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.


  1. I love how Alex can make light of a situation like this!! The sea turtle joke made me laugh!! Praying for your sweet girls and hope we are able to meet them next weekend!

  2. Always thinking of you guys!! I can;t wait to read more posts!

  3. Thinking and praying for you guys. Thanks for the update.

  4. "To know that others have walked a similar road may not make the difficulties of the journey easier, but should give us hope."

    Your family is in our prayers.

    The Gilbride Family

  5. Oh Alex I hate to laugh, but you have a wonderful way of telling such a true tale. All I can offer is hope that it does get better. They will become more stable! Hang in there.


  6. This is the first time I have read your blog and my heart goes out to you guys! My quads were born at 23w5d and each weighed about 1.5 pounds, so I understand the ups and downs of the NICU rollercoaster! I will add you to my prayer list! It will get easier and they will become more stable as time goes on! Three of my kiddos had their PDA's ligated when they were just 2-3 weeks old after the meds failed. It was hard to see them go through such a major surgery when they were already so unstable, but it made all the difference for them and they started to do much better after the surgery was over! Keep the Faith, and I will keep praying for you!

    Rachel, mom of BBGB quadruplets

  7. Saying prayers for your family. Thank you for the update.

  8. Ha. That is exactly what it is like. But you forgot the incessant beeping of monitors. I felt like I was in Vegas.

    We're continuing to pray for your girls and for you and Crissie.

  9. Oh, wow Crissie, as I'm reading this blog, there are tears rolling down my face. I just want you to know I'm praying for you and your family. Congratulations on your two beautiful little girls.

  10. I just found your blog, and I'll be praying for your 2 miracle girlies! Hope to hear an update soon :)