Worth Every Penny

Milo

Maddy

The babies went for their check-up on Tuesday and we were delighted to find out that the kids made great weight gains. Milo really surprised us both. The boy wasn't eating particularly well his first week home, and we were just hoping he hadn't lost any weight since his discharge. Turns out he was just tucking it all away somewhere because he weighed in at a robust 8 lbs 10.5 ozs. In fact, turns out he's heavier than Maddy who's been swilling down the milk like she's got a hollow leg. Of late, Milo's been eating like a champ, so we expect he'll make even bigger gains soon.

Maddy also plumped up nicely. She's now 8 lbs 9 ozs and eating impressive amounts. Her reflux is another story. The poor kid gets pretty frantic after feeds, and it's not uncommon for it to take a solid two hours to calm her down and get her to sleep. She's taking some medicine for the reflux -- basically the same stuff that's in Zantac. She's only been on it for a day, and we haven't seen a major break through yet. Hopefully she'll turn a corner soon. If Maddy can mellow out a little after feedings, life will instantly become 30% easier.

Milo also had a follow-up eye exam on Tuesday, which made for a very busy day. After their pediatric visit, I had to drive Milo to San Ramon (about 40 minutes away) for the appointment. That's when the fun started. Infant eye exams are pretty painful to watch. The doc used those crazy spreaders on the little guy's eyes -- it was like something out of A Clock Work Orange. To add to the whole adventure, a pipe burst in the men's room while I was changing Milo. I was about two-thirds of the way through his diaper change when water started pouring in from the ceiling. Quite an adventure. The good news is that Milo's eyes continue to improve. His retinopathy has resolved in his right eye, and it's now just mild in the left. With any luck, he'll only need one more exam.

Finally, we received the invoice for Milo's hospital stay. (Drum roll.) As predicted it exceeded $2 million ($2.1 million to be exact), and that doesn't include the billing for the doctors or several other items. All in all, I think we may hit the $5 million mark for both kids. We love you Tricare! We'll be providing the NICU staff with a giant novelty check sometime in the near future. We'll just post-date that til next pay day.

The First Big Week Home

The family Stiles celebrated one week together at home yesterday. One terrific, sleep-deprived, week. And what can we say about parenting twin infants? It's pretty much summed up by the cliche we hear whenever we're out strolling around with the kids. "Are those twins? Boy, you really got your hands full." Yes, yes we do. This week (and last) we discovered the necessity of baby carriers. These handy inventions allow us to do all kinds of fun things while the babies are attached to us, like wash bottles and feed the other baby, or maybe even allow one of us to shower while the other watches over both sprouts. The bonus is that Milo typically falls asleep within seconds of being in placed in the carrier -- Madeline not so much.

Far more important to our sanity the last couple weeks, we were very fortunate to have Elaine's sister Antina come to help out when Maddy came home, and this week my sister Heather was here to help us get used to managing the duo. Heather has lots of experience in this area since she has a 5 and 2 year-old at home. Heather is also a very good photographer, so you'll notice a marked improvement in the quality of several of the pictures this week.

So what did we do with the week?

We bathed Milo and Maddy too. Turns out that baby-fresh smell lasts only so long before giving way to the odor of sour milk or worse(!). Above: Aunt Heath gets a nice picture of Milo in the tub. You'll have to keep guessing about the circumcision ;)

We visited Muir Woods along with Aunt Heather.

Mom swings into action to resolve a 3-diaper blowout in the Muir Woods parking area -- surely violating several EPA regulations. Maddy decided to see just how prepared we were to deal with the mess. Luckily, we had a couple spare changes of clothes, several extra diapers, wet wipes, a changing pad, ointment, etc. on hand. All were put to use.

On that note, I used to think that parents took far too long getting their kids ready to go out. Come on! How hard could it be? Now I understand. I'm also starting to understand why the minivan exists. No, we have no plans to buy one, but their virtue is more and more clear each time we decide to go some where in the Subaru family truckster.

We took walks around the neighborhood. Heath gets a nice shot of Dad and Milo.

We hung out around the house. Actually, that's pretty much what we did most of the time. Maddy enjoys hanging out in with Momma in her baby carrier above. Thanks again Heath!

Maddy enjoys some comfort time at home with mommy. Notice that Maddy is wearing a bib here. She generally needs to be held this way (i.e., at an incline) for at least 20 minutes after eating or else she'll get terrible reflux and spit up a lot. She usually spits up anyway, but the incline takes a lot of the edge off the resulting mess. Reflux is pretty common to preemies, and her reflux should decrease in time.

Milo doesn't have the same reflux issues that Maddy has, but he does enjoy snuggling and this is his preferred position of rest.

Mommy and Maddy during a tummy time session. We need to be sure to have the kids do several push-up/head-turns every morning to help build their muscle tone. All the time on their back in their NICU crib takes its toll on shoulder development. The babies have a surprising amount of head control though. Both can lift up their noggins and turn them to both sides.

Dad and Aunt Heather hanging out with the babies.

Milo at rest. Check out the shine on that forehead! Definitely Daddy's boy.

