Home of the Four Trans

According to the American Heart Association, congenital heart disease affects 8 in 1000 babies born in the United States. There are currently about 35,000 American babies and 1,000,000 adults living with CHD.

Congenital heart defects are the most common birth defect and are the number one cause of death from birth defects during the first year of life. Nearly twice as many children die from congenital heart disease in the United States each year as die from all forms of childhood cancers combined. Over 91,000 life years are lost each year in the US due to congenital heart disease. Charges for care exceed 2.2 billion dollars, for inpatient surgery alone.

As serious as this condition is, I never once flipped a page of a parenting magazine, or the “What to Expect When You’re Expecting” book that even shed light on this issue. Family members, friends, doctors, and the media portrayed pregnancy and childbirth as a relatively natural, flawless aspect of life. When I presented any of my concerns to my OB/GYN, or anyone for that matter, they tell me to not worry so much, that I’m a young, healthy individual with little or no risk. People have babies all the time. Even after the initial ultrasound showed abnormality to the heart, my OB/GYN was convinced that it was not a “life or death situation”, and that a meeting with a perinatologist and pediatric cardiologist could wait.

The reality of imperfect babies did not surface until I opened up about Justin’s condition. I was surprised to encounter work colleagues and clients who at least knew someone who had a child who had undergone the palliative heart surgeries and were thriving. How prominently CHD affects our children was again brought to my attention while at the park with Nathan yesterday.

A seemingly normal family of a mother, 3.5 year old son, and 3 month old fraternal twins approached us while we were scooping sand into buckets (Nathan: “I make soup, Mommy”). The only thing I could think of was, “Wow, how does she manage? Pretty amazing.” Turns out, she is an adoptive mother of all the children, and had decided to adopt the 3.5 year old boy despite learning of his heart defect. He’s been through all three surgeries, and with major roadblocks from feeding difficulties to hallucinating. Although small for his age (he’s about the same size as Nathan, who is only 2 years), his pediatrician considers him “gifted” as he was able to speak at the tender age of one. He’s full of energy and rarely naps.

For the past 15 minutes, I had been playing a few rounds of baseball and catch with this boy, watching him run from his monster trucks to Nathan’s sand buckets and shovels, jumping off slides, and digging through the sand. His mother even scolded him for unintentionally flipping sand into Nathan’s face. Not once did I even wonder if there was anything physically wrong with this kid.The truth was only revealed after I had began to answer her question of whether there were transition issues for Nathan with the second child. The answer would not be complete with me indicating that Loi and I were in the hospital for a month with Justin before bringing him home. Questions overflowed from that point on.”It’s difficult,” she tells me, “but, it gets easier. Then, you soon forget that he even has a heart condition.”Everything that she and her son had been through seemed to be hidden in the back of her head as it took time for her to recall the events that had taken place after the first and second surgeries. “Everything becomes routine.” Giving medicine is like putting on clothes everyday.

Only days earlier, I had discussed with the cardiologist of how it seemed like yesterday that I had brought Justin home–we’ve had him for only a short while–and soon, he’ll be going back into the OR. “The first year is like a whirlwind,” he reminded me, with all the doctor’s visits, surgeries, and adjusting. But, after the second surgery, he assured me that we’ll have a bit of a break before his third. Then, the days won’t be so eventful from there. Looking at this woman and her children gave me hope that his words may be true.

These past few weeks have been full of “whys” and what did I do wrong. Yesterday, my vision of “some things are meant to be” was renewed. This woman accepted the challenge because she felt that she was chosen to care for this child for a reason. Even if she had adopted a healthy child, unforeseen circumstances could still take that child away from her.

