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Saturday, February 28, 2009

A Good Week

This was a great week. The babies saw their pulmonologist for a post-hospital checkup. He agreed that they're doing great. He sympathized with the hassle of making them wear their bi-pap machines at night, and just told me to do the best we could with it, and not to worry right now if they are only on their machines for a few hours per night. I told the doc as soon as they're old enough to be reasoned with (aka "bribed"), we'd try to go all night. But their lungs sound great again, and hopefully we don't see the inside of a hospital again for a long time.

Jenna had a great week, as usual. The sophisticated vocabulary that continues to tumble out of her mouth amaze us, as usual. Kindergarten registration is in ten days--yeeps!

I finally saw Twilight at the theater this week--score! It sort of sucked--bummer. I will wait for the extras on DVD next month and hopefully time passes quickly between now and then. I can't wait to see it again and hopefully I'll like it better the second time around.

I got a new iPod. Most of my songs won't transfer over from my old iPod and my new iPod. I've always had problems with music files that I obtained from old fashioned music CD's, but now most of the songs that I've purchased on my old iPod won't transfer over, either. Apple says I can only download them once, so there's no help there. Wah! All that money wasted! Off to the library to check out dozens more individual CD's to rip one little song off of each one. I love iTunes, but I refuse to give them extra money for the songs that another Apple product won't recognize now. Grrrr.

Sunday, February 22, 2009

Dr. Swoboda and King Cake

Great news! The babies finally got onto Dr. Swoboda's schedule! She's a pediatric neurologist at the U of Utah specializing in SMA patients. We were trying to avoid traveling during flu season, but since she can't squeeze us in until the end of April, it all works out. Score! Dr. Swoboda is one of the leading researchers for SMA, and her advice is widely sought after by SMA families. More info on Dr. Kathleen Swoboda: http://medicine.utah.edu/neurology/research/swoboda/

Mardi Gras is this week. Where can I get a King Cake? In the past, we've contacted famous bakeries in New Orleans and they've happily--expensively--Fedex'd us a King Cake. But since that cost no longer makes sense to our budget, I was hoping to find something more local--cheaper. We're working with Jenna to teach her about Fat Tuesday and Ash Wednesday and lenten Fridays and such, and I thought that a king cake might speak to her the way ash on her forehead wouldn't..... where on earth might I find a king cake locally?

Saturday, February 21, 2009

Jenna's belated birthday pics

With Lauren getting so sick the day after Jenna's birthday party, and the doctor's visits and hospital stay which ensued, I didn't get a chance to properly post a quick recap and photos!

Jenna turned 5 a couple weeks ago. Her birthday party was over Super Bowl weekend. This year, we finally gave into her begging and held her party at Peter Piper Pizza. Why fight? If we have it at home, we count on warm weather to keep all the guests outside, plus we always end up serving more expensive food. Plus the cost of a jumpy house or whatever. Peter Piper winds up to be less expensive in the end, I think, just by a hair.

So many friends and family came. We were so blessed to have so many people come and give their love and attention to Jenna. And the gifts! There's nothing that the girl should want or need now until at least Christmas 2009! What a haul.

I can't believe it will be time for kindergarten registration in just a few weeks! That's how I know I'm getting older--it's all fun and games while your kids are little, but when they reach a milestone birthday (yes, I consider age 5 a milestone!), you suddenly realize you're that much older, too. Blah. LOL!











And a short video of the reluctant birthday girl getting sung to:

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Thursday, February 19, 2009

My Raggamuffin Children

Old MacDonald is a favorite song around here. Here are the twins, in all their raggamuffin glory, ee-eye-ee-eye-oh'ing the night away.


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Wednesday, February 18, 2009

You'd never guess that these kids were ever sick.

Seriously. All they do all day now is play and smile and chatter. Lauren, especially, is extra chatty, and Kyle is especially happy. They excitedly shriek and chair dance to music and eat everything in sight and sleep well. They even tolerate their AFO's (leg braces) well, and tolerate their new bi-pap machines well.

I'm still catching up on my sleep, but still, I still wonder who these children are? Surely not the sickly, coughing, feverish, hospitalized little humans from a week ago.

