Just a little surgery

I've not done so well at keeping you updated lately. Keira's progress, to me, has been somewhat tedious and thus seemed wearisome to write about. Tube in, tube out, tube in, cold, ER, tube out, tube in... 

Here are some highlights from the past few weeks:

Keira often cried and was uncomfortable when we did the gravity feeds. She couldn't seem to handle more than about 18 ounces in a day without throwing up. We transitioned to a feeding pump overnight. That is, we fed her what she would take from the bottle during the day and at night, gave her the rest through a slow drip. This worked somewhat better, but K would still throw up if she had more than 10 oz per night. Also, she dropped off her bottle feeding to nearly nothing. My guess is that the NG tube was really uncomfortable and for a kid who already struggles to breath a little because she blocks her airway with her tongue, the NG made the whole suck-swallow-breath  thing nearly impossible. So that's how we've come to the decision to go ahead with the G-tube. She quickly displays more activity and energy when she has more food but this doesn't translate in to her taking more food on her own. And the NG seems to further impair her eating on her own. 

K's got a hip brace. She's to wear it as much as possible indefinitely. This is in the hopes of preventing surgery and maximizing the opportunity for healthy bone growth and perhaps walking. The brace is a bit cumbersome, but not too bad as we can still cuddle pretty well while she's wearing it. She doesn't seem to mind it too much, but is very clear when she wants it OFF! 

K seems to be making more and more intentional sounds, which is pretty fun. It was drawn to my attention recently that Keira is progressing much better in terms of social interaction than in any other domain including cognitive, physical, etc. 

I think that that realization helped me to be a little more observant and give K the benefit if the doubt that some if the sounds and movements she makes are intentional efforts at communication. That very night, we went out to eat with my in-laws. Dave fed her caramel sauce and Janie brought her lime sherbet. Keira made it abundantly clear that she enjoyed both and would raise her arm and/or coo when she wanted more. When she was done, she'd purse her lips or turn her head away. It was a hoot...sort of like your typical baby "firsts." 

We continue to expand our network of families who have kids with disabilities. Though I'm uncomfortable developing relationships based on that lone commonality, it puts me at ease to remember that when Keira is 5, 15, 25 years old, these families will still be in the same boat. We're never in this alone. 

Earlier this week, we purchased Keira's first wheelchair, used, from a family in Boise. It was interesting walking into their home and feeling part of a club. We spoke the same language, all medical terms, doctors names, Medicaid lingo. A couple of weeks back I had a long phone conversation with Janelle, founder and president of Stop CMV. As a result, as a psychologist and CMV parent, I may well be speaking at a CMV policy conference in the fall. 

That brings us to today. K is in surgery, getting her G-tube placed, as I type. She should be out soon and, if all goes well, we'll be home tomorrow. 

Mommy Knows Best

In the past few weeks, I've not been acutely fatigued or depressed or discouraged. I have observed my own tendency, though, to skip my makeup or my socks or even my shower because it was just a little too much effort. So I guess I don't feel exactly peachy, but I'm hanging in there. 

A few things have been brought to my attention lately that have taken some wind from my sails. 

Pregnant friends. I've had several friends become pregnant recently and subsequently consulted me about CMV. (How do I protect myself? Do I need to get tested? What should I ask my doctor?) I'm happy to be a source of information and support. However, I've found it upsetting how little OBs (it wasn't just mine) know about CMV. This frustrated me more than I anticipated, seeing that I was already well aware that physicians are under informed about this. I guess the kicker, though, was that one doctor actually suggested that the friend not see me anymore until after the baby is born since I'm obviously a carrier of CMV. This came too close to home. Now it's personal. It's discriminatory. Most of all, it's incorrect! This person is more likely to contract CMV from her own children than from me. Ugh! 

Tons of appointments. Between this and that, K has had 4-6 appointments per week recently. On top of that, since she's had a cold and whatnot, she's been refusing to be put down for the most part. I'm able to do what I need to do for her, but it's a little knife in my gut every time I tell Ro that I can't play catch right now or Liam that he can't have a friend over today. This is not to mention that work is often slipping in terms of the ranks of priority. It seems that just when I'm feeling energized and caught up, K opens another chapter of more intensive needs. Jeff and I have considered the idea of me stopping work altogether, but I don't know that I'm ready to give that up yet. 

Mommy knows best. We've all heard that phrase before. In recent weeks, the reality of this statement has rung so true. 

However, rather than being empowering, it canotes a feeling of isolation, as if the safety net beneath me has some holes in it. I guess I would like to think that if K is in trouble, I could hand her over to a doctor and he/she would fix it. And though I surely don't have the medical training of a doctor or nurse. I do, however, know how to read my daughter's signals (they all think she's sleeping), and am aware of all of her conditions, in order of what is most concerning, along with her treatments and complicating factors. Her bedroom has it's fair share of medical supplies and equipment and I'm not squeamish about using it. We've spent enough time in doctors offices and hospitals that I think I'm more or less aware of the limits of what can be done. Much of what they do, I can do at home, and I'm much more equipped than your average nurse that walks in, to know how K is doing at first glance. When you're a healthy person, it seems that medicine has an infinite number of options, should you get sick. It's a little disparaging, I suppose, to enter into the place where that just isn't true. I had one experience recently, that really drive home the Ida that Mommy knows best and had me feeling a little let down. Keira had her NG tube in and she got a cold. As it goes, she struggled to breath, so we had an ER visit. Two days later we visited her pediatrician. That afternoon, as Keira was snorting and coughing, I wondered if we should just take the tube out until she was better to help her breath. So I called the GI, who replied, "Absolutely! That's a great idea!" And so, I removed the tube and she had much less obstruction. "Why," I wondered,  "did that have to be my idea? We saw two doctors in the past three days! Why didn't they suggest it?" Put simply, I know best. 

Compulsive coping. I stand here alone with Keira in the recovery room. It's nobody's fault but my own that I'm here by myself. After waiting two days for the GI doc to call, I spoke with him on Wednesday and when he offered a Friday surgery, I snatched up the opportunity. Jeff had a couple of appointments he could not reschedule. I really should have just scheduled it for next week. The G tube is necessary, but not an emergency. I'm seeing that when things are going on that make me feel out of control, I lunge for things I feel like I can do. Generally, this happens in things associated with K...if something can be done, let's do it NOW. The subtext is so I can feel like a good mom. This would explain why last night, I agreed to do a promotional event for the business and was scurrying to pull together items for the Moppett Toggs consignment sale. So not important in the grand scheme of things, but I accomplished something! Sigh. Keeping busy isn't always a bad way to cope, but it is when I'm busy at the expense of more important things. 

K's out of surgery. Sleeping peacefully. We're waiting to go up to her room. Probably be here until Sunday. 

Love to all of you!