Chug, chug, chugging along...

Kiera is still a bit sick, but seems a little better. We bagged her twice yesterday AM, but this morning was okay. She's able to stretch her nebs about 6 hours although her lungs start sounding a little wheezy at about the 4th or 5th hour. She got some good napping in the last few days which helped I think. If it's nice this afternoon we might go outside or walk down to see Daddy at work. We'll see.

She has been so interested in sucking the end of her exhalation tube on her vent which leaks saline solution, that I thought she might like a bottle. She doesn't take it from us in a feeding setting; however, I put some maraschino cherry juice with "Thick It" in a low flow bottle and left it in her play area. It's quite messy, but I put a bib on her and let her play while I'm "not watching." She's done this twice and has started getting the nipple near her face at least. Yesterday she had cherry juice ALL OVER her face and running into her nose and ears because she was lying down. I think she's getting the taste at least. It's not really in the speech therapists' plans. They want to try purees and gradually move to liquids to teach her to swallow, but I think she's thirsty and likes the liquids. The fear is that she might aspirate, so that's why we thicken the liquids. It's just that she likes her paci so much, I feel like we need to use that to help her start eating and that she's likely to start sucking the nipple on the bottle. We'll see if I get my hand slapped when the therapist comes tomorrow. :)

So I am a member of an on-line group of micropreemie moms. It's really helpful to get feedback from other moms who really know what it's like having a baby under 2 lbs. I was on one mom's blog yesterday, and she had this link to a short NY Times article on how it affects a parent's life to have their child die or come close to dying. It really echoed things I had already thought myself, and I thought Kiera's readers might benefit from reading it, too. I think it helps make clear what a preemie mom is going through daily, even after NICU and PICU.

http://www.nytimes.com/2008/04/08/health/views/08case.html?ex=1365393600&en=91989fd64174dc3d&ei=5124&partner=permalink&exprod=permalink

I think there are many outside observers of the situation that would think, "Why don't they just get over it?" or "She's big now, so you can stop worrying." The truth is, most parents have never even given a thought to what they MIGHT do for a funeral for their child. I guarantee you that every preemie mom has had the thought cross her mind. I constantly have images in my head of what would happen if I walked in the room or woke up and Kiera was decanulated, especially because she's been sticking her finger under her trach dressing into the stoma (much like a 2 yr old might pick their nose). Whenever she's sleeping, I truly look twice to make sure her chest is moving even though I hear the vent running and the SAT monitor is reading fine. How many parents know what shade of blue their baby's lips can be before it's a crisis? I can match lip color to her O2 percentage without a monitor. I think the big worry hanging over my head revolves around the question of what will happen next year when we are finally coming off the ventilator and we have to do her airway surgery. It will be PICU all over again. What if we get that far and there's a problem in surgery or she gets an infection in recovery? What will we do if she has a crisis at home when she's NOT trached?

Sorry about my little moment of venting. It's probably enhanced by PMS and no sleep. I do find it helps to voice the fears though, even if it's just in this forum. Then I can face them, and move on to my day. I guess I've stalled long enough. It's time for Kiera's bath and trach care (i.e. wrestling match).

Therese