Home of the Four Trans

While I was discussing the Montessori method with the school’s head coordinator that I’m enrolling Nathan in, I found an opportunity to discuss how the Montessori method may help Justin’s cognitive, motor, and other physcial developments. Per my readings of Dr. Montessori’s translated writings, her method was developed to help children gain autonomy, especially those who are “disabled.” Justin is certainly not disabled (not in my book), but he is definitely delayed because of his heart surgeries, stroke, and poor heart function. I wanted to gain information about how the program was designed for the younger 18 month children, and how it may help Justin. In the process of learning about the Montessori method, I also learned something else.

When I mentioned Justin’s heart defects and saw her facial expression unaltered, I knew that she had some insider information.

“Does he have Tetrology of Fallot?,” she asked me.

I then explained to her, shortly, Justin’s heterotaxy and multiple heart defects.

Then, I asked her if she knew someone with ToF. She said, “Yes, my son.”

At that point, we engaged in a conversation about her son and his journey.

Q: When did he have his surgeries and how did he do developmentally afterwards?

A: He’s now 18, had his first surgery at 10 months old, second at 14 years old to replace a valve. He’ll continue to have valves replaced as they wear and tear. Although he was small for most of his life, he caught up after the second surgery as his heart became more efficient in pumping oxygenated blood throughout his body. He was able to army crawl up to 10 months, but after surgery was forced to crawl off the ground to be off his chest. No one could tell that there is anything wrong with him just by looking at him. He just graduated high school. The only developmental set back was him being diagnosed with ADD at 14 before his second heart surgery. She believes that the lack of oxygen throughout his body affected his brain activity and behavior.

Q: How is it dealing with surgery as he gets older?

A: She’s a proud, tough mama. It was never difficult for her to tell her son to get up and go when he’d rather whine in bed of his pain. She knew he was in pain, but she also knew that he could push himself. In preparation of the second surgery, she did not tell him of his surgery date. She planned a Hawaii trip and told him on the plane on the way there. By the time they got back, he had no time for anxiety as the surgery was the following day. He was upset with her, but, it worked out fine. (I think I will have to include Justin in on the plans.)

Q: Where were your surgeries?

A: The first was at Millers Children Hospital in Long Beach by Dr. Bethencourt (I was originally assigned here by my HMO), and the second was at Children’s Hospital of Orange County by Dr. Gates (I considered this surgeon). She was amazed by how much medical technology had improved between the first surgery and the second.

What I learned? I’m not alone and there are many families dealing with children with heart defects. I realize that our sons’ conditions are not the same, and neither are their prognosis (Justin’s is worse). But, with each story is so much hope. Medical technology is amazing. I am in complete awe of how much opportunity Justin has been given at life already. Three or four decades ago, he would have been sent home for “compassionate care” without a chance.

Thanks heart mamas for sharing your stories. I’ll keep praying and hoping for more miracles.

I went to work today. Yes, work. For eight hours, 3pm-11pm.

It’s been a year since the last time I actually worked, and it felt a little…liberating.

It’s been a year, but I still got it. Aside from some things slipping from my mind, my organizational skills when coming to running a (200 people) wedding reception is awesome. I had forgotten how good I was at timing things and getting things done on par or beyond the bride and groom’s expectations. Of course there was a team of servers, kitchen staff, cooks, etc., etc. But, it still amazes me how I can handle so many people and not feel overwhelmed. And, I handle what others may perceive as stress pretty well. Tooting my own horn, that’s for sure!

I suppose this life at home with my children does make me question how I’d relate to the “real world” if I ever were to re-enter it. I question whether I’d forget my skills and quick mindedness. I wondered if I’d ever forget who is me as the role of Mommy in Little Boys Kingdom has quite defined me.

But, when the bride and groom hugged me at the end of the night, thanking me for “everything,” I knew I had done my job well, and that I am still very capable. Every aspect of the itinerary was followed flawlessly, from lining up the bridal party for the grand entrance to the timing of the bouquet toss. Yes, I am goooood.