It is what it is. I’ve accepted that. But, CHD still is devastating to many lives. Again, it is the number one of death from birth defects during the first year of life. Three of the six families that we met at CHLA brought their children home without even a clue until weeks and months later, when the heart had already started to weaken, and were rushed to the hospital for an emergency intervention. Awareness of this issue must be made so that new parents know of the symptoms and signs to get their children treated ASAP. So, what can we do? Spread the word by donating to charities such as www.americanheart.org, www.littlehearts.org, www.caheartconnection.org that will raise public awareness of the issue, and bring families of children with CHD together.

The current state of our house–three laundry baskets full of folded clothes, yet to be stored away, two hampers full of dirty laundry, Nathan’s balls strewn about, unwashed milk bottles by the sink, a half eaten bag of potato chips, stacks of unopened mail–is a metaphor for our life. A mess.

I look at the mess that is my house that is my life. I remind myself:

My children and I have clothes to wear despite the endless piles of laundry.

I have food to eat as unhealthy as it may be.

I have my Nathan here to scatter his toys about.

I have my Justin here to feed from these bottles I must clean.

I have a milk supply and my health to care and clean for my children.

I have the financial security to pay for our bills.

I have my husband here to be upset at for not cleaning and contributing to the mess (hehe).

Everyday is thanksgiving day in our household–minus the turkey, roast beef, ham, and potatoes galore– with Nathan and Justin gracing our lives with theirs. We truly do not know what tomorrow will bring–ever. Just as Nathan overcame one fever and stomach bug a week ago, he caught another this week, now, with a runny nose and croupy cough. Then, there’s always his wheezing, eczema, and food allergies. Justin–well, his lips are turning bluer indicating the need for his second surgery soon. And, with that, are greater uncertainties. We are constantly aware of the frailty of their lives, and regardless of how overwhelming the circumstances with them or with work, family, or household condition may be, we pull ourselves through each moment of the day knowing that we still have that day. To live. For Us. For Them. As I stick a syringe full of medicine down Justin’s throat, I am thankful that he has only 4 medications to live by, and for the medications to help him live. The cries that irritatingly wake me from my two hour naps (no more slumbers for me) remind me that there is still breaths of air in those little bodies. The drama at work (for Loi) is consumed by the fact that he has a means to support his family. As small as our house may be, we do have a roof over our heads (and next to the beach, nonetheless!). Life was never guaranteed to be easy. We both knew that. We grew up having to work a little harder than the next person to achieve our goals–obtaining that “A” grade in a class, gaining respect in the office and within our own families. But, given our opportunities, coming from affluent families and are educated, life was never too much to bear. Even as we hit this major milestone with the birth of Justin, we’re able to handle each battle as it comes–in bits and pieces, and with the support of our families and of each other. No load is ever too much when broken into parts. So, I looked around my living room, with the clothes, toys, drinks, and food, I listened to the little grunts and snores coming from my men, big and small, and decided to use this time to clean. First went the folded laundry. Then, slowly, but surely, went the rest. Just when I’m ready to throw in the towel and go on my “why” tirades, I remind myself of each little blessing. These few weeks have been challenging–to my faith, spirit, body. Many times, I’ve asked myself why. And, more determined than ever, I really wanted to know why, and was trying every way to explain. But, reality is, no person knows…only He knows. As humans, we can only speculate, relying on science and sometimes feng shui to give us those answers as to why some have the fate they do. With each discovery or speculation is human error. Human error. And, with each error is greater discovery and gain of knowledge. Frustrated and resentful I may be from day to day, but my intuition tells me this “error” was meant to be. It’s strange to say, but I somehow always knew that my children would be something else, something extraordinary. And, the minor trials along the way have led me up to this point, allowing me to grasp the situation as I have. With this error, I’ve gained greater awareness of the downtrodden and greater acknowledgment of my blessings. I’ll still have those days–wondering why–because that is just a part of human nature–to wonder. But, for now, I’m surrendering all to Him. As blind sighted and naive as this may sound, I’m letting go and allowing my faith to lead the way. I’m allowing all things to be as it should.

