“Far be it from me to not believe
Even when my eyes can’t see” – Bethel Music
I’ll never forget the one truly joyful moment of this pregnancy. We were sitting in our first ultrasound at 8.5 weeks, Blake and Hadley were there, Hadley couldn’t sit still and Blake was trying to wrangle her. It was an exciting appointment to be at. We were hoping to see a little heartbeat, that’s all we wanted. After the miscarriage at Christmas time we were hoping to see that little flutter. I remember so vividly looking at the big screen and seeing the outline of a baby and shortly after, a flickering heartbeat. I looked over at Blake who squeezed my hand and gave me the biggest grin. I remember seeing his smile and thinking “don’t forget this moment, it’s so good.” As quickly as that joyful moment happened, it was gone. It took 19.5 long weeks for Claire to pass away and go to heaven and it was the most devastating thing I have been through but I will always remember that one sweet moment, the calm before the storm.
I don’t really know how to do this post, It’s not something I ever thought I would be experiencing, let alone writing about. I am just writing it as it comes to me and hope that it all makes sense when I am finished. My heart was broken repeatedly the past six months and it all started at eight and a half weeks when I was told our newest baby had a “Cystic Hygroma” something I had never heard of and something the doctors didn’t say much about. I was told I would need to be seen by a specialist at twelve weeks to see if this condition was worse or better. So I went home to google what all of this meant. Dr. Google is a scary doctor but this was like nothing I had read online before, story after story ended badly. The prognosis for a baby that is diagnosed with a CH falls into a few categories, 1. the baby has a chromosomal abnormality that caused the CH to form, this is a poor prognosis as most babies will not survive until birth but there is a small chance that they will 2. the baby has a heart defect (which can’t be fully diagnosed until later in the pregnancy due to development) and there is a much better prognosis if the heart condition is treatable with surgery 3. the baby has both a heart defect and a chromosomal issues in which case the baby’s life prognosis is less than 1%. We would eventually learn that we were the latter. I was seen at 13 weeks after we returned from a vacation back home. I know that our families were super supportive and did their best to help distract us from the heaviness of the looming upcoming appointment but if I am being completely honest I vaguely remember that trip or any of the weeks prior. When we returned from our trip Blake immediately had to leave for a work trip so I walked into this appointment alone, informed and cautiously optimistic that our case would be the one that resolved and that the doctors would be blown away by how quickly this issue disappeared. Unfortunately, this was not the case. I sat through a forty-five minute ultrasound were I could visualize the large growth on the back of our daughter’s neck and spine and I watched three different specialists rotate our of the room as they quietly whispered to each other and took measurements. I too was very quiet, I thought I would have a million questions but my mind was blank, all I really remember was laying on the ultrasound table as countless tears streamed down my face. I kept telling myself that we would could fight for this baby and that if we fought hard enough she would get better. Looking back on it now I know that I was in shock, and just trying to process what I was seeing. After the ultrasound was complete I went into a small corner office with a genetic counselor and the head specialist, this was my chance to ask anything I wanted and get some answers. This is when I found out just how bad our girl was doing. We learned that she had a heart defect, one that would most likely be treatable if there weren’t a string of other issues but there were other issues, lots of them. They could tell that she had multiple severe indications of some form a chromosomal disorder but weren’t able to give me an exact diagnosis without more invasive testing (something that we turned down). Her Cystic Hygroma was almost the size of her and the placenta between us was slowly bleeding. We would also come to find out a few weeks later that she did not develop a stomach or bladder. I also developed Hyperemesis Gravidarum around week 11 which had me in and out of the hospital from being constantly sick.
I was given a lot of information and I am still very grateful for the medical professionals I was able to see as they never once pressured me, guilted me or made me feel like I was bugging them. There were weeks where I called daily with endless questions and they were nothing but compassionate. The specialist even went as far as to give me his cell phone number to help us through everything.
We decided that we wanted to pick a name for our girl, because even though we knew we wouldn’t meet her she deserved a name. We chose Claire Mierelle Martin. Claire meaning pure and Mierelle meaning miracle. I absolutely love her name and am so glad that we chose it.
The weeks passed, appointment after appointment and her little heart kept beating. I also got sicker and sicker, I had more pain, more bleeding, more complications. The doctors assured me that they thought her heart would stop in the next month or so. So we waited, and waited. Weeks carried on, I grew bigger and felt her kicking constantly. Things that would normally be reassuring to a mom but were a painful reminder for me. I knew the reason I could feel my baby kick early on and why I had a prominent belly was because she was too swollen. I shouldn’t be able to see and feel her like that, it was a constant reminder that she was not okay. Looking back though, I am glad that we felt her kick and that there was some form a physical sign that she existed. It was a gift in a strange way. I didn’t realize that I would need those moments to look back on at some point in my healing.
I will say that I have never prayed so much in my life, I remember begging God to save her, to take her, to carry me because I was broken and needed carrying. I needed Him to remove the burden of a heavy decision that I didn’t want to make.