When Loi asked me if I “missed it,” though, I had to pause a moment to gather my thoughts. If by ‘it’ he meant working as a wedding coordinator, yes. If by ‘it’ he meant being at work for long hours six days a week and never seeing my children? No way!

At the end of the day, my children come first and my personal fulfillment comes last. I wouldn’t say I’m completely selfless, however, because being with my children actually creates great personal fulfillment.

Nonetheless, I am still me, a girl who loves to sing, write, dance, daydream, read, talk too much, learn, and work. So, yes, I do miss work sometimes as it allows me to fulfill an aspect of me.

Do I want to give up my time with my little Bubba and Googleybear? Uhhhhh…………how about in small doses? Let’s start there.

I am definitely feeling the anxiety(of losing my children or of them getting sick if I’m not there)burn away a little and gaining the confidence to conquer the world, again. Really. Because of them, I feel like I can do anything.

Now, I must tend to my poor feet that withstood 8 hours worth of nonstop walking and standing in 3 inch heels. What was I thinking? Too eager to “dress up” again, I suppose.

My younger sister made this comment after noting how happy Justin was even after throwing up. Instead of freaking out about how gross it was to have all this gunk come out of his mouth and smother onto his (and Mommy’s) clothes, he smiled and scrunched his face in jubilation.

“He was probably thinking how much better he felt now that he’s thrown up whatever made him feel icky.”

There’s a thing or two to be learned here: 1) My sister is a genius 2) My Justin is a model of how life should be perceived–with optimism. He’s been through more physical trauma than I could ever imagine (he has the scars to remind us of it), been poked and prodded at by people who approach him with such friendliness (who can he trust?), has rotten egg smelling medicine (Captopril) injected into his mouth 3 times a day, along with other not-so-pleasant tasting medicines….Yet, he always has the endurance and spirit to smile.

There’s this picture I have of him a few days post-Glenn: his scar is deeply bruised, purple, he had just been extubated, there’s a (unexplainable) bruised eye, suffered a stroke. He turns to Loi’s I-phone, as if there were not a care in the world, and smiled, this lopsided smile with one eye squinting (because half of his face was affected by the stroke). It’s heartbreaking, but so beautiful. His smile is always a reminder to appreciate the what is, the light of every moment of every day.

Justin’s medical history–dates for surgeries, doctor’s appointments, important events, changes in medications, notes–is all completed and up to date by my recollection. The doctor’s notes and discharge papers are somewhat of a mess in a separate binder in plastic coverings. This, I will work on next. Then, I have to order his records from Children’s Hospital LA and OC.

Though this is such a daunting task, keeping up with all these dates and events and paperwork,I know I have to do it. I realize this when every time I see a different specialist, even while in the hospital, they ask me for Justin’s (very long) medical history. I can proudly recite it from memory. Everything that ever happened from the day I received news of his diagnosis inutero just rushes out like water from my mouth. “Slow down, there,” a GI Doc once said to me. Everything is important. Everything that has ever happened defines the Justin today. And, I think it’s important for them to know the little pieces to see the big picture.

But, there will be a time when my memory of such horrific, sad, unpleasant events will fade. Then, there may be a time when Justin must know his own history to repeat to his healthcare providers while I may not be there to do it for him.

It is hard for me to believe that he’s only 2 months shy of 1 year old. Judging by the thickness of his 3 ring binder and his extensive medical history, you’d think he’s an old man. We’ve been through so much with him in the past 10 months, I feel like it’s been years….not months.

Sure, I don’t know what the future holds. But, it doesn’t hurt to prepare for it, right?

“Just a little better? Or, better?,” Loi asked when I called to tell him the good news about Justin’s leaky valve.

Even if it’s a little better, it’s better. That’s all I need to know.

“Why is it better?,” asked my younger sister when I told her.

