Big Boy Ben

Ben is turning into a big boy! He's watching everything we do and imitating things, which is sometimes hilarious (walking around in Daddy's shoes all the time) and sometimes a little scary (like how I groan when I stand up from the floor now - who knew he was listening??). He's also started stringing words together to make little phrases like "night-night Daddy" or "uh-oh shoe" when his shoe fell off in the car today. That will hopefully make life a lot easier when I'm trying to figure out what he's saying!

He made his first trip to the dentist this week and did great. All she did was peek at his teeth, show him her tools, and talk to him about brushing his teeth by showing him on the stuffed animal. He didn't freak out and even opened his mouth for the dentist, so she called it a big success for his age. Hopefully when we go back for a real visit he'll do as well.


After watching me cut his toenails, Ben decided to give it a try himself.


He usually hangs out on the guest bed with me while I dry my hair (and sometimes his, too) and Ben decided this time to brush mine as well.


He loves riding around on Daddy and has found that eyes and ears make terrific hand holds! And he's not naked, we were all on our way to the pool.


Ben loves the pool! I wish we could take another term of swim lessons before this baby arrives but it's too physical for me to do with him right now. Hopefully the lessons we learned last year will help him until we can go back.



We visited a huge outdoor park this weekend with tons of stuff for kids of all ages. I love this about Singapore because these places are clean, well-maintained, and FREE. Matt and I wore the little guy out! It was his first trip outside the house since coming down with his cold and Ben was ready to play.


Big slide!


Wheeeee!!!


Little fireman...


Here's the 26-week belly. Everything from here on out is all new to me, so it's like being pregnant for the first time again! I already feel huge because I've never been this big but I'm in love with this belly and feeling this wild baby...he is SO active! I was reading the newspaper yesterday and the whole paper was shaking because the bottom was resting on my belly, which was all over the place.

Sick Days

It's been pretty slow around here lately. I've tried to avoid taking Ben to any playgrounds for the past few weeks because there has been a major outbreak of Hand, Foot, and Mouth Disease in Singapore lately (over 1,000 reported cases a week!) and since we went through it already last year I'd hate for Ben to suffer through this strain, which is supposed to be a lot worse. We've had several playdates but nearly all of Ben's friends have been sick with one thing or another, so we've been spending a lot of time at home. Even so, Ben still managed to pick up some kind of cold. Today he sounds like a little old man with a croaky voice, which is actually pretty funny if I didn't know he was sick.

We have managed to play a lot of peekaboo. Can you find Ben in this picture? (hint: it's not that hard!)


There's Ben!



Now that he can climb up in the rocker at bedtime, he usually beats me there and waits patiently for me to get his books.

Preemie Calculator

I just ran across this article on another preemie's blog and it makes me count our blessings for several different reasons. First, because Ben fared so well when the odds were stacked against him and he could have faced a lifetime of overcoming disabilities. Next, because with each passing day this baby is growing bigger and stronger. We're nearly past the most critical weeks in terms of survival, although it will still be a while until we're in the "safer" preemie weeks. Our focus and goal is 38 weeks and a scheduled c-section in mid-July and we're getting there one day at a time! Finally, every time I read anything like this I'm so grateful to all the doctors and nurses at Texas Children's for their amazing dedication and care and I realize how fortunate we were to be living so near to a world-class NICU. They accepted babies from all over the state so a lot of parents didn't have the luxury of visiting their baby every day like we did.

We found out that having a little white male preemie is about the worst category since they tend to fare the poorest, but it was really sobering to see numbers associated with the different risk categories.

April 16, 2008, 11:35PM
New way to assess preemies' chances
Calculator considers factors like sex, weight

By TODD ACKERMAN
Copyright 2008 Houston Chronicle

Doctors and parents facing anguished decisions about the treatment of very premature babies will now have better information thanks to an online calculator that emphasizes more than just how long the infant was in the womb.

The statistical tool is based on a study led by University of Texas Medical School at Houston researchers, who found factors such as weight and gender also strongly influence outcome when babies are at the fringes of viability.

"This was born of some degree of frustration that we can't give these parents a better sense of their baby's chances," said Dr. Nehal Parikh, a UT-Houston professor of pediatrics and one of the study's authors. "At such sensitive times, it'll mark a significant improvement to be able to share evidence-based data about how infants on average fare."

The calculator furnishes estimates of risk based on data from the study. Doctors (or parents) plug in five total factors and the calculator determines the likelihood of such a baby surviving, as well as the odds of him or her having moderate or profound impairment.

The factors, besides gestational age, birth weight and sex (girls fare better), are whether the mother received prenatal steroids to help fetal lungs mature and whether the infant was a single delivery rather than one of twins or more.

