Home of the Four Trans

New haircut, new threads, new shoes, same cutie. 
Stop bothering me, I’m eating!
Justin always enjoy spending time with his big brother.
Wow! Nathan has perfected “Blue Steel”.  
This is Justin’s first belly-time post-surgery.  

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

Nathan’s on the john, Justin’s asleep in the crib…

I have 3 minutes to give you all a quick update before it’s time to run again.

After 26 days in the hospital, we made it home safe and sound to our humble abode on Monday, February 4, 2007…ahhh, home.  HOME is where my babies and Loi and me are…where we can all be together.

Since then, Justin’s made a lot of progress with gaining mobility in his right arm and turning his half smile into a full one. The stroke to the left side of his brain has affected the right side of his body. So, when playing with him, you can see the significant difference between the two sides of his body. But, when just looking at him, you wouldn’t be able to tell that there’s an inch wrong with him. He’s back to his usual self (better, dare I say?) smiling, playing, and tracking everything in his sight with his great big eyes. Oh, yeah, and he’s eating close to how he was before the whole feeding issue 3 months ago (that may be associated with his arrhythmia). It’s like he hasn’t been through anything at all!

Today, Justin turns half a year old! We’ve come a long way, baby…

His lips turn blue at times and the nailbeds on his right hand are bluer than the left. Sometimes, he breathes a little faster than usual. Last night, I slept with him for the first time since we got home (because I’ve been sleeping with Nathan in his car bed the previous nights). I stayed up listening to his breaths until it slowed down to normal. The worries are there, I don’t think those will ever go away. But, we’re home, he’s happy, smiling, and enjoying his life being carried and cuddled.

Our prayers had been answered: we were home before Chinese New Year. We were able to bring in the new year as a family.

Thank you all for your prayers. Please continue praying for us.

Love,

Jen

Today was a busy day.

Justin’s been having some issues that we finally found some answers to today.

Limp Right Arm=Symptom of Stroke

Yes, you read right. Justin had a mini stroke that affected the function of his right arm. We had noticed the limpness of his hand while in the ICU immediately after the nurses removed the arterial line from his wrist. The Nurse Practitioner attributed it to a possible hematoma that caused stiffness in that area. Days had gone by, I kept asking, nurses and doctors kept saying it looked fine. Finally, I asked the surgeon during rounds and he called for a neurologist to look at it. Today, it was confirmed through a CT scan that Justin did in fact suffer a stroke to the left side of his brain. According to the neurologist, the blood clot did affect a “good part” of the area. There are too many medical terminology I’m too exhausted to recount.

Good news is: with Justin being so young there is hope that he’ll regain function of that arm. The neurologist pointed out that it will never return to “normal” function, though, that it will always be weak.

A part of me died with the part of his brain

Of course, the news was devastated me. I was angry, but didn’t know who to be angry at. I wanted someone to blame, but it was no one’s fault. This is just how it’s meant to be for my little Justin. Why? I’ll never know.

I couldn’t look at him, or hold him, or anything with him. I felt like he wasn’t him anymore. The person I wanted him to be may not be. I gave birth to this child; this bright, fully functioning child and human intervention messed it up. I thought, what if we hadn’t even gone through with the first surgery, would his heart have healed on its own? It’s like his body is resisting every medical procedure all along the way. Recall the first surgery with the bleeding debacle, then the heart stopping after the catheterization, and, now, all this, after the Glenn.

I thought, what if I didn’t know, and I just brought him home after he was born. How would his life have been different?

I lost a part of my child today I think I’ll never get back. His path has forked. He’s now traveling a road with new obstacles to overcome: physical and occupational therapy to regain use of his arm, meeting with a new group of specialists including neurologists.

What the future holds is now so clear: the unknown. Justin’s experienced many odds against him along his entire journey that goes to show there’s no preparing for the future.

Things are Just Meant to be

Eventually, I got over my self loathing and pitying and opened up my eyes. Things really do happen for reason. I was meant to learn of his condition early to allow myself time to get over the shock and mourning so that I could concentrate on his care after he was born.

Here’s the thing that turned my faith around today: Justin was called for a CT scan 2 days prior to his Glenn procedure because he failed to wake up after 24 hours of being off the sedative, fetanyl. The preliminary results showed no abnormalities. Had we not had the CT scan from prior to surgery available to compare to, it would be unclear as to what caused his stroke: his heart stopping at CHOC or the Glenn surgery.