The little voice in my head (yes, I have one. Scary, huh?) kept pressuring me to ask the cardiologist the same question: “Why do you think the leakage has improved? How would you label the severity of the leak?” I looked at him, attempting to concentrate on him saying, “This is very good news. I’m very glad,” while fighting the voice in my head.

I’m sure we all want to know how and why this leak that I was told could never be fixed (but, could be improved after the Glenn) and could only be maintained with medication got “better.”

But, is why the correct question to ask? At this point in my journey, and with all our past experiences with Justin, I’ve come to realize that there is no true explanation for the way things happen the way the do for Justin. Asking why will not help me learn any more information that would allow me to fix his leak. And, if the doctor really knew why, he’d share some of it with me.

The leaky valve has gotten better. That’s all I need to know. That, and my belief in the Lord and his plan. I’ve prayed for that leak, I’ve asked, pleaded even, with the Lord for my child. I truly believe that it is a miraculous, divine intervention that has allowed this to happen. I have to believe that even if the material world may not always work in my favor, according to the way I’d like for it to happen, I must let it be, listen to my inner voice, the Lord, to guide me toward my given path. I must also allow Justin’s path to unfold as it should. Though the reward may not be immediate or even of this world, there is a greater picture, a grander scheme that shall be achieved.

For this moment, the Lord has allowed things in this material world to work in our favor. For that, I am thankful.

We just came back from the pharmacy. Which is only 6 minutes away walking time, may I add. I love our new place!

The pharmacist behind the counter commented on how little Justin is, not even a year old, and constantly on Amoxicillin.

“Why?,” she asked.

“He’s aspleenic,” I nonchalantly replied.

“Aww, poor thing.”

“Yeah, and he has some heart issues, too.”

“So, how is he doing?”

“He’s fine now, but his condition is not ‘fixable’.”

“How are you and your husband doing?”

“We’re fine, now. I think it’s most stressful when we’re in the hospital. But, now, everything is pretty normal.”

Now. Normal.

On our walk back, I contemplated about our meaning of normal, surprised at myself for realizing that we have gone back to a normal that does not involve constant, obsessive compulsive stress every single day.

Normal is:

1) Driving Justin to PT 2 times a week and setting aside 2 hours each day to drive to the sessions and to participate.

2) Giving medicines to a crying Justin every day, 3 times a day.

3) Taking him to see specialists: cardiologist, hematologist, neurologist, electrophysiologist. And, awaiting anxiously for “news”. Seems like every other week, but more like once every month.

4) Calling in for a pacemaker check once a month and listening to the click, click, click over the dial tone to make sure his pacemaker is working.

5) Monitoring how blue his lips get when he cries or while he is asleep or awake.

6) Wondering why he sleeps so much when he does…is it his heart? Or, did he just have a really productive day.

7) Keeping up with insurance and medical bills.

But, normal is also:

1) Seeing him smile, that wide mouthed smile

2) Listening to him ah, ah, ahhh and eh, eh, ehhh.

3) Kissing his chubby, chubby, cheeks.

4) Being amazed every day by his progress: jumping more and more in his jumperoo, lifting up his right hand, making new sounds, reaching for toys, fighting with his brother for a toy.

5) Waking up to see him smiling and ah, ah, ahhing.

6) Going to sleep to see his peaceful face.

7) Hearing his chuckling cry when he sees a bottle of milk.

Picking him up and holding his warm body against mine.

9) Our daily walks outside with brother.

10) Having him in our lives, everyday for the past 10 months.

Then, I catch myself, thinking don’t get too comfortable–things can change on a dime.

All my heart mama friends, you were right. There is a normal that we do return to after giving birth to a child with heart defects. There is a normal after enduring those sleepless, nightmarish nights at the hospital. The normal, of course, is never quite ever really normal. But, hey, what’s normal anyway? Boring, I think.

I find myself thinking about all our family and friends, too. Thanks for all your support. Without it, we would not have gotten through all the emotional turmoil.

