Home of the Four Trans

Can’t ignore the signs when it’s blinking and shining so brightly. It’s practically screaming!

Have you ever read Paolo Coelho’s, The Alchemist? The underlying theme of the book is: “When you want something, all the world conspires in helping you to achieve it.” And, you are to recognize and follow the “omens” presented to you in everyday life–this is how the world helps you to achieve your dreams.

One morning last week, I turned our plasma on a rare occasion to find an image of an enraged mother protesting Cigna Healthcare Insurance for denying her 17-year old daughter coverage for a liver transplant (this is Cigna’s side of the story), crucial for her survival. Intrigued, I continued watching to learn that they considered the young woman’s case “experimental”, and that the chances of her recovering successfully from such a procedure would be minimal. Doctors had given the young woman a 65% success rate. The mother fought for her daughter’s life, as she brought nurses and friends to Cigna’s local offices, rallying for an overturn in their decision, and raised attention in the media. Finally, Cigna agreed in this “rare and unusual case” to provide coverage for the transplant, and her daughter’s aftercare. Turns out, the decision was made too little, too late. Just a few hours after the decision overturn was made, the 17-year old passed away.

I thought, this could be Justin one day, laying in that hospital bed in a medically induced coma, awaiting a transplant. His life would depend on it. But, the insurance companies or medical professionals would say, No!, he’s not worthy of it.

That night, as Loi was putting Nathan to sleep, and Justin laid soundly in his crib, I flipped through the channels to find a special on PBS about Rich Dad’s Guide to Wealth, hosted by author, mentor, and millionaire, Robert Kiyosaki. Intrigued, I watched as he gave simplified tips on how to build our financial statements with assets. Property would be an asset if it generated income for us, whether we worked or not. Equity is not an asset if you’re making mortgage payments; this would be a liability to you, asset to the bank. Simple things like that. Understanding and applying concepts such as these, according to Kiyosaki, would allow us financial independence with accumulated wealth.
Next morning, I told Loi about the 17-year-old girl. He responded with, “See, that’s why we need to be rich!” so that we can pay for the transplant ourselves if it came down to it.I thought about it. More than ever, money had value to me. I want to have lots of it. “Not want,” Loi said, “We need it.”

My dream has always been to be the best mom. As much for women’s rights and closing the gender gap as I am, I have never strayed from my traditional views about women and motherhood. We’ve been empowered by this ability to bring another life into this world–we need to step up to it! This is one more way of becoming the ultimate caregiver and provider to my children–to generate a substantial income. Not six digits, ladies and gentlemen. No, that would not be enough in this money is power world. Millions is the goal.

I looked at Justin that night and told him, “I’m going to be rich, for YOU!” I told him to keep giving me those squinty-eyed, open-mouthed smiles to remind me why I need to keep pushing…for HIM! Should he leave me before my goal is reached, there will be a foundation opened in his name. He will live on.

The plan is to invest in some real estate during this economic downturn with hopes of future returns…among others that I will not discuss until it actually materializes. I can be silly, I know. My dreams can be far fetched. And, perhaps my reasoning doesn’t even make sense to some of you. But, the signs are there…and, I’ll take what I can get.

To you all, follow your dreams!

Twenty seven years of life (almost thirty for Loi), and never before such a wonderful Christmas. The obvious: Justin made it this far, and actually had the health to enjoy it! The not-so-obvious: Christmas had such great meaning for all of us.

Forget about the presents–the hunt for the perfect (material) gift eluded me this year. Standing in line among the mounds and mazes of toys and clothes galore, swerving Nathan in his stroller through the flocks of running children and mindless people, with wide shopping bags hanging from the handles, didn’t faze me. The three day countdown with 25 gifts left to buy? No biggie. I was buying gifts for people who had every (material) thing–just different versions of it. The perfect gift for anyone on my list simply did not exist. How true is the saying that the best things in life cannot be bought. And, it really is the thought that matters.Wow, it’s like all those life’s lessons taught to me as a child finally makes sense, now. Crystal clear.

As for me? I didn’t want any (material) thing…and, meant it.

