Our Kids

Howdy!

The girls should be coming home this week! Yep… they’re doing so well on their feedings, both nursing and bottle, that the nurses and doctor have been talking to us about discharge.

We just got done with their noon feeding, which all together means that they have not used their feeding tube for almost 36 hours! It’s a blast being able to help out with the feedings… we switch them off for each feeding, so I’ve been able to feed both Piper and Lela now. Pretty darn cool.

So this week we’ll be able to bring our girls home, after probably six weeks of being away. Of course it can’t be as easy as it sounds… they still have a couple vaccinations, we get to learn CPR, and the girls actually have to sit in the car seats with an oxygen monitor for two hours (our driving time to bozeman).

We’re assuming that they’ll pass all of this… but even when we get home, it’s RSV season which means we won’t be able to take them out until probably May, and we’re not even sure about visitors, since our girls are at a higher risk than most. They’ll be getting a shot each month for that, and we just want to be extra careful with them… the last thing we want to do is come back to Billings on anything other than a social visit

Anyhow, we’re pretty excited, but trying not to get too excited. More soon!

jason

Got a voice mail at work from Mystique at 4:15am this morning with an update… as I might have mentioned, our doctor recommended trying the girls out on a bottle when Mystique’s not there to nurse. So, after doing a successful feeding at 9pm last night, Mystique decided to visit the girls the first time our night nurse would try the bottle. That, of course, is 3am.

On her message, Mystique said that the girls did great. Piper really took to it and guzzled down her feeding in record time. Mystique said that for a while afterwards, she had an odd look on her face, wondering what the heck just happened. She stayed awake for a bit, sucked on a pacifier, and hopefully worked things out in her head.

Lela took to it pretty well, too, but Mystique said she was a bit sloppy and not as sure about it. Afterwards, though, she fell right asleep, so it seems like it agreed with her.

Now it will be interesting to see their next normal feeding and whether or not the bottle confused them. But so far things seem to be ok, so once I get there today, we’re going to power through the weekend, go to their nighttime feedings and try and get these girls home soon. Play time’s over!

Ok, so I lied… no new pictures tonight. I think they’re still on the camera and that’s in Billings. Sorry.

In better news… Lela had another EKG done and it showed that her PDA valve was closed! Good news. Of course, these are the rollercoaster girls, so the “but…” is: she has two other openings between her heart chambers that are still open. Still not a big deal, just something we’re going to have checked again in three months. The cardiologist said that it’s nothing that would stop Lela from going home, so all is well.

The girls are still resting from their eye exams, so not much done on feedings today. Mystique’s prepping them for when I get there tomorrow… she’s telling them that once daddy’s here, get ready to feed ‘cuz you’re coming home.

My apologies for not updating sooner… no excuses. I have some new pictures to put up, but that will have to wait until tonight when I copy them off the laptop.

Not to sound like a broken record, but… the girls are doing great, continuing this wild roller coaster ride. Everything’s fine with the girls, they’ve just been teasing us with bursts of awesome nursing skills, then a day or two of relaxed feedings.

For example… both Piper and Lela are around 47-50ml of food each feeding (every three hours). If we’re trying nursing, then we’ll weigh the girls before and after the nursing to see how much food they got. Over the weekend when I was there, we were getting a bit bummed out because Lela seemed like she had slowed down… she would get maybe 15-25ml during the times we tried nursing with her. It seemed like she’d be awake, alert, and ready to go, but 10-15 minutes into it, decide to take a nap.

Piper, though, was crusing right along… she was averaging about 1ml/minute, so if we spent 35-40 minutes with her, she’d get 40ml or so (nothing is exact, of course). Every now and then she’d kick it into high gear and get her full 45-50ml in about 25 minutes.

So, we were happy for Piper, but a little concerned for Lela. The doctors and nurses, though, weren’t too concerned, so it’s not as if something was wrong, they just weren’t hurrying up so we could get home

To make a short story long… last night I talked to Mystique and all of a sudden, everything had swapped. Yesterday Lela had gotten two full feedings (including a monster 55ml session in 25 minutes), and Piper has decided to watch her weight and only take 20ml. I’m pretty sure they swapped stories during the night… Lela telling Piper to quit working so hard because you’ll still get food in your tummy through that cool tube in your nose. And I’m sure Piper told Lela how cool it was to lie on the scale, hear some beeping, and then a bunch of big people-blobs say “yay!” and give you kisses. Of course, Lela knew that even getting just 15ml caused yays and kisses, but I think she didn’t want to burst Piper’s balloon.

So that’s the roller coaster. Crazy kids.

