Home of the Four Trans

Two years ago, Justin made his grand entrance into the world with a giant wail. I’ll never forget the way he immediately became calm when he saw and heard his Mommy for the first time. He was screaming with his nauseated newborn voice while getting measured, weighed, blessed, etc. But, the moment he sensed his Mommy’s body and voice, his wailing stopped. He comfortably settled into my arms, quiet and content. By that time, everyone but my sister, mom, mother-in-law, and Loi were allowed in the room. Everyone else was outside, and was questioning why Justin had suddenly stopped crying. It was because of me.

A few minutes later, we were separated for six hours (the number of hours it took for the stupid epideral to wear off. The epideral that was administered when my baby was already down, and ready to go. The epideral I was pushed to get. Ugh.) before seeing each other again. I remember watching the clock wondering how my baby was doing. I remember my sister bringing me a picture she had taken of Justin as he was pushed down the corridor to  NICU at the Children’s Hospital next door, with his eyes wide open, curious of the world around him. I remember the sadness I felt, even days later, for not yet having seen my child’s eyes opened. The next time I saw my newborn baby, he was surrounded by a respiratory therapist and nurses because he was under respiratory distress as a side effect of the medication that was given to him. At that time, the first time I had to spend with my new baby, he was intubated and connected to tubes, wires, and machines; his eyes were still closed. I remember the tears I shed for the pain my child suffered. I remember singing to him, “You are my sunshine.” I pecked him on the forehead. I rubbed his tiny fingers between mine. All the while, he continued to sleep, comforted by his mother’s warmth, I’m sure.

A few hours after our time together, he was prepared for transfer to Children’s Hospital in LA where his surgery would take place. I remember how he cried in his sleep while the transfer team prepared him for the helicopter ride. He squeezed my finger with his whole golf ball of a hand.

I remained at home in Orange County resting, healing, and pumping while Loi bonded with Justin.

I came up four days later, the day before his first open heart surgery. I held my baby, with his eyes still closed…and, didn’t want to let go. But, I had to. As I looked through the images of the pain my child suffered following his arrival into the world (pictures that are difficult for me to see, and I’m sure will be even more so for you), a feeling of heaviness fell upon me, as it did back then; no child should have such a cruel and cold reception into the world; no child should be away from his mother’s cradling arms for so long.

I did not see his eyes until days after his heart surgery.

Now, two years later, he’s by my side, like a joey to a kangaroo, and I take not one moment for granted. His wails have been replaced by urgent calls of  “Mama! Mama! Mama!” And, those eyes, the ones I had achingly longed to see?  I knew there was something special about them. His neurologist once said, “The eyes are the window to the soul,” and somehow, Justin’s spoke to her. An aunt once commented on how his eyes look straight to your heart. When we go out, he draws people to him with his bright eyes while batting his lashes. Yes, they are special, almost as special as the person who sees with it.

So, how do we celebrate such a life that has touched us so deeply? How do I create a day to express to him how very special he is to us. Because of our (my) fear of what the future holds, I tend to cram the days of our lives with mini celebrations by way of outings and adventures. I pack the days with wrapping my arms around him and kissing him and telling him how special and cute and wonderful and amazing and lovable he is. I cook for him. I let him be, explore, smile, dance, laugh, watch tv, eat ice cream, scoot around with just a diaper and shirt on–because to live life is to celebrate it, right?

Well, on his birthday, I gave to him the only way I knew how–through the labor of my love. I spent 4 hours total on his double layer, 9″, marshmallow fondant chocolate cake (it was my first time ever baking something so fancy hence the hours of labor). I beat, mixed, kneaded, rolled, cut. I spent another hour printing, cutting, gluing, and stringing his personalized birthday sign together. I filled balloons with helium. Whether or not he understood the significance of his day, I wanted him to see the festivities that surround it. Loi helped make his birthday hat, wrapped his present, and most importantly kept the kids away on a special trip to McDonalds for breakfast (so they could play on the playground, also), and a couple of trips around the block so that I could create the “surprise” for Justin. Nathan helped decorate the birthday table with his cars, and was so proud of accomplishing his “mission”.

