Friday Jan 10th. Today is Capris 6 month birthday. I never thought we would get to see this day. We had a whole birthday party planned with Child life specialist. We know that our reality is we may never get to celebrate a birthday with Capri. So we decided early on that if she made it to 6 months we were going to have a celebration. Being in the hospital was not exactly how we planned this day. We are going to make the best of it though. The hospital cafeteria made us a rice krispy cake and we got capri sweeties (the sugar they give her to suck on her binky when they are drawing her blood). Child life brought us streamers and a balloon. They gave us a bucket filled with poster boards, paint, markers, crayons and stickers. We had bubbles and christmas presents that she still hadnt opened yet because she has been in the hospital so much. We were going to bring the kids in and have a family party and take pictures with her. Capri had a different plan however. ..
My mom brought A and B to the hospital and dropped them off in the play area. She came up to the ICU where my mother in law and sister in law where waiting. We can only have 3 people back at a time so my mom and Jairan came with me first. I explained her tubes and machines, what the doctors have told us so far and what the plan was for the future. After awhile Jairan went out to get her son and let my mother in law in. While they were there Capris oxygen dipped down. After turning up the high flow and not getting any results they put her back on the CPAP. She was slowly rising but still struggling. The team decided it was best to put a breathing tube in because she was no longer able to compensate on her own.
As the doctor started explaining the risks i started to feel sick. She told me that in most cases there is a small risk of the child not dealing well with the breathing tube and stop breathing all together. In some cases they can go into cardiac arrest. With someone as medically fragile as Capri that risk went from being a rare side effect to a side effect that they were expecting. She told me they would give her medicine to sedate her and another medication to paralize her. I cant do this. I cant be in here for this. This is my limit. I walked out of the room and started to cry. People came to comfort me but i just wanted to be alone. I needed a second to breathe.. a second to think. I walked to the parents room to get a drink and take a few deep breaths. When I came back they had given her the meds and were in the process of intubating her. i stayed outside of the room but watched. They had her on a back board incase she went into caridac arrest. the dr picked her up and tipped her head back. Her arms flopped on the table and her head was limp. She looked like she wasnt alive. It was a horrible thing to see, I wish i had looked away. He put the tube down her throat and the light that shows him where to go went dark. After a few frantic seconds they got him a new light and he finished placing the tube. they started bagging her and watched her stomach inflate. They were to far in. He backed out a little and tried again. Her stomach got even larger. He backed out more. Her oxygen finally started rising 67 ..70.75..80.. It was in the right place. they would bag her up to 100% then put her on the ventilator and she would drop back down to the 70s. bag her back up put her on the vent and she would go back down. After several hours they finally decided the vent was bad and got a new machine. Finally she stabalized. I came in to kiss her and tell her it was ok. they lifted her up to take out the back board and put her blankets underneath her. As they picked up my baby her arms and legs fell to the ground as if she was lifeless. That paralization drug is horrible. I hate it. Later that night the Dr told me he made the mistake of watching them intubate his son when he was in the NICU and its a picture that is burned into his head. As hard as he tries he cant forget that moment. I wish he would have told me that before so I didnt watch. Although after this week i think i will have several images burned into my head that I wish were not there.
This was not how we wanted to celebrate her half birthday. This is the worst celebration ever. It was 6pm by the time they got her stabalized. At 630 no one is allowed in the rooms except the parents because the nurses are switching shifts. I ran to the play room to get the kids so we could at least get a few pictures. We took pictures, gave her kisses and told her everything was going to be okay. If i say it out loud enough times it will be true right? Its going to be okay...its going to be okay...