I have tried and tried to be positive during our time in the NICU. As Brandon would say, I put on a good front for the nurses and doctors, but I really do fall apart when a small thing changes in Will's day. Today, I fell apart in Will's room in front of the nurse practitioner, and I know that our nurse today knew I was upset. Brandon reminds me that we are truly lucky in that things could be worse for Will and that he is relatively healthy for his prematurity. I know that this is true, but it is hard for me to see my son in the NICU not making huge strides in his hospitalizations. I also know that Brandon and I are lucky that we have Will and that I was able to carry him as long as I did.
One thing that I have to be thankful for, is that I am a nurse and that I know what questions to ask the doctors and nurses. While, I am a mom first, the nursing background helps. When I am at work, I tell my parents to advocate for their kids because they know their child the best. I tell them to ask questions and to give their opinions on their child's care. I may only have had Will 24 days ago, I have learned that I know Will and I know when something is wrong. Today was no different, and I was so grateful that the nurse and nurse practitioner took me seriously and helped Will out.
When I arrived to the NICU at 8:30am, Will was still on his 2 Liters high flow and he was on 35% oxygen. This was a huge change from the day before. Will was nursing on 23% oxygen, and this increase worried me. Also, Will was breathing really fast and didn't seem too comfortable. I tried to nurse him, but he was so sleepy and his respiratory status was not the best this morning. I ended up holding Will during his feeding, and his breathing slowed down and he was a little more comfortable. When I put him back in his big boy crib, he immediately seemed uncomfortable and his respiratory rate ranged from 60-100. I knew that something was not right with my son, and I couldn't put my finger on it. Brandon arrived to the hospital and I told him what I was feeling. We sat there and watched Will's breathing and he was desatting and his respiratory rate was still high. He asked the nurse to call the nurse practitioner. The nurse practitioner came in to talk with us. I told her that I knew that something was wrong, and that he started changing once the steroids were stopped, after 2 days, earlier in the week. I knew that the steroids worked, but the doctor wasn't convinced. When I explained this to the NP, she said that she would continue to watch Will closely.
Later in the day, Will was still not happy, so the nurse placed him on my chest around 2:30pm while he was feeding, and he immediately relaxed while on me. At this time, the NP came back to check on Will, and I was so mad that he looked good because he was on me. I explained this to the NP, telling her that he is only content when he lays on me. I told her that I can't always be around and that he needs to get used to the crib. She said that she would continue to watch over Will.
Around 5:30, the NP came back and said that she was reading over Will's entire chart, and saw why we started his steroids and how he improved after they were started. She said that she took the information to the doctor on call, and she decided to start the steroids once we have ruled out an infectious process. The NP ordered a chest xray and some blood work. The xray looked better than the previous xray, and one of the blood tests came back normal. When I left at 6:30pm, we were waiting for the other blood tests to come back. I am thinking that Will will be back on steroids when I get back to the NICU in the morning.
Through all the tears I shed today, I felt okay going home. I feel that because I advocated for Will and kept telling the nurse and the NP that something was wrong, that they listened to me and looked for what was causing Will's respiratory distress. I hope that my parents at work will listen to me, and advocate for their child because parents do know best, and while it's good to listen to the professionals and the experts, parents need to remember to speak up and voice their opinions too.
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