Okay, Okay...here's your update. :)

Sorry, it's been 3 weeks. I guess I didn't have a special occasion, a major illness, a new milestone reached, or anything else to inspire me to blog, and I have definitely been feeling sleep deprived. However, one of my faithful readers sent a text message asking to "PLEEEASE update the blog," so I must be there for Kiera's public. :)

I did find some fun pics on my camera to share. We realized that though we have a year and a half's worth of crib pictures in the hospital, Kiera didn't have a single picture in her own crib at home. We kept leaving the camera downstairs for one, and since most of her day is spent downstairs, we had to make an effort to remedy the situation.

It's a simple pleasure being able to cuddle your baby in bed. It's not so simple for us, but we love finally being able to snuggle Kiera. For perspective, we've probably only managed this set up about 6 times total. We used to wish for this while she was in the hospital. All we wanted was to be able to take a nap with her. Napping doesn't usually happen at this point though since Kiera spends her time grabbing (and scratching) mommy and daddy's faces. She's a little too Toddleresque at this point.

Don't worry...that's not her working ventilator tubing (this time). We keep extras to deter her from chewing through her own vent. Like Sonny in the Series of Unfortunate Events Children's Books, Kiera really likes BITING. Just a minute...I need to stop Kiera from chewing on the electrical cords to her equipment...not kidding unfortunately. :) She's worse than having a cat. :)

This is a pic of Kiera just chillin'. She always taps her foot on her knee while she reads or examines toys. It will be interesting to see if she continues this relaxing position when she's older.

Nothing much to report. She had a cold or something and required more support (3 hour nebs, 5 liters O2, and increased vent rate of 24) last weekend, and this weekend she seemed to improve so we could return to 3 liters O2 and vent rate of 22 and stretch her albuterol nebs from every 4 hours to every 6. This may not seem big, but it means there is nothing scheduled between midnight and 6 am. Ideally, I could potentially get up to 6 hours of uninterrupted sleep. Of course, the elusive 6 hours of sleep is yet to happen. I've had to still get up each night at least twice during that time frame to suction her. A girl can hope can't she?

Thankfully, it's a little warmer this week than last week, so we took Kiera to the park yesterday to ride the swing again. It was very nice, although my mother discovered just how heavy the equipment laden stroller can get on a walk like that. Disturbingly, the park seems to be uphill both ways. I was pleased, Kiera kept her hat on better this time. She appreciated the shade, although I bought it big so she had to keep lifting it off her eyes to see. She kept her sunglasses on for 3 seconds, too, I think. Not bad unless your riding a bull. :)

Well, I guess that's all I can come up with this week. We have good days and not so good days. We have days we don't have to bag her at all and others where we bag her 4 times or more. When I actually stop to take it all in, it seems unreal. Thanks for keeping us in your thoughts and prayers. Kiera continues to need them. One day, she'll have better lungs, and this will all be a distant memory. I can't wait!

Love,

Therese