Pondering the what-ifs, thinking irrationally of what could be allows me an escape from this reality that Justin has an incurable disease. I want so badly to undo what I did to him and the contemplation allows me to live a life (in my imagination) of how things would be if I had just done things a little bit differently.

Truth is, the things happened. I found out of Justin’s heart condition without great effort at a routine ultrasound. I was led to an amazingly talented cardiologist who diagnosed Justin almost to the tee. I was allowed time to prepare–physically, mentally, emotionally. With those events occurring the way it did makes me believe that any other path was non-existent. Regardless of how Justin’s multiple heart defects came to be, his life on this earth with Loi and me was meant to be.

Weak Cry, Raspy Voice=Symptoms of Vocal Cord Damage=Difficulty Eating?

The Ear Nose Throat (ENT) docs were involved to assess Justin’s eating difficulties. The cardiology team were suspicious that Justin’s vocal folds were damaged from either the intubation/extubation process or from the open heart surgery. An objective study (using a scope threaded down Justin’s nostril to his throat) showed that Justin’s vocal folds are still intact. However, the docs did find that the muscle ontop of the vocal folds were a bit swollen which may add to his irritability when feeding. What’s worse is that the acid reflux (yes, it’s back with full vengence) may be irritating this area more. (So, Justin is being treated with more Zantac (to protect the stomach from acid) and Eurhythimiacin (sp?)(an antibiotic to help in the motility of the stomach, helps it empty quicker).

So, what now?

The Logistics

Now that we have some of the loose ends tied away we can prepare to be discharged. The Nurse Practitioner is coordinating some education for us before we leave: management of the NG tube and pacemaker. It will still be a couple more days since we’re now entering the weekend.

TheFamily

The baby Justin we left home with almost a month ago is gone. The baby Justin we’re bringing home has rhythm problems and a pacemaker, an NG tube, and part of his brain damaged. The baby Justin we’re bringing home is a bit loopy, out of it, tired, sad. That smile that I had been longing to see has faded.

We lost a part of our Justin along the way. In moments like these, when I just want to let go of all hope and faith, I hang on tighter. It seems almost unreasonable and irrational to do otherwise. I have to believe that all that has happened to this innocent, unknowing child has all happened for reason. The Great Physician has a plan and I must let it be.

I would be lying if I said I am not sad. I am. Our hopes and dreams of what Justin could have been (a champion golf player, a doctor) died with that small part of his brain.

But, sadness does not overwhelm me because I still have him today.

So, we hope that in a few days, we’ll be able to pack our bags (and our little Justin into his carseat), head home, and start our new lives together.

Remember that scar that everyone was so concerned about in the beginning? You see why it is the least of our worries? There are far more obstacles Justin must face than the superficial. And, those things we pride ourselves over–sigh–those are nothing because they cannot give us that true joy and sense of accomplishment that our little Justin can.

If there is one message I’d like to impart upon you all today, it is: do not take your children for granted. They are these special human beings that need you and love you. The fact that they’re so young, with they’re whole lives ahead of them, that there will be plenty of missed opportunities to make up is no guarantee.

I’d give anything to have that sense of security that tomorrow, when I wake up, Justin will be there. Watching him graduate from college in his cap and gown, dancing a mother/son dance at his wedding, are things that I speak of, but always in fear of never experiencing.

I suppose regardless of his condition, that fear will always be true. My life on this earth is no guarantee either. Whether or not he’ll choose to go to college or decide to marry is no guarantee. The future is no guarantee.

As much as it hurts sometimes to prepare for a future that would include Justin, we do. That worry of whether he’ll be there in that future cannot stop us from our pursuing our endeavors in work and in life to create the best possible for Justin.

Only a small percentage of children experience some damage to the brain when undergoing heart surgery. My son, Justin, with all the odds against him with his physical condition already, had to fall within that small category. The three main risks of open heart surgery are: bleeding, stroke, and death. Justin’s experienced 2/3 already. Am I fearful of what the next heart surgery may bring? Definitely. But, I’m pushing on, letting go of the past, hanging on to today, and dreaming of the future.

We’ve hit a bump, it’s slowed us down a bit, but we’re moving forward with greater momentum. That’s all we can do…keep moving forward.

Please continue to pray for us and our family. Thank you.