A Memorable Memorial Day

What a weekend! We had so much fun on Sunday, but it wiped us out! We took Kiera to our friends' baby's 1st birthday party at 3PM followed by an early birthday cookout for my sister (and an evening playing rock band). So what does it take for an 8 hour day out with Kiera? :) A WHOLE DAY of preparation. We woke up early, administered meds and nebs, tried some feeding therapy, followed by a bath and trach care. This took till about noon. Then it took about 2 hours for me to pack needed baby gear, oxygen, meds and food to allow us to stay at my sister's till late, along with getting myself ready, and wrapping birthday gifts for the 2 parties. 9 hours out on 3 liters O2 used 2 travel tanks of liquid O2 and had us on 1 of our 2 compressed tanks by the time we left at 11 ish. Since Kiera isn't quite mobile yet, we, of course, needed the walker to help her interact with the rest of the family, her pack n play for a nap later, and her booster seat to join us at the table. I usually try to arrange trips around feeding times so I don't have to pack food; however, that was not possible for this trip so I packed formula to last till 1am, feeding bags, and feeding pump. We usually just use an inline inhaler for nebs while we are out, but again, that wouldn't do for this length of time so we had to pack the nebulizer machine.


Here are some pics.


Belle of the Ball



Party at Jessica's. It got a little chilly later although it was hot most of the day, and I forgot a sweater. 1 thing! Not bad considering.


Anyway, we got home and collapsed, but it was nice to be out and about ALMOST like NORMAL people.


Unfortunately, Monday Kiera came down with some kind of stomach bug. She's been throwing up all her food and has bad diahrea. I've done 3 loads of just her laundry since last night. I have her on continuous pedialyte and had to stop her feeds for the time being. And, ohhh, the diapers! I was up with her most of the night Monday night, but had a nurse last night. The funny thing is, this is pretty much the first NORMAL SICKNESS Kiera has had, so in a weird way, it has been kind of fun. Is that strange?


Also on Monday, my stepsons rode their bikes to the pool, and on the way, Mitch ran a red light to catch up with his brother, and a car hit his bike and knocked him off. His head and arms are scraped up, but generally okay. Thank goodness he was wearing his helmet! His 8th grade graduation is tonight, so he'll have pictures of the battle scars. :) The difficult part through this was that I was stuck here and unable to go get them since I can't drive alone with Kiera. I thought Jer was still in a meeting too far away to get there in a time acceptable to the ambulance drivers. The drivers wanted someone there in 5-10 minutes or they would have to transport him to the hospital since he's a minor. Their mom and stepdad live more than 10 minutes away, as well. Luckily, my parents were available to go get them.

Gotta go. I smell another diaper.

Therese

Knees Video

Yay...Kiera started pushing up on her knees!

Okay a few pics and then I'll download the knee video since it takes FOREVER! This afternoon Kiera decided to act like a different baby. I guess she feels better. It coincidentally happened right after her brother got home from school and his friend was here. Maybe she was showing off for a new audience. Anyway, she has NEVER gotten on her knees like this. There have only been a few times for VERY brief moments. The video to come will show her rocking back and forth on her hands and knees! Yay, Kiera!




Just a cute pic of her Pebbles up-do.



Pigtails and an eye patch are appropriate for a pirate, right? She's wearing a dress that was a shower gift from her Great Grandma Wanda.



Therese

Chug, chug, chugging along...

Kiera is still a bit sick, but seems a little better. We bagged her twice yesterday AM, but this morning was okay. She's able to stretch her nebs about 6 hours although her lungs start sounding a little wheezy at about the 4th or 5th hour. She got some good napping in the last few days which helped I think. If it's nice this afternoon we might go outside or walk down to see Daddy at work. We'll see.