In other news… our doctor recommended starting out the girls on bottle feeding if they’re very alert and Mystique’s not around (ie, 3am). It’ll be interesting to hear how that goes… they’re going to watch it carefully, and at some point Mystique might move in to the hospital so she can do full feedings every three hours with the girls. Gosh, that sounds like fun

So we’ve got the car seats in Billings, ready to bring the girls home at any time. Maybe the end of next week, but remember that’s an optimistic dad saying that.

So here I am, Jason has dragged me to dinner and to the coffee shop. He says it is for his own benefit but I know that he just does it to give me a break. The girls had a couple visitors from Bozman, thanks Michele and Renee from coming and taking me to lunch. It was nice to see some friendly faces and chat about things not related to the Billings NICU.

The girls and I are doing great, just hoping to get home before spring:) They are growing and getting stronger which is what we need so that they can get all their feedings by mouth and get rid of those feeding tubes. They are getting more fun every day and their personalities are coming out. Piper grunts and groans herself awake clinching her fists and turning beet red. Lela gracefully wakes up and does some sort of baby yoga until she opens her eyes. They are both so cute and unique, Jason and I can’t wait to see them grow up.

Not much going on here. Thanks again to my parents for watching the dogs, Jason’s parents for watching the dogs, Renee for watching the dogs (and coming to visit), Amy and Andrea for coming to visit and loaning the girls all the great clothes, and everyone else I have forgotten that has been a huge help to us during this time.

I hear the next movie will be a comedy…………

Latest from Mystique:

Today is the kids’ one-month birthday! Hard to believe that it’s been a month… Mystique might feel differently, since she’s been in Billings non-stop for a month, but I’m not sure all this will really sink in until the girls get home. And maybe even then it won’t… perhaps nothing ever really “sinks in”, you just continue to do what’s right, jump each hurdle that’s thrown in front of you, and hopefully every now and then you can stop and reflect on just how lucky you are in life.

Lela is slowly approaching the 5lb mark… she’s just taking her time, enjoying the scenery, etc… last night Lela’s weight was 4lb 15oz… I suspect that at tonight’s weighing she’ll top the 5lb mark. A nice little birthday present.

Piper’s rolling along at 5lb 4oz… I’m not sure if she’s found the box of “weight-gain” or is pouring herself power protein shakes, but she’s doing a great job of growing.

Both girls passed their hearing tests yesterday, as well. I’m not quite sure how they test it, but as long as they passed, we’re happy.

That’s it for now… more this weekend when I drag Mystique to the coffee shop for her weekly internet hit.

Some more news from Mystique…

Piper’s up to 5lb 1oz or so… Lela’s still hovering around 4lb 13oz, but nothing to be worried about. Their both doing well with their feedings, so the “feed and grow” time is still on.

Yesterday morning Mystique walked into the NICU, started moving towards our room and heard some crying. Piper was actually up and crying because she was hungry! Another good step towards getting them home… the girls should wake up and cry when their hungry, and there she was! Mystique went over to Piper and happily told her thank you for crying. I’m pretty sure we won’t be doing that too often

Piper did that again yesterday, so two cries in one day is a good thing. Mystique said Lela either slept through it or gave her a look of “shut up I’m sleeping.”

Some other good news… the girls used to be wrapped up in two blankets with hats on, but now their just swaddled in a thin blanket without hats in the crib. They’re doing really well with keeping their temperatures… which they’ll need in the Bozeman winters!

That’s it for now!

jason

Well, I’m back in Bozeman after a great weekend with Mystique and the kids. They’re both doing so well it’s very encouraging, but still tough knowing that they can’t come home yet. Some of the highlights:

• We gave both of the girls a bath today at their noon “cares”. It’s always fun to do that… I don’t think they hate it, but it certainly wasn’t making the smile and giggle with glee.
• On Saturday both Mystique and I seemed to have the “magical touch”… that means whenever we changed the girls, they’d have “just” a pee-filled diaper until the moment we tried to wipe them clean. At that point they’d share with us the fact that they were holding on to a nice and stinky poo, just for us.
• The girls are wearing their own outfits now, most of which are borrowed from our friends (thank you!). Lela was the first to sport an actual pair of pants. While stylish, they were kind of a pain with the diaper changes, but in the end it was worth it to see that sort of change in the girls (getting close to real clothes).

It’s pretty amazing seeing the changes in the girls already… Piper’s face has definitely filled-up, and Lela’s features are becoming more defined each time I see her. They both perk up at the sound of Mystique’s voice and it was just awesome being able to sit there and hold each one of them.

I’ll be back soon, and they’ll be home soon.

jason