Come Christmas morning, I had everything–my babes, my man, and us, together. Justin’s WAAAAAHHHH! cried, LIFE! Nathan’s MAAAWWWWWMEEEE screamed PURPOSE. I am a mother with my children. I am a wife with my husband. No amount of money or worldly possession could ever buy me what I have. My boys, they’ll learn. Their youth is meant to be enjoyed with presents and toys and Mommy embarrassing them. Nathan ripped open his packages from us and smirked, “It is mine!”, after realizing we had tricked him into thinking the unwrapped Bob the Builder vehicles and Cars! race track he found earlier last week were not his, so that he would not open those. After devouring 3 of his own, Nathan helped Justin open his gifts to reveal a furry, pink, half-foot Piglet, and a Leapfrog caterpillar toy. All the while, bewildered Justin just stared at his big brother as he pressed the multi-colored buttons on the caterpillars, showing him how to make music. So intrigued by his older brother already!

Fun for me meant dressing them up in matching newspaper boy outfits–caps, black booties, and all!–and, taking pictures to remind them of it. Between our two large extended families, we celebrated Christmas 4 times! The boys are definitely not without–material or not! Hope you all had a memorable Christmas/holiday!

Eight seems to be Justin’s number. He was born August 8th at 3:08PM, placed in bed #8 in the NICU, and now will have his heart catheterization on January 8, 2008. The surgery is yet to be scheduled (playing phone tag), but we are anticipating end of January to beginning of February…maybe the 28th?

After the meeting with his cardiologist on Monday, I realized that there is so much hope for the future, Justin’s future, despite the many unknowns about congenital heart disease. To gain better understanding of the leaky valve issue, I questioned the doc about what it meant to have it. Although it may never be fixed, it may be maintained with medication, diet, and other techniques if the Glenn does not bring the severity of its leakiness down a notch. The presence of the leak will compromise how well he does with the Fontan (third, and final stage of the palliative surgeries). In the long run, that leak will cause his heart to stretch, enlarge, and, with that, new problems to conquer. He will, more likely than not, need a heart transplant one day when his heart begins to give out (whether he’ll receive one is another story). I pray that the Glenn will do its part in releasing some of the pressure off that leaky valve. Will you pray for baby Justin, too?

I know, the answer is not perfect. It does not tell us all that we want to know of the future. It does not tell us how far and how well Justin’s going to make it. But, don’t be sad–for him or for us. His story is not a tragedy, nor is our story with him in it. On the contrary, this story is full of hope.

Thirty years ago, Justin may have received only compassionate care after being born, as we would have had only the option of waiting those dreadful few days or weeks before his heart would fail. Now, with the advancing medical technology and knowledge, Justin has had and will continue to have a chance to live a longer life. With further research, the quality of his life may be improved as well.

With his own life, he breathed purpose and meaning into ours. We’ve embraced Justin’s condition, and have been profoundly moved by his very existence. For us not to accept this life changing event as fuel to promote the issue, and to make a difference in the lives of all those who are or may be affected by it would make this a life’s lesson unlearned, a tragedy. Justin’s life has purpose, and we will help him live up to it. His life is an example of the endless possibilities the future holds for medicine and its technology.

We’ve got quite a journey ahead of us…I hope. Getting through the surgeries is only the beginning. How well he lives beyond those depends on the research conducted to better understand how the surgeries affect his brain development (or if brain development is of issue prior to surgeries), how to improve his feeding and ability to gain weight, and how to deal with behavioral problems. Fast forward 10, 20, 30 years, when that leaky valve gives out, further research and experimentation may find an answer to fix it. There is no exisiting “cure” for congenital heart defects. We often speak of the day when hearts may be grown using his own stem cells, then have that transplanted into his body (We banked his cord blood with Viacord). For now, we can work towards developing a better future for Justin with the heart he has, enabling him to live as “normal” and fulfilling of a life as possible.

Visit California Heart Connection to learn more about congenital heart disease, and how you can help better the lives of children and adults like Justin. Or, The Children’s Heart Foundation, to learn more about other children who have congenital heart defects, and how you can contribute to its research.

I needed a few days to recuperate from the information and emotion overload.

Justin is fine. He’s doing better. He’s gaining his dark complexion back. Feeds are improving, though not optimal. But, at least it’s enough to keep him hydrated.