She has been so interested in sucking the end of her exhalation tube on her vent which leaks saline solution, that I thought she might like a bottle. She doesn't take it from us in a feeding setting; however, I put some maraschino cherry juice with "Thick It" in a low flow bottle and left it in her play area. It's quite messy, but I put a bib on her and let her play while I'm "not watching." She's done this twice and has started getting the nipple near her face at least. Yesterday she had cherry juice ALL OVER her face and running into her nose and ears because she was lying down. I think she's getting the taste at least. It's not really in the speech therapists' plans. They want to try purees and gradually move to liquids to teach her to swallow, but I think she's thirsty and likes the liquids. The fear is that she might aspirate, so that's why we thicken the liquids. It's just that she likes her paci so much, I feel like we need to use that to help her start eating and that she's likely to start sucking the nipple on the bottle. We'll see if I get my hand slapped when the therapist comes tomorrow. :)

So I am a member of an on-line group of micropreemie moms. It's really helpful to get feedback from other moms who really know what it's like having a baby under 2 lbs. I was on one mom's blog yesterday, and she had this link to a short NY Times article on how it affects a parent's life to have their child die or come close to dying. It really echoed things I had already thought myself, and I thought Kiera's readers might benefit from reading it, too. I think it helps make clear what a preemie mom is going through daily, even after NICU and PICU.

http://www.nytimes.com/2008/04/08/health/views/08case.html?ex=1365393600&en=91989fd64174dc3d&ei=5124&partner=permalink&exprod=permalink

I think there are many outside observers of the situation that would think, "Why don't they just get over it?" or "She's big now, so you can stop worrying." The truth is, most parents have never even given a thought to what they MIGHT do for a funeral for their child. I guarantee you that every preemie mom has had the thought cross her mind. I constantly have images in my head of what would happen if I walked in the room or woke up and Kiera was decanulated, especially because she's been sticking her finger under her trach dressing into the stoma (much like a 2 yr old might pick their nose). Whenever she's sleeping, I truly look twice to make sure her chest is moving even though I hear the vent running and the SAT monitor is reading fine. How many parents know what shade of blue their baby's lips can be before it's a crisis? I can match lip color to her O2 percentage without a monitor. I think the big worry hanging over my head revolves around the question of what will happen next year when we are finally coming off the ventilator and we have to do her airway surgery. It will be PICU all over again. What if we get that far and there's a problem in surgery or she gets an infection in recovery? What will we do if she has a crisis at home when she's NOT trached?

Sorry about my little moment of venting. It's probably enhanced by PMS and no sleep. I do find it helps to voice the fears though, even if it's just in this forum. Then I can face them, and move on to my day. I guess I've stalled long enough. It's time for Kiera's bath and trach care (i.e. wrestling match).

Therese

She's well..she's sick..she's well...she's sick....

I have no idea what is up with Kiera today. I swear she was WONDERFUL yesterday and this morning having finished her 5 day steroid burst Saturday morning. We even had her down to 2 1/2 liters of O2 yesterday and this morning. We went for a long walk with the stroller yesterday, although the last 1/4 mile home was all uphill, and Kiera's fully loaded stroller must weigh at least 60-70 pounds. Who needs weight training? Last night she was trying to stand up from sitting on my leg in the floor without help at all. Then she did some gutsy "back hamsprings" that make me think she'll like gymnastics.

Then around 2PM today...she started having thicker secretions and de-SATing where we had to bump her to 5 and 6 liters for significant periods. I gave her an extra nebulizer. She spiked a temp of 101 for which I gave her Ibuprofen, and it came down after an hour. Now it's 11PM and she seems to be doing better and down to 4 liters O2. Hmm. Maybe 72 hours off of steroids caught up with her? Maybe she just really likes the Xopenex she had last week? Or maybe she's not as good on the Atrovent as we thought?

