Tuesday, September 30, 2008

Brady Watch -- Day 2

Madeline has made it 2 days without a brady. Will she make it to day 5 without resetting the clock? We'll see. In other news, Maddy put several ounces and is now 6 lbs 15.4 ozs. Look for her to go over 7 lbs tomorrow! Maddy also passed her car seat test, so the only thing that stands between her and discharge is 5 days without a brady. Let's all keep our fingers crossed. Milo is now nippling all feeds as tolerated, and he's about an ounce or two less than Maddy right now. He had nice bath last night, which he always enjoys, and his liver test yesterday showed significant improvement. By the way, for those of you counting, the babies have been at Alta Bates for 109 days now.

Saturday, September 27, 2008

Weekend Update with Milo & Maddy

The Quick Facts for Today.

MILO
Weight: 6 lbs 9.4 ozs.
Feedings: 60 mls of breast milk every 3 hours - every other feed by nipple (breast or bottle)
Discharge date: Probably a couple weeks, but (as always) it's up to him.
Other items: Milo had a another eye exam yesterday and his retinopathy appears to be an issue that will resolve without significant complication and very likely without surgery. Milo will probably be wearing some thick glasses though -- which we all know chicks dig. He will need surgery (like almost all premature males) to correct his scrotal hernia - probably in a couple months. His liver values are improving, and his color is getting much better. He was examined by a pulmonologist yesterday, and his lungs are looking very good -- all things considered. Though, he will likely go home on diuretics. The pulmonologist says that we should not take M&M to elevations above 6000 feet this winter, but they can start snowboarding next winter.

To snip or not to snip? The Great Circumcision Debate of 2008 has commenced! Feel free to make your opinion known.

MADELINE
Weight: 6 lbs 10.8 ozs (bigger than Milo!)
Feedings: Ad lib (as much as she wants, when she wants it)
Discharge date: Brady watch -- if she can go 5 days without a bradycardia, she gets to go home.
Other items: Maddy likes to eat -- a lot! She's like Uncle Jeff U. at an all-you-can-eat sushi bar. With any luck, she's had her last surgery and major medical procedure. She will go home on some potent vitamins -- particularly iron -- in order to help her keep strong and growing.

On a serious note - The pulmonologist was pretty emphatic that we need to be hyper-vigilant about about keeping the babies from getting a colds or flu. Actually he said "Nazi-like." No grocery stores, restaurants, air planes, subways, or anywhere where there are lots of people gathered in close spaces. Definitely no day care. Everyone who touches the babies must have washed hands first -- and obviously not have a cold or flu. (Look for the 50 or bottles of Purel we'll likely have around our house :). Basically, the consequence of M&M catching even a simple cold is likely a very, very long hospital stay or worse. There's a very nasty bug out there known as RSV which, as luck would have it, is highly contagious and incredibly common that does very bad things to preemies. The babies will receive a monthly vaccine against the virus, which runs about $700 a pop (thanks TriCare!), but every germ and bug is an enemy for at least until next summer. If we seem unreasonable about this, please bear with us. That said, we definitely welcome visitors and all of our friends and family to visit and hold the babies. After all, most of you are pretty clean ;) Thanks!

Chubby Maddy mugs for the camera yesterday.

Maddy expresses her opinion in advance of the first presidential debate.

Milo enjoying some time with Mom. He's got a little more of the "peanut head" effect typical to preemies. Madeline had some of the same thing, and it went away once she was able to pack on weight with her ad lib feedings.

Maddy sleeping soundly and preparing for another night of partying with the nurses.

Milo at rest and looking forward to the permanent removal of his gavage tube.

Thursday, September 25, 2008

Waiting, Waiting, Waiting

Sorry it's been so long since the last post. Rob's been out of town, and I've been spending a lot more time at the hospital this week with Maddy's ad lib feedings, so we haven't been as diligent in updating the blog.

The babies are officially 40 weeks old today - term! Happy Birthday babies!

The Maddy Update
Maddy is doing pretty well on her ad lib feeding, but started having bradys with feeding again on Sunday. This is just a sign that she's using a lot of her energy to eat all her meals herself, and hopefully the bradys will slow down and go away soon. Maddy is gaining weight, which is good, though not large amounts. She did pull slightly ahead of Milo in weight this week (6 lbs, 8 oz), as she gets more food than he does now, and he is still on his diuretics. Maddy is also still taking down relatively large amounts of food. She had a 115 ml (nearly 4 oz) bottle on Monday. Unfortunately when she takes down that much, she is absolutley zonked out and often won't wake up for her 4 hour feeding window that the NICU requires. Then sometimes when she's woken to eat, she doesn't do as well and bradys a bit. Ultimately, she needs to continue to eat her food on her own, gain weight, and either stop having bradys or have them diminish to the point of being an anomoly rather than a regular occurrence. We thought perhaps she would come home this week, but now it looks like we need to shift our hopes to next week. Most of the nurses think that's pretty reasonable to hope for, so cross your fingers.

