All Smiles!

Kiera has gotten over her pneumonia and stomach flu and is on the LTV (home vent) yet again. She is doing great so far! She's been on it since Friday! We took her outside again today and took her to visit the fish tank. Plus, she just loves laughing with us and playing peek-a-boo! Check out the video we took of her laughing with the link at the top right. We can't wait till we can HEAR her after her trach is out in a few years. We had hoped that this would be the month she would come home, but it looks like we will have to settle for August 7th, just in time to celebrate her first birthday at home. We're getting close!

You gotta be fast in posting or else...

Hi all! I've realized that if I don't post the MINUTE something good happens with Kiera, that it will most definitely be upstaged by something not so good.

Good Stuff from Tuesday 6/19: Kiera was put on the home vent once again on Monday 6/18 and got to take her VERY FIRST trip OUTSIDE today (to Rachel's Courtyard, the 6th floor outdoor playground, the view from which is the freeway.) We stayed outside for about 30 minutes. She wasn't feeling very well and was less than smiley; however, she did seem a little curious about her surroundings, the EXTEME HEAT (95 degrees!), warm breeze, and enjoyed the ride in the stroller. She does NOT care for getting in and out of the car seat. I've posted some photos. The other 2 pics with the bow in her hair are from Father's Day. She LOVES Mylar balloons!

Not so good stuff from today, Wednesday 6/20: Apparently Kiera's bout of "not feeling very well" yesterday turned into a pretty serious pneumonia for which she is being treated today by antibiotics and has been put back on the hospital ventilator. She had a fever in upwards of 104 and experienced some febrial seizures which they followed with an EEG. We will have to see where this illness takes us. We may still be able to get her home by the end of July. Say your prayers.

Jerry and I have ventilator training tomorrow at the medical supply rental company. We are getting pretty deft at handling Kiera's advanced medical needs.

Love,

Therese

Some Leaps and Delays...

Well, Kiera has had a bumpy week. Last Tuesday, June 5th, she was put on the LTV and lasted till Thursday when she got very sick and had to go back on the hospital vent and underwent a 5 day course of steroids and antibiotics. It was doubly dissappointing because we had expected to take her outside for the first time to Rachel's Courtyard, the outdoor playground on the pediatric floor, and arrived at the hospital for her outdoor trip to find her very sick. That was the rough part of the week.

Along with her really bad week, she has had one of her best weeks developmentally! She has been ALL SMILES! Plus, she has been playing peek-a-boo ON PURPOSE! You really have to see it! She turns her head to the side to look away from me while I say, "Where's Kiera?" Then she looks back at me really fast and laughs when I say "There she is!" It is SOOOO CUTE! She is also finally reaching for her mobile after 8 months of just looking at it. She plays with her toys more actively, kicks more, and has been passing her keys from hand to hand. She is also getting better at sucking her paci and keeping it in her mouth by herself. She has really made great strides! She turned 10 months Tuesday (7 months adjusted age).

This last week has set her back on her discharge date, however. We are still looking at July but later in the month. I am still hoping for her party to be on track for August 4th for those of you out of towners who'd like to come. More soon!

Love,
Therese

Some missed updates...

Hi, sorry I haven't posted in a few weeks. The end of school with the kids and life in general have just been running me through the wringer. I guess I failed to mention after the "Date" posting that Kiera only lasted one day on the home vent and was put back on the hospital vent. There was some disagreement between the docs as to whether it was her vent or her drugs, but Kiera had 6 of her heart spells in one day on the day they tried her on the LTV so they took her off. They sent the LTV (home vent) to get a tune up in San Diego in case the problem was with the equipment itself bringing their LTV count from 2 to 1. We are supposedly still on track for July 9th. We are waiting for another child to be discharged this week so he will give up the 1 LTV that he is using and give Kiera a try again. Noteably, she has only had 2 significant spells on May 15th while on the hospital vent, and she stopped the drug in question on May 17th and has had no more big spells (ie. that required bagging).

She is on half n half, breast milk and neocate formula, until we run out of frozen breast milk in the next few weeks. She's 15lbs 3oz now and hanging tough. As long as we get her home by July 9th, I am considering having a homecoming/baptism/early 1st birthday party all in one on either Saturday July 21 or Saturday Aug 4th. I will be consulting some out of town family members to see which is better for them before I schedule it. Keep praying that we stay on track and get her home in July! By the way, Kiera received some beautiful red mylar balloons from my friend Kim yesterday, and she LOVES them. She had a balloon once before and reacted the same. She's our balloon girl.

Love,
Therese

as always, this blog is brought to you by Great American Steakhouse... enjoy the power of meat!

FYI: Kiera has changed rooms

Just want to let you all know in case you try to visit Kiera that she has moved to the room next door, #8. Thought I'd warn you so you wouldn't be surprised by the empty space in room #7. Otherwise, not much news to report. We're just chugging along.

It's A Date (we hope!) July 9!

We met with the docs times three, a couple of nurses, and the discharge planners: and if everything goes ok Kiera comes home on July 9!!!

So the fine print: Kiera has to do well on the home ventilator for about 2 months. The home vent is akin to a propeller plane, when she's been jetting around on the hospital's "jet airplane" of vents. In otherwords, Kiera can psych out the vent just by not breating consistentally. So there is a very good chance she will move that date back.

Kiera is smiling all the time, she loves the kisses and blow-faces on her neck, and played peek-a-boo with mom today. She is responding more to her surroundings, swatting at her dangling toys and is still facsinated by her "scary sheep" mobile.

Therese and I were at the hospital last night until 11pm... Therese arguing with the nurse about the causes for Kiera's heartrate (bradys), and then her oxygen. Today the docs took her off the home vent, just in case it was the cause--as much as it disappoints us, as we don't know if this means her date is pushed back only 3 days after we were given it--Dr Glasser, her pulminologist warned that often babies will go on and off as they work their way up to the lower tech home vent. So, it's not a setback (it's not...it's not...it's not...it'snotit'snotit'snot!), and we hope Dr Glasser gets her back up to speed when he gets back from vacation on Monday.
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Again, this post brought to by the fine steak -y folks at Great American Steakhouse, an Albuquerque, NM restaurant at Tramway & Indian Scool Rd. http://steakandwine.com great American steahouse, where: It's all about the meat!

Kiera Sucks! (her paci)

Kiera has had a very good week developmentally. She has still had her heart rate drop at least once a day almost every day this week, but has come back up easily with "bagging her" (manually giving her breaths). Here's the good stuff: the physical therapists are almost ready to promote her to the 3 month developmental level. Not bad for a 9 month old baby or even her adjusted age of 6 months old! :) She's moving much more fluidly. She just needs to kick her legs more and start raising her pelvis to lift her legs up. The other things she did today that were exciting: she started grabbing and reaching for some of her toys that we hang over her head. She has, until now, been content just looking at them, but had not attempted to grab them herself, although she has always held anything you place in her path (like her trach tube). Finally, I was able to get her to suck her pacifier for 10 minutes straight tonight. I held it for her, but ever since her coma, we have been unable to get her suck back. She would just push the paci or a finger around in her mouth without truly sucking. I held her paci and held her face with my palm to try to calm her and something just clicked. We'll have to see if it's repeatable.
On a side note: her psuedomonas has cropped up again, and she's on antibiotics again. Hopefully, it won't get too bad this time around. I've attached a few cute pics taken in the last month. Kiera is over 14 pounds now.

Love, Therese