Isabella's Own Chaos

Isabella was the sweetest baby. She only cried when she was hungry or needed to be changed. I would stare at her and think, this is why people have a lot of kids. She was so easy. Or at least she started out that way. Not to be outdone by her brothers, one night when the twins were 2 months old, Isabella was sleeping in between Leo and me. She made a pitiful cry and when I felt her, she was on fire. I took her temperature and it was almost 104. After a brief argument with Leo on whether to go to the ER, I raced her there. I knew it couldn't be good to be that small with a fever that high. They did a spinal tap which broke my heart to hear her scream like that (they wouldn't let me in the room). That came back clean but her urine test came back positive for an infection. She was admitted and her little arm was tied to a board to keep the IV steady and one of the nights when she wouldn't stop crying from what I was afraid was pain, I had to crawl in the crib with her and let her sleep on me (one of the only benefits of being 5'2). It was the week before Christmas and I cried when carolers came to sing to the kids that were there. No child should be in the hospital at Christmas. They ran a bunch of tests and it was a good thing I was already on antidepressants because it was very hard being there that week with them trying to figure out what was wrong. At one point, Leo looked at me and said, "Please can we be done having kids? This is too hard." She was released the day before Christmas Eve with the diagnosis of a bladder infection.

She was seen in the ER two more times, once at 18 months and again at 2. Both of them were for bladder infections. After the urologist ran some tests, he found that she had bladder diverticulum with urinary reflux. She had to be on an antibiotic indefinitely so at home I had to have a big chart of who got what medicines at what time. I had new appreciation for nurses which I had never aspired to be. If you read my "Florence Nightingale" post, you know this already. The doctor kept calling it a defect which made me just want them to fix it but that was not recommended at that young of age. Had the boys not had CF with all of what that entailed, I probably would have felt differently but I was in the frame of mind where if she had something that could be fixed, why wouldn't they just fix it?

I remember crying to my mom that was it too much to ask that one child not have a medical condition and how I lived in fear of any of them having to go back to the hospital. I felt like all three kids belonged to the medical community and that no matter how hard I took care of them, they still ended up in the ER. There were so many appointments with various specialists. Belle also had a functional heart murmur so that meant more tests and more appointments. I hated the hospital and the chaos that was left behind with the other two kids when I had to be gone. I felt torn between the child that was sick and the two that were at home but was so lucky that I had family close by because they either went to my house to be with the two kids that were at home or relieved me at the hospital so I could go see the other kids. It was a very stressful time for everyone and it seemed that from December 4, 2001 until the twins were 5, that someone was in the hospital.

At one of the frequent appointments for the boys, there was a woman and her teenage daughter sitting in the waiting room. I am sure I looked like I was on the edge because she said to me, "Don't let them scare you. This is manageable. Your boys will be fine. Just don't treat them any differently. Handle things when they come up but it doesn't have to be your whole life." I bet that woman doesn't know how comforted by her words I was. I bet she also doesn't know that she couldn't have been more wrong at that time. As far as CF went, we were about to find out how daunting it really was.