Although he did not say it, I know Justin understood everything was for him. He was so happy to see his “pat, pat” ( his words for “Little Einstein”) cake, and squealed in delight. While we sang “Happy Birthday” to him, he clapped. At the end of the song, he knew he needed to blow out his candle, and he was successful (after several attempts)!

Opening his one and only present was a hit.

We spent the day at Jumpin’ and Jammin’, an indoor playground facility. Justin spent most of his time in the toddler area, scooting around, watching other kids, and trying to interact with them. He also spent some time with Nathan collecting balls and loading up the shooters.

Loi and I just wanted to spend time with him as a family, with all of us together. As simple as that sounds, being together is a treasure we cherish deeply because our past experiences have proven that we may not always have this luxury.

We ended the day with a birthday bath, and of Justin trying to show us how old he is, now!

I hope my little one knows how much he means to us. Happy Birthday, My Love!

P.S.

Justin was torturing his brother for some of the day, hitting him with cars, and taking apart his LEGOS. I had to put him in a corner at one point. It was his day, but I had to do it. Learning the concept of discipline is a part of living life, yeah?

Thanks for checking in on our little man and allowing him into your lives.

Since we’ve had Justin, we’ve learned to enjoy the simpler things in life. Big vacations to faraway places do not play into our plans as Justin is limited to where he can go in altitude and proximity to hospitals and medical care. As residents of sunny Southern California, though, we’ve found there to be endless opportunities for exploring and excitement here in our home state.

Mall

It’s been awhile since we’ve been to South Coast Plaza. Aquariums, parks, and Legoland have taken the place of shopping, but, we had a birthday gift to shop for at the Disney Store this particular Friday, so off we went.

Warm croissants and pastries from Vie de France, carousel rides, balloons, and toy stores. Need I say more?

These balloons are $6 each! My kids didn’t ask for one, thank goodness. But, they sure are pretty to look at!

Justin was not so sure about the carousel.

After one round, he warmed up to it, and wanted to go for a second time! After the second time, he didn’t want to get off! After he got off, he kept pointing at the carousel, and grunting to insist that I take him on, again. Didn’t happen.

Nathan had fun, he really did. He just hates getting his picture taken. Don’t know why…

Justin and Nathan playing at the train table. Notice that Justin is standing and playing by himself! Yay!

Again, the brothers playing side by side. Notice how Justin is standing by himself and playing with his unaffected arm. Yay!

I don’t get why the kids are so intrigued by the escalator. I think they went up and down all 3 flights. But, it’s sure good for providing them with sensory input.

On this trip, I’ve noticed how much more independent my children have become. My once trusty companion, the double stroller, is, now, more of a cumbersome contraption. I found myself unable to keep up with Nathan as he swerved through the aisles in the toy store because the stroller was a darn wide load! Justin didn’t make it any easier as he preferred that I hold him under his arms as he walked through the aisles, following his brother. Eventually, I ditched the stroller to a side, and kept up with the kids at the train and race car track tables.

Upon entering the toy store, we met a nice father who later introduced us to his 3 year old son who has Down Syndrome and endured an open heart surgery. The father had noticed Justin’s scars when his shirt lifted a bit as he reached for a toy.

I knew he had seen more than he had bargained for when he allowed a “Wow” to escape his lips. I ignored it, not knowing how else to respond. Then, about a half minute later, he said, “You know, my son had heart surgery when he was 3 months old.”

The ice broke, and it turned out that we live in the same city. He told me how well his son is doing, health wise, and is trying to catch up cognitively. They had plans to travel to Japan the next day. After having his son, he and his wife had a pair of healthy twins.

I thought, “Wow, life does go on.” It does. We breathe, laugh, smile, explore, contemplate, move on, LIVE, every day.

He said goodbye and good luck, and I was so grateful. This really set the tone for the remainder of our weekend.

Beach

Can you believe that we live 25 minutes from the coast, but have not traveled to the beach for 2 years? Part of the reason is my phobia of the sun and the damage it could incur on our skin and health. The other part is because Justin is on certain medications that make him more sensitive to sunlight (i.e. sunburn). However, we lathered ourselves with sun block, topped our heads with brimmed hats, and headed out to the sea-side.

