Windows of Opportunity

The past few weeks have been rough, I guess, with Keira. She had that morning with Shelly that was amazing, but we haven't seen her so alive like that since. She's continued to be disinterested in food. According to the doctor's orders, we've been bottle feeding her every 3 hours around the clock in order to try to keep her weight up. Bottle feeding (which requires pumping, then bottle feeding) allows us to measure what she's eating and fortify the milk to add calories. Even so, she's only taking in about two thirds of what she'd been eating before. She's been sleeping most of the time. When she's awake, she's typically breathing very fast and looking away. Christmas celebrations numbers 2, 3, 4, and 5 (I know, it's out of control), largely passed with her asleep in the next room.

Assuming this is all sensory related, we've really reigned her in. We've taken her out as little as possible. However, when she's home with sitters she tends to eat even less. We've tried to keep her environment quiet. We tried feeding her under a blanket, feeding her in the dark, etc. etc. There was a period of a couple of days when Keira spend 95% of the time in her room, in the dark. My mom and I agreed that that approach didn't seem quite right either- too much like a prison. So, we bring her out more, but being in the living room with the boys running around gets her disregulated.

My mothering has turned into this impossible dichotomous endeavor. I'm very in tune to Keira, or trying to be, responding to her needs, keeping her calm. On the other side of the nursery door, though, are two very energetic boys who want mommy to play. Ronin even begs. "Please? You can feed Keira while we play spies." It's very hard to feel like I'm doing a good enough job for any of them, although I'm aware that this is the plight of motherhood in general. We've made a point to do some special things with them. We enjoyed Wreck-It Ralph and a Steelheads game last week.

Jeff has been wonderful, as always. He entertains the boys as much as he can, gets up with K in the night, and has even been cooking lately. All this in addtion to working full time, of course. Jeff pointed out to me the other day that I seem to have a new conviction or concern or intervention to try with Keira every 6 to 8 hours. Sadly, this is about right. It seems that I'm desperately trying to grasp the pattern here, to be able to predict and mediate the future, and my sense of having a hold on it changes with each passing feeding and alert period. No wonder I'm feeling weary.

***

So when I mentioned that Keira had not seemed so alive and alert since that morning with Shelly, what I meant was until yesterday! Yesterday and today have been beautiful. Keira has been awake, alert, and oriented to the people around her. Yesterday she laughed and cooed at Grama Joy and later with Aunt Steph.

We had a much-anticipated OT appointment and though K wasn't very thrilled with the therapist, I gained several new techniques and interventions. The OT described our sensory processing as a bucket. It's hard to know how big the bucket is or how long it takes to fill it up. Every sensory experience we have (what we see, hear, feel, taste, etc.) takes a little from the bucket. When the bucket is empty, it becomes very difficult to function. She described the feeling as being  "ungrounded" or "swimming." It puts our body into our panicy fight or flight mode and when we're there, we can't grow or develop or learn anything because we're all about survival. The bucket can be refilled, but it may take time (even weeks).

One of the new techniques is music therapy. The OT gave us a special CD to listen to with her twice day to help sooth and regulate her. So this morning, K and I settled down on the floor of my walk-in closet to do her first session. It was amazing how she brightened up. Man, when she is regulated, it's like she's come out of a coma. It's like two different babies: She goes from being a very cute, but distant creature to a very engaging and animated baby. Needless to say, we thoroughly enjoyed this time together.

Would you believe that the day went on to include a vorascious appetite, fewer naps, and two new sounds ("g" and "rrr")? Too good to be true, right? Well, maybe. She did throw up four feedings in a row today. But, this is all so hopeful nevertheless. It's possible that all of the sights, sounds, and activity of the holiday season depleted her and required a couple of weeks for her to come back from.

Next week: Weight check and immunizations, OT, Physical Therapy (PT), and a meeting with IESDB (Idaho Education and School for the Deaf and Blind).....Also, I'm going back to work. Ugh. I want to cry when I think about it. I feel like my life is just about balanced....before I think about work.

Thank you for reading.