Home of the Four Trans

“It has been said that there are 2 ways of being unhappy: not getting what you want and getting what you want.

“When people attain what the world tells us is desirable–wealth, recognition, property, achievement–they’re still not happy, at least not for long. They’re not at peace with themselves. They don’t have a true sense of security, a sense of finally having arrived.

“Their achievements have not provided them with what they’re really looking for–themselves. They have not given them the sense of being rooted in life, or as Jesus calls it, the fullness of life.”

(**Justin has really helped me find myself.) Although I may not have all the worldly possessions and I may not bear great social status, I am at peace with who I am. I appreciate what is and am not in constant search for more. It can get exhausting to try to chase something when you don’t know what it is you’re after.)

AND

“You don’t solve problems by thinking; you create problems by thinking. The solution always appears when you step out of thinking, become still and absolutely present, even if only for a moment. Then, a little later when thought comes back, you suddenly have a creative insight that wasn’t there before.

“Let go of excessive thinking and see how everything changes. Your relationships change because you don’t demand that the other person should do something for you to enhance your sense of self. You don’t compare yourself to others or try to be more than someone else to strengthen your sense of identity.

“You allow everyone to be as they are. You don’t need to change them; you don’t need them to behave differently so that you can be happy.”

(**I’ve admitted that I think. Way. Too. Much. Often times, I wonder how I can change another’s perception of Justin’s reality…that he is forever sick. His heart is never fixable. A heart transplant will not fix all problems just because it’s a “new” heart. That he will never be “normal” according to their standards, but normal enough to heart baby standards. I get tired of explaining and knowing that they’re not really understanding because they’re just busy thinking “how sad” or “medicine is so great he’ll be fine.” I think, “Geez, why don’t they get it?” Then, I realize that I’m explaining because I want them to see all the complexities of my life with Justin. I get frustrated when everything is simplified. So, I let them be. And, I stopped narrating my life and conjuring story lines in my head of what I could have said to what they said, or how things could be different if they just understood, or arguments I’d like to have with them. I save my energy…for the smiley boy Justin who can’t keep his eyes off of me….and for my Nathan who never ceases to make me laugh. And, the solution does come to me…of how I can help them understand….when I least expect it.)

–Eckhart Tolle, Findhorn Retreat: Stillness Amidst the World

Nikki once told me that God has a way of sending those to me when I need them most. And, there I was, at the hair salon, getting a little trim…She pulled this book out of nowhere (another client of hers had offered it to her) and told me to read it. Then, she went on to tell me that she does not have everything or all the money in the world, but she always tries to be appreciative and enjoy life. She doesn’t let the little things bother her because she doesn’t see the point.

My week had been tension filled. There were moments when I caught myself not breathing because all my stress gathered at my chest. This was a result from a combination of poor eating habits, endless cleaning (can Nathan have any more toys?) , and a lack of time to recharge (imagine Nathan calling “MAWMEE, MAWMEE, MAWMEE” like a siren throughout the day while Justin “WAH, WAH, WAH’s” Uh, can I just go to the restroom, please? “Mawmee, you’re not listening to me!” Nights are insane with Nathan screaming and scratching.). I just needed time to myself–without my boys–for a few hours. To breathe. The hair stylist was really a blessing. I stepped out of the salon refreshed and with a renewed perspective.

Then, went to Barnes and Noble and got me one of those Ekhart Tolle books, “The Power of Now.“

So, Justin’s behind a few months (he’s in the 4-6 month range) in his physical skills, but that’s to be expected since he’s been in the hospital for almost half his life.

Life really does go on, though. With Nathan, I was really obsessed with every milestone. I made sure to track his abilities month to month on Baby Center. It just so happened that Nathan surpassed every milestone (except the walking one. His feet didn’t even touch the ground until he was 13 months old) early for his age group. He’s like a little man…sometimes, I forget he’s only 2.5 years old.

Justin still has so much room to grow that I’m not truly concerned. And, having seen him almost on his deathbed makes me appreciate how vibrant and alive he is smiling and kicking. With all the atrocities his little body has been through, I’m proud (and still in disbelief) that he’s come this far. Oh, and the fact that he’s such an inspiration–to me especially–just makes me beam with pride.

Here’s to another beautiful day with my two little boys.