*Sigh* I debated heavily if I should share this next portion of our story because I know that it opens a door for opinion whether it is invited or not. I want to share it though because we saw God move in a miraculous way during this period. I think it’s the biggest part of Claire’s story and it wouldn’t be right to withhold it for fear of what people might say. As I mentioned, I was physically in a state of turmoil. My body was in constant pain and the longer I carried Claire the higher risk I took on for my health and life. The specialist had informed us on a private call that carrying her for too long if she kept hanging on (with the help of my heart doing all the work) that I was at an urgent risk. We came to the decision that if Claire had not passed away by 20 weeks old we would hand her over to God ourselves. I prayed long and hard and the date August 4th came to me. I looked at Blake and said, “I can hold on until then, I can handle the physical portion if it means giving her a chance to go on her own.” The doctor’s agreed that up until 20 weeks they felt comfortable monitoring me and after that the risk would go up because of her size and the placenta issues we were having. I cannot tell you how difficult this decision was for us to make. We knew we couldn’t save her and we also knew that my life was at risk the longer I carried her. We prayed, cried and begged to be delivered from having to make that choice. When I say that I cried I should probably use the word wept because that’s what I did. I agonized, I begged for guidance. I begged to know if we were doing the right or wrong thing. Believe what you want but I was constantly guided in the direction of the choice we made. The date August 4th being reinforced constantly in my heart. I talked to her one night on the shower floor as I bawled telling her that I loved her and that I was fighting as hard as I could but there was nothing her dad or I could do to save her. I had to survive now, I had to be there for Hadley and for her dad and I would give anything to keep her but she was not mine to keep. As the weeks carried on my physical issues got worse, and I remember looking at Blake and saying “she isn’t doing okay, she is dying, I can feel it”. This was on August 1st. On August 3rd we drove to Richmond for the upcoming procedure the next day. We spent the day walking around shops, eating our hearts out and watching The Office. It was actually a great day together, which I appreciate now. it was our last day with Claire. That night as we laid in bed Blake said goodbye, I said goodbye, and we prayed over her. I realized in that moment that I hadn’t thought much about Blake needing to say goodbye and that she needed to be released not only from me but from him too. We cried and fell asleep with his hand on my belly and I felt her kick for the last time. At some point in the next couple of hours her heart stopped. When I woke up I knew, I told Blake “she is gone” I grabbed the heart doppler and couldn’t find her heartbeat. We went into the hospital where the procedure was to take place and my body took a very bad turn. I started getting uncontrollably sick, my body was in tremendous pain and I had started to bleed. The doctor who was coming to help was in the middle of a delivery so we had to wait. The nurses took me back to O.R. as soon as they could and all I recall before falling asleep was crying and saying “this isn’t fair”. I woke up to the doctor standing near me and to Blake who was holding a very tiny set of footprints. Claire had her sister and daddy’s feet and seeing them brought me so much joy in such a painful moment. The doctor informed us that Claire had indeed passed away the night before or in the early morning. I sat there broken, bleeding, crying but rescued. I knew that God took Her home. I knew that He had been faithful to what I had pleaded for.
The day I decided to schedule the surgery for August 4th I prayed for a direct answer, I told God that I needed something as guidance and this verse was given to me, Isaiah 41:13: For I am the Lord your God, who takes hold of your right hand and says to you, Do not fear; I will help you.” I share that because I believe that God took our Claire home but I also believe that no matter what could have happened He was there to hold me and help me through it. God knew our hearts and I don’t regret making the decision that we did. We were faced with a decision that no parent should have to consider but I know that God walked with us through that valley. I know that there will be other parents that have to walk this path one day and I pray that you can take comfort in knowing that you are not alone and your heart will heal. It won’t ever be the same but it will mend and you will take away a new found beauty through all of the pain. I wouldn’t want to relive this or do it over if I had the choice but I can sit here now and say that I learned a lot from Claire and that even though her life was short and painful that I am happy to have been the only person that held her while she lived. Part of my heart is in heaven and part of it is right in front of me in the form of a sassy two year old. I am mother to a beautiful little girl named Hadley, a wife to an amazing man and they are worth fighting for just like Claire was.
I revisited two songs throughout the time Claire lived and that was Even If by Mercy Me and It Is Well by Bethel. Those songs and reading scripture provided a rock to hold onto when it felt like I was in the middle of a hurricane. I never once believed that God did this to us. I never blamed Him. God is good, God loves us, He wept with me. His heart broke for His child who was suffering because she lived in a fallen world that had sickness in it. I know that God walked every step of this path with us. I know that He has our girl in heaven. I know that Claire is playing with her two siblings and her grandpa Brian. I know that because God is good we will see her again.
I know You’re able and I know You can
Save through the fire with Your mighty hand
But even if You don’t
My hope is You alone
They say it only takes a little faith
To move a mountain
Well, good thing
A little faith is all I have right now
But God, when You choose
To leave mountains unmovable
Give me the strength to be able to sing
It is well with my soul.