Friday to Monday were full of doctor’s visits. In light of his heart condition and the possibility that he’d be in surgery sooner than we had anticipated, I made an appointment with his pediatrician to update his immunizations and Synagis (RSV) shot on Friday. The previous few nights were already horrendous with him feeding below the minimum for his weight in order to stay hydrated. Both Loi and I were at our wit’s end trying to figure out why, why, why. Come Friday night, the bad made a turn for the worse. He was clearly uncomfortable with the constant fussiness, crying, and sleeplessness. He barely ate all day. I made an emergency call to the on-call cardiologist who suggested that I put him back on Reglan to help his stomach empty quicker. His heart did not seem to be the issue, according to him, but acid reflux. Bad advice. The worse we thought it could get turned into a nightmare. No sleep. More crying. By morning, he’d eaten the equivalent of what he would normally eat in one sitting…2 ounces. We thought he needed a change of environment from our suffocating home, so quickly packed the diaper bag, pump backpack, dressed Nathan and ourselves, with Loi and I taking turns holding Justin as he screams. Just as Loi passes Justin to me to load him into the carseat, I noticed his eyes rolling to the back of his head. Freaked out, I called the pediatrician to wait for us (as he was closing) to examine the little sucker. I did NOT want to go to the hospital! We rushed the entire way there with Nathan complaining about not wanting to go to the doctor’s and negotiating with us about eating his mighty mini popsicle stick before breakfast. Justin soundly slept while sucking on his pacifier. Overwhelmed by Justin’s escalating condition and Nathan’s non stop chatter, I gave into Nathan’s wants and kept quiet, concentrating on the exotic cars passing by ours, while my mind continued to race uncontrollably. I could see it already, I thought. Us, being admitted into the hospital. Justin, with IVs hooked up to him. Breathe, I reminded myself, breathe. After a quick examination, his pediatrician determined his stiffiness, back arching, and eyes rolling to the back of his head as reaction to Reglan. His body just wasn’t taking it. The drug crossed over to his brain and caused some serious side effects. His suggestion was to take Justin off the Reglan and put him on Prevacid (to decrease the acid production in his stomach) in conjunction with Zantac (to line his stomach and esophagus to decrease the burn felt when the acid goes up his throat). When we left the office, we decided to pursue our original plan of visiting maternal Grandma’s house. The day progressed with promise of a better tomorrow with him increasing his milk intake. Color returned to his face by the end of the day. He was sleeping often, but not struggling while drinking. That evening, we took the pediatrician’s suggestion and gave him Prevacid. Havoc reeked! Crying! Screaming! No sleep! Thinking it was the environment, we took him to my mom’s again on Sunday. Though the morning was a struggle, he got better. By night time, when we gave him the Prevacid again, havoc returned.

By daybreak, I was grateful we made it through the weekend, long enough to make our appointment with the cardiologist. After a quick recap of our weekend disaster, the cardiologist gave us his opinion. It seems the leaky valve is causing his heart to work harder than usual, thus enlarging it, and causing it to push against his esophagus. This may contribute to his difficulty swallowing. Now, it is his hope that after the Glenn Procedure (second heart surgery), the pressure on the leaky valve will decrease, thus alleviating some of the leakiness. “This is my hope, but I can’t guarantee it,” he reminds me. I shrug and gave him an “of course” look. Then, he prescribed additional medication, Catrophil (sp?), to help control the volume of blood pushing through his BT shunt, that may be causing the leaky valve to become leakier.

I left the office with a huge grey cloud looming over me. Depressing thoughts of heart transplants and how far he’ll make it consumed every nerve of my body, eating me up inside. Loi and I walked to the neighboring CHOC pharmacy to fill the prescription. While it was a beautiful, sunny, breezy day out, I couldn’t appreciate it. All I could think of was how I was going to lose my baby. I think Loi was talking, but I couldn’t hear it. As we waited for our order, Loi got me a water, but I couldn’t drink it. Inside, I was sighing, aching, crying.

That same day, we met with a Gastroenterologist for a consult, hoping to fill in some of the holes the cardiologist could not explain. We spent a good half hour explaining every detail about Justin’s medical history from the day he was born. The GI’s diagnosis: his heart is inefficient. Obvious, no? He went on to explain how the body is not getting enough oxygen, which affects the tissues of the body. In Justin’s case, the lack of oxygen is limiting the motility of the stomach functions, slowing the ability of food to pass through the stomach quickly enough. So, it goes back up, causing Justin discomfort and lack of appetite. His eating troubles may be attributed to acid reflux. But, to say this is the problem would be kidding ourselves. The only way to “fix” the problem is to “fix” is heart.

“But, the valve could never be fixed,” I worried outloud.

“Well, that’s a problem you deal with with your cardiologist,” he answered as he brushed his hands clean of us.

Then, he went on to lecture me about how it’s not our fault and that our baby may need an Nasogastric (feeding tube through the nose) or Gastric (feeding tube surgically implanted to the stomach) tube if he does not continue to feed well. He was beginning to agitate me with all this obvious medical advice, given to us like we’re dumb. But, with a straight face, I agreed.

