The first day of our little girl’s life was very eventful. It began at 1:33am with Luna Bell being born, but not being able to breath on her own she was intubated and rushed to the NICU. She had chest tubes to drain the fluid from around her lungs and IV’s and monitors on every part of her 4 lbs 15 oz, 12.6 inch body. Kevin spent the night with her, curled up in a chair in a small NICU room, keeping an eye on our little girl. He texted me with updates, while I learned how to pump breastmilk, and texted friends and family to let them know Luna Bell had arrived. As they monitored her and did tests, the NICU doctors had many discussions with the neonatologists at Seattle Children’s Hospital, and it was decided that Luna Bell would be moved to Children’s via ambulance. A very serious doctor and Kevin came to my room to let me know what they wanted to do, and get my consent. Of course I gave it after they tried to explain the treatment they had planned for her, but my exhausted mind and body that hadn’t rested since the afternoon before, couldn’t seem to grasp what they were telling me.
Because I had just had a c-section not even 12 hours earlier, I couldn’t go with her. It had already been decided weeks ago, that anywhere she had to go, Kevin would go with her and I would follow as soon as I could, but we reiterated that to each other, and Kevin said that of course he would go with her. And as Kevin and I watched the nearly 2 hour process of getting Luna Bell ready to be moved, I was trying to be strong on the outside, but inside I was falling apart. My daughter was hooked up to monitors and IV’s, she had a tube down her throat with air being pushed into her tiny, fragile lungs to keep her alive. She had tubes in the sides of her chest to relieve the fluid that had formed around them in utero, and she was medicated into sedation to keep her comfortable and calm. And each of those monitors and tubes and IV’s had to be switched over to a mobile incubator so she could go on the first car ride of her life. One that they needed to make in about 10 minutes, because of the generator that powered the incubator and monitors and most importantly the ventilator keeping my daughter alive. The plans they had for her at Children’s were serious. They planned to put her on ECMO. https://www.chop.edu/treatments/extracorporeal-membrane-oxygenation-ecmo And as I watched the amazing transport team get her ready, I was forced to acknowledge that this may be the last time I would see my Luna Bell, my miracle baby, alive.
I sat in a wheel chair, Kevin sat in a chair that a very kind and helpful nurse got for him. He drank tea, I drank some ice water and we hardly spoke. What could either of us say? We were watching our little girl get ready for a trip that she might not survive, and if she did, she would be put on a machine that could save her life, or just be a rest stop on the way to the end. I was forcing myself to be positive, and while he may have been doing the same, Kevin came across confident that she would survive the ambulance ride and the ECMO would help her lungs heal and give her the best chance of survival, because she absolutely would survive and come home with us.
The nurse came over to tell us that the transport team was getting very close to having Luna Bell ready for the trip. Kevin and I held hands and kissed and he reassured me everything was going to be ok, that he would be there every step of the way and that he would let me know how things are going as soon as there was something to report. We went over to the transport incubator as they completed switching over the power, and stated they needed to go now. I told my little girl I loved her, for what might be the last time, kissed Kevin and they were gone.
I sat in the hallway, trying not to cry as a really kind nurse asked if she could take me back to my room.
Once I was back in my room, the enormity of the situation finally hit me. I cried. I cried that my little girl was suffering like this, that she might not make it, that if she did make it through the first 24 hours she would probably have a long road of healing in front of her, that I hadn’t even held her yet, that Kevin had to do this alone, that I had to do this alone, and that I still hadn’t slept.
About 10 minutes after Kevin left with Luna Bell, he texted me that they had made it to Children’s safely. And about 15 minutes after that, he called me to tell me that they weren’t going to do ECMO after all. Our girl was sick, but not that sick. They were going to re-intubate her so that the tube was more stable and they were putting together a plan for her. By the time I got there to see her the next day, they should have a better idea of the kind of care she would need.
Knowing that she was safely at Children’t Hospital, that Kevin was with her and that there literally was nothing I could do from my own hospital bed, I finally took a nap. It was short nap, soon interrupted by a kind, well meaning nurse who came in with water, medicine, and a little help pumping my breastmilk. This was the first I had slept in about 24 hours, but somehow it seemed impossible to sleep, when down the street, my daughter was struggling to stay alive.
Soon my mom and step-dad arrived. And no matter how old I get, there are times when I just want my mom. After a visit and catching them up on the latest, they headed for the hotel room. I was left alone again, trying to stay focused on getting myself physically ready to leave the hospital the next day, but wishing that I was with Luna Bell and Kevin. I finally was feeling the day. The pain of the surgery, the exhaustion of being awake for so long, feeling hungry and a little nauseous all at the same time, and longing to hold my daughter but also wishing that I could sleep forever.
At Seattle Children’s Hospital, they were taking amazing care of not only Luna Bell, but Kevin as well. They had set him up with a room just a floor up from our baby, and I would be able to join him there the next day and stay there for at least a few nights. Kevin’s cousin showed up to see Luna Bell and take Kevin out for a much needed dinner and a little breath of fresh air. Once Kevin was back with Luna Bell he called to let me know she was doing ok and that he couldn’t wait for me to be there the next day. As difficult as it was to be away from my daughter and Kevin, knowing that they were together was a huge comfort.
I fell asleep for a little while and woke up to a text coming through my phone. Luna Bell was doing well, and Kevin was visiting her after he had a little sleep as well. He told me he loved me and to go back to sleep, things were ok. I agreed to try to get some more sleep, but before I did, I looked at the time. 1:33am. She had made it the first 24 hours.