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. ❤️