The kids kicked their feet in the water, Nathan chased waves, we dug our feet in the sand. In between, we lounged on our Lightening McQueen beach towels and munched on BBQ Lays Potato Chips and Rold Gold’s Pretzels.

It was only 2.5 hours that we spent on that beach, but I know it left such a positive impression on Nathan that he asked to do it, again, the next day. Maybe next week…

Justin looking out into the ocean.

Nathan preparing to scoop up some wet sand.

Can you find My Boys?

We sure are a colorful bunch

That evening, we attended a birthday party at Chuck E Cheese’s.

The remainder of the week was family time, and graduation parties.

Upcoming Events

This month, we’re looking forward to cherry picking on some local Cherry Orchards, movie in the park, and family clay time (Mommy and Nathan only). Maybe, a trip to the Discovery Center to learn about robots, if Nathan is up to it.

This week, Justin has neurology and opthamology appointments for routine check ups.

Thanks for checking up on us. I hope you all have a wonderful week.

My siblings, Dad, Loi and I decorated my parent’s backyard with flowers and hanging umbrellas for a Mother’s Day brunch.

Loi made a lox and cream cheese pizza appetizer.

The main dish: Eggs Benedict. Mmmmmm

A refreshing fruit platter as one of the desserts.

My boys with their Grandma.

The boys with their Mama (this was the best picture I could get with both of them next to me).

My younger sister, Yvonne, my Mom, Nathan, and me.

Justin being Justin.

Loi tasting his sauce for the eggs.

Justin is a little ham. He knows how to pose for the camera, now.

We visited my Grandma who helped raise me. She has so many grand and great-grandkids, I’ve lost count; But, she remembers and loves all of them. She is the definition of Super Mom/Grandma/Great-Grandma.

My family gathered back at my place after we came home from Sunday mass for another Mother’s Day meal (my mom ordered Vietnamese food). From L to R:  Chris, Dad, Nathan, Loi, Justin, Me, Mom, Yvonne, Diane.

Although Mother’s Day 2009 was quite a busy day, I would not have wanted any other way.

On Monday, we had Mother’s Day dinner with Loi’s family. Unfortunately, I was not able to get any pictures, and Justin was sick, so he didn’t attend.

Sorry this is so late, but I wanted to wish all of you Mamas and Mamas-to-Be a Happy Mother’s Day everyday!

Happy Belated Chinese New Year (February 2009)

I don’t know where Justin gained his appetite from, but I’m not complaining! He’s putting everything he can get his tiny little hands on into his mouth.

He’s gained a full pound and five ounces in a month and a half. This is awesome considering he’s gained only 5 oz over 3 months not too long ago. I’m proud to say that my roll of chubs is now a full 18 pounds (per pediatrician at a recent check up).

Here is Justin’s feeding progress at a glance:

The last picture on the bottom is actually of him eating a spring roll. His eyes lit up as I sat down next to him with a plate full of freshly made rolls, and he immediately allowed the watermelon to fall from his hands to reach for one. The little nibbler got nothing more than bits of lettuce and rice paper in his mouth, but loved the experience nonetheless.

“The highchair is for playing, Mama.”

We went to see GI on Monday regarding Justin’s eating troubles.

Based on my account of his eating behavior, this is the GI doc’s assessment:

• he may have had a viral infection that made his tummy uncomfortable (hence the occasional throw up)
• he’s teething
• he’s now one years old, so he is beginning to develop his own preferences for different flavors
• he may still have a bit of acid reflux that will not go away completely until he starts walking
• he does not appear dehydrated or malnourished

What the GI recommends:

• try tylenol to see if this will alleviate any teething pains. If this does not work,
• put him on zantac again for the acid reflux
• put him on an appetite stimulant to get him to eat more (to gain weight in preparation for the next surgery in a year or so).
• come back to see her when Justin is 15 months old.

How Justin’s looking:

• cute
• smiley
• happy
• slowly gaining some of his weight back

How we’re handling the situation:

• feed him yogurt (his favorite food) three times a day
• bottle feed him milk every other hour (at 2 oz per feeding)
• expose him to new flavors. Today, we allowed him to try penne pasta cooked in a chicken broth (then pureed).