You all know that in my heap of dreams is the dream to share a dance with each of my sons on their wedding days (simple enough, right? I hope so…).

Well, I’ve chosen a song for Justin and me: “My Valentine” by Martina McBride.

You’d think after 8 years in the wedding business, hearing this song week after week as I watched the newlywed couples share their first dances, I’d be sick of it. But, the song has new meaning to me.

Check out the lyrics:

If there were no words
No way to speak
I would still hear you
If there were no tears
No way to feel inside
I’d still feel for you

And even if the sun refused to shine
Even if romance ran out of rhyme
You would still have my heart until the end of time
You’re all I need, my love, my Valentine

All of my life
I have been waiting for
All you give to me
You’ve opened my eyes
And showed me how to love unselfishly

I’ve dreamed of this a thousand times before
But in my dreams I couldn’t love you more
I will give you my heart
Until the end of time…
You’re all I need, my love, my Valentine

And even if the sun refused to shine
Even if romance ran out of rhyme
You would still have my heart until the end of time
‘Cause all I need is you, my Valentine
You’re all I need, my love, my Valentine

This dream, I realize, may not be seen to fruition. So, I seized the day, today.

I turned the I-tunes up on the computer and danced right there in our bedroom with my Justin cradled against my chest. I was in my blue jeans and a faded black V-neck fitted shirt. Justin, fresh out of the bath tub, was in his light blue stretch pants and beanie, and a shirt that said “I Need My Space.”

Who needs all the hoopla with the flowers, decorations, lighting, dance floor, tuxes, and expensive evening wear? I had everything I needed right then and there….I had my little man…warm, alive, looking in my eyes…and, us, happy.

PETITION FOR PRAYER: Keep praying for Justin and his little heart. Pray that his leak will improve and that his heart will beat stronger and stronger by the day. I may feel helpless, but certainly not hopeless. My belief in the Lord will get my family and our little Justin through this. Thank you.

Some say no news is good news. Well, not in my case.

Heres my problem: I THINK too much. So, if you can imagine, I’ve been living in my head envisioning every possible scenerio that will occur since I’ve heard some unfavorable news about Justin’s heart as of late. My THINKING has drained me of any energy needed to even post the news.

Here’s the heartbreaker: Last Thursday, Justin had a scheduled echocardiogram that showed that his AV canal is leakier than pre-Glenn. The cardiologist also reported that his heart is not pumping as strongly as it once had.

I’ve been using all my energy contemplating the meaning of all this and planning my next move on what I’ll do to help this child of mine. (Oh, yeah, and tending to Nathan through his *almost* asthma attack, calling doctors, setting up appointments, paying medical bills, working on personal projects, etc….it never ends…thank the Lord for that!)

Heart transplant and everything that surrounds this issue is surely one of my worries. But, the cardiologist assured me, today, not to “obsess” over it too much as it is too premature to discuss at this point. Surprisingly, though, this is only in the back of my mind and I have NOT been obsessing over it. Rather, I’ve been thinking about how long he’ll have with the heart he has, whether he’ll make it to the Fontan (yes, but, how successful the Fontan will be is another story) or his first birthday even (yes, based on how his heart is now). And, I’ll admit, I’ve been thinking about whether it’s worth going through the Fontan if it will only mean he’ll need to get more blood products or that he may get sicker, which may compromise whether he’ll get a donor heart or how well his body will accept it.

The thing that makes dealing with this news so difficult is from the outside, post Glenn, Justin seems to be doing MUCH better. His color is rosying up, he smiles, plays, and is gaining weight well, and loves to eat! He’s been gobbling up his cereal like a little champ. The news about his valve being leakier just brought to reality what his outer appearance is only masking–how messed up and incredibly WRONG his insides are. No matter how much I want to PRETEND he’s this perfect little baby who will have this wondrous long life to defy all odds, I KNOW reality is he may not even have a decade.

But, you know what? I’m tired of being sad, crying inside, and feeling helpless. I made a decision this past Friday. I am on a mission to SPREAD the WORD about CHD (Congenital Heart Disease) on a NATIONAL LEVEL. The more the greater community is aware, the easier it will be for us to gain funding for research and obtain infant hearts for transplants. Tune in next time to hear about my pending campaign that is in the works with a friend I met on Learn About CHD. But, we need all of your help!