Being one of the first to marry in our social circle, we were often asked, “So, how does it feel to be married?” Surprisingly, the idea of legally and religiously binding our relationship did not change the dynamics of it all after doing so. My answer was always, “The same.” And, even now, with Nathan, and especially with Justin, I still feel the “same” about our relationship–that somehow we fit together so perfectly. For three weeks, couped in our 800 square foot guesthouse, I attempted every technique imaginable to help Justin overcome oral aversion. After two weeks of battling acid reflux and a cold, and experiencing pain as he drank, he developed an aversion to anything that touched his mouth. By the end of the week, when his feeding had dropped to half of the recommended volume required for his weight, I really had it. I mean, my sanity was on the brink of insanity. I had done everything the doctor had recommended short of changing his medication to a stronger prescription, Prevacid. Yet, I refused to give up and pass the task on to give myself a break. I’m his mother for goodness sake! “Help me, ” I prayed, “please give me strength.” Enters Loi. I am reminded that we’re a team, where one’s weakness becomes the other’s strength. He relieved me of feeding duties for 3 days as I spent time with Nathan, taking him to the park and mall, and just getting out. For 24 hours, every 2 hours, Loi woke Justin to feed (even in the wee hours of the night). Turns out, all Justin and I needed was a break from each other. Though I never showed my frustration with Justin, he somehow sensed it, and became frustrated as well. When Loi took over, Justin regained his confidence and stamina to drink more and more, though not quite as much as before. “Peaks and valleys,” my husband reminded me, “peaks and valleys.” And, so is the life with our little one.

Has anyone ever told you how you’ll never know how sweet life could be until you’ve tasted the sour?…or something like that? For me, it’s like I never knew what it is to be human until I had my kids. Anyone whose met me might relate me to a piece of stone. Always afraid to show my weakness, I never dared cry in front of anyone; my tears were wept in the privacy of my room as I licked my wounds to heal. In another’s hardship, I kept that straight face as I offered some empty advice or condolence. The advice was always empty because it lacked experience and relation. Looking back, it was like I put myself on some pedestal, thinking I always knew better–I didn’t mean to. Perhaps it was my Vietnamese upbringing that convinced me to hide myself from the rest of the world, reminding me to keep everything private, and perpetuate a facade that everything’s OK, I’m OK, and I’m strong. Perhaps I was just a naive little girl living in my head of how the world should be instead of facing it head on. Or, maybe, I was simply afraid of getting hurt–by friends, family, anybody. Now, in retrospect, it was this behavior that prevented me from creating meaningful relationships, with friends, with my doctors, with my family (not Loi because I was always able to be open with him without feeling judged…that’s why I married him). But the moment I witnessed my newborn getting intubated after having not seen him for more than 10 minutes before he was whisked away to the NICU, I lost it. In these past few months, I’ve become more and more human. Just letting go of myself a little created immense reaction. After two weeks of feeding woes with Justin, I called his pediatrician–sobbing. The stress of it all took a toll on my sanity and I let it show. After our conversation ended, I thought, “Great, he’s going to think I’m more of a crazy, psycho mom than he already does”. That Monday, I showed up to his office a little embarrassed, regretting that I even lost my composure. Surprisingly, since then, he actually spends time with me, and listens to me. This man, also Nathan’s pediatrician, never had more than a few obligatory medical advice to say in the past 2 years that I’ve known him. Now, he tries to understand my worry and address it. As a doctor, I always had great respect for him. But, when it came to relating to the parent, I always felt like he was lacking. Maybe it was me all along…I realized, to be strong does not mean having to suppress my emotions. To be strong means to show that softer, more tender side sometimes. It shows that I’m confident enough to say, yeah, I hurt sometimes, just like you. But, I’ll get back up, and so will you. 