“I just want him to be able to get to the next stage,” I told him.

Justin needs to be well nourished and adequately grow to be able to recover well from his next surgery. Though feeding a baby through a tube is not ideal, if this is what we need to do, then this is what we will do. I turn to Loi as he rocks our hungry baby to sleep. His eyes were to the floor, his lips puckered together. I knew that look, a look that I could only steal with a glance. If he knew I was watching, he’d never let me know how tremendously disappointed he was to hear of how much more abnormal our baby could be with a tube in him.

Sometimes, I disconnect to keep from falling apart.

This is my child, my blood and sweat I’m talking about to these doctors. As emotional as I can be about the information given to me, I do not allow myself to be. When meeting with his doctors, it is purely that–a meeting. I am my child’s advocate, his voice. I cannot let tears and irrationality cloud my thinking when making decisions. So, I turn on the business switch, and leave the psycho Mommy at the door. I try not to look at his precious chubby-cheeked face as we discuss his health because I know I will falter.

If I could do this, I wonder, do the surgeons, doctors, and nurses do the same? Do they dehumanize my child to the level of “just another body” and forget that he is a person who is cared for and loved and his loss in whichever way will devastate more lives than his? Do they remember that this is a person who can feel when pricked and psychologically compromised when traumatized by pain? Would they question their actions and prescriptions if it were their child in place of mine? I face this fear whenever I hand my baby over to any of them. I worry that he is perceived as just another “job”.

But, as Nikki and Daniel so encouragingly reminded me in her last comment on “I worry, it’s his heart,” He has a way of bringing people into my life when I need them most. I truly feel blessed to have such a talented team by our side. The cardiologist, especially, is nothing short of brilliant. He is one of those few doctors I do not question whether he sees my child as my child, a person, a human being.

My Mommy mode is back on, and I processed the information that the cardiologist and GI doc fed me, along with Loi. The medications definitely caused a great downturn in the feeding issue. But, it also turned out that we had some number 1, slower flowing nipples mixed in the batch, possibly contributing to Justin’s feeding difficulty. He would suck so hard, but nothing would come out, then he’d tire in frustration. He probably caught a cold or two, which caused nasal congestion, which equals inability to eat. His heart is probably a factor. But, his oxygen levels are still relatively high; we’re still stumped about this.

All we know is our baby’s doing better. That’s all we can hope for–a day better than yesterday. He’s back to his usual self with more wide-mouthed smiles and adherence to a routine of eat, play, sleep. It is days like these when I forget that anything is wrong. I suppose that is why He throws in those curveballs to keep me on my toes, and to remind me that this challenge is not meant to be easy…and, to remind me to take it one day at a time.

I contemplated getting him to the hospital today, but called the cardiologist’s office instead, and waited to hear some news. I was pumping when my phone rang from across the room. I knew it was him. The sigh he gave before he asked how I was doing was an indicator of some not so good news. Although the comparative analysis shows that the echos looked relatively the same since October, the leaking valve seems to be leaking more so than before. His heart is working harder now. The combination of his malfunctioning heart and acid reflux is contributing to his disinterest and inability to feed. His lips are bluer. He’s paler. He has a cold that doesn’t seem to go away. These are all indicators that his heart is not working as it should.

“Time for the next stage,” he tells me.

My turn to sigh. A big one.

“Okay,” I agreed, “As long as we get this figured out for my baby.”

At this point, his “yeah” wasn’t so convincing. He’s probably unconvinced himself that the Glenn Procedure (second heart surgery) will alleviate Justin’s heart problems.

To deceive my pain of the unknown, to keep the tears from falling, I start a game plan. I start thinking logically. I ask him questions.

Q: What does it mean for Justin to have the surgery so early? Why is it ideal for him to be bigger to do so?

A: The surgery will not be more difficult than when performed on a bigger, older child. But, the recovery process will be more excruciating for him. Being so young, he’ll probably be on his back more, while most of the blood with be coming from the head; the circulation will not be as efficient. He’ll have more headaches.

Q: So, you’re suspicious that it’s his heart and not something else, like something in his GI tract.

A: It’s probably a combination of both. We’ll still set up an appointment with the GI doctor.

But, I know it’s his heart. I know he knows it’s his heart.