For now, please take the time to refresh your memory on how greatly CHD affects our children at March of Dimes.

All of you may already know of someone close to you who has a child with CHD and not even know it! I know everyone that I’ve opened up to has come up to me to tell me they have a family member or friend who has a child affected.

FACTS:

About 40,000 infants (1 out of every 125) are born with heart defects each year in the United States (1). The defect may be so slight that the baby appears healthy for many years after birth, or so severe that its life is in immediate danger.

Yesterday, I turned 28 years old. After 6th grade, I never found February 20th, my birthday, to be much to celebrate about; it was just another day of my LIFE.

This year was different. This year, I realized that my LIFE is worth celebrating because my LIFE brought Justin and Nathan into this world. These two little people who have brought so much inspiration, joy, and laughter into the lives of many gives me more purpose and reason to rejoice than I ever knew.

I realized…without me, there would not be them. And, what kind of world would this be if Justin and Nathan were never here?

So, how did we celebrate? Loi bought killer tickets to WICKED, the musical I had been dying to see! We spent a good 6 hours away from the kids and transcended into another world of Good vs. Evil. The performer in me wanted to leap onto stage and belt out a song or two as I watched the talented actors bring the characters of Elphelba and Glinda and their stories to life. The actresses’ voices were phenomanal and the story line was seamless. I didn’t want it to end…although, the show lasted a good 3 hours.

Who knew I would have the courage to leave my Justin for that long in the care of another person (his paternal grandma). But, with all the stresses we’ve been through in this past year, I think this was a mini vacation we knew we both needed…and appreciated.

While the show (and seats) were outstanding, the best part of my day was coming home to a little surprise from Nathan. He had his auntie, who was caring for him, print out a CARS activity sheet and colored it for me. He labeled the SALLY car MOMMY and the LIGHTNING McQUEEN car NATHAN. We were driving down the road together…”HAPPY BIRTHDAY, MOMMY,” it said, from Nathan and Justin. Despite all that he’s been through, with us being gone from him at weeks at a time while caring for Justin in the hospital, he still loves me and is still my mama’s boy…so sweet.

Happy Birthday to me!

It’s been about a week and a half since our discharge from CHLA. Seems like forever…

Getting back to the “normal” life, outside of the hospital and the beeping monitors and the frequent visits from nurses and doctors, has been relatively smooth. Aside from Nathan’s crying fest the first two nights we were all home together, he’s been adjusting well. When he hears Justin crying, he runs to Justin saying, “I here, Pee Wee. I, here. It’s OK.” Loi’s back at work. I’m back at home–cleaning bottles, pumping, cleaning, sorting through the stack of (medical) bills.

We’re back in our familiar settings, doing our familiar things. Yet, nothing seems to be the same.

In the past month, my child’s life had ended twice. He got a pacemaker put in. He went through another open heart surgery. He bled a “generous” amount of blood after surgery. He had a stroke. No matter how much I want things to be the way they were, it will not be. Things have changed, perspectives have changed.

We had a meeting with Justin’s cardiologist on Tuesday. I found myself having to relive the entire nightmare with having to recap all the major episodes Justin had gone through. Then, there were plans to meet with more specialists, a neurologist and hematologist. The cardiologist wants to clear the way of any potential blood clotting issues that Justin may inherently have which may have caused the stroke, hence the meeting with the hematologist.

Worst of all, I think, was how we had to discuss about Justin’s leaky valve. From the last echocardiogram done at the hospital prior to discharge, it didn’t seem to get better. My hope is that it will improve as his body adjusts to the new physiology of his heart. For now, his lips are little bit bluer and his color is not as rosy as it had been after the BT shunt had been put in (I looked at pictures to compare).

I dreaded this discussion because it only made the fragility of Justin’s life more real to me. His entire existence depends on this crucial organ, the heart–if it fails, all else will, too. With the valve being as leaky as it is, with no hope of repair, with only medication to help alleviate the stress on that valve, I worry.

I worry: How long will his heart last? Will he make it to the Fontan? Will he qualify for a heart transplant? Can I handle what is ahead?

