Happy Halloween, 2008!

Today was so much fun, I almost cried. This was Kiera's due date had she gone to term, and this was her very FIRST Halloween at home and not in the hospital even though it's her third. A little SNAFU had our camera left at work, so these are pics from my brother's camera, and I have a few on my cell phone camera once I figure out how to get pics off it. I just had to include the pic of my nephew scrambling up the stairs with his dragon tail wagging. Too cute!

We went trick-or-treating with Kiera's cousins. Daddy was Winnie the Pooh, Mommy was Eyeore (It looks more like Eyeore when you see my tail on the back), and Kiera was Piglet, The ventilator was cleverly disguised as Tigger (her big stuffed Tigger riding the stroller canopy). The boys dressed as Halo II military type characters. It was cute...they did our recon and scoped out houses ahead of us. Unfortunately, 3 out of 4 houses in our neighborhood have stairs to their front door, so I often had to hold her pumpkin for her while she waited at the foot of stairs. Next year will be even more fun if she's walking.

Kiera actually sucked on a Dum Dum sucker for about a half a block!!!!!! It was so cute. Later when her hands were sticky from the sucker she tried to blow her cousin a kiss, and got distracted by her sweet hands.

The best part was after we got home. Kiera sat on the floor and started pulling candies out of her pumpkin. It was such a big girl thing to do- especially since the boys(14 and 16) were on the floor next to her sorting through their candy too.

I can't wait to see the pictures.

Love,
Therese

"Don't Panic!" (Nerd alert)

If you understand the reference in my title then you are just the type of nerd to which our family can relate. If not, then you might end up in a Vogon hold appreciating poetry when aliens finally decide to invade our plant. I digress....

So something funny happened today. Kiera had a blood gas drawn on Thursday in the hospital before discharge. I had called her pulmo Friday to make sure he had seen it and see if he wanted to do any vent setting changes, so he called today having looked at them. I don't remember all her numbers, but her Ph was 7.46 I think and her CO2 levels were 46! This is a wonderfully low and almost normal level for Kiera. Her levels used to be 50-60's when she was WELL which are horrible for someone else but were great for her. When we had her in a coma a few times last year, it always followed CO2 levels in upwards of 100. One time they were 180!!! So 46 is fantastic!

Now for the funny part (for those of you patiently waiting for the connection to the title): at 46 the gas reading is labeled as a "panic level." If this were a normal individual's lungs, I guess they might be prone to PANIC at 46, and yet, here we are rejoicing. :) Ahh, what a skewed world view we have.

This is a great sign of her overall pulmonary tree improving. We have been noticing much lower pressures in her lungs in the last few months where she used to have pressures in the 50's, and now her pressures are in the 20's. This means her lung tissue is growing and becoming more elastic and less difficult to ventilate. This is a good premonition for weaning in the future as long as we get through the winter infection free. So she is down to a rate of 16 and on 2 1/2 liters O2 (about 30%).

So, "Don't Panic," all is well.

Therese

Home and grumpy...

Kiera is recovering, but she's still pretty grumpy and napping a little more than usual. I touched the spot where her porta-cath is last night, and it's a little creepy to feel something that big under her skin. Her g-tube site is red and kind of puffy. And the poor thing woke up this morning with her eyes pasted shut with eye gunk.

I did notice last night that she was really adept at picking up some croutons and putting them in a fast food bag, and this morning she seemed much better at her shape puzzle than in the past. I'm wondering if her depth perception is so much improved since her eye surgery that it is making a big difference for her. I think we might see a big change in her fine motor skills.

Oh... and I lost another nurse today, but am gaining a NICU nurse I interviewed last week who already knows Kiera, so I guess I'm at status quo. I guess the nurse I lost was only working for me while waiting on a previous full-time committment to become available again. It surprised me, but I guess it was her plan all along.