Our conversation ends with making an appointment to meet on Monday to plan the (dreaded) next stage. My mask comes off. I’m suffocating, I need to cry. But, I have to tell Loi first. Mask goes back on. I don’t want him to feel like he needs to console me. He’s worried, too. He tries to comfort me anyway, telling me to pray that it’s not anything worse. I’m silent. Justin rustles. He’s hungry, but nibbles only an ounce. I hang up. My favorite aunt calls (perfect timing). “How are you?” she cheerily asks. Silence. Choking. “Are you ok?”

Will I ever be ok? I stared into his angelic face while holding his tiny hand, rubbing it, like it’s the last day I’ll ever get to touch him. Because I don’t know anymore.

This morning, I thought of how I wanted to throw every thing away. Things just complicate life. I was wasting time. Cleaning. My children needed affirmation that their beings were appreciated by Mommy. Justin needed to be held. Nathan needed a playmate. Couldn’t they understand that I clean because I love them? that I can’t stand that they live in a mess? It’s like a never ending battle–the laundry, the toys, the stuff.

I thought of how I just wanted to run away, just leave, to another place where my children were healthy. Where, there’s no such thing as a heart defect. Where, Justin miraculously recovers and doesn’t need the following surgeries. Where, there are no worries.

I thought of how I just want Justin to be happy. That’s all I want. Is he happy? I’m constantly pushing a bottle in his mouth. He arches in pain. His face scrunches in discomfort. He cries and I make him cry even more. He doesn’t want his medication, but I force him to take it, apologizing the entire time. He just wants to be held, comforted, loved. What am I doing to him? Does he trust that I love him? Will he/does he have trust issues?

I thought of what Nathan thinks when I tell him I can’t play with him because I’m cleaning bottles and picking up his toys and putting away the laundry. When, I’m feeding Justin, and he asks me to play with him instead, and I tell him I can’t. Does he know how much I love him? How much my heart aches because I have to share my time between him and Justin?

This Christmas, my wishes are simple. So simple. I want both my babies, alive and well, with me and Loi. At home. Not in the hospital or anywhere else. At home. I want to give them their presents, have them open it. I want to kiss them and hold them. Is this too much to ask?

I thought that when the time comes, I’d be ready. Everyone tells me it gets easier. It hasn’t. Right now, I feel like the first day we heard news of Justin’s heart defect. It’s all starting again–the crying, the planning, the disbelief. But, this time, it’s even more difficult. He’s now a person that I’ve gotten a chance to get to know in the past 4 months. He’s had conversations with me, smiled, and hugged me. His eyes, his mesmerizing eyes I waited weeks to see, I do not want to see closed again. Our time together has been too long and short at the same time. I’m not ready. I don’t want to let go again…but I know I must. I have no choice. So helpless all over again.

I know many of you have in the past or continue to go through difficult times with your loved ones. Our circumstances may be different, but the thought of losing a loved one is just so devastating to the soul. Help me. Please give me some inspiration that a better day is around the corner. I’m blind sighted and can only see today and the end, the only two certainties in life. I just need some hope even if the inevitable is true. Because I don’t want to cry. My babies need me (but, how I need them more!). As much as it hurts, I smile. I laugh. I make them smile and laugh. Because life’s too short.

Let us be happy…even if it is just for today.

Normally, the days really fly by for me. Before I know it, the sun sets, Loi’s home from work, and we prepare for Nathan’s bedtime routine. Today, time has stood still. Just as I thought things were going to get easier with Justin overcoming his oral aversion, he starts having feeding problems AGAIN! There is something more than GERD (Acid Reflux) going on here…I just have a feeling. It does not make sense that one day he’s fine, and the next he hates drinking. Let me reiterate the dangers of undereating: dehydration, low glucose levels, affects to the brain and body. I don’t want to have to take him into the hospital for this!

Earlier today, I was in good spirits and enthusiastic that the day would get better. It hasn’t. He nibbles on an ounce or less every two hours. It’s time to bring him in to see the GI specialist to rule out any other potential causes for the GERD-lik symptoms. With Justin, I’ve learned that nothing is black and white. But, she’s not taking appointments until February…FEBRUARY! He’ll have his second heart surgery by then. I call his cardiologist–the man with all the answers. He scheduled Justin in for an echo tomorrow to see if there are any new problems with his heart that may be causing his difficulty feeding. And, he’s personally calling the GI specialist to get an earlier appointment for us.

I’m worried…having shallow breaths, butterflies in my stomach, back to square one–hoping for the best but preparing for the worst. Pray for us.

Ready for a lunch date with my gramps. 

Enjoying a quick game of NBA 2k8 on my PS3.