This morning, I had left the room for a moment and returned to a screaming Justin. I quickly scooped him up and in a sing-song voice said, “I’m sorry, baby. I’m sorry. Mommy’s here, now. Mommy’s here. I love you.” I hugged him tight, rocked him back and forth, as I smacked my lips against his forehead until his wide mouthed, squinty eyed scream turned into a smile.

I looked at him, serene and content that Mommy had rescued him from his loneliness and thought, “If only easing all your pain could be this easy…if only my kisses and hugs were all it took to heal you…”

But, who’s going to heal my pain if anything were to happen to him?

This battle, of living life each day for that day, appreciating all that life has to give is ongoing. I realize, now, that everyday for the rest of our lives are days of healing, of accepting what is, and letting go of what could have been.

I asked Loi this morning, “Do you think we made the right choices for him?,” referring to the events leading up to Justin getting the pacemaker put in. I wondered what we could have done differently.

“There’s no point in thinking about that, now,” Loi told me. “Don’t waste your energy.”

He’s right. What’s done is done. It is time to move forward and live with the time that we have left. No point in thinking of things that we cannot change.

Trust in the Lord with all your heart

and lean not on your own understanding.

In all your ways acknowledge him

and he shall direct your path.

Proverbs 3:5

Ah, my little Justin. He truly is full of surprises. Since the last time I posted, he has hit a few rough patches on the road to recovery.

Two Steps Forward, One Step Back

Justin’s physical appearance matches that of a boxer. He looks like he’s gotten into some terrible fight.

Day 3:

Bruised Eye

Huh? Where did this come from? Seemingly out of nowhere, Justin developed a black eye on his right. This has left all the doctors quite baffled. However, the theory is Justin’s coaugulation issues may have something to do with it. When his blood clotting ability is compromised, he has the tendency to develop more bruises, according to the doctors and nurses.

Respiratory Infection: Pneumonia or Bronchitis or Something

Loi was holding Justin for the first time in over a week when Justin’s lungs seemed to give out as he started taking in deep sucks of air. Loi could see Justin’s rib cage as he struggled to breathe in and out.

Justin was re-intubated to allow his lungs to recover. Before doing so, the attending physician peeked down Justin’s airway to find copious amounts of “gunky, gross goop”. There was no other way to describe it, according to her.  A culture was sent out to find if Justin did in fact develop any sort of infection.

Day 4:

Signs of Infection

All signs in his blood work this morning showed that Justin did develop some sort of infection. The cultures did grow some “rods”, but the type of bacteria is yet to be determined.

Gassiness=Crying

Justin passed a lot of stool and gas, and cried in agony every single time. Tried Mylicon, but to no avail. We pretty much just have to wait it out.

Pneumothorax

In the process of being re-intubated, the team had to “bag” him, pushing oxygen into his lungs. One of the side of the effects is developing a pneumothorax where air that escapes from the ruptured lung gets trapped in between the chest cavity and skin. The nurse and I saw the asymmetry in Justin’s belly, and felt some crunchiness from that area–signs of the problem.

Day 5:

Chest tube goes back in…

To drain the air.

I walked in early morning to find the surgical fellow with a mask on and Justin draped. He quickly explained that the pneumothorax had gotten “bigger” which would hinder Justin’s extubation. The chest tube would be the best solution, according to him. I agreed, stepped outside, and waited for 10 minutes before he completed his task.

The remainder of the day was full of coughing and suctioning. Whatever bacterial infection Justin has has caused him to develop disgusting, thick, yellow to red phlegm. The nurses had to suction him every hour, or as he coughed to clear his airway.  The kid hates it, and cries murderously (or so I imagine from the looks for his scrunched, red face), every time.

His eyes were either rolling to the side or to the back of his head. His left hand was always clenched in a tight fist, while his left foot twitched uncontrollably. He looked like a nervous wreck…side effects of the narcotics, possibly? Argh.

Day 6:

Still intubated, but recovering and stable…

Less coughing and phlegm today, thank goodness. He is much more alert because the drugs finally wore off. I finally got to see my baby again, with his piercing brown eyes. For the first time in over a week, my Justin made eye contact with me, and listened intently as I sang to him:

You are my sunshine, my only sunshine/You make me Happy when clouds are grey/You don’t know how much, how much I love you/So, please don’t take my sunshine away.