Chuggin' along.
Therese

Kiera's Surgery Went Well

Kiera's surgery yesterday went well, and I'll be bringing her home this afternoon. She was pretty pissed off, but recovering nicely. She started crying the instant we started to put her on the hospital ventilator yesterday, as if to say, "Nooo, don't leave me here." I felt so bad, but she calmed down and we read some books. Then she fell asleep and was asleep when she went in to surgery. I wonder what she thought when she woke up afterwords. She'll probably never want to go to sleep again! :) We took her a giant Tigger that I found at Other Mothers for $5. (I love that store!) She enjoyed it, and it will compliment her Halloween costume nicely. I just held and cuddled her till she was ready to open her eyes. Then she watched an Elmo video and slept afterwords. Thank goodness for Little Mermaid which she was watching last night. I was able to leave and come home and sleep, and she pretty much didn't even notice us leave. Her eyes look aligned already, and I guess it will just improve. Having the porta-cathetar will be great for winter. The peripheral IV she had for surgery took at least 2 tries and only lasted till the end of surgery, so I think we made the right call. She won't need any IV sticks next time she needs a line. I've been telling people that we basically added a "faucet" to her veins for easy access. :)

Thanks for your prayers.
Therese

Kiera's feeling better and getting ready for surgery

Well, we weathered the stomach bug, and a few weird respiratory days following. Kiera doesn't want to eat again. Apparently 2 days in about 10 months was enough for her.

She is scheduled for her lazy eyes corrective surgery (strabismus surgery) in addition to a g-tube granuloma removal and a porta-cathetar placement at the same time on Wednesday the 22nd, so we are prepping for that. Her gaze is extrotropic meaning both her eyes drift outward so the surgery will pull those muscles inward to try to align her eyes. Right now she tends to switch between the two. The porta-cath will provide us IV access through the winter, so that when she does get sick we can administer IV antibiotics without the drama and torture of multiple sticks to try to get an IV in her poor little scarred veins. I'll probably bite the bullet and sleep at the hospital with her this time. It's getting harder on her to stay alone even though she knows everybody. Please pray that she comes through it all successfully.

I'm excited because one of the nursing agencies sent me a nurse today from our NICU who actually had Kiera quite frequently way back when she was iddy biddy. She still works full-time in NICU, so she'll just be available 1 shift a week, but every little bit counts. This will give me more consistent coverage on Mondays and Fridays with my other 3 PICU nurses filling in. The best part is that I know she is trained and capable.

It looks like we'll be opening our restaurant, Independence Grill, in November. There is so much to do. Keep an eye out for us. We'll be serving the best burgers (American Kobe Beef) with flavorful and avaunt guard toppings in addition to other great offerings like our portobello mushroom burger, American Kobe beef hot dogs, prime rib in our stone oven, and more. Everything is coming together.

Therese

Stomach Bug Revisited

Well, I guess one week of good health at a time is all one can hope for? Kiera started throwing up yesterday afternoon, coincidentally 24 hours after her flu shot. We stopped feeds and ran 24 hour pedialyte overnight and got her back on feed today; however, she seems a bit funky tonight. She hasn't started throwing up yet, but her tummy seems a bit full, and she hasn't pooped since this morning. I guess we'll see how things go overnight. Pray for Poop. :)

Funny thing: We received the annual report from Ronald McDonald House in Houston. BTW- they withstood a huge amount of damage from Hurricane Ike and are currently closed for repairs, putting their current tenants up in hotels. We had already been planning to contact our local RMH to hold a fundraiser for them as part of our grand opening for our restaurant in November. Anyway, the funny part was looking through the report tonight. They have pictures of kids on the front and back covers and throughout the book. You've all probably seen stuff like this before and wondered who those kids are. The weird part was that I knew about 75% of them from our stay at RMH last year. I was at many of the events pictured. Unfortunately, since our baby was in the hospital, we personally didn't make as good a photo opp. :) It was definitely different feeling like an insider for one of those random mailers we all receive instead of an outsider. It's so easy to go through your everyday life and see all those faces as just nameless faces. Once you know their names, they can never just be faces again. I hope they never will be. Here's a face the report missed:



Therese

HUGE NEWS: Kiera actually ATE food 2 days in a row!!!!!!

This is BIG! If you haven't had a kid with an oral aversion then you may not appreciate this. Apparently my own brother just realized after almost 2 years that Kiera has been fed by G-tube(since January 2007) and has not been willing to eat by mouth. Kiera was fed by NG during her first 6 months prior to G-tube placement. She has always sucked a pacifier and used to like tastes of juice and tasted food once a day for about 2 weeks until her second swallow study in Dec 2007, and suddenly decided that eating is not for her. Last night and this morning Kiera actually ATE, by mouth, with her speech valve in line. Last night she ate about 1/2 a container of 1st foods carrots! The container is probably 2 oz so maybe she ate an oz? It was about 3 teaspoons I think. I'll have to measure more accurately. This morning she ate about a third of a 2nd foods container of pear/strawberry granola which is, again, about 3 teaspoons or an oz. It was so exciting! I don't even know how much a 2 year old should be eating daily to get her full nutrition, but this is an excellent start considering just last week she would barely let 3 tastes go in her mouth. That's all for now...I need to give her a bath and get going on my day (now that it's already 12:30 in the afternoon.

