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. :)

Tuesday, August 26, 2008

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.

Saturday, August 23, 2008

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.

Monday, August 18, 2008

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.




Saturday, August 16, 2008

Together Again

Some exciting progress yesterday! First, yesterday was the twin's two-month birthday. Their nurses marked the occasion by putting together a very nice card, baby footprints and photos for us -- a real treat! (Thanks ladies!) Next, Maddy and Milo were reunited for the first time since their birth. Both have been doing well regulating their own body temperatures, so it was time to try an open crib instead of their isolettes. This meant they could be co-bedded. It had been a while, but I think there was immediate recognition. Maddy obviously had a gripe of some kind with her brother, and she wasted no time expressing her feelings with a curt finger gesture. (See below.)

That's our girl!

Actually, the babies appeared to enjoy each other's company at least at first. Maddy felt Milo's face and planted her lips on his before he managed to wiggle out of her grasp, leaving her mouth on his chin like a brotherly pacifier. Their oxygen saturation was high, and they appeared (mostly) comfortable in their new open crib. We were given fair warning that the arrangement may not last, and this morning it looked like Milo might need a break back in his isolette. But that's the name of the NICU game -- challenge the babies a little and then step back if necessary. It's a process that has served M&M quite well.

As the babies continue to improve, it also means having to leave some things behind. For the past two months, M&M have spent virtually all of their time in good ole' room 11. But it's time to say good-bye as the kids make the journey down the hall to Room 2.

Room 11 - Our home away from home up till now. Elaine holds Milo while Sandra and Cheryl offer Madeline some TLC.

Moving to an open crib means another step down in their acuity (they are now both at level 2), and that means a move to a different room with a roommate. It also means that they won't get one nurse to fawn over them 24/7 like they used to. The babies are getting stronger, and that means they need less supervision. That's a good thing, but it also means spending less time with many of the great primary nurses who helped to get them so strong. It's scary to leave that behind.

In other news: The babies continue to put on weight at an impressiveclip -- Milo is now 4 lbs. 10.9 ozs. (!!) and Maddy is 4 lbs .7 ozs. M&M had another eye exam in the last couple days. Madeline's eyes look good though still immature (obviously). Milo did have some mild retinopathy, though chances are it should resolve on its own -- if not, it can be treated with laser surgery.

Now for some more pictures...

Squirmy Maddy.

Maddy being pushy while tolerant Milo tries to rest.

Together again!

Wednesday, August 13, 2008

It's been a quiet couple of days at the NICU. Maddy has been plugging away on her cannula and Milo is still alternating between cannula and CPAP every four hours. Both babies are being weaned from their isolettes as they are better able to regulate their own body temperatures. Maddy is almost there, and may be in an open crib by next week. Milo isn't too far behind, but isn't quite there yet. When Milo is also ready to make the switch, they can be co-bedded. The babies haven't been together since they were in the womb, and it will be interesting to see how they react to being back side by side. It will also be nice to take a photograph of the two of them at once!

We're continuing on with recreational breastfeeding, and Milo is proving to be more of a natural at it than Madeline. They're both still in the training phase, though. Case in point - occasionally they get a big gulp of milk and they're so surprised by it that they forget to breathe for a little bit. Don't worry, though - they start right back up again, and they won't do this much longer. Now that they're almost 34 weeks, a lot of the coordination of breathing, swallowing, and sucking will come together, and their jaw muscles will start to get stronger. Thankfully, the NICU nurses are very skilled at getting babies to breastfeed, and the NICU also has a wonderful lactation consultant who helps with nursing activities, so we're in good hands.

Now that the babies are 2 months old, they are also due for their vaccinations. For some reason, state law requires babies to be immunized at 2 months of age, regardless of whether they were born prematurely. So the little ones will be immunized against all kinds of scary things on Friday. Hopefully they'll take the shots well. Stay tuned.

We got to give Maddy a bath for the first time on Tuesday night, which was a lot of fun. Unfortunately the few pictures we snapped of the bath didn't come out so well, but Maddy was really alert afterwards and we got some great pics of her with Dad.