We know right away when he’ll eat something. I’ll encourage him to “try it” as I place the spoon in front of his face while he shakes his head from side to side. If he refuses to stop shaking his head, then I’ll place a small dab of food on his lip for him to lick. If he likes it, he’ll open his mouth in a big O for more. If he does not like it, he’ll continue shaking his head. A little bratty, no?
In related news, Justin knows how to bite a cookie, now. Before, he’d just suck on it. I was so excited to see a whole chunk of the Gerber Animal Graham Cracker gone when I pulled the cookie out of his mouth. A moment later, I was a little anxious about whether he’d choke on it. But, then remembered that it melts. And, Justin was pretty good at just sucking on it until it melted. Such a good boy!

We’re continuing to check his weight everyday with our digital scale to make sure he doesn’t lose it. We’ll be seeing his pediatrician on the 16th for an official in office weight check.

We appreciate all the prayers! Thank you!

I’m done with being left in the dark about Justin’s condition.

To my disappointment, I have learned that I cannot depend on the doctors to tell me what to do with this heterotaxy child of mine. I mean, he has A LOT of issues in addition to his heart defects. Recall, Justin has:

• malrotated intestines
• left-sided stomach
• mid-line liver
• a hanging pancreas
• a portal vein that crosses over his duodenum

The malrotated intestines and left sided stomach were confirmed by an x-ray. But, it was not until his pediatric surgeon, Dr. James Stein, went in to perform the LADDS procedure (for his malrotated intestines) did he find the other anatomical problems.

Since then, I’ve always wondered what other issues Justin might have that I do not know about. I wonder, what type of tests can be done to see if he has any hormonal or metabolic issues. I wonder if he has any other anatomical abnormalities relating to his lungs, kidneys, and reproductive organs.

No one has addressed these issues while the doctors seem to focus only on his heart. While I understand that his heart defects require the most urgent care in order for him to live, I also question if the rest of his body’s abnormalities affect his heart as well. I wonder, if we address the other issues, would he have a better chance of living, and would the doctors gain better insight about his heart and its function.

I joined an online support group to learn a little more from other parents who have experiences with children with heterotaxy. Through their experiences, I learn what questions to ask my doctors, which doctors to see, and if Justin’s feeding issues are “normal,” and how I should address these problems.

With the online support group, I suddenly don’t feel so alone in the issues that I have to deal with Justin. I gain a little a bit of hope through their insight.

At the same time, I am opening a door to more heartache as I expose myself to stories about those who do not make it. However, being a part of this support group is like being a part of a group of friends. This symbiotic relationship allows us to lean when we’re weak and provide a shoulder when we’re strong.

It’s 3 o’ clock in the afternoon, and I’m just taking my first bite of food all day. It’s Jack in the Box egg rolls, fries, and a chicken fajita pita. Not exactly healthy gourmet, but I’m too hungry to even care.

Justin’s eating issues (yes, they’re back) are wearing me out.

Justin hasn’t been eating for the past week, and it’s gotten worse. Today, he’s nibbled down a total of 5 oz of formula, and I had to practically force feed him half a bowl of cereal. He’s lost half a pound in the past 3 days, according to my digital scale. Every time I bring a bottle to his mouth, he’d shake his head from side to side, keeping his mouth tightly shut.

I spent the past three days trying to make an appointment with GI for him. The earliest at CHOC was in October. After speaking to the nurse, though, they scheduled him in for next Thursday. His failure to thrive is concerning to them. I called Children’s Hospital of Los Angeles. I wanted their doctor’s opinion, also. They called me back today, and scheduled me for an appointment two weeks out.

Just by looking at him, you wouldn’t suspect anything is wrong. He smiles, laughs, does his physical and occupational therapy exercises, rolls around, and overall is just content. I’m sure the reps on the phone and the doctors think I’m crazy, that I’m just looking for trouble.

Truth is, the reason why I’m not freaking out as much is because he’s so content. But, the fact that he’s not eating, and is now losing weight has me very concerned. I’ve learned that when things get bad, they do so very quickly. So, I’m anxious to get him to a doctor to get some tests run to see what’s going on in his little body.

Please pray that he’ll be able to sustain until his appointment with GI next Thursday (that’s a whole week away!), and also that whatever is causing his ailment may be found and fixed.

Thank you!