The fun keeps coming. Kiera's ventilator has been recalled and it may take 3 or more months to get a replacement. The affected ventilators are a certain series of serial numbers. Kiera is completely vent dependent, and all the Apria owned LTV's here are included in this recall. So, we have to wait potentially 3 or more months for them to get new or modified ones to exchange. Apparently, there is some kind of circuit board problem that causes the vent NOT to alarm when disconnected or inoperable? As if I wasn't getting enough sleep already. At least we sleep in her room, and she's usually restless if she's having respiratory distress or I hear the air pressure when the vent disconnects, in case the alarm were to NOT sound. I guess there's not much we can do but wait and be on alert. It's still the best option for a home vent out there. At least she's on a pulse oximeter, but last week while she was sick, it seemed to have enough of a delay in picking up her desats that everytime I went into the kitchen for even a minute and came back into the room her SAT monitor would be reading 90's, and she would clearly be a little acidotic and SAT-ing more like in the 70's, a bit purple around the mouth. When her secretions are bad, she can go downhill fast. They did just start sending us different probes that I hope are more accurate. Today is the first day I am trying the new ones. At least at night she's on an Apnea monitor, too, which likes to go off for all kinds of unnecessary reasons, so we do have that back up. Of course, by the time that goes off, it would be more serious than it would have to be.

All in all, I'm not TOO worried. It just adds to my constant level of worry already. :) Of course, since Apria is nationwide, and so many of their patients are affected, I think they are at the mercy of the Pulmonetics people. There are over 10,000 affected machines and only 1357 belong to Apria. I'll ask her pulmonologist what he thinks. I might also check with my contacts at the hospital to see if the 3 LTV's they have are included in the recall. I doubt they'd be able to lend me one, but Kiera does have friends in high places. I'm sure her stay there paid for 1 or 2. :)

Oh...and scratch that previous post about maybe having a FT day nurse after the 19th. I guess she tore her rotator cuff and won't be able to lift Kiera. The night nurse I thought I was inteviewing today was just a miscommunication. So I'm still waiting for a qualified FT person. In the meantime, Jer's converting the wine shop to an office for me to do bookkeeping and bring Kiera to play while I work. Isn't that sweet? :)

Therese

Kiera's first movie!

Well, some might think it silly to take a 21 month old to a movie. I certainly would not have thought it necessary before Kiera. However, when you only have two choices, to take her with you or don't go anywhere at all, the idea becomes much more acceptable. So Jer took off work this afternoon between rushes at the restaurant to take Kiera and I to see "Horton Hears a Who." It was very cute, although a teansy bit long. I appreciated the message that "a person is a person, no matter how small" and the controversy I've seen in the news from pro-choice groups over that statement. I don't know if Dr. Suess ever intended the pro-life indications, but it certainly makes me appreciate him that much more, and given Kiera's entrance into this world at a gestational age where many would not consider her a "person," I hope that some out there will see her and rethink their position. Kiera did remarkably well in the movie. We did take her out into the hall 1 time to suction her, but that was it. If we hadn't woken her from only a 1/2 hour of her normal 2 hour nap, she probably would have been less restless. It is a long time for an almost 2 yr old to sit.

My mom and dad came over this morning and made me breakfast. Kiera "ate" with us. She's making a little headway at least in her interest in food. She grabs it and makes quite a mess. Not much, if any, goes in her mouth, but hopefully that will come in time.







All in all, it has been a lovely Mother's Day weekend. That's not all! Jer is going to rent "Phantom of the Opera" tonight and watch it with me after he gets off work "without complaining!" Thank you everyone, who made it so memorable. Here are some additional cute pics of Kiera.


She LOVES her ambu bag. Previously not captured on film she kissed and hugged it. She knows who butters her bread. :)

Crashed at nap time in her Luau dress.



She needs to be supervised on this chair, but she enjoys sitting in her big girl chair. Since then I have been "belting" her to it with a big piece of cloth.

Fake food, but it's a start. We need to support her or block from behind for her to sit at this table or she lunges back every now and then. Her legs don't quite reach the floor yet for stabilization. Got this table for $3 at a garage sale! Yeah!