And, I caught him watching tennis on the TV in his room. Rattling toys, tinkling mobile, and glowing, musical animals couldn’t calm him for the 10 minutes I had been trying. Then, sudden silence. I followed his gaze to the tube. Loi caught him doing this the previous night and turned off the TV. Couch potato in the making…not if we can help it!

The attending and surgeons discussed possible extubation tomorrow if the night goes well. I’m praying that it will.

This is Our Story

Justin is amazing, isn’t he? Goes to show, children are resilient creatures.

I had often been told this while pregnant, and immediately following Justin’s first surgery. And, I suppose, I had this false sense of reality where everything was going to be OK, like one day, he was miraculously going to recover and heart disease would not be a part of him anymore. And, I looked forward to the day when all of his suffering would be a distant memory, never to be conjured up again. I looked to those stories of children who are living with CHD, hopeful that my Justin will one day have a normal, happy life. I relied on medical advancement to continually prolong his life like it was a for sure thing.

True reality is: heart disease will always be a part of Justin and his path is never certain. I am always hopeful that the future will hold many things beautiful and possible for Justin. But, again, I never take for granted what I have today. Each day that I have with him, even if it seemingly is one of our worst days, I appreciate his breathing body and working brain, the chance to hold him and kiss him.

Moms of CHD children to be, no amount of research will ever prepare you for the adventure your little one will take you on. No story will ever compare to the one you will share with your child. Let’s face it: your child is unique. Even if you find another child with the same diagnosis as your child’s, the journey will never compare. Embrace this, moms, and you will be greatly rewarded.

Although our story with Justin is extraordinary, it contrarily emphasizes the ordinary.

The constant theme of every entry is to appreciate each day as it comes, take it one day at a time, take one step in front of the other. Truly, we live each day for that day. I will not think of 5 to 10 years down the line because really, who knows what is going to happen. It is hopeful to think of the future, and plan for the future, but we are constantly reminded to never take for granted what we have today.

We are reminded to appreciate things that we may have otherwise taken for granted: our children, family, friends, health, freedom, food. Being in the hospital, away from home for weeks at a time, eating cafeteria food, bound to a small ICU room, unable to hold my baby without lines and tubes tugging on him, not having all four of us together really, really puts things into perspective.

We do not push through each day just so that we can just get through that day, hoping tomorrow will be better. We live for that day, and appreciate all that God gives us. Because, we know, tomorrow is no guarantee.

So, go ahead, everyone, make your own story. Leave your mark in this world with such profound impact that your legacy will carry on. Justin has and will continue to do so. Proud Mama? You betcha.

We’ve come to a time in Justin’s journey where all we can do is pray–pray and have faith that all he must endure is for great purpose.
We pray with great hope that our prayers will be answered.

Justin had a rough morning yesterday. Throughout the day, the anxiety level was high, with us not knowing which turn Justin’s heart was going to take. Doctors deemed him critically stable. But, those of you who have followed our blog know that Justin and his journey can be so unpredictable. He really is full of surprises.

Loi is much stronger than I am. He can tolerate the constant beeping and alarming of the machines whenever one of his vital signs dip or rise. I, on the other hand, find my breath caught in my throat, with difficulty to breathe. Sometimes I watch. Most times, if a nurse does not answer quickly enough, I look for one. I pace…a lot. Sitting still is almost not an option. I must do something, anything for my baby. So, I stand by his side, talk to him, pray for him.

Today, I told Loi I didn’t know if I could handle it…the hospital, the anxiety of not knowing the unknown. I had to leave.

Faith brought me to my church, looking for some comfort for myself and my family, but especially for Justin. After praying to Joseph, Mary, and Jesus for our strength, I wandered. I needed guidance. A stranger took me under her arm as she saw tears streaming down my eyes when she asked me if everything was OK. She said, “You don’t know me, but let me help you.” She let me talk as she listened. I’ve been told to be strong…and, I try, so desperately. Tears are the last resort, when my body can no longer handle the immense emotional buildup. My baby’s life ended twice, yet, I did not shed a tear. I reclude to a corner of some empty room and release. I am told to be strong. And, I try. But, sometimes, it is too much.

I asked the parish father to visit us and Justin at CHOC for some guidance and prayers. This evening, he arrived with a relic of St. Cabrini’s habit. He told us to pray for every miracle. St. Cabrini is known for healing children and parents who are unable to conceive. He prayed for Justin’s strength and recovery, and for all the angels and St. Dominic to watch over him.

