Gabriel will continue to carry and spread that love for Caleb and from Caleb with all that you meet, as he watches you from Jesus’s arms. Caleb has brought special, deeper kind of unity to the Ross community. My prayers will remain with you and your family. Sending up prayers of love so love can rain down from heaven.
My heart is with you and your family. I know that we do not know each other but I also lost my heart warrior 2 years ago. I am here for you all when you need to talk❤💙
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Oh Adam and Adam, my heart is broken with yours. I’m not sure if you remember me, I’m one of the Hogan cousins. We’ve been praying for your sweet boys since the day they were born, and will continue to hold you in prayer for the tough times ahead. We lost our daughter in 2015–she was stillborn at 35 weeks after a completely normal pregnancy. I found writing to be very therapeutic (and started a blog as well), and I encourage you to continue writing, Amy. Your words are beautiful and I know Caleb is so proud of you. Sending you all my love.
Amy & Adam, so very saddened for you & your family. Thanks for your courage in sharing this heart-wrenching experience. May it be a source of help to other couples dealing with their losses.
Leslie & I are thinking about & praying for you both.
Steve & Leslie Rainey (Salem’s parents)
I am so sorry for the loss your family has experienced that is unlike any other. You both have been so strong and been just the parents that Caleb has needed. Your ability to function in the best interest of Caleb shows just how great you are as parents. I wish you both peace amongst the grief and that each day you find joy as a family. ❤️
Amy & Adam,
I’m so sorry for your loss. My heart breaks for you both and I can’t imagine the pain of loosing a child. Reading your blogs and seeing how people have come together to pray for Caleb, Gabriel and your family and to help in other was have showed me there is still hope for this world. Caleb is now in the arms of Jesus and he is whole again with no pain, no tube and no machines. He is your little guardian Angel that will be at Heavens gates to welcome you one day. I will continue to pray for you and your family. May God give you all strength, comfort and a peace that surpasses all understanding.
Love ❤️ Hugs 🫂 & Prayers 🙏🏻to you all.
During this difficult time, let me offer my condolences
Lord, please heal their broken hearts. Fill them with the peace and joy I know can only come from You during this hard time. Walk closely beside them during their journey to healing and recovery that I know is possible through Your power alone. In Jesus’ Name, Amen.
Dear Amy and Adam,
I am so so sorry to hear about sweet Caleb. But God chose you both to be his parents and He makes no mistakes. He has known that sweet Caleb from the womb and his short life had purpose whether we can see if right this minute or not. Treasure your memories and the grief for both will make you stronger. God is still walking right by your side through this pain. Prayers are being said and your family will be blessed.
It is through tears that I write these words. The last time I spoke with you was the day you and Adam were married.Though we live miles apart, I heard about your recent posts from others and I asked that they be forwarded to me. As I read your words my heart was deeply touched. Your and Adam’s expression of faith is a holy testimony to everyone around you. Real faith speaks life in the most difficult of times. Your voice and Caleb’s life are having an eternal impact on many. I can’t imagine the grief you all are going through right now. We are praying knowing that God intimately knows what it’s like to lose a son. To know that His Son Jesus is now holding Caleb safely in his arms, brings a calm during this time of great sorrow. That same Jesus has promised to one day wipe all tears from our eyes. We love you.
Beautiful words, so eloquently said. My heart is also saddened by the challenges and loss your family has endured. I was fortunate to work as a NICU nurse many years ago while serving in the USAF and remember how close we became with the families. Yet, reading about your journey it felt different for I am also blessed with sons and I thank you for sharing your thoughts. My sister-in-law, Tena, shared your story with me knowing my experiences. My youngest (of 2) ended up in a step down NICU but the situation was much different from yours. I give thanks for my sons every day and send you and your family my prayers and love.
We met briefly a couple years ago at Jason’s Deli when you were having lunch with Tiffany and I with my friend Cindy. Tiffany has shared your story and blog with me. There no words to express my sympathies to you and your family – it rocks me to the core. Caleb’s life and the story you tell have impacted so many people; I’m sure of it. Your faith is inspiring and I know He will carry you, hold you, and uplift you, now and always.
“But those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.”
Sending you love and prayers,
Amy, Adam, Aaron, and Gabriel,
The bible says for everything there is a season. But a time to grieve and a time for joy are not usually intertwined like what you are going through. You have my heartfelt sympathy. My sons Michael Poston and William Poston mean the world to me. A parent is supposed to pass before their children. You will somehow find a way to carry on. You must for the love you have for your surviving family members. Comfort each other. I know that the day of my Dads’ funeral my sisters and I cried until we had waterless tears then we took a break and laughed and smiled for the best picture of us ever. You can do this!!!