Therese

We ask your forgiveness...

I previously failed to post pictures of Kiera's many travels since Kiera got sick and interrupted my blogging life. Also...I didn't want to get found out. We are supposed to keep her away from large crowds and dusty environments, but we couldn't help taking her to the state fair the Thursday prior to her pneumonia hospitalization. She did great at the fair, and we really wanted her to see the LIVE farm animals instead of just the ones in her books. She was a real trooper and did well even though we discovered after returning home that her tank was malfunctioning and only delivering 1 liter O2 instead of the 3-6 we thought she was getting. We had treated the minor de-sat's as environmental or monitor malfunction and gave a neb while there, but all in all, she did surprisingly well (a didn't touch much). Here is a pic with a goat and one at the horse pavilion. She was more interested in watching her brothers' antics.




I am using the blog today as a forum to confess our sins involving Kiera's many travels to her pulmonologist who inadvertently found out about our trip to the fair from the PICU nurse we ran into while there. What he doesn't know, is that in addition to her busy week attending the foods show, the fair, and a church family fun night (which I believe is ACTUALLY where she got sick from playing on the floor), we have actually been taking her many other unapproved places, any one of which could be the culprit for this last virus contraction. However, since he told us early on that it is better to ask forgiveness than permission...we now humbly beg his forgiveness. Here is the photographic evidence of our indiscretions:

We started with fun locations close to home in New Mexico in order to expand her world. Developmentally, these experiences have been so enriching for Kiera.


The Rio Grande Petting Zoo...She signed, "Kitty." It was SOOOO cute!


Carlsbad Caverns, NM...More wildlife experience digging through bat guano.


We want Kiera to experience her parents' heritage, so we took her to our old stomping grounds. Daddy remembers fondly trips to Utah to visit his grandma and other relatives, and, of course, I can't imagine a world without nuclear waste from Hanford Nuclear plant in Washington state where I spent my childhood.

Utah Arches National Park...a bit dusty, but overall, an enlightening experience for her.

Since she's on a vent, it is a "closed circuit" as I am often told, so I figure the fallout from this waste storage site would be inconsequential to her...and, well, it's too late for me. I drank the water growing up. One must also consider that this baby has had more x-rays in two years than Wonder Woman has received in glances from Superman.


Of course, the real test is international travel. Did you know you can get Apria Healthcare services in other languages?


I told her not to "pet" the lepers at this leper colony in India, but we had our Purell with us, so I suppose it was okay. Those silly 2yr olds! You can't tell them anything!


The walk at the Great Wall in China was a doozy, especially with the stroller weighed down with a good 40 pounds of additional equipment. I was so proud of Jerry. But, in our defense, we did get Kiera an Avian Bird Flu Shot before we went.


Okay, Mount Everest was admittedly a bad idea so we just took a picture at Base Camp, and went directly home. We did sell some of her O2 to some fellow hikers for the rest of the trip. These are memories that will last a lifetime.


So again, for these and our many other transgressions...we are truly repentant. It's time to move forward though, and forget the past.

Therese

Kiera says, "Mama!"

One of the benefits of leaving your 2 yr old in a hospital room for a week is that she develops separation anxiety and learns to speak up to get attention. :) Since coming home she has decided to "cry out loud" every time I leave the room, or even appear to be getting ready to leave the room. By "cry out loud," for those of you with non-trached children, this is a BIG deal. She has to get enough pressure behind her to make sound past the trach cuff and ventilator pressure. It's not the volume or duration of a non-trached kid's cry, but it certainly gets noticed when we normally have a silent baby.

Anyway, this need for me to be in the room at all times combined with her speech valve trials with the therapist has inspired her to say, "Maaaa- ma," to get me to come back in the room. It was so sweet to hear(even though it sounds like a whine) that I cried. I thought I had heard it before at the hospital a few times with her cuff still inflated, but coming from her, it sounds kind of like a bleeting sheep, and it was easy to second guess what I heard or chalk it up to just noises made while crying. The therapist and I tested her a few times today with the speech valve on by having me leave the room (I was mixing formula) and then come back when she called, "Mama." She repeated this at least 4 times. Unfortunately for Daddy, the "D" sound is much trickier, so he'll have to wait, I think. The Latin based languages are clearly a maternal conspiracy to gain power over fathers.