We pray–Loi silently, while I speak to Justin, the saints, the Lord.

CHLA is scheduled to arrive for Justin at 5AM this Monday morning. His surgery is scheduled for 10AM.

I beg all of you to please pray for our little Justin. He deserves everything because he has given us everything.

Thank you again for all your support, love, and prayers.

God bless.

There’s too much that has happened in the past two days, yet, as always, never enough time to express it all. What I want to tell you all is that my baby, Justin, is so incredibly strong. His life ended not once, but twice, in two days. On Wednesday, his choking episode which led to his heart to stop lasted for 8 seconds. Thursday night, just as we thought we were out of the woods as the doctors were ready to attribute the choking episodes solely to acid reflux, he choked again. This time, his heart stopped for 30 seconds. That’s half a minute!

Miraculously (and, yes, I note MIRACULOUSLY), at each episode, my son revived himself back to life. There is so much doctors cannot explain–especially how his heart just stops without any sign of desaturation and decrease in respiration rate. Both times he came to life himself without any CPR or oxygen. We simply tilted his head back, cleared his airway, and he seemed to come back on his own.

One doctor tried to associate these episodes to acid reflux alone. But, Loi and I know better. With Justin, there is never any clear cut answer. Our Justin is special, everyone. We can truly say there is no other like him. Nothing about him is textbook–his anatomy, the trials he’s faced after every procedure (i.e.; bleeding debacle immediately following his BT Shunt Procedure, choking episode and arrhythmia a day following his cath procedure).

Let me tell you this. A wise man person will acknowledge:

1. what he does not know

2. that Justin is different…there is no other like him, and no book will tell you how to diagnose or fix him. It will take a little piecing of puzzles, and thinking out of the box.

3. that perfection does not exist, and that there is no perfect answer

We are blessed to be among such wise people at CHOC–nurses, doctors, cardiologists. They all worked diligently with Loi and me to create the best plan possible for Justin’s immediate life.

I am fine right now. But, I cannot tell you the immense stress Loi and I experienced yesterday as we were faced with a critical decision of how to maintain our baby’s life. We watched as his heart rate continue to drop with no apparent reason and decided it was time to get a pacemaker in to keep him safe. I was scared, to say the least. Scared of losing my baby. Both times, I had to stand and watch as Justin’s heart stopped, with him laying lifeless and blue in his crib. All I could do was stand and watch as a swarm of medical people crowded around his bedside, ready to resuscitate him back to life. My baby, was laying there, and I felt so helpless.

There’s too much to say, and I must go…I need to return to my baby who is now intubated and sedated in his crib. I watched tears fall from my baby’s paralyzed baby yesterday. He hurt, but he could not cry, could not move. He saw me, with his eyes, through his puffy lids. He asked me, “Why, Mommy.” He’s but an innocent little child, everyone, and he’s walking the steps of a mighty man. And, somehow, everyone was sympathizing with me. He’s the one who was hurting, the one who could not speak and decide for himself. He is the one who cannot understand, cannot comprehend why, why, all these people were hurting him, and Mommy, the one he trusts so much to protect him from all harm, was not warding them off, but allowing them to inflict such pain on him. I had to pass my child over the doctors for a second catherization procedure in 3 days for a temporary pacemaker to be put in. I lost it as I held his head while the anasteaologist placed a mask over his face while he screamed his face and eyes red. He stared at me the entire time through those squinted, screaming eyes, asking me, “Why, why, Mommy. Help me!” He was scared, but had no choice. I made the decisions for him, I had some control. He had none. Yet, doctors and nurses sympathized with me, apologized to me, felt bad for me. They asked me if there was anything the could do for me. “No, just help my child,” I thought. And, they knew that that is all they can do.

Everyone, the doctors and nurses all tried their best. And, the Lord is watching over my family and baby. He told me, “Do not be afraid.” He gave me a sign that everything was going to be OK…whatever that means.

I must go. Please continue to pray for my baby Justin as he will continue to fight for his life. His second heart surgery is scheduled for Monday. Justin will hopefully be transported from CHOC to CHLA today, when a bed is available.

There will be more tests, more medications, more pain from needles, poking, prodding.

Thank you everyone for your support.