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. :)

The NICU Feed Lot

More big surprises! As we've mentioned before, our hearts always skip a beat when we get an evening call from the NICU and last night was no different. But last night's call brought some great news. Sandra, one of the kids great primary nurses, called to let us know that yet another room change was in store for the sprouts, but this time they were headed to the Feed Lot. That's right, the sacred promised land for every NICU preemie -- the coveted Nursery 3. Not only did the kids finally get called up to the big leagues, they scored Room 15, one of the plushest digs in the entire ward. (I knew the chocolate bribery would pay off.) I'm told that during their stay in Room 15, the kids will enjoy pampering by their regular primaries (they're still Level 2 acuity), and they will get to take long soaks in the Room 15 jacuzzi, lounge by the pool and enjoy a steam in the adjoining sauna. After that, it will be off to the Room 15 night club for dancing and schmoozing with the rest of the Nursery 3 elite. OK, that's somewhat exaggerated, but Room 15 does have a window with a nice view, and the gardens are just a few steps away. Not bad.

The doors to Shangri-La.

Our new address for the next several weeks... The next stop, home.

Interior shot of Room 15. OK, maybe not - but that's how it looks to us.

In other news, Milo has inexplicably made a huge weight gain. He is now 5lbs 5 ozs. No kidding! I didn't believe it either, and Annette even noted on his chart yesterday that she weighed Milo twice to confirm. Some of that is surely fluid, but it's still impressive! Maddy is 4 lbs 9 ozs and her lungs are getting stronger and stronger. We also learned about a new challenge for Milo yesterday: it appears that the little guy has a hernia (or two). This wasn't really on our radar, but Clem -- another great doc at Alta Bates -- walked us through a good explanation of what was going on and what it would mean for Milo. Basically, he'll need a little surgery to correct the hernia in about 6 months to a year. It's not causing him any pain, and it most likely won't have any other impact on him in the short term. Apparently this is very common for preemie boys.

A bigger Milo.

Madeline made her first attempt at bottle feeding yesterday. It was rough going for the girl. She was very hungry, and her voracious little appetite exceeded her ability to suck, swallow and breath. She had several bradys as a result and a couple of them were pretty dramatic. On the plus side, she did well for the rest of the day and had a good night's sleep last night, so she should be in better shape today.

Maddy all swaddled up.

Stay tuned.

Rub a Dub

Today's quick stats:

MILO

Weight - 4 lbs 14 ozs (2.21 kilos for you metric types)

Oxygen - nasal cannula, 4 litre volume (decreasing soon hopefully), 26 - 30 percent

Feeds - 43 mls breast milk w/Prolacta every 3 hrs along w/ an electrolyte supplement

MADDY

Weight - 4 lbs 6 ozs. (1.985 kilos)

Oxygen - nasal cannula, 2 litre volume, 22-26% (every so often 21%!)

Feeds - 40 mls breast milk w/ Prolacta every 3 hrs.

Elaine has bathed the babies a couple times now, but yesterday was the first day that Dad was an active participant -- instead of just acting as the staff photographer. That's not for lack of wanting -- the problem is that Dad has hands like catcher's mitts, fingers like sausages, and the dexterity of a rhino -- a blind, deaf rhino. Yes, all attached to that skinny body. That means when you're looking to perform a delicate operation quickly (such as bathing a premature baby with a lot of gizmos attached), you probably want someone else. But, now that the babies are getting a little more durable, Dad can be trusted (mostly and with supervision). So how'd Dad do? Passable.

Dad bathes Milo with help from Aneko.

Washing Milo's back and bottom.

Dad's general impression is that bathing a baby is akin to wrestling a small, very fragile, greased pig. They're stronger than you think, they generally don't like being put in the water, they squirm like heck, and they taste like bacon (just kidding -- chicken actually). Add to all this the fact that the babies have their nasal cannula and feeding tubes, and you've got delicate mayhem. To keep the babies warm, the nurses prepare a bath with water at 100 degrees, and there is also a nice warming lamp present. Once all the preparations were complete, we delicately placed Milo in his bath where he immediately peed. We've decided to spare you all the photos of that fun, but we will save them so we can embarrass him when he's a teenager.

Maddy post-bath and pulling Daddy's finger.

In other news... You may have noticed above that Milo is getting an electrolyte supplement in his breast milk -- basically the neonatal equivalent of Gatorade. Unfortunately, the little guy is having a tough time shedding all the fluid he's retaining while keeping up his essential minerals. The eminent Dr. Tannenbaum, who treats our little sprouts these days (and knows funny when she sees it!) has been working on striking the right balance with Milo. The problem goes something like this: retaining extra fluid can cause Milo to have to work harder to breath and is generally just not so great for him. To fix it, the doc gives him diuretics, which help him to excrete (i.e., tinkle out) the extra fluids. But, the more Milo pees, the more his essential electrolytes go along for the ride. For now, the strategy is to get his electrolytes back in balance and as he continues to recover from his PDA surgery (remember that?) he should have an easier time eliminating the fluids.

By the way, the twins turn ten weeks old -- 35 weeks corrected age -- on Sunday.

Milo (right) snoozes with little sister.

The (Long) March to September

Since the move to an open crib a couple days back, the twins have done pretty well. The doctors and nurses warned us that one or both of them might need to go back into the isolette for a break or that Milo might need to go back on CPAP. So far so good. Milo has managed to tough it out on the nasal cannula, though his supplemental oxygen needs are on the high side for a baby on a cannula. For comparison, Maddy is getting 2 liters of volume and only about 22 to 25% oxygen (remember that room air is 21%). Milo is receiving 4 liters of volume and about 32 to 38% oxygen. To be fair, the boy had his PDA surgery less than 3 weeks ago. All things considered, he's doing well. He is starting to shed some of the fluid he's been retaining and that should help reduce his oxygen needs.

In terms of weight, Maddy was 4 lbs. 2 ozs. today. Milo was 4 lbs 12 ozs. - closing in on the big 5! Milo is now up to 40 mls during feedings and Maddy is at 35 mls. They continue to tolerate the feedings very well, and they're pooping up a storm!

As part of a new feature, we figured we'd start measuring the kids growth every month against their teddy bear.

Maddy - August 17, 2008.

Big Milo - August 17, 2008

Some more pictures from today and the last couple days...

Elaine holding Maddy.

Dad holding Maddy during his daily lunch break at the hospital.

Milo sacked out and trying to sleep his way to stronger lungs.