In addition, she has been willing to "taste" a little bit of food and drink. Some tricks have been unusual. She likes prunes, expecially since I think she's been uncomfortable pooping since we changed her over to a daytime only feeding schedule (no overnight continuous feeds), and the other night when she seemed uncomfortable, I offered her prunes and said, "They'll help you poop." She seemed to understand the logic of my statement, and now that phrase seems to encourage her to try things. She's been chomping on carrots, but has quite a bite and can break off big pieces but then not know what to do with them, so I will have to DC these for a while even though that's what the hospital feeding clinic recommended. Frankly, I'm having more success going against their recommendations. I just don't think they know Kiera and are treating her like a "typical kid with a trach and oral aversion" rather than adjusting their philospohy to her. So now I need to go buy more prune baby food. Of course, she only eats about a teaspoon in one sitting. Other parents would hardly call this eating, but for Kiera, this is HUGE! She also likes to drink when we sing "Drink, drink, drink" to the tune of "Jingle Bells." On "Elmo's World" on Sesame Street, he always ends the show playing Jingle Bells and singing the topic word to that tune. She LOVES this song, and smiles when I play it on xylophone, etc, so I thought she'd feel comfortable, and it seemed to work. Yeah! Again, drinking only involves about 5-10 cc's (1/6th to 1/3 of an oz) at best. But at least the cup makes it into her mouth. She seems to prefer sippy cups without low flow or spill proof lids, so I have to remove the spill proof valves and monitor her so she doesn't throw it and let it run all over my carpet.

Cheers!
Therese

"Does She sleep through the night, yet?"

Ode to a preemie Mother and an elusive night's Sleep:

Kiera has been sleeping through the night pretty much since birth.

She slept through the night for most of 514 days in the NICU and PICU.
She slept through the night while having diapers changed, blood pressure and temperature taken, or blood gases drawn every 4 hours.
She slept through the night while Mother was getting up every 3 hours to pump breast milk for her. She slept through the night when Mother received 4 am phone calls from nurses who had to bag or reintubate her; calls which always began with "Kiera's fine now, but...."
She slept through the night when Mother would wake up from nightmares that she was dead or otherwise in crisis.

She finally comes home. She starts sleeping through the night around 10 PM.

She sleeps through the night while vent and baby are carried upstairs by 2 exhausted parents.
She sleeps through the night while a pulmonary vest treatment shakes her lungs and sounds like a helicopter circling the neighborhood.
She sleeps through the night while Mother gets up to run nebulizer treatments every 2 to 4 to 6 hours depending on her health always starting one at midnight in hopes of mother getting to sleep through the night.
She sleeps through the night when Mother gets up to suction her trach tube.
She sleeps through the night when she shimmies out of her apnea monitor and sets it off with an alarm loud enough to wake the dead...but not her.

She sleeps through the night most soundly when she is feeling well like last night.

When she is in a deep, deep sleep, she exhales around her trach cuff allowing pressure to escape and setting off a low minimum volume alarm on her ventilator; thus waking Mother as she continues to sleep through the night.
When she is in a deep, deep sleep her resting heart rate drops below 55 setting off her SAT monitor in an annoying and constant roadrunner-esque "beep-beep, beep-beep;" thus waking Mother to hit the silence every 2 minutes from 2:30AM-5:30AM as she continues to sleep through the night.
When she is in a deep, deep sleep triggering all these alarms, Mother's sleep deprivation evolves into bizarre quickie nightmares between hitting silence involving scenarios of inability to function in an emergency trach re-cannulation due to ... lack of sleep, as she continues to sleep through the night.
When she is in a deep, deep sleep, her mother's inability to rest evolves into nighttime ruminations of how exactly she will explain this to the mother's who quite innocently inquire, "Does she sleep through the night, yet?" ...as she continues to sleep through the night.

6 AM arrives. A nebulizer is given.
A brief wink is caught.
8 AM arrives. A nebulizer is given.
Another brief wink is caught.
9:30 AM arrives. Meds are late. A feeding is late. A baby who sleeps through the night stands in her crib, 2 yrs old, smiling, "Good morning, good morning!" having had a fantastic night of sleeping through the night.
Mother's coffee is ready.