Sunday, August 10, 2008

The 8-Week Retrospective

Over the past few days the babies have really made some amazing strides. Before too long, they'll be in the group affectionately referred to around the NICU as "feeders and growers." As we talked about earlier, there are several levels of care for a baby in the NICU -- basically Levels 1-4. The babies started out at Level 4 and are now closing in on Level 2. The more tubing and medical devices they shed, the closer they get. As you'll see below, Madeline is pretty much down to just a nasal cannula and Milo is still on CPAP, but is sprinting on a cannula. Of course, they still have the sensors attached to them, but those will be around until discharge. Over the course of the last 8 weeks, they've done the following:

MILO...
1. Started out at 2 pounds and now weighs 4 lbs. 6 ozs. -- more than double his birth weight.
2. Needed one of those obnoxious a bilirubin lights for the first week or two of life.
3. Needed an oscillating ventilator and now uses a cannula and CPAP
4. Went from IV only feedings to breast milk/Prolacta only feedings, with some real breast feeding.
5. Can open eyes, lift himself up and rotate his head from one side to the other (really!), can cry, and poop.
6. Now has nipples.
7. Can talk and read a little (just kidding).
8. No longer has an IV tube for feedings, picc line, or the bandages that were all present for the first several weeks of his life.
9. Has two little clips at the top of his heart to close off his PDA.

MADELINE...
1. Started out at 1 lb. 14 ozs and now weighs 3 lbs. 11 ozs. -- about double!
2. Needed one of those obnoxious a bilirubin lights for the first week or two of life.
3. Needed an oscillating ventilator and now uses a cannula pretty much exclusively.
4. Went from IV only feedings to breast milk/Prolacta only feedings, with some real breast feeding.
5. Can open eyes and make smiling gestures (though she's just faking), can cry, and poop, and squirm out of just about any swaddle you put her in.
6. Was born with almost gelatinous skin and now has a very nice little baby pelt covering her (and she has nipples too finally).
7. Recovered fairly quickly from a bad staph infection on her arms that appeared during her second week of life -- no trace scarring either (see #6).
8. Kinda has a little pig schnoz from the CPAP, but it will go away over the next few weeks (and anyone who makes fun will get a knuckle sandwich).
9. No longer has an IV tube for feedings, picc line, or the bandages that were all present for the first several weeks of her life.
10. Has a little clip at the top of her heart to close off her PDA.

In other exciting news, as many of you have already seen, the kids can wear clothing and use blankets that we bring in for them. Today Maddy placed her stamp of approval on the pretty little outfit given to her by Melita and Derek by peeing all over it. Below, you see the little sprouts modeling their new blankets, hats, and clothes. (Thanks Felicia & Tom, Aunt Vera, Jim, Michelle & Tony, John & Beth, Anthea, Daria & Jason, John & Lisa, and Jan & Bruce.) Madeline has also impressed us by managing to pull out her nasal feeding tube, while her feeding was underway. That meant that about 25 mls of breast milk saturated her isolette and that Cheryl (one of her great primary nurses) got to completely change her bedding.

Milo has just been plugging along and gettin' big. Sometimes I think the boy must be hitting the gym. At less than 5 pounds, he still manages to rip out hand fulls of my chest hair while I'm kangaroo holding him. It's something to grab onto after all. Time was he could only manage to tug on it, so I guess that represents progress too.

Madeline resting. Notice she has a birth mark on her forehead. This little mark will fade over time and be entirely gone when she reaches her early childhood. It isn't related to prematurity, it's just a part of her.

One of the great benefits of moving to the cannula is that we can actually see all of Milo's little face again. If you look back at some of the earlier pictures with my hand in the shot, you'll see how much he's grown.

Dad with Milo. Notice the protective undershirt. He frequently buries his face in my chest searching for a nipple.

Milo sporting his new duds.

Maddy also sporting her nice new clothes. Notice her feeding tube is now routed through her nose. This allows her to try to breast feed more easily. Once Milo is completely off CPAP his tube will also be routed through his nose.

Now it's time for more Cinema Stiles
video

Maddy's poor little up-turned nose. It will go away, so no wise cracks! The sound is the real key to this cinematic masterpiece.

video

Milo workin' his pacifier a little.

Until next time...

Thursday, August 7, 2008

Relief for Milo's Schnoz

The thing about having a preemie (or having two preemies) is that you find yourself worrying a lot about something, and then suddenly it seems like somebody flips a switch and it's no longer an issue. Changes are often quick and somewhat unexpected in the NICU -- and thankfully usually for the better. Take today for example -- we figured it would be a while before Milo would make it to a nasal cannula, and all of a sudden he's wearing one. A very nice surprise! Will it last? Mostly. Chances are he'll need occassional rests (meaning he'll need a few hours on CPAP here and there), but he seems to be off to a good start. It's very nice to be able to see his face again. This also means his little schnoz can start the process of going back to its normal shape. Milo was also able give recreational breast feeding (tee-hee) a first try today, and he took to it very quickly. He managed to consume several mls of milk all on his own. Way to go boy!