The Milo Update
Milo is doing okay, too, though he is still a little ways off from taking all his feeds by mouth. He doesn't have the strength to finish all his feeds this way every time, or do more than every other feed. He seems to like breastfeeding better than bottle feeding, due in part to the fact that he doesn't seem to like the taste of the fortifier he needs to have in his milk. (The babies went off the Prolacta study after they turned 90 days old.) He just needs a bit more time to grow and get stronger. He's weighing in at just under Maddy.

Milo's liver values are continuing to improve, and his diuretics are working to keep his lungs clear. The little guy had an eye exam yesterday for his retinopathy, which has progressed beyond the first stage to the second stage. He will have another exam today with a retinopathy specialist to determine if it is progressing any further. We're hopeful it will not progress much further, and he will not need laser surgery to stop abnormal growth and scar tissue from forming in his eye. Thankfully the area where his retinopathy is occurring is in the peripheral zone of the eye, not in the center, and laser surgery is very successful in minimizing the issues associated with the abnormal growth. The laser surgery is also done right at the NICU, so he wouldn't have to be transferred anywhere. If worse comes to worse, Milo might be nearsighted at an earlier age if his retinopathy progresses, or need some additional corrective eyewear to help his eye development while his grows. With Mom and Dad's bad eye genes and nearsightedness, the kids were probably bound to need glasses anyway, but here's hoping it doesn't go beyond that.

Milo's timeline for coming home is obviously longer than Maddy's, as he is a bit more delicate right now. It's hard to predict when it might be, as premature babies can be notoriously unpredictable. How many times have we done a blog post saying it will be so many number of weeks or days before something happens, only to correct ourselves in the next post? Basically Milo needs to do the same thing Maddy does: eat by himself, gain weight, and not have bradys. He can come home on his liver medication and diuretics, so his feeding issues are all that's left. It can be agonizingly slow at this stage, and very frustrating, but sometimes babies also turn a corner quickly and you're there before you know it. We're hoping for that!

Saturday, September 20, 2008

A Leap and a Bound

Maddy - hose free!

It seems like after several weeks of small, steady progress toward their goals, this week Milo and Maddy have suddenly sky rocketed. First there was Milo coming off his cannula on Tuesday and doing so well, and then yesterday it was Madeline's sudden and impressive progress on her feeding.

Yesterday morning, Maddy pulled out her NG tube, so her nurses decided to take her cue and try her on ad lib feedings (eating whenever she wants, as much as she wants) and taking every feed by bottle or breast. After agonizing weeks of carefully pacing Madeline with bottle and breast and helping her through bradys with each big gulp, this week the little lady finally had a few feedings with no episodes and no serious efforts to help her not get too much at once. Turns out the decision timing was just right. Madeline, who is used to having 50 or so ml every three hours, gulped down one 75 ml bottle, one 70 ml bottle, and a 20 ml bottle in one shift with no problems. Overnight she took down a 100 ml bottle in one sitting as well. I guess the girl likes to eat big! I don't know where she gets that from...

Maddy still has some eating restrictions: she has to take in at least 135 ml each shift and eat at least every four hours to ensure proper weight gain. It can take a lot of energy to go from eating half her feedings to all of them. Maddy did get a bit tired this morning and needed a little help pacing according to her nurse, but her progress is amazing nonetheless. And of course losing the feeding tube means one step closer to a wire free baby! You can finally see the little tyke's face in its natural state now.

Ultimately what all this means is that Maddy is not going to be in the NICU much longer. She needs to have a good solid 5-day stretch without any bradys, take all her feeds well, and gain weight. She may come home as early as late next week or early the following week. The babies' 40-week due date was next Friday, so that would be right on schedule. After three months, this seems so sudden, I admit I'm a little nervous! (What? Take care of a baby without round-the-clock nursing help? Can you do that?) Then, of course, I feel so happy I can hardly contain myself.

Our little Milo Camper is also doing better on his feeds. He has some heart rate slow downs with eating, but not many bradys anymore. Hopefully he isn't too far behind Maddy in the eating department. He's also been much more alert and awake the past few weeks, which has been a real treat. Guess we better get on putting the rest of their room together!

Mom with babies yesterday. Notice the less puffy Milo

Thursday, September 18, 2008

Milo, Sans Cannula

Yesterday Elaine and I were very happy and surprised to see that Milo was taken off of his cannula completely. That's right, no oxygen assistance at all! He's made it just about 24 hours with no problems, and his oxygen saturation has remained higher than I've ever seen it on a consistent basis (except for a couple moments during his feedings). The diuretics are also working their magic and Milo has trimmed down a bit -- he's 6 lbs 4 ozs today. Maddy is doing well and packing on the weight -- she's 5 lbs 15 ozs today. Look for her to get to the big 6 lb mark tomorrow. Hard to believe they're only a few ounces apart, eh?

