|Sick baby watching a video on the couch for her first time|
I'm sorry, but I just can't stomach thinking or talking about it.
The next paragraph mentions poop. Be forewarned and skip it if you like.
I took Calliope to an urgent care center this morning because her pediatrician's office doesn't have weekend hours right now, and the 6 am and 8 am diaper changes were traumatizing for both of us. She woke up to nurse at 4:30 am, and despite multiple deep whiffs in the diaper area, I think I may have missed a dirty diaper then. She's been nursing so much and is eating so little other food that it's like having a newborn again -- no smell. So at 6 am I didn't trust my nose, but undid the sleep sack and the pajamas and the diaper and saw the resultant mess. I took a cautious swipe or two at her, but the piercing screams of terror and the arching of her back was too much for both of us.
So I took her clothes off, in the light of just the nightlight, and carried her to the bathroom and did my best to seat her thrashing self in the bathroom sink as I filled it up with warm water and tried to clean her with my hand. She still wailed and sobbed and screamed and tried to arch her back to lift herself out of the water, but I think it was less painful than with the wipes.
After all that, I put her back in her pajamas and sleep sack and clean diaper, nursed her briefly, and tucked her back into her crib for two more hours of sleep.
At 8 am, I was dismayed to find yet another diaper situation and more screaming. This time we tried the kitchen sink. That was a little easier.
But her whole... area... is red and raw and angry. Not just, you know, her butt crack, but practically her entir diaper area is just bright red and raw and painful. My poor girl.
So after the second change, I was depleted from the suffering I was inflicted on my baby. So after some breakfast for me (Calliope refused to eat again), we loaded up the stroller with toddler friendly snacks and took the subway to the new urgent care center in Park Slope.
We were in and out in less than an hour, even with doing lots of registration paperwork. While we were waiting, Calliope discovered an old Kashi Go Lean bar in my bag from a long ago trip -- I bought two and found out with the first that I don't like them -- but she dug it, and ate some. Hooray!
I'm not sure I was impressed with the doctor -- working in pediatrics, I'm a tough critic -- and his reasoning about why her rash wasn't a big deal, but he gave us a prescription for once daily ketoconazole cream and checked her ears and her belly and said she didn't look skinny to him. The medical assistant weighed her with clothes, shoes, and diaper on and her weight was 19.4 pounds, so unchanged from a month ago, only then it was a naked weight. I was surprised because she looks and feels noticeably thinner to me... but it doesn't really matter, either, if she's lost weight from being sick. But the important thing was that someone else looked at her and that gave me peace of mind. Phew.
After that, we met up with our friends Catherine and Jack for a very brief rendezvous at a nearby playground, where both babies were too tired to play. We came home and Calliope took a 3 hour and fifteen minute nap!
After her nap and a failed lunch -- I made mac n cheese, turkey breakfast sausage, and broccoli with butter, none of which she tasted -- we went to the playground to again see Catherine and Jack. And Calliope was again too tired to play. Oh well.
But she perked up in the health food store afterwards and had several bites of banana, so that was great, and then some more of the morning's Kashi Go Lean bar. For the first time, she was grabbing things off the shelves, and greatly wanted to try out a bag of hard sucking candies and also some kitty chow. Apparently the packaging for both are irresistible.
We came home to another dirty diaper/diaper rash debacle, then a brief bath that ended all to abruptly with another bout of diarrhea.
My poor girl. Poor Mommy, too, who had to scrub out the tub but dumped all the bath toys into the dishwasher. That's okay, right?
Yesterday was the big conversation with the three doctors at MGH. My mom was there, obviously, along with my brother and my cousin. And I was there via speaker phone.
The conversation was long and thorough. The doctors sound excellent.
But. They estimate her five year odds of survival to be approximately 50%.
Because I hadn't known the staging of her disease -- because of the inconclusive pathology report -- I hadn't been prepared for that.
Fifty percent doesn't sound that bad until it's your mom who you need in your life and your baby's life 100%.
My mother seems to have a great attitude and is full steam ahead. She scheduled her full body scan for next Monday and she will start chemo next Wednesday.
But I felt like I'd been steamrolled after the conversation. Which was complicated and made more stressful by the fact that the nanny was texting me in the middle of it to tell me that Calliope was vomiting. I tried to stay at work and my medical assistant mostly shielded me from patients but when the nanny texted me at 2:50 pm to tell me that Calliope wouldn't stop crying and wouldn't get up off the floor, I was officially 110% done with work. I threw my files in a drawer and took a cab hurriedly home, preparing to take her immediately to the doctor. But once I got home, my fears were assuaged. She looked like she didn't feel well but not in any danger, medically.
So I put on a video for her -- a first, really, but she was too tired to play -- while I worked on (mostly) finishing assembling her new toy kitchen. It was good to be distracted. And then I watched my two TV shows on Hulu and did my best to avoid thinking about anything at all. My mood was all kinds of black. I know from experience I just have to get through the evening and not talk to anyone or blog or think. Just get through it and go to bed and do my best to make sense of it all in the morning.
And today was better, at least in part because I was distracted by Calliope's stomach bug. Whatever it takes, eh?
This afternoon my brother and I talked briefly by phone, and he again broached the subject of me coming "home" to MA to visit. I explained that I had to balance the needs of myself, Mom, and Calliope. There was a brief pause, and then he responded,
"Well, I hope you'll add me to that list."
"What do you mean?"
"I hope you'll add what I want and need to the list of people you are considering."
I was completely taken aback. I mean, seriously?
But I responded, "What I meant was, I have to think about how those three people are feeling, physically. Because I've been exhausted, Calliope is sick, and Mom may not be feeling well from the chemo."
But after we got off the phone, I was stewing. Seriously? You want equal consideration with me, my baby, and our sick mother?
We just talked a few days ago, and he asked me to come down, and I said I would do my best. I was already feeling pressured about it, and trying to calculate if I had the energy to come down after Christmas, after all. But was also trying to remind myself that I need to do what is best for Calliope and me, not what is best for my brother.
But after steaming about it for a couple of hours, I'm proud to say that I called my brother back and said, "I'm feeling stressed about our conversation. Because I really liked what you said the other day about trying to be there for each other. But I need to know that your support of me isn't contingent on when and how often I come to MA. And I need to know that you are doing for Mom because you want to, without expectation of how much I will do, and that you will pay attention to how you are feeling with how much responsibility you are carrying."
We had a productive conversation and I feel much better now, like I won't have to worry about him bringing up a visit every time we talk. I'm feeling very relieved that it went as well as it did.