I started keeping a journal at this point. My entry goes as follows:
Day 1 post-op. Oliver is doing pretty well. He is a little more alert than I am comfortable with. He keeps opening his eyes and wiggling his toes and fingers. His little lips keep quivering as well. Seeing him hooked up to all of these tubes and monitors is the hardest thing I have ever done in my whole life. He is so perfect and precious. He truly has a special spirit about him. I am humbled that God has entrusted him to my care. I have vowed to love this little soul with everything I’ve got. His nurse is concerned about two things right now. One thing is that Oliver isn’t urinating as much as she would like, and two is that the pulse in his right arm isn’t as strong as it should be. She didn’t seem super alarmed about it…..but I am.
One thing I learned during the recovery phase is that you take one step forward and two steps back. Oliver had a fairly uneventful recovery, but I still worried about each little milestone he wasn’t meeting. I remember asking my family to pray that Oliver would start to urinate and that the pulse in his arm would go back to normal. I would feel panic at first, and then calmness. After saying a prayer I would always feel better and reassured that all would be okay.
One thing that I feel Heavenly Father wants me to learn from this trial is to keep my faith strong. I am allowing negative thoughts to creep into my mind. I felt that yesterday was a turning point for me. I received my witness that all would be well with Oliver….then a few hours later I started having negative thoughts. I recognized them immediately as darts from the adversary and was able to pray them away. David shared a few scriptures with me later on that topic. I was in a place yesterday where I was helpless. I knew that there wasn’t anything I could do for my son. I turned everything over to my Father in Heaven. I know this is something I still need to improve on….but I do know from this point forward that my only option is to turn everything I have in me over to Him. I need to let him lead my life in whatever way he sees fit.
2 days post-op. Oliver got his chest closed up today. This is a huge milestone. We may be able to hold him as early as Monday or Tuesday. I would love to be able to hold and comfort my baby. I am also looking forward to getting him some nourishment. He isn’t allowed food yet. I have been pumping and really think it will benefit him once he is allowed to have it. They are thinking we can start that tomorrow. They are also going to ween him off of the ventilator this weekend. I am hoping to get as many tubes and cords off of him as possible by Monday. It makes me sick to see him hooked up to so much. I get very worried that he can feel a lot of pain. He had surgery at 8:00 am to close his chest and it is now 11:30. He is still heavily sedated. The surgeon said he was very agitated.
The morning of the 18th was a hard morning for me emotionally. David was at school, so it was just me and my mom at the hospital. I was there early that morning to spend time with Ollie. I was so sad when the surgical staff started trickling into his room. I knew they would ask me to leave soon. I signed the consent forms and then kissed Ollie goodbye. I was crying and Ollie’s surgeon asked me if I was okay and walked me down the hall. I was so thankful that he took the time to talk to me and reassure me that everything was going to be okay. The surgery was fast and I was back to Ollie in no time. My headache was unbearable at this time (due to my epidural) and my mom offered to sit with Ollie while I went over to the U. They had told me that if it didn’t go away I could get a blood patch. I only had relief from my headache when I laid down flat. I was put in a room and I remember being so thankful there was a bed in there. I was exhausted and wanted nothing more than to lie down. Getting the blood patch was not a great experience. They took what looked like an extremely large amount of blood out of my hand and injected it into my back. They basically give you an epidural again but don’t make you numb. Once they had the needle in the right place in my back they injected the blood. It sent waves of cramping and pain down through my hips. Fortunately it worked and my headache was gone!!!! I know I was blessed with a great team of doctors who were very sympathetic to my situation. I was allowed to lie down for an hour and then I headed back over to primary children’s to sit with Oliver for the rest of the day. I had strict instructions not to bend over far or pick anything heavy up or else the blood patch would move and I would have the headache again.
Today is Oliver’s due date! He is doing pretty well today. We have hit a bump in the road though. They took out his breathing tube and his left lung collapsed. He isn’t getting his breathing tube put back in just yet though! They want to try a few other things first. Currently he is on high flow oxygen. They said it feels like sticking your head out of a car window. Ollie’s night nurse let us assist in giving him a sponge bath. It was so fun! It feels nice to do normal-ish things like this. It did make me a little sick when he cried though. I hate watching them move him. It looks like it causes him so much pain. She told us it was okay for him to cry because it would help his lungs out. His little cry sounded a bit different and we were warned it might. His nurse said his vocal cord is probably not damaged but that he sounds different from being on the ventilator. He is a little trooper!
This was a scary time in our lives, but doable. Each day had its challenges….but above all I saw and felt things I may never again in my life. If you are about to embark on a similar journey, I would give this advice: Keep a journal! It is therapeutic and it will remind you of things that you forgot about. I specifically wanted to keep a journal so Oliver could look back on it someday. I wanted him to know all of the emotions we were going through AND what he went through. I didn’t want to forget anything!