And in case I haven't mentioned it, goodness I am so beyond happy that I don't have to monitor their inputs and outputs anymore. Nobody in my whole house cares how many millileters of urine has been excreted from any of us. Score!

As a side note, if you haven't already, please visit and "sign": http://www.petitiontocuresma.com/

From a few days ago in the hospital:

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Monday, February 16, 2009

HOME.

We. Are. Home!! Both twins were discharged this afternoon. Thank all of you for each and every prayer said for us. And for the flowers, and balloons, and candy and stuffed animals! ((hugs))

Being transported to radiology for swallow studies (instead of a stretcher or a wheelchair, they use a Radio Flyer wagon at this hospital! LOL)


Babies' last day in the hospital.







Sunday, February 15, 2009

Happy Days

What a great start to the day. Lauren has been off of oxygen all day yesterday and last night and is satting still at 99-100%. Kyle is down to 2.5L of O2, but only while he sleeps. He breaths room air all day while he’s awake. Lauren is off the IV, and Kyle’s is turned down to the bare minimum, so today will hopefully be a great day for eating and drinking around here. Now that the O2 situation is practically a non-issue, we just have to show that they have appetites and can keep themselves hydrated and then we can go home!

There are rumblings of discharging Lauren today. Kyle may be a day or two behind. Keep your fingers crossed!!!

Saturday, February 14, 2009

Good things that happened this week

1. Local vendor Valley Respiratory Services came by to meet the babies and give them thousands of dollars of breathing equipment donated by manufacturer Respironics. And the babies will be featured with Respironics in an industry publication later this year. I can't express how speechless we are at this act of generosity without maintaining my speechlessness, so suffice it to say that we were flabbergasted at the gesture and are deeply thankful to them. This equipment is for use at home after the babies are discharged, and they wouldn't be discharged without it. Thank you, Valley Respiratory and Respironics!

2. The twins' applications for Medicaid were just approved, and retroactive to February 1! We were estimating that this hospital stay was going to cost us about $10k out of pocket after our insurance is billed, so having Medicaid for them and retroactivating it is just amazing to us. We are thrilled. Thank the heavens for small miracles!

3. So many people donate their time and money to the patients at the hospital here. Some of it brings tears to my eyes. Today on our breakfast trays, there was a cute, handmade Valentine's Day placemat instead of a the usual white paper liner. It was made by a girl from a local school, with stickers and doilies and it's adorable and festive. Another school donated handmade Valentine's Day window clings, which are very cute decorations for the room. The Phoenix Coyotes have been by (but not allowed in the room since we're "contagious"). And everyday, I get coffee from the Kohl's Cares For Kids coffee cart, for free. It's just little things, but they're nice touches to take the edge of sometimes.

Friday, February 13, 2009

More of the same, and also I'm losing my mind

Babies are stable. Improving slowly. But neither one is eating or drinking to the satisfaction of their doctors, and so we live under the constant threat of NG tubes still. So far I've argued against them effectively, but Lauren did have to get a new IV put in. Yesterday, her intakes and outputs were just too iffy, and when today also got off to a slow start, the doctor stopped messing around and started her on fluids again. I'm bummed. Another IV. Yet another thing to have to be rid of in order to go home.

Both babies are only on bi-paps now while they're sleeping. While they're awake, we're busy trying to stuff their gullets full of food and drink, and we fit in some playtime, too. The play center next door brings us new toys every few days to cycle through. Which is considerate of them, since the babies can't leave their rooms since they're considered "contagious" still. I don't think they're considered non-contagious until discharge. Which is annoying, because I've asked all the doctors if they're still contagious, and they agree that they're pretty much not. But whatever.

Another main issue right now is oxygenation. Neither baby can keep himself/herself oxygenated while sleeping. I guess there's still enough RSV crud in their lungs to prevent their little alveoli from doing their job well enough. And the doctor says no going home until they're completely weaned from O2, so I guess we just wait. They do great on normal room air while they're awake, but require an O2 "bleed-in" in their bi-pap hoses at night right now. So I guess it's just a matter of time for their lungs to completely get with the program. And so we wait.

