2011 March For Babies

Happy Easter everyone!!!

This past Easter weekend was a big one. It's one of the two busiest weekends at Scott's workplace so we had big services Friday night and Sunday morning. And Saturday morning, we walked as a family in the 2011 March for Babies Walk held by the March of Dimes Organization.

The night before we were so tired but I was real bummed that we hadn't made T-shirts in preparation for the walk. Scott said it was no big deal but I just knew I would regret not having at least something for Slugger. I searched our bookshelves and managed to find an old package of print it yourself Iron-on transfer paper. So, I stayed up super late and designed a little onesie for Slugger to wear during the walk. I think it turned out awesome and was worth getting just 4 hours sleep.

The walk started at Kapiolani Park so we parked at the Honolulu Zoo parking lot and walked over. Man, the pay rate for parking sure has jumped up a lot. It was incredible to see how many people were at this event. There were families unloading their vans all in matching T-shirts, kids of all ages rolling in their strollers. I have to admit, I choked up when I read parents wearing T-shirts with a preemie picture and name on it and holding the hands of strong, healthy grown kids. Amazing to see that these kids running around started off so small and sick.

Slugger had her own proud statement on the back of her onesie. [click on it to see large version with list of our wonderful sponsors]

Slugger chilling in her carseat on the way to Kapiolani Park. She didn't seem to notice that we woke her up 3 hours earlier than usual. She doesn't wear a watch so she just has to take our word for it.

Uncle John carrying Slugger as we unload in the zoo parking lot.

Here's a close-up of Slugger's onesie design with her birth statistics and a list thanking all the people who donated to her walk.

This is her first ride in a jogging stroller. We borrowed this one from Liz and Mikey. Wow, these things run so smoothly compared to a regular stroller. Yowzahs!

Here's a close-up view of the front of her onesie design. We meant to focus on the celebration of Slugger so we didn't get too sad, but we just couldn't do it without remembering our twinnies.

As we walked into Kapiolani Park, they were having a huge warm-up exercise class led by Gilad. Oh, I love him. Scott and I were in a phase where we were taping his Bodies In Motion show and exercising to it. He looks really good in person. Hubba hubba.

Crissy and Todd watched Slugger so I could run up closer to get pictures of Gilad.

Then we headed to the Kaiser tent and Slugger got to hang with one of her favorite NICU aunties, Gina. Look at Slugger beaming at Gina.

This little girl is sunblocked up. She has a UV protection hat. And that's an umbrella I brought along that I held over her whenever we didn't have shade.

We got so comfortable checking in to the Kaiser tent, Scott even made himself a plate of food and began chowing down, that we missed the start of the walk. There was a huge crowd by the start line when we looked so we didn't even budge, but it turns out that the crowd was the kiddie crowd that would walk a truncated route around the park. Um, the other members of Team Slugger thought the truncated route sounded ideal, especially John-John who couldn't find sneakers so was wearing slippers. But, unfortunately, they're with me. I felt like we told people we were doing a 5 mile walk, so we should be doing a 5 mile walk. I love our friends. So, we set off on the full 5 mile route which starts at Kapiolani Park and turns around once you hit Ala Moana Beach Park.

Since we started so late after everyone else, I seriously think we were the last ones in the whole walk. Amazingly, we ran into Davidson and Candace who go to our church and were walking with their two fraternal twin boys, G and G. So Team Slugger and Team GG united. The first half of the walk was great. The rising sun was low enough that we were continuously in the shade from the buildings. However, on the way back, it was blazing hot and the sun was beating down on us. We also ran into Hope Chapel's Women's Ministry Pastor Tami T. and her husband Mike in the walk. Tami told us that they were walking for Slugger too!!! So sweet!

Here's Team Slugger and Team GG finishing up the last half of the walk. Notice the hidden babies as we were constructing all sorts of tents to protect them from the sun.

But we finished!!!

Longs Drug was a huge sponsor of the event and there was all sorts of swag that we could stuff into our goodie bags at the end. I was real excited about my chocolate pudding cup. Yum!!

We collapsed under the Kaiser tent and rested our sore feet. And tried to take a team picture before we left.