The study, published in today's New England Journal of Medicine, looked at babies born 22 to 25 weeks after conception, the tiniest, frailest category of pre-term infants. About 15,000 such babies are born annually, and they require aggressive intensive care to be kept alive.

Many nevertheless die soon after birth, while some survive and reach adulthood, pretty much unaffected. The rest experience some disability, ranging from having to wear leg braces to severe cerebral palsy and profound intellectual disability.

Current guidelines give odds of survival based solely on gestational age, though many doctors said they tell parents the likelihood may be better or worse. They acknowledged, however, that the adjustments they make are more intuitive than scientific.

In addition, the study suggests the factors may be more significant than doctors had thought. It found that a baby born at 23 gestational weeks would have the equivalent chance of one born at 24 weeks if the sex were female, the mother got steroids, there were no other babies born alongside, or he or she weighed an additional 2/10 of a pound. More than one of the factors in the baby's favor increases the equivalent age slightly.

"Until now, all we knew was survival data based on gestational age," said Dr. Eric Eichenwald, a Baylor College of Medicine pediatrician and the co-author of a commentary that accompanied the paper in the journal. "Even if many doctors already told parents that these other factors influence outcome, I think this shows they have a bigger effect than most would have thought."

No recommendation
A number of doctors said the new information would give parents a better sense of the possible burdens of intensive care.

But no neonatologists interviewed said they thought the new information would result in more decisions to provide only comfort care to the baby, to not pursue the sort of aggressive therapy that might save him or her but is also painful. The study makes no recommendation of when aggressive care would be inappropriate.

Parikh said that is a decision for individual parents and doctors to make. Currently the odds of survival are so long for infants born in the 22nd week of pregnancy that it is not uncommon for only comfort care to be provided. Infants born in the 25th week, on the other hand, routinely receive intensive care.

But as long as a doctor tells parents there is a chance the baby will survive, the vast majority want everything done, said Dr. Daniel Batton, a member of the American Academy of Pediatricians' committee on fetus and newborn.

"I don't think this new study is going to change that," said Batton, whose committee is working on guidelines that will incorporate the study. "I think this is an important study that pulls information together into one package and will stimulate conversation, but I don't think it'll change parents' decisions."

The study of 4,446 infants found 49 percent died and 21 percent survived without a disability. About 12 percent survived with significant impairments such as blindness or cerebral palsy, and another 12 percent had more severe disabilities.

The study was conducted between 1998 and 2003 at a network of academic centers, including Memorial Hermann Children's Hospital in Houston, with the most advanced neonatal care facilities.

Researchers stressed they don't know yet how well the calculator's data will translate to less sophisticated hospitals. They called for parents scheduled to deliver prematurely to go to academic centers if possible because they so improve outcomes.

The National Institute of Child Health and Human Development provided funding and researchers for the study.

todd.ackerman@chron.com

A Visit from the Sailors

One of the fun things about living overseas is that you get excited to see Americans, even if they're total strangers. The USS Lincoln stopped here for a few days and we got the opportunity to host 6 sailors from the airwing for lunch on Saturday. We were matched with some young, polite guys who were nearly all on their first cruise. They have spent a month at sea and are currently en route to the Persian Gulf for another 5 months, so they were pretty happy to be on solid ground for a while! It was a lot of fun for us to grill and hang out with them for the afternoon before they had to head back to the ship because it was pulling out this morning. We wish them all the best through their mission!


Ben went crazy over his new friends, even though most of them had no idea what to say to a babbling toddler. Ben was talking away and stripping about half of the time. I think he was pretty pround of his belly button for whatever reason.


Oh dear...Ben is really experimenting with shoes now! He's moved on to my heels and actually getting pretty good at walking in them. It's so funny waiting to see what he'll show up wearing next.


He got to try his first sucker today and loved it. It was even worth storing in the drawer for a while and coming back to recover later. Good thing I saw him do that in case it got forgotten. And yes, that's one shoe on his foot.

New Adventures

It looks like it's almost time to turn the crib into a toddler bed! We haven't had any escapes yet but it appears we're getting close...


Ben has started imitating all kinds of things we do, including wearing shoes. Here's just a sampling of what he's pulled out of our closet.




He's also started "feeding" his puppy, washing his own hands with soap, and taking his own temperature.


Ben's favorite accomplishment lately is that he's finally tall enough to get into most chairs and couches so he no longer has to play on the floor like a little person.


He's just growing by leaps and bounds! His vocabulary grows daily, now including words like stuck, hot, shirt, car, bubbles, purple (although that can refer to almost any color - still working on that!), apple, and chip. Luckily I have him convinced that pretzels and cereal are chips so that satisfies him for now when he goes to the pantry looking for chips.

Our Weekend

We went to a birthday party last weekend at a park on the coast and Ben had a wonderful time wandering around in the trees and climbing over the roots. We'll definitely have to go back and let him explore because we never even made it all the way to the kids' play area.


