Friday, August 29, 2008

Look Ma, No Cannula!

As the twins creep closer and closer to their projected discharge date (less than a month to go!), the babies are in this strange zone where they are just on the verge of being able to do so many things, but aren't quite there just yet. It's exciting, but can also be frustrating for Mom and Dad, who wish they could just hit the fast forward button.

Case in point: on Wednesday, Madeline did her first stint with no cannula, no oxygen, no nothing. She'd been on her cannula on room air (21% oxygen) for a few days so her doctor said "What the heck, let's try it," and took the cannula out. (Even though Maddy wasn't getting supplemental oxygen via her cannula, the device still provided a little bit of air pressure to help keep her alveoli open.) Maddy did really well for about 6 hours, being handled, getting her diaper changed, and even breastfeeding without much trouble in the desat department. Then, sadly, our little tyke was pooped and had a pretty big brady/desat episode. She went back on her cannula for a rest, hopefully to try again without it soon. She's been on room air oxygen levels more or less since, so she's still doing pretty well. It was really great to have one less tube attached to her, and to be able to see more of her cute little face while it lasted. A taste of things to come!

Milo is still plugging along himself, though he continues to struggle with fluid retention because of his less than stellar lungs. He's been creeping down toward room air on his oxygen levels when his fluid retention is under control, which is promising. He continues to be a champion breastfeeder when he's in the mood, taking down half of one of his feedings all on his own earlier this week. Both babies are still struggling with the swallow/breathe/suck combo, though, and usually have an episode if they get too much milk at once by mouth, bottle or breast. Hopefully this will clear up by 37 weeks or so, corrected age.

Both babies also successfully finished their courses of vaccines last week with no complications, which was great. So no polio, whooping cough, diphtheria, or hepatitis in their immediate futures!

Looking at the big picture, the babies turned 36 weeks corrected age this week, and because they are still on oxygen and/or needing some breathing support, it is likely that they will be formally diagnosed with mild to moderate BPD. (See our earlier post, Lungs, Lungs, Lungs for more info on this condition.) As far as we know now, this means that the babies will need follow up with a pulmonary clinic at Children's Hospital here in Oakland and will need special precautions for their first 6 months to one year of age. Basically that means avoiding crowds and places where germs thrive (grocery stores, shopping malls, movie theaters, parties, day care, airplanes) because the babies will be much more susceptible to respiratory illness and if they do catch something, it could be serious. We are told that being outside is fine, though, so we won't have to become complete hermits, which is nice. :)


Helen said...

It's so exciting thinking about the twins being home in just a matter of weeks! They are making so much progress and we are so proud of the strength you have all shown. Such a bunch of super troopers! Grocery stores, malls and airplanes? Overrated. As long as Stiles babies are allowed to spend time in the great outdoors we know they will thrive. We are loving the pics!
Helen & the Kisslers xxxxxx

emily said...

from the sounds of things, M&M will be white water kayaking within a few weeks! man, i just read the last two weeks worth of blog entries at once, and i am just BLOWN AWAY!!! these are two amazing little bebes! i cannot imagine what it would be like to go through what you are experiencing right now, yet with a hilarious sense of humor, pride, maternal and paternal strength, and intense love for these adorable beings, you make it so real for all of us. give me an M! give me another M! M&M are the best! go stiles!