They do not realize this, but I think about and pray for them everyday. I thank the Lord for guiding me to them and sit in complete wonderment of how they’re able to do it.

I struggle with my child because I need to; his very helpless life depends on me being there for him. But, these doctors, they’ve chosen this path to struggle with me, for these sick children, out of choice.

I wonder how it is that they can leave their work at the hospital or in the office. I wonder, for those doctors with families and children of their own, how they can bear to not feel what a parent of burden feels as they witness us crying, screaming, angry, sad.

I feel almost guilty for imposing my life and our troubles on them when I know they have lives of their own, with family, significant others, children. I know this because they tell me.

I recall the electrophysiologist at CHOC telling me that it’s OK to be a self labeled crazy psycho mom. He told me it’s OK to be that crazy psycho mom because I have reason to be and that even when his own child has a cold, his wife freaks out. It’s OK to worry, to want to do something because it shows that we care about our children.

The rounding cardiologist at CHOC walked us down to the catheterization lab for Justin to have to his temporary pacemaker put in. She stood by my side and watched as I told Justin not to be mad at me–I knew he was from the way he looked at me. I burst into tears, apologizing to him, because I felt such remorse for putting him through so much pain. She has 2 boys of her own, I later learned from a cardiology appointment. She has a life and her own set of child rearing problems (as does every parent. We were comparing our 2.5 year olds). How was she able to stand it, being next to this raving mom and not think of her own child.

Justin’s pediatrician sees me like every other week or at least once a month in his office. Then, we’d bump into each other outside of his work, also.

The surgeons all witnessed a mother’s pain as they saw me sniffling and heaving my shoulders up and down in a corner during their rounds. They watched me stand by his side and sing to him, talk to him, prayed for him.

The attending ICU doctors sat down and consulted with us about every major issue from extubation to running a PIC line. When something went unexpectedly awry from their advice, do they blame themselves? It’s not their fault…

My child is fragile. But, there is something fragile about these doctors, also. They may try to distance themselves, emotionally, in order to protect themselves, to perform. But, they are just these human beings living with God-given gifts to help heal the sick. As humans, tending to the sick, they are bound to encounter human suffering in a way that must resonate within in their own lives. How do they have the strength to deal with this every single day of their working lives?

Here, I come to Justin’s cardiologist, Dr. Michael Rebolledo. I must admit I have a certain affection for him because he diagnosed Justin in utero. I don’t know if he realizes how important it was to us that he was able to explain Justin’s condition to us that early on in the pregnancy. We were allowed so much time to prepare–emotionally, financially, with the insurance, and choosing where to have the surgery. He explained everything with such compassion, giving us this hint of hope that others did not. Giving us the news really was the best news we’d ever gotten because it gave us an understanding and some hope.

Yet, every time he sees us at a cardiology appointment, he looks worried. By the third appointment, I started to believe that this was just his demeanor, very serious. But, no, I’ve heard him laugh. So, then, I thought, maybe he felt like every time he saw us he was delivering bad news. But, it’s not bad news because it shows an understanding…and hope…Then, I thought, maybe he was trying to relate to us by not allowing himself to be overly cheery when we had a child with this chronic heart condition, with death so close to the door. Perhaps I am looking too deeply into this, but I worry about him.

These doctors are like family to me though they’ll probably never come over for dinner, even if I ask them to (dare I risk rejection?). They will always hold a special place at my dinner table because they have opened up their lives and hearts to save my child’s.

Here’s to Justin’s amazing team of doctors.

I would like to express my appreciation to these doctors. The best I’ve come up with was thank you cards and some chocolates. We also catered lunch and dinner to the CHLA staff the last time we were there. But, how do we do more for them?

And, if there are any insider views about being a doctor and how patients and their families affect your lives, let me know. I’m interested to hear.

Elijah Daniel Update: Good news is he’s back at home and is on track for surgery as scheduled. Not so good news is he still needs the surgery. Please continue to pray for his family, Mama and Papa Porta, and Baby Elijah Daniel.

