Kiera's social visit to the hospital today...

Yay! Kiera has a new cousin who was born last night! We went to visit him today in the hospital, and Kiera was so cute with him. She was really fascinated by him. The minute she saw him, she signed, "baby," and smiled big. We let her touch him, and she touched his face gently. Then when my mother was holding him, I had her stand next to Grandma, and she was tugging at his blanket to try to touch him. It was, yet again, weird to see her as the BIG baby.

Then we stopped by PICU to visit. It's on the same floor as mother/baby on the opposite side of the elevator. She enjoyed seeing everyone, and they all loved seeing her; but after a few minutes she started getting visibly anxious. She had a look of concern on her face that I might admit her and leave her there. Poor baby. I bet she was glad when we went to the car, and she realized that the whole trip had been merely a social call with no needles or anything.

Therese

NEWSFLASH! Kiera is BIG! :)

We went to the nutritionist and feeding clinic yesterday. Kiera is 11.3 kg (about 25 lbs) and 32 inches long. She's in about the 25th percentile for her adjusted age of 21 months, but the 50th percentile for weight for her height. Her head circumference is still barely in the 5th percentile for her adjusted age, but at least it's on the chart now.

So we followed this visit by a stop at my friend's house who just had a baby about a month ago, full term, and on his due date. He's 10 lbs now. It was really funny seeing him next to Kiera. I held him for Kiera to "kiss the baby." He was so tiny compared to her. I have been thinking of Kiera as a "baby" for so long, especially since she's only been home 8 months and she only just started crawling and standing at the furniture, that it was weird to see her next to him as a toddler. I remember when she was finally 10 pounds. She was 6 months old, in a coma, and VERY PUFFY from steroids. She seemed a lot bigger in my memory than this little guy I held yesterday. It seems like such a lifetime since she was that 1 1/2 pounder.

Therese

I failed to mention she is also "cruising!"

So, yeah, Kiera has simultaneously started cruising the coffee table (a little). Today she stood propped by the table for about an hour through all of Sesame street. She was active enough to pull out her G-tube button about 5 or 6 times yesterday...a bit exasperating to say the least, and it leaves me unsure as to how much food she really got. My carpet is well fed, however. She crawled all the way from the fireplace to my piano in my office! I will finally have to start child proofing a little more. Although since her crawling requires and ventilator attendant, she is generally under close observation and can have things taken away from her that she shouldn't have. I really like her Kangaroo Joey feeding pump. I was able to clamp it to the vent stand so we only have the one stand to move around even if she's on a feeding.

My husband officially announced that I am "super woman" Thursday night. :) Since he was driving to Phoenix for a quick overnight trip, I wanted to test myself and did a trach change by myself without his assistance but with him present in case I got into trouble. It went relatively well, especially with Elmo's help. The key is in having EVERYTHING at your fingertips and in the order of operations. (Good thing I'm a math geek and have learned my order of operations) :) Since during the change one hand has to be holding in the untied trach at all times, two handed tasks must happen before the change. I.E. I deflate the cuff on the current trach and disconnect the ventilator from the trach to be removed FIRST, then I undo ties and remove the current trach with one hand and put in the clean lubed up one with the other hand. While holding in the new trach, I reattach the ventilator, then inflate the cuff, and then start attaching the clean, powdered trach ties. After the ties are attached I can clean up the area and apply her foam dressing. Viola. :) She fought a little when I was trying to put the new one in, and Jer helped in holding her arms down, but I think I could get through that, too, if necessary, in an emergency. Plus, she would probably be less likely to fight if it were an emergency like a plug or decanulation. Of course, in a decanulation, one would just get the obturator and put the "dirty" one back in first, and then prepare a trach change ASAP.

Guess that's it for now. I need to bath Kiera and change trach ties. Somewhere in here I might eat breakfast. :) It's only 1:30 in the afternoon.

Therese

Kiera is REALLY Crawling!

So I know I mentioned Kiera's crawling before, but she has definitely stepped it up as a mode of transportation. She has discovered that she is not bound by the blanketed play area we have set up for her. Dang! I should have installed that electric fence! What was I thinking? Today I was on the phone, and she was playing by the fireplace. I looked away, and suddenly she was next to me by the computer chair and at her "rope limit." By "rope limit" I refer to her ventilator circuits being stretched to their max and am reminded of the old Foghorn Leghorn skit where the dog is tied up and Foghorn Leghorn has a sign and line in the sand marking the "rope limit" where he stands just beyond and smacks the dog with a paddle leaving him no option for retaliation. So Kiera's exploring required 3 ventilator relocations, and I, as her minion, live to serve. She finally ended up next to the bar across the room to play with her travel ventilator which was charging there on the floor. I guess, with another year potentially left on the ventilator, I should be prepared to be Kiera's ventilator butler for quite some time.

