Eliza Grace was born on March 15, 2006, at 26 weeks, 4 days, weighing 1 pound 4 ounces and measuring just 11.5 inches long. She is the light of my soul and this is the story of our life in the big city.

Tuesday, December 4, 2007

Well Baby Visit ... What's That?

Today Eliza and I trekked down to Dr. G's office for yet another unscheduled visit. She had been doing really well for the past two weeks, eating close 1000 to 1200 calories a day, minimal vomiting, not struggling to eat and actually was going to the fridge and asking for her "gogo" (yogurt). Life was looking up and I was thinking if this could keep up then maybe, just maybe, Eliza could avoid a g-tube.

Then the sun began to set on Sunday night and Eliza started to hit the skids once a gain. BY 1 a.m. her breathing was labored, she was wheezing and coughing. By 2 a.m. the hourly vomiting began, not unusual given the amount of congestion she had. Her breathing was so labored it reminded me of her chest heaving in and out when she was on the vent. For some reason I can't explain, each and every hour Eliza would awake screaming, absolute blood curdling screams. Monday things improved ever so slightly and Eliza was drinking an ounce of fluid about every two hours. I had started her on her usual routine of meds and things weren't too bad, then of course darkness set in and things got ugly again. By Tuesday morning she had vomited up the few ounces of fluids she had taken in, had fought me putting the nebulizer on her (I have the scratches to show for it) and was looking pretty punky. Her diaper looked like she may have had some blood in her urine so I thought maybe she had a urinary tract infection. So with less than two hours sleep for two nights in a row, off to Dr. G we went.

After a quick once over, it turns out Eliza has bronchiolitis once again. The pinkish tinge to her urine is not blood, but crystals which form from dehydration. She is back on oral steroids since the nebulizer is not an option because her sensory issues cause her to become apoplectic when even the nebulizer mist is near her (forget trying to put a mask on her).

The really bad news from the visit is that she has lost weight. She is back down to the 17 lbs 6 ozs. which is the weight she was back in September. While admittedly she ate nothing Monday, she had been doing well for the past two weeks. So her appointment with the GI has been moved up to this Friday to talk more about placing a g-tube. Some Christmas present for the poor baby.

So this brings me to my question: what the hell is a well baby visit? And more importantly will Eliza and I ever have the luxury of attending one?

As I sat waiting to be called I saw this parade of parents and smiling infants who had all been in for their "well baby" visits. When they were scheduling their next appointment, they were given dates 3 months, 6 months and even 9 months out. Now of course I know what a "well baby" visit is. But I started to do the math on how many doctor visits Eliza has had since leaving the NCCU. Not counting the ER or an overnight hospital stay, she has seen her pediatrician 36 times in the 17 months since she got out of the NCCU, she has seen various specialists 12 times. Now it could be more, but this was just based upon my memory and calendar as I sat waiting for the doctor. 48 visits in 17 months, that's an average of almost 3 visits a month. This does not count the endless phone calls to the pediatrician (who is a saint), the times he has let me bring her to Lenox Hill for a "quickie" exam when she has been sick on the weekends.

What struck me as odd about these people scheduling the next "well baby" visit for 3, 6, 9 months hence was that they seemed annoyed that they had to come back so soon. I really just wanted to scream "get over it! do you have any remote idea how lucky your baby is not to have to come to this bloody office every freaking week?" I have been told that I need to be more sensitive to these parents, that their baby getting a vaccination is an upsetting and painful experience for the parent. But you know what, I chose not to be politically correct and will happily announce that I have no sympathy for a mother who is driven to tears because she had to watch her baby get a vaccination. Nope sorry, they need a reality check and to get over themselves and learn to be thankful that all their child needs is a vaccination. I was admittedly lacking in empathy for the parents whose kids spent a few days in the NCCU but who acted like the world had come to and end, so I guess my current lack of empathy comes as no surprise.


Sarah said...

Ugh. What is it about the 17 to 18-pound mark? I hope Eliza feels better soon. I'm so sorry she's sick. You must be exhausted, and so must she.

Cora said...

Hi Anne...
I read your post after I had posted my well baby check-up, and felt so badly for you and Eliza. My heart just goes out to the 2 of you. She deserves the boringness of a well-baby exam, and so do you. Your little peanut has been through more crap than she deserves, and it simply isn't fair! 48 appointments in 17 months is ridiculous! (I wonder how many therapy sessions you've had in that time?)

I'm sending Eliza healing wishes, and I hope that she beats this round of bronchiolitis quickly. Let us know how the GI appointment goes on Friday. Hang in there, and always know that I'm here to listen to you vent, even though Amelia isn't in the same position as Eliza right now. Hugs.