Wednesday, September 17, 2008

BIG THANKS!

Elaine and I want to thank again Anthea (and John and Langston and Cameron), Mark and Jody, and Rich for the great baby party on Sunday. They really know how to put on a great shin-dig and everyone had a great time. Big round of applause! Elaine and I are trying to think of an appropriate way to repay the kindness, but since the babies already have names, it's hard to come up with another appropriate way to show our thanks. Maybe we'll just get you all some McDonald's coupons... Seriously, muchas gracias!

To all our guests and to those who couldn't make it who have been so generous and supportive since this great adventure started back in June, thanks so much to you too! Elaine and I have an awful lot of cards to start filling out this week, so look for a sloppy sentiment coming your way.

You've all made Elaine and I feel like Jimmy Stewart at the end of It's a Wonderful Life.

By the way, M&M turned three months old (38 weeks gestational age) yesterday. Look for the update later today.

And thanks as always for reading the blog!

Tuesday, September 16, 2008

Three Months!

September 15 marked three months of M&M. Since twins are generally born at around 38 weeks (rather than 40), they'd have made their debut right around now had they gone to term. For a change of pace, Maddy celebrated the big event by sleeping though most of the day while Milo hogged up the attention.

Milo wears his hat jaunty style, while Maddy dreams of having no more hoses up her nose.

Milo came in at 6 lbs 2.8 ozs and is now wearing infant size clothing exclusively. As you can see his color is much better, though he still has some jaundice. Dr. Kao is attending M&M for the next couple weeks, and she plans to take a more aggressive approach with resolving Milo's nagging problems. His liver medication was increased significantly, and Dr. Kao is keeping Milo on a stronger dose of diuretics to help address his lung issues and hopefully get him off the cannula once and for all. Look for a less puffy and less yellow Milo in the coming days and weeks. In the meantime, he's doing OK with his feeds. He gets several meals a day the hard way -- by bottle or nipple. The rest he gets through his nasal gavage tube (that little white hose that makes him look a little like a Borg Baby). Realistically, some of these nagging issues spell a longer NICU stay for Milo. Optimistically, we're hoping he's home by this time next month. We'll probably do his hernia surgery a couple months after the home coming.

Milo and Mr. Bear. Take a look back at the August 17 post to compare his growth.

It was a restful day for Maddy, who basically kept her eyes shut entirely during both of my visits. Although she had a couple lively interactions with Mom. The little girl weighed in at 5 lbs 9 ozs and is straddling between preemie and infant sized clothes. Maddy isn't taking any other medications, other than her vitamins. As you can see, she's also still got the rubber hose up her nose, which means that several of her feedings are still getting gavaged. She is getting much better an nippling, and the feeding-related bradys are becoming less and less common. Once she can nipple (breast or bottle) all feeds without pooping out, the NG tube can come out and we'll be one step closer to the wire-free baby we've been dreaming of. Maddy feels the same, and typically pulls her feeding tube out about once a day.

Maddy all snuggled up.

Elaine holds Maddy while Dr. Kao, Blanca, and Teresa perform rounds. To the left in the dark scrubs is nurse Lisa, who was Maddy's very first primary nurse.

Maddy, Mom, and Mr. Bear.

Milo looking startled but he's really just yawning. Amazing the difference lighting makes.

Hopefully, both babies will be photographed from home this time next month. The pictures should be a lot more interesting then -- I'm working with limited props at the NICU.

Friday, September 12, 2008

Nearly 90 Days

We've had a lot of moderate ups and downs so far this week, but we seem to be finishing out on a good note. At the week's start, the doc weaned Milo down to half a litre of oxygen, but the little guy didn't make out so well. He responded by retaining lots of fluid (which is pretty consistent with BPD) and he needed to have his oxygen bumped back up. Due primarily to the fluid retention, the boy went up to 6 lbs 3 ozs, but he is now back on diuretics and today he is hovering just a hair below 6 lbs. His color is looking much better -- though he's still a bit jaundiced -- and we'll find out on Monday how his liver is fairing on the medicine he's taking.

Maddy came in at a chubby 5 lbs 8 ozs today and definitely knows how to make her needs known. She's not afraid to make demands -- change my diaper, feed me, and pick me up (a lot) are the primary orders she likes to issue. Easy enough, though we're really looking forward to wire free babies! Along those lines, this week was a big first for Maddy -- she took a little stroll around Nursery 3 with nurse Janet and Mom unattached to any wires or monitors. It wasn't very far, but it's a good start. Now, if she can just make it as far as the parking lot...

