Wednesday, May 19, 2010

Trying not to jinx it... (D-Day + 31)

So, our early NICU experience was so up and down that we've developed a phobia of admitting when they're doing well for fear of jinxing it. It's funny, if you so much as mention the "Q" word (quiet) in the presence of nurses, you're sure to see them diving for cover expecting the ceiling to cave in. It's a surprisingly superstitious place. When the girls are doing well, I feel like we're all in the dugout in the 8th inning with a pitcher who's got a perfect game going. Nobody say anything...

Well, it's been a few days and at the risk of tempting the fates, we have to report that the last week has been pretty good in general. Maybe we're getting desensitized to the little blips, but it sure feels like they're progressing well of late.

Amelia (little Miss Consistent) is up to 6.5 mL of continuous feeding which is pretty much the maximum for her weight (which is roughly 2 pounds 4 ounces). She's tolerating her feeds really well and is growing pretty steadily. She's back down to 2 liters on the Vapotherm and she bounces around between 30 to 60% oxygen levels to maintain her saturations. No IVs or PICC lines. Overall, she's in good shape. She has the usual ups and downs--the occasional apnea or bradycardia, but she usually recovers well unassisted.

Elena (our Drama Queen) is up to 6.0 mL of continuous feeding which is good too and she's also weighing in around 2 pounds 4 ounces. She's tolerating her foods really well and seems to be stooling and urinating regularly. I only mention it because early on it was an issue. Her breathing is improving although she had a setback since our last update. Her carbon dioxide levels in her gas samples were coming back high. She was reintubated, then got upgraded to CPAP. She's now back down to the lowest rate on the CPAP and we're hoping she'll get moved back to Vapotherm soon. She looks like an underwater samurai--which is to say, uncomfortable (as any samurai who's spent time underwater will attest). No IVs or PICC lines. She just finished up some antibiotics for a little infection in the PICC line, but all seems to be better now.

On another note, we have received more thoughts, prayers, words of support, and genuine love from friends and family than we can ever possibly acknowledge. So many of our close friends, blog-followers, long-lost pals, distant families, buddies on facebook, current and former co-workers, and many complete strangers have reached out to us to show how much they care for us in this time of emotional awkwardness. To know how many people are out there cheering us on is truly touching. We still have our "dark and twisty" moments, but they get fewer and fewer as the days tick away. It's hard to think too much about "what might have been" when "what actually is" is altogether precious and awe-inspiring.

We can't possibly be more grateful for this tsunami of support we've received. It's meant more to us than many of you will ever know. Though we haven't been able to respond to many of you lately, know that your messages were received, they were appreciated, and they helped. Blasting this to the world via blog seems a wholly insubstantial way to communicate our appreciation, but we're having to make trade-offs for the sake of efficiency. We are sincerely thankful that each of you are a part of our lives.


Tuesday, May 4, 2010

NICU Update (D-Day + 17)

By the time I put the period on this sentence, what I think I know about the condition about our daughters will be old news.

Seriously, it changes that fast.

First their PDAs are open. Then they're closed. Then one's open again. Got that fixed. The other one's open. Now it's closed. Check that...

Feedings? Yep, they're both feeding. No they're not. One of them is. Not anymore. One's not pooping. Now she's pooping. Starting feeds. Stopping feeds. Why? PDAs open. Crap!

How's their breathing? Great! Extubated after a couple of days. Now on Vapotherm. One's three liters. One's two liters. One's on high-flow canulas. One's on low-flow canulas. Room air trials (maybe)? Blood gases acidic. Reintubated. Oxygen 74%. Oxygen 100%. Back to Vapotherm. Doing good. Sleeping comfortably. Her PDAs open? Reintubated--do not pass Go, do not collect $200.

If this sounds familiar, then you've either worked in, or had multiples in the NICU.

As I re-read the above, I continue to be marvelled that it's not an exaggeration at all. This has become our life. People will ask me how they're doing and I'll give them the latest. Then, they'll ask me again three hours later at which point I'll tell them that whatever we were worried about earlier is now fine, but now there's three more things we're concerned about. People must think we have some sort of hyperactive "Munchausen syndrome by proxy."

I'm just going to start telling people that they're slowly turning into sea turtles.

So, here's the real latest scoop.

Amelia is doing pretty well. She was down to low-flow canulas at room air, but then her PDA re-opened up, so they moved her back to 2-liters Vapotherm and they gave her the 3 rounds of drugs to close it. They think it worked, so they resumed feeds and she seems to be doing fine. Her blood gases are checking out okay. She has some minor swelling, but she's peeing well enough, so they aren't overly concerned.

Elena is more of a challenge. At 10 days, she wasn't pooping. A couple of enemas and some Muco-mist later (I can't wait for her friends to read this one day), we got some poop. So we started some feeds. Then, her blood started getting acidic and she stopped peeing. So they stopped feeds and reintubated her. Now her gases look better and she's peeing. She's intubated at room air for the moment. She's struggling with ventilation even though her oxygenation is doing well. The doctors think she's worn herself out for the moment. So, we wait a little while and regroup.

Honestly, don't you just want some pictures already???

Amelia, the laid-back one.

Crissie and I spend a lot of time seeing each other like this. (Amelia's isolette)

Elena says "hello."

Taking a noonie.

That's all for now. You can be sure that anything you now know about how they're doing has since changed. It's the only thing that seems to be consistent for now.