Maddy had a more sedate day. We spent time with her but let her stay in the isolette and get a good rest. She's been doing a lot the last few days, and today she needed some rest. She's now on a nasal cannula full time (with an occasional CPAP break mixed in), which takes a lot of extra work.

I'll try not to forget the camera tomorrow, so standby for pictures.

Wednesday, August 6, 2008

Gettin' Chubby!

So the last few days have brought some very nice progress for M&M. Today they both packed on even more weight. Milo is a robust 4 lbs. 1.8 ozs. and Maddy is tipping the scales at 3 lbs. 8.6 ozs. Apparently Milo's weight is legit now and not just a product of fluid retention. So where's all that weight coming from? Milo is eating breast milk again, but he's also receiving a fluid rich vitamin supplement and lipids from an IV. The lipids are basically just fat -- so think of it as reverse liposuction. In the next couple days he'll be back up to full breast milk feeds and the IV stuff will be discontinued. That will mean fewer things attached to him, which makes us all happy.

Milo waiving hi and enjoying a pacifier.

Maddy took a big step forward today by moving permanently (hopefully) over to the nasal cannula. She may be given occasional breaks on CPAP if she gets too tired, but so far so good! (The nasal cannula is the small tube with the prongs that go up her nose. CPAP is the contraption that looks like a mask.)

Maddy with Mom. Here she's wearing a nasal cannula -- much less obtrusive than the CPAP mask Milo is wearing in the picture above. He'll get there too.

Sunday, August 3, 2008

Steady Progress

Today brought more good news and positive progress for the twins. They're both putting on weight: Maddy weighed in at 3 lbs. 4 ounces and Milo is 3 lbs. 14 ounces today. Some of Milo's impressive weight is actually just the extra fluid he's retaining. He's probably really a few ounces less than that. Madeline's feedings are getting steadily larger -- I believe she's up to 28 ml. every 3 hours, and Milo should be back to full feedings in the next few days. The babies' lungs are also getting stronger. Madeline is making amazing strides on the nasal cannula. She's been able to go as long as 4 hours without needing the assistance of CPAP, which is pretty impressive considering how bad her lungs looked a couple weeks ago. Milo is also requiring less and less respiratory assistance. After having his PDA surgery less than a week ago, he's plugging right along on SiPAP. He's requiring relatively little supplemental oxygen, and the doctors have been able to lower the rate of SiPAP assistance quite a bit over the last few days. Hopefully next week he'll be able to try out a cannula also. If so, he'll be able to give recreational breast feeding (tee-hee) a shot too.

All in all, we feel pretty lucky about how things have gone over this past week. There are bound to be more bumps in the road, but for now we feel very encouraged!

Saturday, August 2, 2008

Peepers

The babies had a big day yesterday with an eye exam from a pediatric opthamologist. Both little guys had their pupils dilated so the doctor could examine the interior of their eyes for any problems with retinopathy of prematurity or development. We haven't received the official report yet, but the doctor verbally reported to our nurses that besides being premature in their development, Milo and Madeline's eyes looked good. The exam wasn't pleasant for the babies, though, so they were pretty zonked out the rest of the day.

In other good news, Milo came off his ventilator on Thursday night with flying colors. He's now on SiPAP and doing well on that, with the doctors reducing his rate and pressure several times already. Milo also started eating again yesterday with about 10 ml of milk every 3 hours. He's looking good, but is still pretty puffy from his surgery. When the nurses weighed him earlier this week he checked in at 4 lbs, 1 oz - a dramatic gain in weight, but mostly fluid. He was a more sensible, but still artificially inflated, 3.5 lbs or so yesterday. Milo is also back in his isolette where it's nice and quiet for him.

Milo "Muscles" Stiles snoozing away. (Really, he's just all juiced up from his surgery.)

Madeline is now up to 3 hour sprints on her nasal cannula, 3 times a day. She's been doing really well breathing on her own with between 25 and 35% oxygen help. Maddy is also able to wear real clothes now, and has a nice little wardrobe of preemie onesies and t-shirts that Mom and Dad and friends have bought for her. Unfortunately, many of the preemie size clothes are still way too big, but she does have one saucy little leopard print onesie from friend Anthea that fits very nicely. She modeled it for the first time yesterday, much to the delight of her nurses.

Madeline is resting above on her "surf board," which gives the babies a little support when on their tummies. Yes, 7 weeks old and already on surf boards. They truly are California kids.