Couldn't choose between binky and baby before bed. This baby doll is just about the same size Kiera was at birth, at least in length. It might be a bit fatter though. :) Look how big she is now! 27 lbs and 31 inches!


Love,


Therese

Mother's Day at Home

I was wracking my brain to remember what we did last year for Mother's Day, and for the life of me, I can't remember. If I were to guess...I would say that I worked at the restaurant and then went to the hospital to see Kiera. I didn't even blog about it. Hmm. The only thing I DO remember is that my stepsons called me in the morning to wish me a happy Mother's Day, which, for me, made my day.

This year was really nice because the boys and Jer made me breakfast Saturday (today) morning while I had a massage in my front room, and they cleaned my kitchen afterwords! I usually don't get the boys on Mother's Day, so this was the closest I've come to having a little Mother's Day celebration with all the "kids" I "mother" in the same room! And...since Jer has to work tomorrow, this is a great day for us to do it. Kiera sat in her high chair with us and actually grabbed for her food bowl from the table. I don't believe any food actually got past her lips, but she did take the spoon with food on it and put it on her face and lips. It was kind of like eating, so we clapped for her and praised her efforts. She does like applause. She was, of course, a mess and had a bath and trach care shortly thereafter.

I also got to interview a nurse this afternoon who will be able to work 7am-3pm M-F after the 19th! Yeah! I hope she catches on to Kiera's needs quickly. It will be a while before I feel comfortable leaving her alone, but at least I'll get stuff done around the house and can schedule Mary Kay appointments. I also have a nurse to interview Tuesday who I think is available nights. If I have regular people scheduled then I will be able to use my other nurses for DATE nights, field trips to the zoo, appointments, or special occasions! What a relief. The night of nursing we had Wednesday where we got to sleep a whole night without alarms was SOOO NICE! I could get used to that, especially after last night where the SAT monitor beeped for about an hour between 3-4 am because Kiera was REALLY fast asleep and her heart rate kept dipping below 60 (which is still fine) and setting off the low rate monitor. I finally made some noise and touched her to just "wake" her enough to raise her heartrate a little to make it stop. I actually don't know how to change the alarm settings, but will make sure to find out! :)

Kiera seems much better since her 3 days of xopenex, and she'll finish her steroids tomorrow. We just went back to a 6 hour neb schedule last night, and she's doing great! She's, so far, doing okay keeping her eye patch on too.

Finally, Kiera and I watched "Carousel" both for the first time today, and what the heck!? That is one Rodgers and Hammerstein meander into bizarre! The main message seems to be telling girls that sometimes a man can "hit you, and it doesn't hurt at all." OMG! It's like battered woman syndrome made into a musical! We won't ever watch that again.

Love,
Therese

Eye doctor appointment today....

We spent the early morning at the pediatric opthalmologist today. That was an experience. We had put it off till now to try to reduce her risk of getting sick, but we needed to follow up on her extratropic gaze (lazy eye) and her ROP of prematurity which she does not have. Yeah! Dr. Goldblum, I have to say, is impressive. Kiera was tired because we woke her up much earlier than usual (7am), plus she was up from 4:30 - 5:30 this morning, and cranky because she's going to be 2 soon enough, and he was messing with her; and he still managed a successful and thorough exam. I think it may have been one of the more impressive things I've ever seen. :) I have been to many eye appointments in my time, but this was an art. He said her retina and optic nerve looked fine. She is slightly nearsighted and has a stigmatism, but it won' be corrected just yet. We will try patching her good eye 2 hours a day to bring her extratropic gaze in and follow up in 3 months. These patches seem like they might work better than what we tried in Houston which she ripped off right away. I'll start tomorrow during her nap or tonight is she falls asleep for a late afternoon nap. The idea is to patch her while she's sleeping so that it's there when she wakes up and MIGHT go unnoticed.

I keep catching her pushing up to a crawl position in her sleep when she gets restless. She must be better at it then because she's not thinking about it. Hmm.