My sweet little baby sound asleep! I tiptoed in last night to check on his air-conditioner and took a quick picture of him all curled up with his puppy and everything else in his crib. He woke up screaming a few hours later and he was completely on the other side of the crib (along with all his stuff) and his arm had come out the neck hole of his pajamas...quick fix and back to sleep, thank goodness!


Ben has been getting lots of important calls lately. They usually go "ahno (hello) uh-huh, uh-huh, ohhh, bye-bye".


This is the building next door, or what's left of it. It's actually really fun watching them tear it down and thank goodness it hasn't disturbed Ben's naps yet because all of the bedrooms face that direction. I dread when they start jackhammering because that is deafening.


Funny story from bedtime...Ben is repeating almost everything I say so I'm trying to teach him the words for anything he looks at. I picked up his diaper and asked him what it was. He said "cookie! poo poo! puppy! book!" Nice guesses, but not quite right! Baby #2 is lucky because he's getting to enjoy all the belly laughs that Ben gives me every day.

A Momentous Day

Well, this was a big day at our household...not because anything happened but because NOTHING happened! This was the day in my first pregnancy when Ben arrived unexpectedly, so every day we make it beyond today means a bigger, healthier baby than what we saw the first time around. Up until that fateful day in my 24th week, we had no idea that the pregnancy was anything but normal and NO idea that you could deliver a baby that early and hope for it to survive, much less thrive. I actually wrote out the entire story in detail soon after Ben's birth just to sort out what happened that day but it's still too upsetting for me to read, so I'll share the abridged version...

I woke up like normal on a Sunday morning but noticed about an hour later that something felt very strange. I called the doctor (my regular doctor's partner was the one on call that weekend) and tried to explain but since I didn't know exactly what I was feeling I think I did a poor job of relating the symptoms. He reassured me that it sounded like something normal, encouraged me to take it easy, and just kept my regularly scheduled checkup with my doctor for the following day. Matt and I already had plans to see the Astros play and I figured I could sit at Minute Maid Park as easily as I could sit on the couch so we decided to go. Probably not the best decision I've ever made but hindsight is 20/20. Next bad decision - a big chili cheese dog. After the 7th inning I got up for the first time and went to the bathroom and saw a little blood. Then there was no denying something was going very wrong. We dropped our neighbors off at home and went to the hospital to find out what was happening. All I took was my purse and a magazine because I really thought I'd be home that night, no other possibilities had even crossed my mind. I think it was about 5 or 6pm.

I started off in the admitting room on the labor & delivery floor and they took urine and blood samples and hooked me up to fetal heartbeat and contraction monitors. I was very surprised to see that I was having contractions because I wasn't feeling anything. The nurses were on the phone with the doctor and started giving me regular shots to stop the contractions but they had no effect. When one of the nurses finally examined me, she quietly left the room and asked another nurse to get a second opinion. That's when the entire mood in the room shifted and suddenly everyone working with me was in crisis mode. It turns out I was fully dilated and the bag of waters was actually protruding through like an hourglass, as they called it. That's what I had felt that morning but couldn't adequately describe because I had no idea what it could possibly have been.

The rest of the night is pretty much a blur. The doctor arrived shortly after and told me I would be in bed for the rest of the pregnancy. I remember asking if I could still go full-term...ha! They tilted the foot of the bed up so that gravity would help take pressure off the bag of waters and I strongly regretted that chili cheese dog from the baseball game because I got the worst heartburn of my life. One sweet nurse who was a true angel that night kept coming in to take blood or give me various shots, including steroids to hopefully help mature Ben's lungs. The contractions had become painful but slowed down enough so that I didn't feel them although they never stopped. The resident neonatologist came to talk to us and very candidly told us what we could expect if the baby arrived at 24 weeks - 50% chance of survival, non-functioning lungs, liver, and intestines, but a good chance of catching up developmentally by kindergarten. Matt and I just stared at each other. Kindergarten??? Like 5 years later??? But he was completely honest with us and we really respected the fact that he didn't give us any false hope.

By this time our parents were at the hospital as well and we'd talked to everyone and prayed a lot. I had no idea what to pray, I think because I was so shocked and pretty overwhelmed by everything. There was really nothing else to be done but hope gravity would eventually pull the bag back in and an emergency cerclage could later help hold the baby in. It was getting late, maybe 10 or 11?, so the doctor told us to try and get some sleep and let everyone go home. I had been admitted to the hospital but the floor was entirely full so I was still in the admitting room with other moms in labor coming in and out. Matt and I were still staring at one another in shock when I felt my water break. Lots of phone calls were made and everyone who'd just left turned around and came right back to the hospital.

