Today is Sunday and due to the holiday season Louis had to work yet again. Since I was still not able to drive I went ahead and called early morning for an update, my schedule had been to call for updates in the morning and visit at night when Louis got home. My mom surprised me later and told me she wanted to go see him, my dad was off work so he came along as well. I got up and showered for the first time, yea I know gross! I had been taking sponge “bird” baths this whole time…I still felt kind of weak so I took a chair in there. It was weird, I noticed ALL the stretch marks I had gotten and I also noticed my stitches. I had not seen my crotch in a while because of my belly so it was kind of weird…to see all my loose skin and all. Every time I thought about the pain I just reminded myself that Mason, such tiny thing was too suffering. That’s when I got curious about his pain medications; I wanted to make sure he was as comfortable as possible. When I called they informed he had gotten a repeat echo and some other abnormalities had shown up. Atrial and Ventricular septal defects. They told me the cardiologist would speak to me when I came in to visit. I got worried and asked the nurse if it was serious, She told me Mason was stable so that I should not worry just yet and just come talk to the doctor. I had written the most important info and made sure to ask questions about it every time I called. One was to ask how his last blood gas was; He had been a little acidosis the past few days so they were making some changes on his TPN. I also asked about his billiruben levels, He had been on the billi lights for 2 days now. Another question I asked was about his ventilator settings and if there had been any changes, the lower we went on the settings the faster he would most likely get extubated. I asked about urine output as well, He had not started stooling much since his colostomy was barely healing but he did stool a little which was a good sign. I would ask about his weight because they always weighed him at night and I would just ask a basic “how did his night go?” I wanted to know his vitals and if he was stable. He had gotten an infection so he was on vancomyecin to treat that. But other than that she told me he was a little more alert since they had gone down on his sedatives. I told her I would be in around noon and proceeded to get ready. I ate and we took off to see him. When I arrived the cardiologist was waiting for me. He pretty much explained that the PDA was not closing with the medication and they were considering ligation. He said they would do a follow up echo as there was much edema and they could not get a clear picture. They gave him lasix so he can urinate the excess fluid. He was still on dopamine, his lower body BP was lower than his upper body so that started concerning them that his gut was not getting enough perfusion. I cried in the NICU for the first time, here was my baby more awake and looking better but he was only getting sicker. We went from 12 mics to 17 mics of dopamine from the afternoon to the evening. He was started on epinephrine later on that night. It was beginning to be a bad night and I could already feel myself getting filled with emotions. That night I saw Mason’s first desat, his saturations went down to the 60’s and I saw him turn blue. I really thought this was it, I prayed to god as they worked on him. I told God that night that Mason was in his hands, that I put my trust in his will. Me and my dad sat in the lobby because it was too much for me to handle. I cried, and he told me about when my little sister died, I started sobbing immediately. Here was my father, the person I had loved more in my entire life and he was talking to me about how he had suffered the death of his child. I couldn’t help but think “this is going to happen to me too, this is what we will have to relate to from now on..That we both lost our babies” I remembered thinking how I would feel if my dad died right then and there and I felt the more horrible heartache I had ever felt, then I realized I loved this baby more than I did my own father and I felt like dying…..He managed to calm me down and we went back upstairs. They had switched Mason from a regular conventional Ventilator to a high frequency ventilator that would be much gentler on his tiny lungs. They gave him some fentanyl so he had relaxed. I didn’t want to bother him as he looked rather peaceful. I told him I loved him many times…All I kept saying was “Baby Mason…I Love You!!” he held my finger and I dosed of for a bit. My parents were downstairs grabbing dinner and some coffee. It was now around 5pm and I was emotionally drained. I remember not wanting to leave, Leaving was becoming so hard. Every time I left I had this horrible feeling it would be the last time I saw him alive. I got the courage and said goodnight since shift change was coming. I knew I’d be back later on with Louis so it wasn’t so difficult. I left, came home ate and took a little nap and Louis woke me up around 9 telling me to get ready. I of course got up in an instant! There was nothing I wanted to do more than go see Baby Mason. As soon as I got there I opened his issolette and whispered “Baby Mason, mommy and daddy are here” I would now start my days with him this way. He was sleeping so we just stared at him until “touch time” we then got to change his little diaper and take his temp. We found out he was now 2lbs 2.2 Oz. I thought At this rate he will be big in no time. He wasn't eating yet so it wasn't all accurate weight. We stayed for about an hour, he seemed to be doing a lot better on the jet ventilator even though it shook his whole body I knew this is what he needed. The nurse told me they would keep him sedated as long as he was on the high frequency. I remember feeling so blessed to have seen him awake earlier. We took him a St Jude stamp as well as a Virgin Mary stamp to help take care of him. We kissed him goodnight and I built the courage once again to leave without my baby. Today was a downfall on this roller coaster of ours…I hear there will be ups and downs…Just like a roller coaster, good times and bad. I was ready to take this challenge full on. Today is Dec 13 and we almost lost Mason.
Medical Record for the Day
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