I am so freaking tired of this place. Tired of nighttime nurses who think nothing of banging into the room at 2am like we all should be awake if they have to be. Or any nurse, day or night, who lets the IV alarm go off and takes 15 minutes to bother coming in to reset it even after I've already pressed the call button. And other people whose babies scream bloody murder (I know nobody can help this, but still, I'm done with it). And pulse oximeters that don't stay on right and therefore trick the monitor into thinking that the babies have no oxygen and make them start beeping loud as hell. Tired of ordering what is essentially "bar food" for every meal. And knowing that there are probably about a hundred really bad germs in this building that we could catch at anytime so long as we're still here. Blarg.

Lunchtime with Grandpa:

Thursday, February 12, 2009

Hooray--No NG tubes today

Lauren did better with her eating today, but she hasn't had enough wet diapers. They want to start her back on the IV. I've begged them off for now, but they're making me feel like I'm really pushing things to the limit. So we are push push pushing liquids on her. But as the saying goes, you can only bring a horse to water, you can't make her drink. We're doing what we can. Anything to avoid her having to be tethered to her bed like that. An IV at this point is just one more thing she has to be rid of in order to go home. So I want to avoid it. But her appetite is good overall, so right now an NG tube is not emminent. And her lungs sound awesome. Tomorrow I think they'll try to completely wean her off her oxygen in her bipap. She's a happy and chatty girl right now.

Kyle is having a little rough of a day. He's been fussy and more congested. But his appetite has been pretty good, so we're pleased with that. He still has his IV, but there's no concern over an NG tube while his appetite is so healthy.

Jenna had her Valetine's Day party at preschool today, and tomorrow her school has a big family field trip to the Phoenix Zoo. I'm bummed I have to miss it, but I'm glad that she still gets to do fun stuff while her family is split into pieces like this. Kim will drive up to Phoenix Friday night and take Jenna back to Tucson with her for the holiday weekend, and my parents will drive down to pick her up in a couple days. And with any luck, we'll all be discharged or nearly discharged by the time she returns.

I miss home. I bet the babies do, too.

Wednesday, February 11, 2009

A Better Day

Today was a slightly better day. Lauren's IV needed to be replaced, but she's been doing so well that they just took it out. We are on a mission to feed and hydrate her like nobody's business, or else she may find herself with a new IV soon. But she's had a decent appetite today and has happily eaten fruit, mac and cheese, chocolate ice cream, and french fries. She's finding herself off her bipap more and more, since the emphasis right now is on getting food into her mouth. It's so nice to see those sweet cheeks again, and kiss them all over as God intended!

Kyle finally got his IV today. He was getting dehydrated and wasn't interested in consuming a thing over the past couple days. It seems to be already working--he's a little perkier, and his appetite has returned a little bit. He has eaten two Yoplait yogurts today, which is a lot better than is diet over the last few days.

Both babies may require NG tubes. We're supposed to find out tonight, or maybe tomorrow first thing in the morning, whether or not we've dodged that bullet for another day. The good news is that as of this evening, Lauren has gained back a little of the 1+ pounds she's lost in the last week. We're hoping that will convince the doctors that she's getting back to her old self and will regain those pounds in no time. Kyle, on the other hand, is further behind and not doing as well as Lauren is, so we're sort of expecting that he'll need to have an NG tube sometime. I hate that he might need it, but I also don't want to starve the kid to death, you know?

So long 'til tomorrow.

A happy day.

Tuesday, February 10, 2009

Hospital photos

A mid-day update: Kyle's on oxygen now, as he's been desatting all day without it. He's eating and drinking a little better, which is good because this is the last day they're going to put up with his low inputs before they start an IV. If he keeps eating and drinking better, then we'll stave off the IV for another day. Lauren is the same, maybe a little better. No major news. Ice cream and a visit from Grandpa are the highlights of the day so far.


Monday, February 9, 2009

Same Old, Same Old

Today was more of the same.

Lauren is stable, but not getting better. She spends her days and nights wearing her bipap mask (I should post photos of her in that) while watching Dora or Cinderella or Ratatouille on the hospital TV feed. She's limited to her bed because she's tethered to an IV pole and her bipap machine, and she gets breathing treatments (CPT, Cough Assist, deep suction) every three hours day and night.

