Day to Day

So I know we just updated the blog a few days ago about our sweet Caroline but so much has changed since then. I figured instead of writing a long facebook post about everything going on, I would just update this and that way I can write it all out.

Caroline was finally making some improvements over the weekend. She was starting to take to sucking (some), her back was looking better since adding the 2nd antibiotic, her shunt was still looking good, and we got a lot of snuggle time in with her. Then, yesterday, things started to go downhill. We noticed that her stats kept dipping throughout the morning. Her O2 (oxygen) level, which normally runs around 95-98 was dropping into the mid and upper 80's. It would drop for just a few seconds and then she would "recover" and come back up in the 90s. As the day progressed, the dips seemed to last longer and longer and the numbers got lower. The lowest I saw last night was 69. Jeremy and I just sat in her little area by her bed watching the monitor constantly. As soon as the alarms would sound, we knew she was dropping. Also, yesterday, she began spitting up. First it was right after her noon feed and didn't think too much of it but then it happened at her 3:00 and 6:00 feed, even with slowing the feed time down over an hour. She finally had a major throw up last night while I was holding her. She looked so pitiful and helpless and it absolutely broke my heart. Also, her blood pressure crept up throughout the day and was pretty high last night. Around midnight they decided to put her on some "slow flow" oxygen. Jeremy and I stayed until about 2 in the morning just watching her. At least with the oxygen, she wasn't having as many dips in her stats so we felt it was ok to sneak away to sleep for a couple hours. I still did end up calling twice during the night to check on her and the nurse told me there had been no changes.  

I went over to the hospital around 7 this morning to see her and as soon as I walked in, about 8 people came in behind me. Before I knew it, I was surrounded by residents and doctors from the NICU and Neurosurgery. Everyone was asking questions about the timeline of events and I was trying to provide as much help as I could as we had been by her side the entire day before. Soon everyone was putting in orders of things they wanted done...kidney ultrasound, MRI of the shunt, bloodwork done, moving her back to the critcal care side of the NICU, chest xray, another attempt at finding the picc line, etc. It seems the list of things they wanted done kept growing. I was thankful they were looking for answers. I must have looked like a deer in headlights when all of this was going on because the doctors were very comforting as I just stood there crying, not knowing what to say. They reassured that everything would be fine and she was in good hands. After I had my meltdown in front of everyone, they moved her to the other side and began prepping for the tests. I noticed that Caroline was twitching her right arm and neck, like she had been doing all day before, and happened to mention it to the Neurosurgeon who was currently examining her. She then ordered an EEG (where they put about 20 probes on the scalp and monitor brain waves) to monitor for seizures. I told Jeremy yesterday that is what it looked like and even mentioned it to the resident on duty and the nurse and everyone shrugged it off as not a big deal. So they gave her medicine to treat seizures and have her currently hooked up the EEG machine.

As of now, the MRI came back clear. The fluid on the brain has not changed since the last MRI last week so that helps to almost rule out the chances of something being wrong with her shunt. That is a very good thing because we definitely don't want it infected and we definitely don't want them to have to go back and replace it. Her labwork came back pretty much normal. Her white blood cell count was slightly elevated but nothing concerning. Her kidney ultrasound showed some mild dilation so they have been cathing her every 6 hours to make sure she is emptying her bladder completely. (Cathing is very common in children with SB so this just seems more standard protocol).  We will not know the results from the EEG until Neuro looks at it and sometimes they let the machine run for a couple days, depending on what is being seen on them. She did have two more "twitching episodes" shortly after being given the seizure medicine, but hasn't had one since. Because they gave her a "loading" dose of the seizure medicine, she has been asleep the entire day. They also had to put her on more oxygen because the side effect to the medicine can make babies have shallow breathing and of course Caroline did.

So we haven't gotten any answers as to what is going on with our sweet girl. It has been a very long and hard two days. It is the worst feeling to watch her laying there, so helpless and pitiful, and not being able to do anything for her. I feel guilty leaving her at any time but I know she is in great hands. Jeremy had to make me leave tonight earlier than usual because we only slept for a couple hours last night. It's a hard feeling for a mother to leave her sick child. I feel so bad doing it but it is not practical to stay/sleep in the NICU with her.

I am just very thankful that they were able to get her stable today and now she is resting. She has not had a temperature through any of this and she also has not been in any pain or discomfort. I am thankful for those two small things during all of this. We don't need anything else added to what she has going on. I just hope and pray that they doctors can figure out what is causing her to be so sick and find a way to treat it.

We also thank everyone for the wonderful words and prayers today and yesterday. We know that she is a strong girl and has so many people cheering her on! We will keep everyone updated on her progress over the next few crucial days! Thank you again!