Stay tuned to see whether Mom and Dad can make it through next week unassisted.

Home.

We've all been waiting for it to happen and it seems surreal that it finally has. That's right, Milo is home. I guess the boy really wow-ed the NICU parole board (i.e., Dr. Dudell, Blanca, and primary nurses), because last night at about 7:00 pm Milo walked out a free man. Well, not so much walked as wheeled out in a double stroller. But the effect is the same!

Above: Donna, one of Milo's primary nurses, lifts Milo out of his crib for the last time. This week several of Milo's primary nurses attended him for his farewell tour -- Janet, Dana, Sandra, Donna. He also got regular visits from all of the others who gave him such great care along the way. (The NICU had a sudden influx of sick babies over the last couple weeks, and many of the babies' nurses were attending to some very sick 24 and 25 weekers.)

Elaine and Donna wheel out M&M in their double stroller departing the Nursery 3 feedlot. Ah, who doesn't LOVE a double stroller? What fun would shopping be without an aisle full of these massive vehicles to navigate around. That's right, now we got one too!

NICU staff and several parents gather to send us off. To put our ordeal in perspective, the lady second from left has triplet 25-weekers, and the lady in the center has a 24-weeker. Their babies are doing well, which is a testament to the great care offered at Alta Bates.

Donna, Cheryl, and Eniko with M&M. By now these ladies are familiar faces on the blog. And they've each spent so much time caring for the babies that I think they now have an ownership share. I should probably set up some kind of time share.

Elaine and I finally get to remove our blue hospital bracelets.

Exiting Alta for the last time as patients.

Saying good-bye. It's bittersweet moment. The nurses and staff have become a part of the family. How do you thank someone for saving your children? I gave them a gift bag of chocolate...

Milo lays down in his crib at home for the first time.
How did the first night with twins go? I think Elaine's expression is more upbeat than the first morning after Maddy came home. At center is Milo working out in his baby gym. He banged out about 10 push-up & head turns this morning. Due to all the time he's spent on his back, we have to be sure to get Milo plenty of tummy time while he's awake to help him develop better muscle tone in his arms and shoulders.

What's next?

4 Months Old!

Today of course marks four months of Maddy & Milo and the kids' long-time primary nurse, Auntie Janet, decorated to mark the big occasion.

As you all probably know, the 15th means it's time for the Mr. Bear growth comparison. Take a look at the shots below and then look back at some of the earlier photos of the babies with these stuffed animals. It's amazing how much the babies have grown.

Milo sleeps off a milk hangover with his pals.

Guess what color Maddy's eyes are?

Janet spends a little QT with the babies. M&M are sporting the
great pumpkin hats she knitted for them.

Two Million Dollar Baby!

As you might guess from the title of this post, Madeline's hospital bill showed up in the mail today. Well, it wasn't technically a bill since it stated in prominent print "THIS IS NOT A BILL" right at the top -- thank God! But it was a full accounting of Madeline's hospital stay. What's the damage? How about over $1.8 million dollars -- really. Of course, that's probably only about 50 Euros due to the incredible shrinking dollar. The good news is that I have good insurance for the babies, and they are unlikely to get repossessed. I suspect that Milo's bill will come nearer to $2 million (or more) due to his higher level of treatment, and remember that he still has to get surgery on his hernia. More than likely, Tricare will pay about 10 to 20% of the total based on the "negotiated" terms between the insurance company and Alta Bates.

The big news this week is that Milo had his nasal gavage ("NG") tube removed and he looks much better without it. Mom was on hand for several hours today, and she and Nurse Janet made sure that Milo got his fill of plenty of milk.

Milo gets ready for a hose-free feeding from Dad today.

Milo recovers from a hose-free feeding with Dad.

Mom with Milo the day before yesterday.

In even bigger news, it looks like Milo may get to come this week. We're shooting for this Friday, which would be great since Aunt Heather is coming for a visit this Saturday. No doubt Heather will be very disappointed if she doesn't get to change both babies repeatedly. Keep your fingers crossed and lets hope it all goes as planned.

Earlier this week Madeline went outside for her first walk. It was a pretty short jaunt with Mom and Dad. Maddy was in a baby carrier attached to Dad. A couple days later, I took her out for her first solo jaunt in her stroller.

Maddy departs for her first stroller walk with Dad.

Maddy has settled in pretty well and seems to like the place. No doubt she misses the 24/7 doting that she received from her nurses. But she seems pretty happy all in all.

Maddy catches a few winks in her swing.

Hard day's night(s)...

So what's it like having Maddy at home? It's pretty much like every cliche you've heard about having a new baby. Those of you who have kids will recall that during the pregnancy, few people could talk about the event without including some line about "getting your sleep now." Well, of course it's basically all true, and when you have a preemie it's probably even a little more so. I'm sure having twin preemies at home will verge on science fiction, but we're not quite there yet.