Kyle is doing better than Lauren. He showed his symptoms several days after Lauren did, but he's still nowhere near as bad as Lauren was at this point. He still spikes a fever a couple times per day, and he desats in his sleep, so he is to wear an O2 mask when he goes to sleep. See a few posts below to learn his opinion of the O2 mask. He has no IV or bipap, just a pulse oximeter, so he's more free than Lauren and we can pick him to see out the window and stuff.

Chris pressed the pulmonolgist for an expected time frame until discharge. Just to give us something to plan for, rather than literally planning no further than the next day. The pulmo says he expects Lauren to be here for two more weeks, unless she rapidly improves, which doesn't appear likely. I'm bummed, but am glad he set our expectations.

I went home today to hang out with Jenna, do some laundry, pop some Valentine's Day cards into the mail, and shop for some essentials at Target. Jenna got anything she asked for at Target. I can't bear to tell her that she can't have a $4 tiara when she's being such a good girl for my parents, and not giving anyone any grief over being separated from her whole family for days and days. She is also the proud owner of a candy stick with button-operated pinwheel on top. Like I said, I just can't say no.

I wish there was some decent eateries around here. Chris and I found ourselves choosing between Tony's Pizza and Philthy Phil's. When we googled Tony's Pizza in hopes of finding a menu, we learned that they were recently busted by a health inspector for dealing marijuana out of their store fridge. Awesome. And Philthy Phil's might have been an option, but it was next door to Amigo's Pawn Shop and I just wasn't willing to unlock the car door. So it's hospital cafeteria food again. Yippee.

Thanks for the thoughts and prayers. More to come tomorrow.

Sunday, February 8, 2009

Today's update--no better, but no worse

Today went okay. Kyle isn’t getting better, but he isn’t getting worse. He started the day off in high spirits. We borrowed toys from the play room and he had fun sitting in his Boppy and playing with them. His fever is pretty high, when he has one, though, and he has phases throughout the day when he feels icky. But he still doesn’t require an IV, which is great news, and he hasn’t required oxygen since early this morning. And we found out that he can order unlimited ice cream cups, so he’s been enjoying that!

Lauren, too, isn’t getting better but isn’t getting any worse, either. She is struggling to keep herself oxygenated still, and she spends most of the day sleeping with her bipap machine or getting her chest percussion/Cough Assist treatments. The great news is that she hasn’t had a fever in about 48 hours, so maybe just maybe the very worst is over. She still has lots of gunk in her lungs, though. I would venture to say that she probably has four more days to spend here. Maybe just two days, if we have all of this equipment delivered to our house in time.

Lauren hates getting her treatments from the respiratory therapists. Every three hours, they spend 45 minutes beating her lungs with the chest percussion, doing 5-7 rounds on the Cough Assist, and then deep suctioning the secretions. She now knows who the RT’s are and the minute she spies them in the room, she cries, “No, no, all done, all done!” It was funny the first time, and then just sad. She’s such a sweetie. Kyle has started some Cough Assist therapy, too, and he has tolerated it so far surprisingly well.

Right at this minute, Kyle is feeling cruddy in his bed. He’s watching his Ocean Wonders aquarium fishies that we attached to his bed rail, grasping the ribbon of his Pooh bear balloon tightly and trying to take a nap while he waits for his fever to go back down (he was just given some Tylenol). Lauren is sitting here next to me in her bed, wearing her new (and joyously smaller!) bipap mask while she plays with some blocks and books and watches Stuart Little. Her eyes are shining and bright and her color is good. Sort of the opposite of Kyle right now, but these roles have been reversed all day, so it was about time that the girl got some happy time.

Chris was supposed to start his new job tomorrow, so we hope that they’ll allow him to defer one week without firing him before he starts. Like he needs the added stress of starting a new job amid all this drama at home! What timing. Oh well.

More updates tomorrow.

Why don't my babies like oxygen?

All this time you know, I've sneaking oxygen to them pretty much everyday. Sometimes I call it "fresh air", other times I refer to it as "polluted air". But they've been none the wiser their whole lives.