Hopefully, she'll be feeling much better soon and be less cranky and high maintenance.

Therese

Kiera's day out...at the hospital...

Well, we took Kiera to see the pulmonologist today to see what we could do to help her feel better. We ended up tagging on the G-tube surgeons and the cardiologist for an echo cardiogram. So it was buy one, get two free? Nope, pretty sure they'll all bill. :) Anyway, it was a long but very productive day, and for Kiera being sick since Saturday, she certainly showed well. She was having a bit of trouble still and really needing her nebs. We even "borrowed" his nebulizer machine for her noon and 4pm nebs. Otherwise she seems significantly better than she was yesterday when I had to bag her 5 different times. We thought we were just going for one appointment, though, and even though we had 2 1/2 O2 tanks with us, we got a little nervous between our appointment ending at 12:30 and our impromtu for an echo at 2PM due to Kiera's increased O2 needs, so Jer ran home and refilled our portable tank. We also hadn't planned to be gone so long, so we missed a feeding since we usually don't take the feeding pump et al with us.

Kiera seems to be doing well with the plethora of changes. She's on xopenex for 3 days and a steroid course for 5 days. We dropped albuterol and atrovent during the xopenex but are continuing the mucomyst every other neb and restarted the Amakacin (antibiotic) neb for 28 days even though we've only been off about 2 weeks. Her g-tube granuloma probably needs surgical removal, but is not critical enought to warrent surgery, so will wait (and look gross and stain all her clothes) until she has a more pressing need for surgery. It's too bad, we could've done it in March during her bronch if it had been this bad and we'd known.

The worst part of our long day was the overlap of Kiera's nap time again. I got her to sleep in my arms in Glasser's office AND successfully transferred her sleeping to the stroller, but she woke up about 30 minutes later in the cafeteria. It was noisier than I expected.

We seemed to make a lot of progress today. Her echo was good; although, and interesting fact is that her heart is located lower in her chest than it should be, probably due to pressures breathing, but it doesn't seem to affect her heart function. Her right side is back to normal and there are no measurable signs of her pulmonary hypertension, so we are decreasing her viagra dose.

Since getting home, she napped an hour or so, and now she's playing quite happily with her doll house. She seems much happier...still not back to normal...but improving.

Thanks for the continued positive thoughts and prayers.

On a side note: dred lock boy on Idol better be voted off tomorrow. David Cook wasn't the best, but he sang Duran Duran, so I'm sold. :) I have to admit, I enojoyed David Archuleta, but my heart belongs to Cook. A little disturbed that he was born the year "Hungry Like the Wolf" was written though....
Therese

Kiera still sick...rough night

False alarm. I thought Kiera was getting better Saturday, but she's not. We spent most the day Sunday and today giving nebulizers every 2 or 3 hours, bagged her twice last night (once at 4am and one time later but my sleep deprived brain can't recall when that was), bagged her once at about 11am, and she's on 5liters of O2 at present and we bumped her rate. I'm waiting to hear back from the pulmonologist. If Murphy's Law is anything like it usually is, maybe we'll get readmitted for the one day that I actually have nursing scheduled this week (Wednesday). Pray for Kiera to get well. It's probably just a bug, but it's making her and her parents miserable.

Therese

Kiera Sick Today

This will be quick: Kiera was a little sick today. It took most of the day to get her back up to snuff and was a little stressful for Jer and I, but we handled it, and she seems better now. We were at 6 liters O2, suctioning frequently, we bumped her vent rate from 20 to 24, her heart rate was in the 180's (normal for her is about 140's awake), and I ran extra nebs and Mucomyst every 3 hours. With none of this bringing her comfort, we ended up changing her trach and changing out her vent circuits. After that, she finally fell asleep and woke up with her heart rate back down and we got her O2 down to 4 liters and rate down to 22. We'll try getting back to 3 liters at rate of 20 tomorrow if she seems okay.

Here's hoping the night goes well.

Therese