Monday, September 11, 2006

For a Brave Baby

As I write this, Julia and her daddy are on their way home from Children's Hospital in Minneapolis, where they spent the morning. Julia was sent up there by her pediatrician in our town, to get a repeat of the kidney test she underwent a year ago (a test they don't do at our local hospital). The repeat test is to see if her kidneys are functioning normally now and she can thus stop taking her daily dose of prophylactic antibiotics that she's been taking for the past year to ward off further potential urinary tract infections.

It's been a year since Julia had her terrible kidney infection, and for the most part I try not to think about it. It's one of those things that's hard to remember head on; it's hard to voluntarily stare into the face of such a bad memory. I know that in the grand scheme of life, compared to families who have to cope with things like childhood cancer or serious disability or--God forbid--death, Julia's experience seems like the most minor of medical bumps in the road. But let me tell you, when it's your child, any amount of suffering and pain, especially in a baby too little to tell you where it hurts, or that anything hurts at all, is almost intolerable.

I truly don't have the emotional wherewithal, in my as-yet-postpartum-hormonal state, to delve into the entire tale in all its detail. But the short version is this: Julia was only 15 months old, and she had just had her vaccinations, and then she developed a fever and a variety of other mysterious symptoms, and our regular pediatrician was on maternity leave. And the myriad other clinicians we dealt with over the course of two weeks missed the boat. They said she was having a reaction to her shots; they didn't test for anything else. She became sad and lethargic; she stopped smiling, she stopped expending any energy to move or play. But her symptoms varied, waxed and waned with ibuprofen, and it was easy to take the doctors' word and assume it was just something that would surely pass the next day, or the next. Only it didn't. And eventually she started having spells of shuddering with pain, and turning gray in the face, only that would pass too, and no one knew what it was. And in the midst of all this there was the terrible night before any of this was finally diagnosed, when I mistook her middle-of-the-night cries for baby-sleep-rebellion, and I was frustrated and tired and short with her for not lying down and going to sleep in her crib. And I went into her room and snapped at her, saying, "Julia Charlotte! This is ridiculous!" And I sang an entire, very long song to her before she stopped shuddering and fell into fitful sleep. And soon thereafter it was finally discovered that all this time she'd had a terrible urinary tract infection, which had been left to fester and cause her pain, until it had spread to her kidneys.

And all this led to the eventual kidney tests she underwent in 2005, the renal ultrasound and the kidney dye test. Lying on a medical table in the hospital at only 15 months old, having a catheter inserted into her bladder to check for urinary reflux back toward her kidneys. It is a terrible thing to witness a baby suffer through tests like that. She was too young to understand why she was being put through even more pain. In the end, she got her antibiotics, and was fine. The pain went away; we went on with things. But the memories of those weeks in September last year are painful ones, because she should never have had to suffer pain for two full weeks, and it was awful that she couldn't tell us that she was suffering. And it was terrible that she was such a brave baby, when babies shouldn't have to be brave.

This morning, Julia is having a catheter inserted again, and her bladder will be filled artificially with a large amount of liquid. Then the clinicians will wait for her to empty her bladder--a tough task for a non-potty-trained two-year-old to understand, and accomplish on cue--and they will check to see if the urine clears her body in the right way. Catheter insertions hurt; and distended bladders hurt too. And Julia will not know what is happening, or why. But she remains brave, and afterward her daddy will take her for a special lunch in the hospital cafeteria, and will buy her a special toy in the gift shop. She will be okay. It's just a test; it's not serious or life-threatening. It's been a whole year since she was so little, and so sick. We're all okay now, and healthy.

She's still a brave baby.


Elise said...

OK, that totally made me teary. I remember the original infection - so sad, and so scary, because it could happen to any of us!

Shan said...

I know--I still tear up every time I really let myself think about it. Especially the night I snapped at her when she was only crying because she was in pain. Whew--knife in the heart!

Cathy said...

My daughter is going for that same test for the first time on October 2nd.It is very hard to watch anybody in pain, and even harder when it is your little baby.

Sending you hugs, and I am glad that they are getting to the root of your daughter's kidney problems. My daughter has an extra ureter on her left kidney. Originally we thought is was MCDK.

Take care!

Shan said...

Thank you, Cathy! I send you hugs too and good wishes for your sweetheart's test on the 2nd.

Donna said...

Awaiting a post to hear the results of the test... In the meantime, my thoughts are with you, and especially Jujee.