On a Lighter Note...Kiera understands Toddler Property Laws

I laughed today because I had 2 of Kiera's dolls. I handed her one and held one myself, so she immediately wanted the one I was holding. I gave it to her and picked up the other, to which she responded by taking the one from my hand again. It cracked me up. Toddler Property Law: What's yours is MINE. If it was MINE and I give it to you, it's still MINE. For a kid who doesn't talk, she certainly seems to communicate well. :) We've been working on some sign language for a while now. She understands perfectly well the signs for mommy and daddy, but she insists on grabbing my hand to put on her chin instead of her own. I've tried using her hand on her face, and she smiles because she knows the sign, but now her response is to put my hand on my face for me. It's adorable. I'm not quite sure how we are going to progress to her using her own hand independently.

She went to her first birthday party for a friend last weekend. She seemed to have fun; although, it was during her nap time and really stretched her tolerance of me running her social life.

The most fun thing this week was we got to take her to mass. I cried when mass started because it just hit me that this was such a delayed chance to feel normal. Our church had a special mass for the handicapped and their families and care givers. It was much lower attended, like 30-40 people, so I was less worried about exposure to bugs. I also felt more comfortable about her vent alarms and such going off during mass since we were with people familiar to the irregular. There was a pot luck afterwards, so we took her booster chair to include her at the table. She just played with utensils (Kiera is still very wary of any FOOD and won't eat), but she seemed to enjoy being part of everything. The funniest thing was she would cry EVERY time the congregation would sing. It was like clockwork. I don't know if the volume was too much for her or what? Maybe watching American Idol has made her a critic. :)

I still need to schedule her hearing screening but was waiting till RSV and flu season were over. I guess they may be able to give some insight into what's up with her. She'll have to be sedated for the screening though...she has to be pinned down just to look in her ears. I know she can hear, but maybe she still has some sensory issues. I also need to schedule her primary pediatrician's appointment and follow up on her vision and extratropic gaze. I was avoiding those for the same reason.

Therese

Chasing the elusive 6 hours of sleep...

Well, we've been on a 6 hour neb schedule since the 23rd, but no such luck in getting any REM sleep. Nursing has also been pretty scarce this week with maybe 8-16 hours a week covered the last two weeks. On top of that, I spent the last week and a half on vicodine for an infected root canal that had to be pulled yesterday. I am beyond tired. Last night I went to sleep at 12:20AM after her midnight nebulizers. I got up for false disconnect signals at 12:45 and had to rearrange tubing to make it stop. I was up at 1:45AM to suction Kiera, 3:00AM for a false apnea alarm because she was tossing and squirmed out of the belt, 3:45AM to sucton her again, and 4:15AM to give Kiera Tylenol because she was so restless I thought it might be growing pains. I went ahead and added formula to her feeding pump at this time to save another awakening by the feeding pump at 5. Tylenol seemed to help; although, now that I think about it she may have been unable to sleep with worry over who would be kicked off American Idol today. (She's rooting for David Cook). After the Tylenol I slept till the alarm went off at 6:00AM for her nebs and meds. Thankfully, Jerry got up and did 6 AM meds and nebs, so I went back to sleep. Of course, Kiera sleeps through most of this most of the time, so I truly enjoy the questions regarding whether she is "sleeping through the night" since she's been sleeping through the night since she was a month old.

Unfortunately, this is not an unusual sleep schedule for me. The last few nights were about the same. If one more mother of a term baby tells me, "It's just like nursing," I'll smack her. (At least one can sleep while nursing and while the baby is sleeping. If a nursing mother lets her baby cry 5 minutes before waking up, the baby is unlikely to die in the interim! And, of course, feedings every 2 hours don't continue till a baby is almost 2 years old. Oh...and let's not forget how much I enjoy the reminder that I didn't get to nurse, despite pumping religiously for 10 months!) Ahh...it felt good to get that out. :)

At least when I have morning nursing, I have them arrive at 6:00AM, and I go to our room to sleep sans alarms. (We sleep in a queen bed in Kiera's room, not nearly as comfortable as the bed in ours btw.) So I did get 5 hours Monday morning after the nurse arrived. That should last me till next Wednesday when my next nurse comes, right? Another PICU nurse has voiced interest in doing some homecare on the side, so hopefully she will come work for me too. My poor nurses are already working full time in PICU and picking up extra shifts for me. There just aren't any available home care nurses qualified to take care of Kiera. If there were, Kiera is qualified to have 100 hours a week of coverage. If I lived in another state, this would probably be possible. The grass is truly greener sometimes.

Thanks for tolerating my rant. Maybe it's the drugs, the tooth pain, severe sleep deprivation, or 21 months of this with at least another year or two to go that's making me "a little cranky." It can't all be sunshine and roses. I'm sure I'll be back to cheery next time. Until then....

Therese

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