The first night we discovered that babies make a lot of noises when they sleep - lots of chirps, squawks, farts, and the occasional burp. And of course they cry too. There's so much background noise at the hospital that we never really noticed how noisy Maddy is when she sleeps. For the first night I was out of the bed inspecting her every time she made a peep. The only thing worse than the noise was the rare silence. During those moments, I would jump out of bed and put my ear near her nose to make sure she was still breathing. Of course she was, but that's not something easy to take for granted when you've been watching monitors for the last 16 weeks.

Each night since the first has gotten a little better for the most part. Antina was kind enough to stand a watch for us during the week to allow us to get a decent night's sleep. God bless her. The last couple nights were pretty rough though. Maddy was gassy (which she gets from Elaine of course), and it's not nearly as funny as you'd think. Baby farts are cute and mostly lack smell, but the pain they produce drives the little ones round the bend. We've been working with a bunch of different solutions and we think we've got a few promising leads. Hopefully it's not colic. I mean, come on! I think we deserve a free pass on colic.

On the plus side, Maddy seems to be putting on the weight quickly at home. We weighed her a couple days ago and she came in at 7 lbs 10 ozs.

As for Milo, he's alright these days. We tried switching to a different bottle for him and it seems to be working out well so far. He did much better with his feeds today. On the negative side, the little guy has developed a terrible diaper rash. The nurses are on it -- so hopefully it will resolve soon. Milo weighed in at a robust 7 lbs 9 ozs. We're hoping to have him home within 2 weeks or so.

Maddy Comes Home! (Now what do we do?)

After our last post, you probably didn't expect to be reading this. But hey, the roller coaster goes up, the roller coaster goes down. So how'd it happen? Yesterday Elaine got a call in the morning from the babies' regular doctor, Dr. Kao. The night before, Dr. Kao had left for the day when Maddy had the brady, and the doctor covering the evening shift wanted to play it safe and keep Maddy there. Dr. Kao learned about the decision the following morning and decided that Maddy was OK to go home. Still, we hesitated to post anything until we actually had her home.

As I write this, it's 9:30 in morning and Maddy is (mostly) asleep in her pack-n-play just a few feet from our sofa. Below is the complete photo documentary.

Maddy and Milo hanging out together one last time while Maddy is a patient. The little girl will be back each day to visit Milo along with Mom & Dad.

Nurse Brandi ceremonially removes Maddy's ID tag. It would have been strange to realize now that she was the wrong baby. She's ours!

A small contingent of the great medical team who cared for Maddy. That's Cheryl up front holding Maddy for the last time as a NICU patient. No doubt we'll still harass them all for advice in the coming months.

Maddy's first breath of fresh, clean East Bay air.

Nurse Brandy hands off to Elaine and now she's ours.

Elaine carefully inspects the baby to make sure there are no warranty issues. "Hey, wait a minute! There's a hemangioma on this baby's head! Where's customer service?"

I like this picture because it captures -- completely by accident -- a bunch of pertinent things. The baby is front and center with Mom arranging her; the hospital (and Elaine's hospital room) are in the reflection, and there I am in the center taking a picture and trying to be useful.

Elaine got to take the hand-off, so I took the honors and carried Maddy inside the house.

Lucy senses that things are about to change.

Maddy gets her first bath at home. Then it was off to bed. Maddy's first night home started off pretty sedate, but she was restless throughout the night. We're thinking the new surroundings, routines, and some heavy gas pains kept her fussy. We did manage a couple hours of sleep.

The morning after our first night of full-on parenthood. Elaine looks a bit shell-shocked, but she's feeling better now. Luckily Aunt Antina was on-hand to help us out.

Of course, the little man has to hang out in good ole' room 15 for a little while longer, but we'll all be heading off to visit him later this morning. He did very well with his feedings last night and this morning. If he keeps it up, he should be home before too long. No baby left behind!

Almost...

Around noon I was at a conference in San Francisco when I got word from Elaine that Maddy would be discharged today. Awesome! Finally! I headed over the hospital and we spent a while going through all the discharge details. Instead of rushing home, we decided to hang around for a while to visit with Milo before bringing Maddy home. A bit after 7:00 pm I finished carring all of Maddy's things out to the car, brought in her car seat, and was about to start getting her all set for the journey home. Then an alarm went off.

The alarm only lasted for a couple seconds, but it was a familiar sound -- one we've heard many time before, though not too often of late. We looked up quickly at Maddy's monitor just in time to see the number 86 in the top right hand corner. It was only there for a moment, and within a second or two the number jumped to 124, then 130 something, then back up to the 150s. As you all know by now, a brady occurs anytime a baby's heart rate drops below 100 for more than 10-15 seconds. And as you also know, whenever a NICU baby has a brady she must be kept in the hospital for 5 days for further observation. In Maddy's case, I guess it's tough to tell whether she remained below 100 for more than 10-15 seconds, though it was probably close. But regardless, the result is 5 more days of hanging out in the NICU for Maddy.

I guess 5 days shouldn't matter that much after 111 have gone by, but this was pretty tough to take. It hasn't always been easy going through this ordeal, but we've tried to keep upbeat. Tonight was a rough though. We know the docs and the folks at Alta Bates are looking out for Maddy, and this is just the way it has to be. It still sucks.