Therese

Kiera is 2 yrs old Today! Happy Birthday, Kiera Rose!

Pictures Not Particularly in Chronological order

Toddler Face Off


Kiera Signs "love"

Pretty in Pink

Wardrobe change before cake to save her dress from the red frosting. She felt the frosting shade was nice as lipstick too.

Kiera likes her cake

Concert Pianist Begins

Kiera Kisses Ariel on her card (upon request)

Walk with the animals

Reading her book from Grandma Hall on her chair from Grandma Wright.

Kiera's birthday bib at dinner. I forgot her booster chair amoung the two car loads of equipment and food required for this outing.

Eating the ball. Forget the food.

Kiera is not thrilled about sitting in the grass. She would rather stand.

I am so proud of the cake I made. I think Elmo turned out good enough to eat. :)

The cake I made for my nephew who just turned 9. I feel pretty punny.

Wow! It was bizarre celebrating Kiera's second birthday when she's only been home for 8 months. This was her first birthday party NOT IN THE HOSPITAL! Yeah! Of all things, we did it a little early on Saturday. It was a very nice family party, and I think her favorite gift was a little red piano from an out of town friend and loyal blog reader. :) Thank you so so much. I made her an Elmo cake, that I must say, was pretty cute. She did stick her fingers in it and taste the frosting a little, but got most of the red frosting all over my clothes. I looked more of a mess than she when it was all over. Kiera really enjoyed playing with her cousins at the party. My brother's 4 boys came in from Colorado which was new for her. She definitely gets that her cousin, Sarah, and she have more in common than the rest of the boy cousins, and she really likes to involve Sarah in playing. She would grab Sarah's hand and make her play the piano and read to her like she does with us. It was so cute to watch, especially considering last year's party, where Kiera ended up playing opossum (pretending to sleep) to block out the commotion, only opened one of her presents, and ended up being bagged during some of her party guests' visits.

My husband's parents came from California for the party and spent the last 6 days with us, so Kiera has had fun getting to know them. We went to the Butterfly Pavilion at the Bio Park and the Zoo on Sunday. It was hot, hot, hot! We had a little trouble with the ventilator battery, but it was generally a successful trip. We also ran into one of Kiera's regular NICU nurses near the elephants! She had Kiera one of the first times I held her and took care of her MANY, MANY times when she was very little those first 6 months in NICU. It was so neat that she would be someone we'd see at the zoo on (or near) Kiera's birthday! We had stopped by NICU last Wednesday when we were at a pulmo appt, but only a few were there who had worked with us. One of her favorite and pretty manly RT's cracked me up when I told him we were having an Elmo Birthday Party but that it had been hard to choose between that and Little mermaid. He said, "Yeah, I had a Little Mermaid party on my last birthday." :) My poor stepmother-in-law got to witness Kiera getting bagged yesterday. Kiera was napping and must have rolled and dumped vent water down her airway. It was a very rude way to wake up from a nap. She's been a little funky since that, and I had to bump her O2 to 4 liters and start 4 hour nebs again. I haven't had a nurse since a week ago Saturday, so it was really nice to have Jer's parents to help this week. (Oh, and my new nurse was supposed to start today...about an hour and half ago, and I haven't seen her yet. Oh well, I guess we're back to the drawing board. I have one to interview today at 10am).

We also had Kiera's optholmologist follow up last Thursday. It looks like we weren't very successful at correcting Kiera's lazy eyes through patching, so we are going ahead with planning her strabismus surgery to correct her lazy eyes and get them aligned. It will probably be next month. I hope everything goes well.

Just got a call from my new nurse who was supposed to be here. I guess she had to go out of town for something urgent and let the agency know, and apparently the agency was supposed to call me and didn't! Today is the first day of school...I guess its a d@$%n good thing I didn't take a teaching job. :) This agency is really sending me over the edge. Thank goodness for my PICU nurses! So........Sarah, if there are days you wanted this month that were already covered by the other nurse, call me girl. :) She'll be gone a while.

I guess that's it for now. I need to go up and get Kiera going this morning. I'll post pictures later today.

Love,
Therese