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.

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:

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.

Sleep Studies--aka "Mama Gets No Sleep" Studies

What a week of sleep studies it's been. Each baby has now gone through one study. Kyle was first, and it was like a dream come true for him, I'm sure. From the moment I first heard his hysteric shrieking as the tech attached electrodes and sensors and belt monitors onto him, I knew this was going to be nothing but fun. I was right! Kyle and I spent some "quality time" together for a few hours, taking turns crying, until about midnight that night, when finally he "fell asleep for the night" and only woke up crying three times between midnight and 6am. Score! And the tubes in his nose, well he only yanked those out about a half dozen times.

Lauren, on the other hand, handled it like a rock star. And no, I don't mean that we made the tech provide her with a dedicated masseur, Fiji bottled water and bowls of green-only M&M's. I mean that Lauren sat happily while the tech hooked her up, she fell asleep within minutes after I turned the lights out, and barely woke up at all. She never messed with her wires or her nasal tubes. She should be the poster child for pediatric sleep studies.

And me? Well, I was up with Kyle only about 2 dozen times during his study. And with Lauren, I was so afraid she'd hear me roll over or crack my feet (I have to rotate my feet and crack all knuckles and joints that can be popped in my feet before going to sleep) and then wake up and let her wrath loose on me that I couldn't sleep all night. I wished I had some old Mad Men TV episodes on my iPod so that at least I could have done something other than stare at the walls all night.

So hooray. It's done. They may each need one more sleep study, to titrate their bi-pap machines for sleeping at night. But now I know what I can bring to distract them during the setup process (Baby Einstein DVD) and also to schedule our checkin for later in the evening so that they are truly sleepy by the time we need them to sleep.

And their health is still good. I had a scratchy, phlegmy throat last week, but they didn't show any signs of a cold or anything else, so keeping them inside and away from crowds and stores must be working.

Happy Last Weekend Before Christmas Shopping, everyone!