Mama Porta of Elijah Daniel’s blog is not only heartbroken over her own child’s sickness and upcoming surgery, but she is also mourning the loss of her heart friend’s baby, Helena. It was only 2 months ago when I happened upon this little girl’s blog. Eagerly, I read from beginning to recent because I was so excited to find a child who was doing so well after her 2 heart surgeries despite some road blocks along the way. Just this past week, she had her third and overcame with “flying colors,” according to her parents. Within days, during recovery, she went into cardiac arrest. She was almost 2 years old.

I left the blog open on the computer and went to sleep with prayers in my head for all the heart babies of this world. Loi woke me the next morning with,

“The little girl passed away.”

“I know,” I responded.

“I don’t want to lose, Justin.”

Then, he hugged me. Over Loi’s shoulder I saw my little man waking up beside my big man, kicking his little left leg, up and down. I watched as he squirmed from side to side while rubbing his eyes with his fisted hands.

“He’s waking up,” I told Loi.

Loi left my side and turned to Justin who was then looking intently into his father’s eyes and smiling. Every morning, this is the ritual:

he’d wake up.

upon finding us, he would stare, bat his arms, and squirm until we acknowledged him;

then, he’d pull his legs in and scrunch his body in delight

and smile at us.

Our life with him on this earth has been a mere 8 months. Eight months–that’s only 2% of my entire lifetime. Yet, we have these endearing things with him, rituals, memories. Aside from my time with Nathan, everything else in my past pales in comparison to these few months that I’ve had with my boy. It is as if my entire life had been lived in a haze until he came along, and then I really started living. What will happen when this life leaves me? How will I have the strength to let go?

The longer we have, the greater the hope, the harder it will be…to let go.

You know the old saying, “It is better to have loved and lost then to never have loved at all”? Well, is it? Is it better to have all the years of getting to know my baby only to lose him? Or, is it better to not have had the opportunity to know him at all? Would miscarriage or abortion been easier…on all of us?

My decision at 19 weeks gestation was to give Justin the life he always deserved. The fact that he survived and was born to this life was a blessing, a miracle from the Lord. I cannot tell you if it would have been easier any other way. But, the way we see it, we got the better end of the deal because we got Justin.

Nineteen months. Helena’s parents had nineteen months with her. Oh, I can only imagine the memories they shared. Their grief is not one I can begin to understand at this point in our journey. But, I know with all that that child had given them, the love, the laughter, they, too, would not have wanted it any other way.

Please have a moment of silence in your busy lives, free from all your worries and endless thinking, and pray for this little girl and her family.

This past week, I worked on typing up a consolidated form of Justin’s medical history in his (almost) 8 months of life on this earth starting from the day he was born up to his latest cardiology appointment. I had the opportunity to steal 1.5 hours while Justin was napping (Nathan was with his Auntie at work), in which time I was able to finish only up to his follow up with cardiology after his LADDS procedure–that was done in his second month of life.

As I typed up the dates and the events following those, I could not believe how much had happened in such a short amount of time. I did not realize that Justin had been in the hospital for only 22 days after that first surgery–at the time, it seemed like forever. Each day dragged on and on and on like there was no end. Every subsequent day only felt like a continuation of the previous day. The sun would rise and fall, the nurses would change at each shift, and doctors and surgeons would make their bi-daily rounds. The world went on inside and outside of the hospital–people went home, ate, slept, worked, played.

But, for people like us who had children in the ICU, life did not go on…it stood still…until our children were out of the hospital. We did not know how to be normal, to breathe, to eat, to sleep, to think of tomorrow. We could not see beyond our very own child laying in that hospital bed. Nothing else seemed to matter, but him getting through that day and the day that he’d be discharged.

