Charlie is 2 months old and so far with him there have been more scary moments that haunt me then in my entire 12 years of parenting. Arianna & Henry have had moments where I was scared but those have been few and far between. Charlie though, Charlie has caused my heart to stop beating more than once.
When he was 4 (maybe 5?) days old he had an MRI I wasn't there for it Jeremy was. He did the mornings in the NICU and I did the afternoon then together we did the evenings. The MRI was in the morning so it was Jeremy's turn. They gave him two separate doses of morphine to keep him sedated for the MRI. When I showed up at the NICU it had been a few hours since his last dose. His nurse let me know he had a few apnea episodes but otherwise was doing okay. She was a bit concerned that he hadn't come out of the sedation yet and had paged the doctor to come look at him. The doctor came examined him and told me that he looked good and should be coming out within the next 30 minutes. Three minutes after she said that Charlie's heart rate and oxygen stats dropped. Then they kept dropping. I don't remember much but I remember the nurse rushing over, I remember a code being called I remember doctors filling the room. I also remember that I fled. I literally ran out of the room because I couldn't watch. It seems so awful that I left my poor baby in that state but I couldn't watch. They resuscitated him and finally pushed a dose of narcon which reversed the effect of the morphine. They hadn't done it earlier as you can't use it on preemies so they don't keep it in the NICU. That was not a good moment. That one haunts me the most. From watching him stop breathing, to the doctors rushing in to knowing that I actually ran away from it all. The worst part is I wasn't able to hold him after it was over. That night I wasn't able to hold him either the MRI had shown a brain bleed and they were doing a transfusion. I didn't get to hold him again until the next afternoon where I cried and apologized over and over for abandoning him.
At 9 days old Charlie was transferred from the UW NICU to Seattle Children's Hospital. Seeing him loaded up in a portable incubator (which he was almost too big for) was awful. I know he was safe but it was just such a hard thing to see. We thought when he left the NICU it would be in a carseat and coming home with us. But it wasn't, it was to go to another hospital where he would spend the next 3 weeks.
At 12 days old Charlie had a bone marrow biopsy. I was scared because once again he would be sedated. I sat in the surgery waiting room in absolute terror. Finally I just went back to his room to wait for him because I think my anxiety was causing other people in the waiting room to get anxious. They brought him back to the room and the nurse let me know that he did great except on the way back from recovery in the elevator he stopped breathing. She had to rush him off the elevator and grab the first doctor she saw to help her. Luckily he came out okay but just knowing that once again he stopped breathing and I again wasn't there just killed me.
I would guess that the entire three weeks where I stared at him so small in a giant crib attached to so many machines would also count as a haunting moment. The big one would be though when the pulmonary team came in to tell me that he was in respiratory failure. The doctor didn't believe in sugar coating anything and he was very honest about the situation. That one was hard. We thought he was almost able to come home and while you expect set backs you don't expect set backs like "your son is in respiratory failure". I learned this information in the middle of "shift" change with Jeremy. He was going home and I was staying the next two days. I again left though. I needed an hour to cry and scream int he privacy of the van.
When Charlie needed shunt surgery we knew that his breathing problems made the surgery riskier. What no one realized at the time was that he had a minor cold (not very symptomatic and what symptoms he did have we all thought was his reflux) and the surgery made that cold 1000x worse. I think they would have done the surgery anyway as the pressure in his brain was at dangerous levels. Seeing him in the PICU with a breathing tube down his throat is a nauseating image for me. Then when the nurse told me that they almost lost him while trying to get the tube in made it all worse. They couldn't get the tube in and for the life of him they couldn't figure out why. Finally someone thought to suction him and they pulled out a giant solid wad of mucus and after that the tube went in. The anesthesiologist told me it was one of the scariest moments of her career. I don't like hearing that.
Not long after that revelation our oncologist came to find us in the PICU. She wanted us to know that all of Charlie's tests were back. He did in fact have JMML. Unfortunately he did not have Noonan's Syndrome (noonan's meant no treatment and he'd be okay with limited intervention) but a rare genetic mutation. It was great finally having answers but also awful because of what those answers were. We waited two months to finally hear that he had cancer, not just cancer but a cancer he only had a 50% chance of surviving.
I assume that there are many more moments to come with Charlie. I am trying hard to become stronger and braver so that I can deal with these moments without running away or becoming a giant sobbing bucket of tears. But I'm not sure bravery in regards to watching your child be sick is something you can develop. I am sure no one will ever fault me for being a coward, or weak, or a big sobbing mess but I fault me. There are mom's out there who are strong and brave and kick ass and deal with it. I don't know how to be that mom. All I want is for my baby to be okay so that I don't have to be that mom. I want my biggest problem to be that he won't sleep through the night, or he has colic, or he has bad gas, or he will only sleep if someone is holding him. I don't want his biggest problem to be cancer. I don't want to have to figure out how to deal with that. Can I once again mention how grossly unfair life is???
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