But oxygen through a mask? They think it's the devil. It's almost not even worth it to make them breathe it. Except that their O2 sat monitors are super loud and obnoxious, so it's in my ears' best interest to make sure they get it.

Hositals (and sick babies) are miserable.

Friday, February 6, 2009

Day 2 in the hospital with Lauren

We brought her to the doc earlier in the week with an awful cough and fever, and she was diagnosed with pneumonia. A couple days later, her breathing was suspicously more intense, so we brought her to the ER and she was admitted with RSV. Her pneumonia diagnosis was based on an x-ray which they thought showed pneumonia at an early stage. But she tested positive for RSV, and that explains her symptoms and reactions better.

So we're here at PCH. Lauren is on a bi-pap machine for breathing, 24x7. We take her off to eat, and to perform extensive chest percussions(CPT) followed by several rounds on the Cough Assist and then deep suction her nose and throat to get the gunk out.

She just had another chest xray, and it looks like a little more fluid is present in her left lung. They suspect that our last round of chest percussions was so effective that it rattled around all the gunk in her lungs and it's begun to settle. So after she naps, we're doing another super-intensive round of chest percussions in hopes that we'll get all that crud ready to come out with the Cough Assist and that she'll really kick this thing fast. That extra fluid in her lung is causing her breathing rate to increase and for her belly to retract (protract? I have no idea anymore) and it's worrisome. So they're fiddling some more with the pressure settings on her bipap and we hope she gets enough rest to make up for all the wakeful time she spent today.

She's a very sick little girl. Please keep her in your prayers.

Based on his own fever and congestion, we assume now that Kyle has RSV, too, not pneumonia like we originally guessed. But so far his breathing is okay and he's managing a little better. Chris is having trouble getting him to eat and drink at home, but that's probably because he's so tired and feels so icky.

We expect that Kyle will worsen and will be admitted to the same hospital over the weekend. You know what they say about twins being double trouble and all.....

Monday, February 2, 2009

What to do with all this lemon juice?

Our lemon tree has been dripping with lemons for a couple months now. Sure, we go pick a fresh lemon when we serve salmon, or when we want to freshen up the garbage disposal (quarter a lemon and drop a one or two pieces into your disposal with the water turned on, that's guaranteed to get rid of any funk). But my husband went lemon picking today (again) and gave a dozen lemons to one neighbor, another dozen to another neighbor, and then picked me about 40 lemons to juice. I can still see at least 40 or 50 more lemons here from my window, and I know there are probably 100-300 more where I can't see them. This tree is crazy.

As I understand it from Alton Brown on the Food Network, citrus zest can be frozen. So I have zested 18 full lemons. I'm bored with zesting and refuse to do anymore of it for now. But they're in little Ziplock baggies in my freezer, waiting for a lemon scone recipe, or maybe to be thrown into a future vanilla cake mix to give it some zing.

But can I do with all this lemon juice? I have juiced all these lemons, as opposed to just tossing them in the trash can. I don't want anyone to tell me to make lemonade, because frankly, lemonade is just too sugary for my taste. We occasionally use pineapple juice or citrus juice in a steak marinade, so we could adapt and use lemon juice instead (I assume). But what else to do with 2 gallons of lemon juice? And that's just two gallons from today, portioned into ice cube trays, Ziplock bags, and Gladware. There's still a ton left on the tree and I really don't want to waste it!

What can I make with lemon juice?

Sunday, February 1, 2009

"Daddy!"

It is endlessly amusing to me that Lauren will call anything Daddy. And I don't mean she goes about it casually. No, no. She tenses her whole body, takes a deep breath, smiles huge, and squeals clear as day, "Daddeeeeeeee!" This is what she has done when she sees:
^strange men at the mall
^a ceiling fan
^her mother
^her grandparents
^her sister
^a magazine with Barack Obama on the cover
^the Lerner & Rowe TV commercial (local accident/injury lawyers)
^a block of cheese
^balloons
^Zoo Lights
^the priest, during mass (yeeps!)

Basically, she hysterically cries out, "Daddy!!!" at anything she likes. Including her actual father (thank goodness). And it will never not be funny to me that she does this!!