I remember an attending physician at CHLA telling us to go “get some rest” because Justin was stable and that there was a team of doctors there trained to care for him. He said he knew that this was easier to say for a person who did not have a child in the ICU, but assured us that we’d be doing everyone some good if we just went to get some rest. Another attending at CHOC offered the information that parents who spent prolonged time in the ICU had symptoms similar to those who suffered from post-traumatic war syndrome. “So, what are you trying to say?,” I asked. “You should get some rest,” she said. It was important to these doctors that our minds were fresh and our bodies were well rested to make crucial decisions for our child.

But, you see, when our child’s life was hanging by a thread, when every inch of his being depended on this already weakend organ, his heart, blinking almost didn’t even seem like an option. I mean, Justin’s heart literally stopped within a blink of an eye, without prior signs. So, to relax a little, or to sleep, even, was certainly out of the question. This was our mentality every moment we were in the hospital.

When we were on the road home to visit Nathan or when Loi would stop into work to see how everything was going, hospital mode followed us. Life around us continued, but this feeling of dread and end lurked within us.

We’re back to “normal” mode, and a month goes by terribly fast, now. I cannot believe that 2 months have already gone by since we’ve been discharged from CHLA. This is not to say we are not without glitches (like the fact that he chokes while he eats sometimes and arches in pain and threw up a couple of times. Oh, and I took him to the pediatrician the other day because his lips were bluer than usual), but we are certainly not in heightened combat mode all of the time.

Hospital mode is behind us and I do not wish to enter it again for as long as I can help it. But, living in the hospital is a reality, still, to others. Sick children continue to exist.

Just earlier today, a little 13 month old boy, Elijah Daniel, from a heart blog that I follow was unexpectedly admitted to the hospital for his extremely low oxygen saturation levels and cold/flu. His surgery not scheduled for another 2 weeks. But, it seems as though it may be bumped up to this week. I ask that as you pray for us to also pray for this little boy.

And, here’s an exercise for you all: Just as you’re ready to complain about the wrongs in your life (how you do not have enough money, wealth, recognition, achievements, time..things), take a moment to breathe and appreciate. Appreciate your freedom, your health, your company, your being. Then, all else will not seem to matter. For, it would be a terrible waste to realize how good you really had it only when you’ve already lost it.

There’s a specific reason why I don’t hold Justin when meeting with his cardiologist, Dr. Rebolledo–I tend to lose my senses. With the boy full of chubs on my lap, I get a little distracted by and a lot attached to him. I attended the cardiology meeting sans Loi this past Monday, so I had no one to hand the little bundle over to. So, as I brought up the sensitive issue of heart transplants to the doctor and my worry of how the timing of his condition may affect how well he’ll receive a donor heart, I started to stutter. It was embarrassing, to say the least. I think I was stuck on, “I don’t want…I don’t want…I don’t want….” for like a minute before finally blurting out something about how I didn’t want his condition to get so bad that it would compromise how well he’ll receive his heart and whether he’ll actually be eligible for one.

Dr. Rebolledo really is a nice man and didn’t even try to jump in to fill in the blanks for me; he just sat there patiently trying to listen to what I had to say. Help me!

It’s still too premature to discuss getting Justin on a list for a donor heart. The echo showed that his leaky valve and pumping action are in about the same condition (severe, mildly depressed) as his last echo a month ago. The doc just upped his Captopril and Lasix to help with his heart function and made plans to meet again in June (ahh!) for another echo and checkup.

If I thought about his leaky heart and the weakening of his pumping action all the time, I’d drive myself nuts, not knowing when his heart will just give out. So, I don’t…well, not obsessively, at least. Instead, I just look at his beautiful face and focus on the fact that he’s been making a lot of progress. In fact, today, he just started babbling for a good 5 minutes with me…just because! And, the fact that he’s here, at home, smiling and happy makes me happy, too. All I can do is take it as it comes…can’t think too much of the future. There are too many variables that will affect the outcome of his life that there really is no point in speaking of the future and the what ifs.

I continue to pray for miracles, though. Won’t you join me, too?