Monday Morning
Monday morning came all too fast for everyone. Micah and I finally fell asleep probably around the time the sun was coming up. We slept for about an hour or two, then showered and went back down to see Miracle. We were able to spend more time holding her, talking with her and just being with her. Her levels were more stable than the night before, and she didn’t seem to be in too much pain.
But. It was agonizing. Heartbreaking. Gut-wrenching. We knew what was coming. One moment I was experiencing the most joy I had ever experienced in my life, and the next moment I was thinking about what the next 24 hours were going to look like. I knew.
Several different doctors came to assess Miracle in the morning. The head neonatologist along with a resident and two medical students wanted to have a meeting with the team of doctors. They wanted us to start thinking about goals that we wanted to have for Miracle’s life and what our priorities were for her life. We also met with the neonatal palliative care team which helps the families of patients with serious illness focus on quality of life. They encouraged us to also think about goals that we had for Miracle while she was still with us. The geneticist also came to take some measurements. He explained that from what he has seen so far, Miracle showed all of the signs of having Thanatophoric Dysplasia. However, he could not confirm the diagnosis 100% without genetic testing which could take 6-8 weeks. He went ahead and took some measurements of her body for further indication of her diagnosis. After we met with each of these teams, we decided to have a meeting at 11:00am to hear more about each doctor’s opinion and experience with this condition, what the next steps might look like, and what decisions we needed to make.
At this point, Micah and I took a walk to get coffee and to breathe before the meeting. I remember throughout the morning being in a fog. Walking through the hospital seeing so many people. I remember walking the halls crying and crying, unable to control any of my emotions. These emotions were like nothing I had ever experienced. I didn’t care who saw me or what they thought. The only thing I could think about was our daughter. Like I said above, I had so much joy when I held Miracle, but I also felt that I had been placed in the biggest nightmare of my life. I was really hoping this was all just a dream.
The Big Decision
{This post has been sitting in my drafts for quite some time. I couldn’t bring myself to write it out. Words do not express the depths of my pain in this heart-wrenching decision.}
Monday morning around 11:30, Rockele, Meisha, Helena, Micah and I met with a large medical team to discuss the diagnosis. Some of the medical team included the head neonatologist, 2 resident neonatologists, geneticists, many NICU nurses, palliative care doctors, child life specialists, a music therapist, and a social worker (I may even be missing some people).
It was in this meeting that the expected diagnosis was brought to light. In order to fully diagnose Miracle with Thanatophoric Dysplasia, a geneticist would have to do several blood tests and those tests would take 6-8 weeks to confirm a diagnosis. However, the geneticist did take measurements and take a look at the x-rays that were available. With that information, he was quite certain that she had this rare genetic disorder. The head neonatologist (who was probably in his 60’s) said that he has only seen maybe 5 cases of Thanatophoric Dysplasia in his time at UICH, and in each case the baby passed away either in the womb or within hours after birth.
Most of what was said after the diagnosis is a blur. Each doctor gave his opinion on what they thought the best option would be and what their limited experience had been with Thanatophoric Dysplasia as well as what their research told them. Unfortunately, it did not look good. We knew this going into this meeting, but now it was official. There was no hoping for a different diagnosis or hoping for a way out of the situation. We had a daughter with Thanatophoric Dysplasia, and she was fighting for her life.
They explained that the level of oxygen she was on currently was going to be enough maybe for a little while longer (could be hours or a couple days at best), but eventually she would need to be put on a machine that did 100% of the breathing for her. At that point, the palliative care doctors and child life specialists took over. They explained that no matter what decision we would make (today or sometime in the near future), their job was to honor our wishes for Miracle’s life. They wanted us to begin thinking about the kinds of things that would be important to us to have Miracle experience as well as things that we would want to experience while she is still with us. They gave us quite a few ideas and were very kind. I could not imagine having their job. I don’t know how they do it.
