They said that the rash was normal and nothing to worry about. Dr. Cook then was listening to her chest for what seemed like a very long time. Then he kept feeling her body all over. He called his nurse in to take her temp and I knew that something was not right. As soon as I saw the temperature 100.4 I started crying. I knew that 100.4 was the cut-off for fevers in small infants. Dr. Cook came back in the room and told us to sit down. He told us that he was sending us to the hospital because Sophie's heart rate was really fast and she had the fever. We were terrified. What was happening to our sweet baby?
I took the keys from Alvaro and drove all of us to Levine Children's Hospital in Charlotte. They were supposed to have a bed ready for her before we got there and, of course, they did not. So, here we were panicked with a 5 day old baby who had a fever and no body could figure out where we were supposed to go. I thought that Alvaro was going to strangle the "security" person. We called Dr. Cook and he got everything figured out. After going through registration we were led up to the 9th floor. We walked into this room with a giant sterile looking crib with monitors and wires everywhere. I started crying for the millionth time. Within a thirty minutes there was a team of doctors there to look at Sophie. Her fever was gone and they wanted to monitor her for 24 hours. We were so relieved but a little confused about why she had the fever in the first place. Her heart rate was still all over the place though. My other pain was that yes, my milk had come in, but it had been several hours since I had nursed. They did not want her to eat anything until they could watch her for a while. I thought the pain of my milk coming in was bad, but going 5 hours without nursing was 10 times as bad! Much later that evening they took her temp again and the fever was back. They were still watching her but now I was getting really nervous. They didn't want to do their typical set of tests if they didn't have too since it included a spinal tap. I noticed that she was making this weird noise in her sleep every time she breathed in. I asked that they take her temp and sure enough, it was over 101!!! The decision was made then to do all the testing which included the spinal tap. We had the choice to go with her or to go for a coffee. They told us it was really hard to watch, so we opted for the coffee break. Neither of us had eaten all day and we were both exhausted. When they brought her back she was all swaddled up and had an IV coming out of her head!
Within a couple of hours they were able to tell us that she most likely had a UTI but now they to check to see if the bacteria had crossed over into her blood stream. In the meantime they were still watching her heart rate as it continued to fluctuate between being really fast to really slow. They did an EKG on her which would take 24 hours to get the results back on. We found out that the bacteria had spread to her blood and that we would have to be treated for the next 10 days in the hospital. Shortly after her head started to swell where the IV had been placed. The site had "gone bad" and they needed to move the IV to her foot. But before they did that they needed to get a blood sample from her foot. They had already stuck her foot once the previous day. Well, she cried so hard this time that it made the former prick site start to bleed again! That was about the time that we discovered "sweeties" which is basically sugar water. Infants love it and it is like baby crack because she instantly stopped crying and would pretty much let them do anything to her. Sweeties would rescue us many times while we were there.
When the EKG came back the doctor/resident told us it looked like she had Long Q syndrome. He continued to inform us that it is the illness that kids have when they just drop dead for no reason on the basketball court. WHAT!!!!! Those was his exact description and the tears were flooding my face. They said that they would have the pediatric cardiologist look at her and the EKG but it wouldn't be until the morning. Alvaro insisted that he come that afternoon and he did. This seasoned doctor told us that she looked fine and that he did not think that she had Long Q but would recheck her before we left. Oh what a relief!!
Things were starting to look up for our little peanut. Her fever had yet to return and she was handling things well. Her parents were exhausted. Her grandparents were a gift from God! Her extended family and friends were praying hard and such a great support. Just when we thought that things were on the up and up her foot starts swelling and the IV in her foot is going bad. ARG!!! So, they switch feet and she is now the world's stickiest baby from all the tape and monitors that have been stuck to her little body. We had to start supplementing formula some for her since she was not gaining a lot of weight and the antibiotics were giving her pretty bad diarrhea. It broke my heart to give her the formula but she needed it so we did. By the way, she loved it and drank those bottles down like a champ. She celebrated her weekly birthdays in the hospital and she was changing so much right before our eyes!!!
Days later we notice that her third IV was going bad!!! They were going to have to place a PIC line in her leg. In order to do this they were going to have to put my little baby under anesthesia. I knew that this was the best thing since it shouldn't go bad like the other IV lines. But did they really have to put her under??? I will never forget the fear that I had handing over her to the anesthesiologist and seeing her lay on this huge bed in a nest of warmers. I felt completely helpless and that I had no control. It didn't help that there was this girl who was all of 18 popping her gum waiting in the corner just staring at me as the giant tears roll down my face. Who was she and what could she possibly be trained to do?? Several hours later Sophie is finished and all had gone well. It would be a lot easier to give her meds and there would be less wires and tubes coming off of her. She was becoming quite the trooper. I had not left the hospital since we came n that Monday afternoon. It was so great that so many people had come to visit us. We had Alvaro's friends from work, mine from work, neighbors, family, and even my cousin Katie's stand-in head which brought much comic relief! It was getting easier. She was getting better. We were all going to be alright.
In the end, after all of this and her being cathed 3 times we found out that she has renal reflux on her left kidney. Basically each time she urinates, she kicks some back into her kidney. She has a grade 3 on a scale of 1 to 5 with 5 being the worst. She is on a daily dose of amoxicillan for preventative measures and has been UTI free since (knock on wood). She is our little fighter for sure! After 12 days I went outside with our baby to go home. It might have been 9:30 at night but we didn't care. We wanted out of there! It felt like we were taking her home for the first time all over again. And basically we were. She had only been home 3 nights before going into the hospital. I was nervous. Almost her entire life we had a nurse to help us at the push of a button. Now we were all on our own. I wouldn't have had it any other way.