I brought my camera and I set up the shot. Got the focus, the exposure in Manual mode all down. Here's my test shot. Crissy and Todd are such goofs=)

Then I asked a lady nearby if she could take our picture. My dSLR looks intimidating but I had it all configured from my test shot so I told her she just had to stand where I pointed, point the camera at us, and click the button.

I do not want to make fun of her. But, it just goes to show you how cameras have changed so much that they have changed the common experience. I huddled into the team slugger group and the lady held the camera up and then said "wait, where's the picture?" She was looking for a live-view picture on the LCD screen that we've all become accustomed to because of digital point and shoots. I don't have live view on my rebel so I told her "you're going to have to look through the viewfinder." She still didn't seem to understand but she started clicking away. And this is what she got.

Oh, this made me laugh when I scrolled through. She took about 10 tries and thankfully, the very last one came out. I think it's so funny that people don't know about or how to use the viewfinder anymore. We've been spoiled by these fancy cameras and camera phones.

[From left to right]Scott, me, John-John "rubbah slippahs brah," Todd, and Crissy "listened to a sports game on her earphones the whole walk and ignored us=)"

PS. We were blessed to find that we all got Kaiser shirts since we were signed up under the Kaiser Team. But I opted to wear the shirt that I was already wearing. Look, I just happened to choose the right color that morning. I fit right in.

[Click on picture below to see how much money we raised. + a pic of Slugger in her cute Easter dress]

Slugger's Visit to the Cardiologist

Slugger and Astro had echos of their heart done the day they were born and everything looked A-okay. But right before Slugger's discharge from the NICU, they detected a heart murmur which led them to discover she had a small hole in the septum (wall) between her left and right atrium chambers. ASD, atrial septum defect. We were told to watch her and they would check close to her first year. Dr. S. told us that it was very likely the hole would close on it's own. So, we've been waiting and waiting and we finally got to take her in for her follow-up with the cardiologist. This is Slugger pre-appointment. She's calming herself with a few good chomps on the thumb. The doctor listened to her chest with a stethoscope and told us it sounded good. Stethoscope? That's it? We've been waiting for months, where's that ultrasound machine you call an echocardiogram? Well, apparently, they can't usually do echos on such small infants because the babies won't lie still for them. They have to sedate the babies which, of course, we don't want to do. The doctor said "well, maybe we can try..." YES!!! I'll keep her still. So they took us into that dreaded room. That part wasn't fun. The room that I was in when a man in a white coat with kind eyes told me that my little girl was dying. That room that I still had to spend hours in every other week while they watched Rory grow and develop. I have every inch of the wallpaper border memorized, every bulletin posted on the wall. It was weird to return to that room. That room was also my quality time with Rory. They barely scanned Astro and Slugger. Instead, it was just 45 mintues of doing nothing but watching Rory jump around, getting elbowed in the head by some sister (usually Slugger). Slugger had to lie down for her echo so I snuggled up beside her to try to keep her still. We gave her the pacifier (which we usually save for the emergency public breakdowns) and I let her watch videos on my phone. Sadly, the only thing I had was the movie Avatar which came with the phone. I don't even like the movie. I just replayed the parts that had the forest scene with glow-in the dark plants. Surprisingly, she watched it calmly. Slugger did so good. Yes, she might have pulled on the probes a little and taken one off. Yes, she tried to take over the ultrasound wand drifting over her chest, grabbing it and pushing the tech's hand away. But after her curiousity wore off, she calmly lay there...even falling asleep for a bit. That's my girl!!! Just as the tech was finishing, Slugger woke up and firmly pushed the wand away. She knew time was up. Excuse the grainy pictures, the room is kept very dark.

The doctor came in to talk to us afterward and Scott said as he saw the doctor coming towards us "It's never a good sign when they're bringing a model of a heart with them."

Too true. Bad news: the hole is still there.

The good news: It's tiny small. There's still a chance that it may close up on it's own. Usually, if they're going to close up, they'll do so by 16-18 months of age. It is also so small that it's not affecting her. There's no enlargement of any chambers, no leakage, her lungs are clear. Even if it never closes up, as long as it doesn't get larger, we still may not ever have to address it. The doctor said she can play sports, she can go on to have children of her own.