After the information over-load (yes, that is exactly what it was), we all needed a short break. Emotions were running high and we needed to discuss things as a family. They left us alone and we made the decision. We didn’t want to have Miracle live through a breathing machine. We needed to let her go. But, we weren’t going to make the decision unless every single one of us (Rockele, Meisha, Helena, Micah and myself) were on board.
This was the hardest decision we have ever made, and it is the decision that haunts me every day (even still). How are you supposed to make the decision to turn off the machine that is keeping your baby alive? It doesn’t seem right. I know that I didn’t kill our baby, but we were the ones that said “yes” to turning off the machines that were keeping our baby alive.
Monday Afternoon
After we made the decision, we went down to the cafeteria to eat. Deleon and Delonte were hungry, and although the rest of us didn’t feel hungry, we needed nourishment. It is so true that you really are in survival mode when going through traumatic events. I never felt hungry, and although I didn’t ever feel like eating anything, I usually found myself to eat just a little of something. That little bit of food seemed to get me by. After eating, Micah and I took the boys back up to Miracle’s room. We let Rockele, Meisha and Helena take a break. I carried Delonte and just a few minutes after leaving the cafeteria, he fell asleep in my arms. That boy was so tired. Both of them were. They were so exhausted. They didn’t understand the depth of what was going on, but you could see the sadness and stress in their eyes. They knew something wasn’t right. It felt good to hold Delonte. He fell asleep in my arms, and when we got up to the room, I continued to hold him for a while. Both of the boys ended up taking naps, thankfully. It gave the rest of us time to discuss more details.
We decided that after dinner and once the boys were in bed, we would turn off all of the machines. We also decided on some things that we wanted to have as keepsakes. These were things that the hospital provided for us at no cost. Micah and I were blown away at the generosity, kindness and support that the hospital showed not only Rockele and Miracle’s birth family, but also to us. Since there was no legal adoption, they could have at any point told us to leave. But, the staff saw us as Miracle’s parents just as much as Rockele. We were very thankful for that.
One thing that we decided was to have molds made of Miracle’s hands and feet. We also wanted to have a professional photography session so that we would have photos to keep. We also were able to pick out an outfit for her to wear once she was off the machines, as well as an outfit to wear after she passed away.
I felt pretty overwhelmed by everything that was happening. I remember walking over to the window near her room (it was really a hallway). I began to cry, crying turned to sobbing, and sobbing turned to weeping. I have never experienced sadness to this extent – even through the 4 years Micah and I had experienced with infertility. Nothing could ever compare to the grief I began to feel. I lay on the floor, unable to get up, struggling to breath. I didn’t know if my life was worth living without my daughter. I hate that I am typing those words, but it is true. I wanted for the pain to leave, to hit the rewind button. But I knew it wasn’t possible. I realized I was broken into a million pieces. My heart physically hurt from the pain.
The Hallway
I was on the ground in the hallway just next to Miracle's room. Sobbing uncontrollably. I remember several people - Micah, Meisha, a nurse all coming over trying to console me. I couldn't breathe. I wanted so desperately to put myself in Miracle's place. I wanted to be the one that they took off of life support. I didn't sign up for this. I didn't want to walk this road. I thought we would be going home with a baby. Not an empty carseat and a suitcase full of baby clothes that would never be worn. No, no, no.
It was in this moment that I felt the furthest away from God that I had ever felt up to that point in my life. If God was really good, then why more and more suffering? Had I not suffered enough? I so desperately wanted to become a mother. I finally get the chance, only to have it stripped away from me just days later?
I sat in that hallway for at least an hour. I would have sat there longer, but I quickly realized that my time was very limited with Miracle. I wanted to spend as much time with her as possible. I knew we didn't have much time left. I got up, entered her room and asked the nurse to help me hold her (we couldn't just pick her up like a normal baby - with all the tubes, we required assistance picking her up, holding her, etc.). I sat in the rocking chair rubbing her head. The tears never stopped.
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