The past two weeks have been filled with drama. I even found myself asking Him why (like, why couldn’t he just give me one, one healthy child), and believing that perhaps fortune and feng shui had something to do with our “bad luck”. Perhaps we conceived them at the wrong time, month, year, at an inauspicious residence, or perhaps Loi and I were the unlucky pair, with our astrological signs not matching. Justin had come down with some sort of cold around Halloween when we had tried so hard to protect him with the constant handwashing and antibacterial sanitizer lathering. Visitors were only allowed to see him through a window, or not at all. I mean, I was pretty extreme. But, when he started rejecting (yes, rejecting. He cried the moment the nipple even touched his lips) the bottle, I started to really freak out. Every hospital discharge instruction we ever received indicated that when feeding became an issue, we must assume that either it is congestive heart failure or abdominal obstruction. I rushed him to the pediatrician–twice. The first time he was diagnosed with acid reflux and his Zantac medication was increased. A week later, still not improving, the doctor attributed it to a cold. Now, only time and patience will tell. Within the same week, Nathan contracted a finger infection that I accidentally popped oozing, foul smelling green pus from. While I desperately tried to feed a fussy baby (every hour now), Nathan sat on the floor scratching with his half gone fingernail, with me begging him to stop so that he would not cause an infection in his skin. I have a child with a heart condition, and a child with eczema. We naively thought we’d get a break the second time around after a hopeless two year battle with the autoimmune disease. Anger and frustration boiled in the pit of my stomach…I wanted a reason, an explanation for me having these “sick” children. Feng shui seemed like a readily accessible explanation that I wanted so desperately to believe…I just wanted something to definitively say, “Yeah, it’s your fault. This is what you did wrong.” But, does it even matter? As I observed couples unable to conceive, marriages falling apart, people diagnosed with cancer, I realized that I have the opportunity to hug, kiss, hold my children, a husband that loves and adores me, and my health to care for my family. I have more than most and I feel blessed for it. The fact that my children are not “perfect” and healthy only gave me reason to be stronger–for them, for me. I refuse to blame this “misfortune” on luck, because truly, it is a blatant blessing. My babies have made me open my eyes to the sacredness of life. They have made Loi and me love more, give more, aware more. It just hit me one day of how I would display my compassion to the ones in need (as an example to my children): I would consciously perform one selfless deed a day for those in need. So far, I donated $200 to a poor convent in Vietnam that exists to help the poor and the orphaned, bought a RED shirt from the Gap to support the fight against AIDS in Africa, donated to a charity set up to help pregnant teenagers keep their babies (Pro-Life) while going to school and work, and lent out a hand to a friend recovering from heartbreak. These are small gestures, I know. But, it is all I can afford to do at this point between the two little monsters. Someone once told me that the smallest deed is greater than the greatest intentions. There have been many causes and community services that I have always said I’d become involved with. But, until I’m released from this lockdown (kidding! sort of…), I will do what I can when I can. Justin taught me–live life like there’s no tomorrow! 

I deliberately told Loi about how my aunt had received a white BMW 3-series after giving birth to her first, and a brand new house following her second born. I didn’t expect such extravagant gifts, I reiterated to my husband, but I did expect something after 9 months of carrying our child. I had to endure leg cramps, fatigue, shortness of breath, abstinence from my favorite foods (ie; sushi, mayonnaise, frozen yogurt, to name a few), and irreparable changes to my body. Much to my disappointment, I did not receive that long anticipated necklace or ring I so felt I deserved after giving birth to Nathan. Loi apologized, of course, attributing the delay to his busy schedule at work and other projects. With the hustle and bustle associated with adjusting to parenthood, I quickly forgot and didn’t mind so much realizing that nothing could beat holding my son and looking into his bright brown eyes. Loi did end up making up for the lack of that present with many others for our 4 year anniversary, Christmas, Valentine’s, and my birthday. At that point, I had developed an obsession for fancy watches and diamond hooped earrings, which Loi had accommodated very well to. Since then, he’s asked me, “How come you don’t wear your (watches, earrings) that I bought you anymore?”