Milo. The wrinkles under his right eye are due to the tape for his cannula and NG tube.

Milo and Ross.

More of Milo, who is a lot more alert these days and glad to be getting more of the spotlight.

Mom and Maddy.

The whole mishpuka.

Sunday, September 7, 2008

Weekend Pictures

Not a lot of news to report on progress. After several weeks of good forward movement, we seem to be in a "steps back" cycle. The babies are still making good progress with weight gain -- in fact Milo is poised to go over 6 lbs tomorrow, and Maddy is right around 5 lbs 4 ozs currently. The problem is that M&M are having troubles with feeding. Previously they seemed to take to nippling (breast and bottle feeding) pretty well and it looked like they were going to be champion feeders. But the last few days have been pretty frustrating. Until they get the hang of eating on their own completely, without bradys, apneas, and significant desats, they will have to remain in the NICU. The last couple days they've been very finicky and have received the bulk of their feeds through their nasal gavage tubes -- even the ones that were supposed to be primarily bottle or breast. But as always, someone could flip the big feeding switch in the next couple days, or the problem could persist for several weeks to come. It's tough to know, but we're sure hoping for a quick fix.

Milo's hernia also presents another potential delay on discharge. He will need surgery and the question is whether he'll get that before or after discharge. The preference is to wait to perform the surgery until he weighs about 10 lbs and is stronger in general. The problem is that if the hernia becomes incarcerated, it could spell a very long hospital stay for the little guy. That's something we really want to avoid. We're unsure right now whether Milo will come home first and get surgery later or whether he'll make the trek over to Children's Hospital for the surgery prior to his final discharge. For now, it looks like he'll return after a month or two at home to correct the hernia.

Now for some positive -- a few nice pictures from yesterday.

Mom and Maddy.

Milo says, "don't shoot!"

Milo and Dad.

Yawning Maddy with a new friend.

Friday, September 5, 2008

Maddy Makes 5!

The twins have hit a couple more milestones in the past couple days. Yesterday Madeline went over 5 lbs. (This morning she is 5 lbs 1.8 ozs.) Maddy has not needed any supplemental oxygen since Sunday, so it looks like she may be done with cannulas (knock on wood)!

Milo is his big ole' self. He's a robust 5 lbs 9 ozs and is quickly out growing his preemie clothes, which is just fine with us. Milo needs less and less supplemental oxygen lately -- he's down to 21%-23% and the docs cut his oxygen volume down to 1 litre. The boy is still a little jaundiced though, as you may have noticed in the pictures below. Basically, the vitamin rich Hyperalimentation (the IV nutrition given to preemies), which was essential to Milo's growth and health early on, can also cause cholestasis, a condition effecting liver function. Thus, this condition is known affectionately as Hyperalimentation-induced cholestasis. The good new is that it's expected resolve with a course of medicine and Milo is already looking better.

The babies are both very alert these days during their awake periods and really enjoy it when we hold them and sing to them -- hard to believe given my voice but true. They are both still getting most of their feeds through a nasal gavage tube, but they also get a bottle feeding at least three times daily, and both babies also breast feed at least once or twice a day. Both babies still experience the occasional brady and the odd oxygen desat, but those are happening less and less.

So when do they get to go home? Well, they need to be off oxygen, feeding entirely by bottle or breast, making consistent weight gains, and -- most significantly -- they need to go 5 days without a brady. That's probably a few weeks away for Madeline and probably a week or two more than that for Milo.

Monday, September 1, 2008

Nipplin' Right Along...


The Pictorial Update


M&M at 36 weeks corrected age enjoying some new friends from Nana.
What a difference 11 weeks makes!

-- MADDY --

Weight: 4 lbs. 13 ozs. (2.19 kilos.)
Oxygen needs: Room air! (For now.)
Feedings: 43 mls. breast milk/Prolacta every 3 hours. 1 feeding by bottle (called "nippling"), 1 by breast, the rest by NG tube (the little white tube in her nose).
Other items of interest: Now likes to be held for comforting. Extremely alert! Loves to look at people, Milo, and her mobile. Madeline hiccups just like mom -- loud and for a long time!

video

Maddy says, "no more pictures, Daddy!"




-- MILO --

Weight: 5 lbs. 7 ozs. (2.46 kilos.)
Oxygen needs: Nasal cannula, 2 litres of 22-26% oxygen.
Feedings: 45 mls. breast milk/Prolacta every 3 hours. 1 feeding by bottle, 1 by breast, the rest by NG tube.
Other items of interest: Milo is mellow and patient, as always. He loves being held, having a clean diaper, and not having his sister tug on his ears.

video

Milo waives to his fans.




See you next time!