So, we'll check again in another year and half. The doctor insisted that since she's so young that it may close up, he can't even really truly diagnose it as a heart defect yet. He clearly said repeatedly to treat her normal. I don't know what meant exactly in reference to a 9 month old baby. She's not ordinary...she's extraordinary.

Here's baby and daddy post-appt. It was a long appt.

But Slugger cheered up immediately when we stopped by the NICU and saw her aunties: Alex, Amy, Aileen, and Dina. Robin, Dr. Chiu, and Laura came outside after the picture was taken.

Read how numerous organizations have become household names for our family in this blog entry and why we are so excited to be able to give by participating in the March For Babies.

And please visit our March of Dimes pages to support us in our walk to battle birth defects, premature birth, and infant mortality.

Scott's March For Babies Pledge Site

It means something now

In spring, I received an email from our friends' little girl, Kaiulani, asking for pledges to her Jump Rope For Heart. I participated in Jump Rope For Heart when I was a kid, but I kind of missed the point of it. I was a first grader at Haili Christian School in Hilo on the Big Island. We were sent home with the forms to raise pledges...asking adults we knew to pledge so much money for every minute we would jump rope. Then one day, we all went to the gym and we took turns jumping rope. I rocked at jumping rope, I sucked at raising money. I didn't really get the whole purpose of trying to raise money. I felt so bad for all the kids in line waiting to use my jump rope that I jumped for maybe a minute and then just stopped and handed the rope to the next kid. Hey, I was six...I didn't know. Now, I'm way older. And it was so easy to give online to Kaiulani's sponsor page. A few clicks and I was sent a confirmation email. Seriously, it didn't dawn on me until afterward that the American Heart Association was raising money for families like me. I don't know. When I heard heart research, I just thought of heart disease that affected elderly people. It didn't run in my family so I didn't really have a personal connection. I never knew about the children who are born with heart defects. 1 in 100 babies are born with a congenital heart defect. This little girl, Kaiulani, is helping raise money that is educating scientists and doctors on ways to help my baby girls. By doing that, Kaiulani has given me an amazing gift.

A month later, on my usual drives through the McDonald's fast food lane, I looked down and saw that usual little box asking for money for the Ronald McDonald Home Charities. Wait, that applies to my family too. When we were faced with moving to San Diego if Rory was a candidate for heart surgery, we were told to look for a place to stay. Treatment would have taken up to a year and we thought at the time that we would have one little baby in the hospital and two at home with us. We were freaked out at the idea of having to find a place to stay so far from home. We were looking at applying to stay at the Ronald McDonald House.

I only knew Easter Seals because of their telethons. Now I know them as a wonderful organization committed to serving those with disabilities and working to help prevent it. They send physical and speech therapists to work month with Slugger in our home free of charge.

Lastly, there's the March of Dimes. They are committed to battling birth defects, premature births, and infant mortality. Their researched helped the development of Surfactant. Slugger's premature lungs were not ready for breathing. When she exhaled and they collapsed, the walls of the lungs would stick to each other and she wouldn't have been able to inhale, expanding those air sacs. She was given surfactant which acts as a lubricant across the lungs to keep air sacs open and minimize scarring. They also have a wonderful online support group for people with sick children or who have lost children. I spent a lot of time on it while Slugger was in the NICU.

In one week, on Saturday, April 23rd, Scott, Slugger and I will be walking in the March of Dimes "March For Babies." We'll be walking 5 miles at Kapiolani Park to raise money for the March of Dimes.

My college friend, Yong, has done the March of Dimes walk annually for years now. He called me up last week and said he wants to walk for Slugger this year. For parents of preemies, it's an honor to put your child's name, gestational age at birth, and birth weight on your shirt for all to see. This year, we'll be celebrating Slugger. Sadly, there are a lot of parents who have shirts that are in honor of preemies who didn't make it (which is why this walk is so important). It's too soon for us to walk for the twins, we're not ready for that. But we can focus on the positive, and walk for Slugger. And next year, we hope to be walk for all our girls.