When I became pregnant with Justin, I shared with him a story I read of how a woman’s husband saved up money the entire time she was pregnant so that after she gave birth she’d have a stash to spend on a new wardrobe. The idea was ridiculous to Loi as he thought that the money is ours anyway, so I could spend it in whichever way I wanted; he didn’t need to save for me. But, I explained to him that while I had the freedom to use the money we had, I would hesitate to spend it on myself knowing that it could be spent for something else. I reasoned that if I had my own stash, I wouldn’t feel so guilty using it knowing that it was set aside just for that purpose–me. Well, Loi got me something more practical for having Justin, a MacBook Pro, which has come into great use. But, after hearing me complain about how I have nothing to wear because I was much too big for my pre-pregnancy clothes, and too small for my pregnancy clothes, he urged me to go shopping with a $2000 budget. Wow, two grand. “Too much” I said. I ended up spending about $400 on an indulgent pair of jeans that I desperately needed to tone and shape where needed be, a black cropped trench coat, a fall staple, and some tops. With the remainder, I plan to donate $500 to a heart association and $500 to CHLA. I still need some new face and eye creams for the wrinkles coming along my way with the constant worries these two little boys have caused me, so a portion will be spent on that.

The true reward, as cliche as this may sound, is having my babies and everything that came and comes along with it. To feel empowered with the ability to bring another being into this world is just amazing. Nothing beats going through the hours of labor pain and finally pushing with all my might to see the little creature(s) that I’ve nourished and nurtured through all those months. Then, comes the real work of actually raising them into decent, smart, confident, and inspiring human beings. Knowing that my words and actions will affect the way they think and feel about themselves and the world is quite nerve wrecking and pressure building. But, it’s also gratifying to know that I can have such a great impact on another human being, and to know that they’ll take what they’ve learned from me to spread to the world. They are my legacy.

I visited my old workplaces over the weekend with the four of us (Justin’s second outing, more on that later). Loi asked if I missed it–planning weddings, having adult interaction, utilizing my creative energy–despite all the craziness that came along with it. Simply put, no. I look around at the life that once was for me, a place that I spent 6 days a week, 10, sometimes 11, 12, 13 hours a day at, the paper trails, file cabinets, the phones ringing, the white gowns hanging, the customer consulting, the flower arranging, the deadlines; a place where I had a chance to build my self worth with the more weddings I booked, create a sense of accomplishment with each event I successfully completed, a place where I had a title of “Wedding Consultant”, a place where I was somebody. Now, I’m just a mom. Not as interesting of a title, but the job description is so much more substantial. At times, I feel guilty when someone asks me if I’ve gone back to work yet, and I tell them probably not for another year or two, or ever, and that I’m planning to work from home. I feel like they think I’m lazy and that the only way I can contribute to society is byway of entering the workforce. But, the truth is, no matter how rough work got, it never compared to how difficult the days in and days out of motherhood entails. At work, I could steal a moment of breath once in awhile. But, at home, I’m on my kid’s schedule. While Justin is asleep, Nathan may be awake to play. When they’re both asleep, I’m pumping, cleaning, thinking of what to feed Nathan when he wakes up. When they’re both awake, I try to manage to feed Justin while Nathan whines for me to play with him. When I play with one, I feel guilty of neglecting the other. My brain is constantly thinking up of new ways to stimulate them. Then, there are the health issues that I always have to be mindful of, with Nathan with his eczema and Justin with his heart. Sometimes I’m feeding Justin, and Nathan starts scratching, digging his fingers deep into his skin. What do I do then? It’s nonstop with these kids. At the end of the day, though, I look at the two little monsters and know that this thankless job of mine is worth it. I’m putting my energy out of love, and not having to sell myself and my beliefs out for monetary gain. This is what I’ve always wanted, to be able to live up to my convictions, and be able to spend time with and help mold my children.

I’ve never been more inspired, thankful, elated, or defined as I am now. I am what I’ve always wanted to to be–a mom.

Who did you always wanted to be? And, was it all that you expected it to be?