I know I have recently updated the blog but it has been a whirlwind of a week with our little girl I wanted to write about it.
The day that Caroline was born was the day I technically become a mother. But today was a day when I truly learned about my mother instincts. Everyone always told me, "you know your child best" but I have not felt that way since the day she was born. Caroline has been a mystery to so many doctors in her short little life and I have always wondered if I would ever get that mother instinct of knowing what is going on with my child. Well, this week, I did.
Most of you know that we have spent the past four days in the hospital with Caroline. It was not a planned trip. We were out of town, enjoying a weekend getaway in the mountains with family when she started running a fever of 100.9. Now, I know you are probably saying (and we heard it from several doctors) "that isn't a fever!" but Caroline cannot regulate her temperature like we can so her normal temperature is around 96 or 97. So yes anything over 100 is a big deal to us. Plus, this is the first time it had gotten that high. We gave her tylenol and waited. Well, temperature did not come down and we were 3 hours from home. So Jeremy and I made the decision to head to Charlottesville, only 2 hours from us, and since we had an appointment on Monday there, we would be in town in case we needed anything. We ended up taking her to the emergency room there. I hesitated doing it, but her fever wasn't coming down and it wasn't like her. We had thought maybe a UTI or ear infection so we went ahead and took her, hoping for a quick answer and some medicine and we would spend the night in a hotel and be ready for her appointment the next day. But that is not how it went.
So there we were, in the ED, have blood drawn from her tiny blood vessels, taking chest x-rays, being confined to another MRI machine with a screaming baby (we all know how much I love those), trying to determine the cause. Could it be her shunt? Could it be an infection? Could she be septic? Could it be a Kidney infection? What about pneumonia? What could this be? Tests after tests were being run and SO many doctors, nurses, residents, medical students, and specialists were in and out of our little room.
Now I knew it would be a lot to take her to the ED because they don't know Caroline there and having to start from the beginning with her complex medical history (the doctors words) was going to be overwhelming and I knew I would have to repeat myself several times to several different people and I was ready. "Yes, she has low muscle tone. No she doesn't move much. Yes she has swollen feet and hands. No she cannot sit up" I explained and explained and tried to give them an idea of a baseline on Caroline. Well, they decided to admit her as they could not determine the cause of the fever. The test for the flu was negative, blood work looked fine, Shunt Series looked good and had not changed. Just a total mystery. I mentioned about a UTI or ear infection but one resident said her ear looked fine and they tested her urine and was negative. We were at square one and frustrated.
We spent he next three days in the hospital. Being visited by many more doctors and nurses and still no answer. Finally, after none of the labs and tests showed anything and Caroline's temperature was down, they decided they would call it a small virus that she was able to fight off. Ok, great. Basically, no answer but the good news was we were going home. We had spent hours of waiting, contemplating, trying to sleep in a hospital chair while being woken up several times during the night and was beyond exhausted. We had missed work and scrambled to take care of things while we were away. We were ready to go home.
I told the doctor before we were discharged that there was a lot going on with Caroline that has been undetermined and we were frustrated. That I didn't know what to tell doctors, I did not know which piece of information was relevant or which wasn't. I could talk about her medical history for several hours but we all know doctors don't have that kind of time. I tried to keep the important things at the top of the list and I had hoped I told her all she needed to know. I felt defeated, that we had not determined a cause. I was frustrated because for once, I wanted a doctor to tell us they know FOR SURE what was wrong. I feel no doctor has been sure of anything with Caroline, even when I was pregnant with her. There were so many gray areas and I have never felt at peace with her diagnosis and things left unsaid. I had flashbacks of her being in the NICU and so many doctors could not figure out why she was doing the things she was. I felt desperate to get out of that gray area. I wanted an answer. I wanted someone to come in and say I know what is wrong and this is how we are going to fix it. But no one did. We left the hospital, like so many other times before, without an answer.
Well we followed up today with our pediatrician at home, just to make sure we had a good first night at home and nothing had changed. I had debated about canceling the appointment because Caroline was acting like herself. I took her anyways, if anything, to keep our pediatrician in the loop about things going on with Caroline. Well, wouldn't you know it, the pediatrician looked her over and said she has an ear infection.
A FREAKING EAR INFECTION!
I literally just laughed out loud when she said that. We had spent the past 4 days, surrounded by doctors and specialists, running test after test, with nothing showing up. I knew it, from the beginning and I should have listened to myself. But I believed that doctor in the emergency room, that her ears looked fine.
A lot of frustration and anger hit me. I told the pediatrician our frustration and she explained that when a child with a complex medical history comes in, they have to check everything out. That when a child has "hardware" (as it was referred to many times, her shunt) in their scalp, you have to take those precautions to make sure it is functioning and not developing an infection. And I get it...they were checking for the serious things, for the "I hope we never have to be in the hospital for this" things because that would be miserable. I get it. But, while they were trying so hard to rule out the complicated things, they had missed such a simple thing. Her ears were not checked again since Sunday night, despite being asked to check them again, even after telling them she would not lay on her left side (red flag to ear infection, right?)
As frustrated and irritated as I am, I have to take this as a learning experience. What's done, is done. I can't change it. But, I am learning to become a mother. I am learning to listen to my instincts. I DO know my child and I need to make sure I let that be known. I know doctors will always want to investigate the big things, and I want them to be consider everything. I want them to also know that Caroline is a child, just like any other, and she is capable of just having ear infections and runny noses like any other child. I am thankful we have gotten an answer and an antibiotic and look forward to her being better soon. She has definitely kept us on our toes since she has come into our lives and I know she always will. But I need to learn and trust myself. I did get that mother instinct after all and I am going to put it to good use!
Thank you for all the kind words and prayers during the past week. It has been a whirlwind and we are learning so much about our sweet Caroline. She has surely gotten her share of extra snuggles and loving this week and we are so thankful to have her in our life. We know she will keep us busy but we ok with that!
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