We still haven't hit our goals YET, but I know we will. If you would like to pledge to our walk, please visit our pages

Scott's Pledge Site

8 Months Old Twirling her hair while she waits to grow

Slugger Real Age: 8 months Adj. Age: 5 months Weight: 15 lb. 0 oz. Milestones: -favorite thing to do while eating is to twirl her hair. If she can reach, she'll use both hands the whole time. -loves LOVES loves her exersaucer (that saucer went from TJ to Eden and now to Slugger) -great hand coordination as she reaches for and moves objects -loves to cuddle -either she's giving people kisses or exploring whether cheeks and jawlines produce milk -no stranger anxiety yet, she loves attention from anybody -sometimes starting to lean when she wants to go to somebody, and turning away when she doesn't Severe nausea made pregnancy last year pretty miserable but I really did love being pregnant. Strangers would treat you just a little bit more nicely, jump up to give you a chair or carry things for you. Open doors for you. Having a baby, and a cute baby at that, opens a totally different world. People smile at you as they pass you in the grocery aisle. You start up conversations with complete strangers in restaurants who also have their babies babbling away at the table. You exchange information like baby's ages and names. Babies just make people smile. I wish it was the way we all acted regardless of circumstance. After learning to roll, Slugger has kind of stalled in development this month. I'm hoping she's just gaining strength and gearing up to work on sitting and crawling. Fingers crossed. She's also in love with her exersaucer. I thought it might be too early but she can stay in that thing forever. We have to make it a point to take her out so she can get tummy time and work on her arm strength. She's a talker and loud. Sometimes, she seems to be just singing to herself. The most awesome thing that we love in this new stage is that she's starting to cuddle. She was never a baby that would fall asleep on you. She did it as a newborn but then dropped it like a bad habit. Even if she was sleeping, if you tried to hold her against your shoulder, her head would spring up and her eyes would be wide open trying to catch the action. Now, she will sometimes put her head on your shoulder and she talks to herself. I never want to get up off the couch when she's willing to snuggle. Sigh, happy heart.

She had her first trip into the ocean. My friend Kristina came with me and we drove forever to Ko Olina Lagoons. I thought that place is always sunny and hot and should be warm enough for Slugger. But that day had high wind advisory so it was kind of cold. Slugger and I lathered up with sunscreen. Slugger was sporting a rash guard from Uncle John and wearing a UV hat. She loved the water ,although the poor thing made sour faces when she got salt water in her mouth.

The scary part was when I was rinsing her off in the shower. She got so cold and I had the hardest time warming her up. Her entire feet and hands were so blue, all the way up to her ankles and wrists. I had to screw the fear of UV radiation and place her right in the sun as I toweled her off briskly. Thanks to Leena for giving me the tip to take jug of hot water with me to bathe her in and to keep her towel warm.

Slugger also went to her one of her besties, LP, 's first birthday party. Here is Slugger right outside the jumpie castle.

Here is Slugger when she realized that no one was going to take her in the jumpee castle.

We also spent some quality time with the family, especially the grandparents. We went out to dinner with Scott's family to try to celebrate Slugger's Grandpa Pat's birthday (we're going to have a second try at a real birthday dinner). Here's Slugger with Papa (Scott's grandpa).

Here's Slugger with Uncle Stanton and Ma (Scott's grandma).

For a week, Slugger went through a phase where she would suck her lips in and I called it her "grandma" face.

Thank goodness, that phase is over.

In just 16 days, Scott, Slugger, and I will be walking in the March Of Dimes walk in support of raising money to fund research into premature babies. I'll talk more about this in an upcoming post. I would really appreciate any contributions (great or small). It's our first time doing this walk of course and we're not sure what goals we have, but we certainly want to aim big.

Go to our March of Dimes page to donate.

Prayer Requests:

-Able to hit our goal for raising pledge money for the March of Dimes walk

-Slugger has her appt with the pediatric cardiologist next Friday. We'll be able to check on her heart defect. We're praying for the best news, that the hole has closed up and her heart murmur is gone.