An earlier ultrasound had shown that Ben was in the breech position, so the doctor ordered a c-section. I was quickly prepped and wheeled into the OR and it seems like Ben was out in no time. He cried like a tiny kitten and looked like a red, angry old man when they showed him to us, then he was whisked off to the NICU to be stabilized for a ride downtown to Texas Children's. Unfortunately, the epidural made me sick (think chili cheese dog AGAIN) so I was throwing up through the entire procedure and in my room later when they wheeled Ben's incubator in before he made his trip. I have very little memory of him that night. It would be 3 days before I got released from St. Luke's and was able to travel to Texas Children's to see him again, and 3 weeks before I could actually hold him.

Looking back now I have no idea how we made it through the experience other than the sheer grace of God. I have no doubt now that He will give us the strength required to meet unexpected challenges in the very moments we need it most. He will also use family and friends to meet our concrete needs during those times, and we never could have made it without them.

We've also seen that we were blessed in many unexpected ways:
-We enjoyed our pregnancy up until the day it ended because we were blissfully unaware there were problems. Would I rather have known and done something about it? Of course. But at least I got to enjoy every minute of being pregnant for the first time.
-By having a c-section, Ben's delicate little head didn't endure the trauma of a natural birth and as a result he had NO bleeding in his brain. That's a miracle for a 24 week preemie.
-Since my doctor's partner was on call, both he and my regular doctor performed the c-section. Between them they have overseen about 18,000 deliveries over 35-40 years. That's the kind of experience you want when you're having an emergency operation.
-That tiny cry and angry expression on Ben's face meant he was a tough little guy and actually got low but passing apgar scores at birth. His stubbornness and determination (so obvious now!) helped him thrive in a harsh and unnatural environment for months when he should have still been protected in the womb.

I felt tremendous guilt for failing my little baby on my first day as a mother and I've of course questioned all kinds of things wondering if I could have changed the outcome. But the fact remains that God planned for Ben to show up early but He also planned to show us how well He could protect and bless our little boy, so all we could do was stand by and watch. We just had to have faith. And thank goodness, day by day and at every major milestone, Ben proved that he could overcome the odds he faced and he came home to us a week after his due date.

Whenever I tell anyone about Ben's birth, I never feel like I can adequately explain the enormous risks he faced and how incredibly fortunate he is to not have developed so much as an infection while he was in the hospital. We watched other babies die, undergo life-altering surgeries, and even celebrate birthdays while still living in the NICU. Yet somehow our little fighter made it through relatively unscathed.

I'm really terrified at the thought of sending another baby into the NICU, especially for months at a time. As far as modern medicine has come, there is absolutely no substitute for a mother's womb and the nurturing and protection it provides. My constant prayer is that I can keep this baby with me as long as possible so that he doesn't have to experience what his older brother had to suffer through. Every kick is a reminder that I'm carrying a precious new life and I really hope his arrival is a day full of joy and celebration instead of shock and uncertainty. Please remember us in your prayers in the coming days and weeks and hopefully months as this little guy grows.

And don't worry, the next post will be happy again :)

Our Week in Pictures

Ben's favorite canvas is himself lately. I guess I should have just bought him some markers and not bothered with the easel!



I love watching Ben push his little shopping cart outside, at least until he tries to off-road with it and gets it stuck!


Daddy left a very exciting toy on the floor this morning and Ben found it first thing!



Nope, can't type that way...


There is a new love in Ben's life - Elmo! I have to hide the DVD's because he'll find them first thing in the morning and ask to watch one. Here he is waiting for his buddy to show up on TV:


He'll watch sitting in his car wearing his sunglasses....


Or eating his snack on the couch after naptime...

I'm only letting him watch once a day (or maybe twice if it's rainy and I'm going crazy!) so he doesn't turn into a little TV zombie yet.

New Furry Friend and New Dance Moves!

Ben had a busy week...it's tough wearing all your bling and taking so many calls at the same time!


He had to go through Daddy's wallet and make sure nothing (or everything) was out of place. Notice how he was smart enough to bring along his snack and drink because these things can take a while!


Ben also had to make sure no one got to nap on his watch.


And the most exciting thing was that he made a new friend! Someone apparently has a pet bunny that roams around early in the morning and Ben was very happy to get to know it.





He is still a dancing maniac. And he still has a very distinct taste in music...not what I'd necessarily pick for my toddler (and definitely not what he'll be listening to once he can understand any lyrics) but kids' music just doesn't have the right beat. If he doesn't like a song he'll sign "more" to me to skip to the next one. He didn't hold back any moves today!


Here's a look at the 23-week belly! Growing right along...

Jump!

Ben's latest physical feat - trying to jump! He watched all the older kids do it in his playclass last week and he's trying very hard to do it himself, but so far all he's managed to do is a head bob and a really big step. We're working on it...