Tuesday, October 04, 2016

The Roller Coaster that is Louisa

Children's Hospital

Last Thursday my mother-in-law came to Lexington to help us out with Louisa. I could tell that morning that Louisa would have a rough day, she wouldn't really eat for me that morning. I started to become anxious because these characteristics appeared when we first struggled with 'silent reflux'. I said good-bye to the babe and my Mother-in-law, Dianna, and went to work. I cried on the way there and continued to tear up every time I looked at Louisa's picture in my office. Something didn't feel right. I felt like something was wrong. I text Dianna and asked how she was eating and she said Louisa hadn't really taken much but she would try again. Later that morning I asked again how things were going and Dianna told me the same thing. My insides started to shake. Something is wrong. I know something is wrong. I cried hard at work and called my co-worker and told her what was going on. Amy Holt, my co-worker, is such a special and dear friend to me. I am so blessed to work with her. 

Amy told me to go on home but I didn't want Dianna to think I didn't trust her. Dianna is a dream. She is a great 'grammy' and loves that little girl so hard. I am so thankful for her. I didn't want her to think she wasn't capable of caring for Louisa. So, I waited. I tried to distract myself with work and I waited. When I arrived home I found Dianna crying in Louisa's nursery with baby girl on her lap. "She won't eat. I tried and she just won't do it." I fell to my knees and just sobbed. I was so confident we had overcome the lack of eating. I was so sure we were turning a corner and she would start gaining weight but she didn't eat and she wasn't gaining weight. I cried hard. I held my baby in my arms close to my chest and I sobbed. Dianna came to the floor and wrapped her arms around me and cried too. I was so scared. Dianna was scared. 

I stayed home from work Friday to help out with Louisa and monitor her throughout the day to see if she was getting any better. Eating was still a struggle. She would suck hard for an ounce and then she would start crying and arching her back. She would want to eat but couldn't, it is literally the saddest thing to watch your child starve. That night Mikey and I went out to dinner and tried to have a date night. We had much needed conversation and intentional time together. Throughout that night into Saturday morning I tried feeding her and we were in the same boat. Drink one ounce and then cry. I asked Mikey to call the pediatrician and all four of us went to Dr.Warner's office. We joked once Mikey got off the phone with the receptionist. I am sure she yelled back to Dr. Warner and his nurse, "The Riley's are coming again." Dr. Warner is wonderful and truly he cares deeply for Louisa. He worries about her and makes sure that we see him at least once a week. When we arrived she had lost another ounce. I had a feeling that would happen so I didn't panic. Then, the hard conversation happened. Dr. Warner said we needed to go to the hospital. I felt my heart in my throat. We would have to go to UK Children's hospital where she could be seen by a G.I. doctor and get a feeding tube inserted. I only cried a little in front of the doctor. Milestones... am I right..

We arrived at UK Children's hospital a little on edge. Our good friends had just shared with us a very awful experience they had with UK children's hospital. I tried to be optimistic and let our experience be a new one. Our nurse was wonderful and we were all settled in. The resident on call came in to talk to us and mentioned they wanted to monitor her for 48 hours before they do anything. This was not going to work for us. I monitor her at home. I didn't come in to the hospital because I am delusional I know there is something wrong and things need to start happening immediately. The resident said she would relay our stern message to the other doctors and we would most likely be visited by Dr. Cotrill the next morning. The first night was awful. Nurses and techs are in and out so much that once you get Louisa to sleep she is woken up by the extremely loud door to our room. The sleeping arrangements weren't horrible. Louisa was connected to a monitor for her Heart rate, oxygen level, and blood pressure and it was going off every 5-10 minutes so Mike got up and unplugged the machine. It is a wonder they didn't boot us out of there. 
The next morning Dr. Cotrill came into see Louisa and to talk to us about the game plan. She originally wanted Louisa to be monitored for 48 hours and then possibly have a feeding tube inserted. I cried and asked that we go ahead and put the feeding tube in. Things were not going to change and I knew that. A feeding tube is not what I had envisioned for our little girl but there are a lot of things I didn't envision that we have had to deal with...moving on. Dr. Cotrill was comfortable with our plan and gave the go-ahead to the doctors there at the hospital. Sunday afternoon the nurses and techs came in to insert the tube. The nurse showed us what to do in case it came out. I sobbed while they were putting it in. The tube was in place and we began feeding her with the bottle and then whatever remained we would put through the tube. Mike went home Sunday night to sleep and I stayed in the hospital and learned how to use the overnight pump. 

This is the sweetest picture of Dr. Cotrill and Louisa. She really is an amazing woman.

We were discharged yesterday at 6:00p. The doctors were happy with the success of the feeding tube and we were ready to come home. The only plan we have right now is fatten this baby up. We will see our doctors next week and get more of a plan in place once she starts gaining.