Meningitis.

So many kind, wonderful people have been asking thoughtful questions about the past six days in the hospital. I decided it might be easier to type out the story once so that everyone can read it and know exactly what we know. I'll warn you, though...we don't have a lot of answers, just a lot more questions. But, here goes the story...

It started last Wednesday. Gable woke up around 7:30am. Roy took her downstairs to spend about an hour with her playing. We took her temperature and it was a pretty cool 97.4. I was concerned she was cold so I went ahead and bundled her in a thick blanket (I'm usually cold in our apartment so I have done this before). After she fell asleep, she didn't seem to want to wake up, other than to feed. Around 2pm, I became a bit concerned. I called a friend of mine who just happens to be a NICU nurse. She encouraged me to try to wake her up. I tried to wake her up but she didn't respond much, she was just pretty lethargic. She had been up most of the day before so I just thought she was probably catching up on some much needed sleep.

Later that evening Roy left to go to a marriage bible study that we had been missing since Gable was born (I wanted him to go). He left around 7pm. Gable was still asleep. After he left, I started to get more concerned...so, I took her temperature (in the ear). It was 101.1. I was shocked and started shaking because I was so scared. I immediately took her clothes off and took her temperature under the arm with the thermometer from the hospital. This time it was only 99.7. Still concerned, I called the pediatrician. They encouraged me to take her temperature rectally...it was 100.4. Anything over 100.4 is considered a fever so they told me to go to the emergency room. They said we could go to Medical City Children’s Hospital or Children's Hospital downtown. Roy was closer to Medical City and I didn't know where Children's Hospital downtown was so I left to go there immediately...still pretty scared.

When I arrived at the hospital, there was a waiting room full of very sick children. I hated being there and immediately felt guilty for bringing her. They let us back almost immediately because of the severity of an infant with a fever. When we were taken back, they took her temperature again and it was only 99.4. I felt relieved and confident that they would just send us home...I wanted to get out of there. Roy made it up to the hospital just as we were being taken to another room. The doctor came in and said that they still wanted to do a full “work up” on her. They started taking blood from her, they catherized her for a urine sample, they started an IV and wanted to do a spinal tap (lumbar puncture). It was absolutely awful watching our baby go through this...she was screaming. When they were ready to do a spinal tap, we had to leave the room. I was crying, it was really hard to hold it together (which I was not doing). We were assured that the spinal tap would be quick and easy. It wasn't. The nurse practionioner tried three times and then they had the pediatrician come in and try another two times. At this point, because they were not able to get the lumbar puncture, they decided to go ahead and admit us to the hospital and start her on antibiotics through the IVs. They took her temperature again and it was 101.4. We got into our hospital room around 1:30am in the morning. It was very ugly, so ugly that I couldn't take any pictures. She didn’t cry all night, I didn’t sleep. I just counted the hours until I could feed her again. We kept calling the nurses to come in and take her temperature. At 4:30am, her temperature was 101.7…but, after that, her fever broke (and she hasn’t had a temperature since).

On Thursday, we were told that all blood and urine tests had come back negative. We were expecting to go home soon. The pediatrician still wanted to try again for the spinal tap, just to be able to rule out meningitis. On Friday morning, we had a successful spinal tap and the fluid was sent off. Later that afternoon, the pediatrician came in and explained to us that the white and red blood cells were off and that it looked like it was meningitis. We were shocked. She also told us that because they had already started Gable on antibiotics Wednesday night, we would never know if the meningitis was viral or bacterial (if meningitis is viral, they send the babies home). She did assure us that nothing looked severe and that we caught it very early.

Because all tests came back negative, we don't have any answers. So...we are treating Gable as if she has bacteria meningitis...which means 2-3 weeks in the hospital. She has had 2 IVs so on Monday they put in a PICC (which is an IV that extends towards her heart) - it's supposed to be easier on her. The IVs are absolutely terrible looking - they look painful. She's continued to feed well. The first days here, when most of the pricking and proding happened, she did not like to be put down so we held her a lot. Now that the antibiotics are only every six hours through the PICC, she is much more like a normal baby...Gable is a great baby.

The infectious disease specialist said that we could possibly look into administering the antibiotics at home for the next 1-2 weeks. However, the pediatrician says that they have been unsuccessful finding a home care team willing to take on a newborn of Gable’s age. We are also faced with the decision of how long to continue the antibiotics (2 weeks or 3 weeks) because that is usually determined based on the type of bacteria meningitis but because we don’t know what type it is (or if it is even bacteria meningitis, in the first place), we don’t have a clear answer on how long treatment should be given.

Most people ask about what happened but they also sweetly ask how I am doing. Personally I wonder why all of this is happening to sweet little Gable. I wonder how in the world she got this and what in the world I could have done to protect her from this. I feel like an absolute terrible mother. I wonder if this is the best hospital that I could have taken her to. I wonder if I should have not let anyone visit and/or hold her. I wonder if I shouldn’t have taken her out to see the newborn photographer (twice). I also believe that it is a very clear possibility that she caught something at the pediatrician’s office, where we took her 3 times in the first two weeks of her life (they were concerned with her weight).

I am so desperately trying to trust that God loves her more than I could ever love her…and that he intimately knit her together the last nine months of her life and has not forgotten her. I have to trust that He is caring for her and that the burden is not on our shoulders. I do not understand why she is going through this and why her little body has to be so poked and bruised, so early in life. I am also having a very difficult time trying to understand why we don’t have more answers…and why everything I feel like we are doing is based on intelligent guessing.
I have been so humbled by the outpouring of our friend’s prayers, thoughtful text messages, voice mails and care baskets. I have heard from numerous friends, whom I didn’t tell about Gable, that they are praying for her. I am so grateful for the love that we have been shown - such a tangible picture of the way the Lord is watching over us and caring for us, even when we don’t have all the answers.