Home of the Four Trans

I’m done with being left in the dark about Justin’s condition.

To my disappointment, I have learned that I cannot depend on the doctors to tell me what to do with this heterotaxy child of mine. I mean, he has A LOT of issues in addition to his heart defects. Recall, Justin has:

• malrotated intestines
• left-sided stomach
• mid-line liver
• a hanging pancreas
• a portal vein that crosses over his duodenum

The malrotated intestines and left sided stomach were confirmed by an x-ray. But, it was not until his pediatric surgeon, Dr. James Stein, went in to perform the LADDS procedure (for his malrotated intestines) did he find the other anatomical problems.

Since then, I’ve always wondered what other issues Justin might have that I do not know about. I wonder, what type of tests can be done to see if he has any hormonal or metabolic issues. I wonder if he has any other anatomical abnormalities relating to his lungs, kidneys, and reproductive organs.

No one has addressed these issues while the doctors seem to focus only on his heart. While I understand that his heart defects require the most urgent care in order for him to live, I also question if the rest of his body’s abnormalities affect his heart as well. I wonder, if we address the other issues, would he have a better chance of living, and would the doctors gain better insight about his heart and its function.

I joined an online support group to learn a little more from other parents who have experiences with children with heterotaxy. Through their experiences, I learn what questions to ask my doctors, which doctors to see, and if Justin’s feeding issues are “normal,” and how I should address these problems.

With the online support group, I suddenly don’t feel so alone in the issues that I have to deal with Justin. I gain a little a bit of hope through their insight.

At the same time, I am opening a door to more heartache as I expose myself to stories about those who do not make it. However, being a part of this support group is like being a part of a group of friends. This symbiotic relationship allows us to lean when we’re weak and provide a shoulder when we’re strong.

It’s 3 o’ clock in the afternoon, and I’m just taking my first bite of food all day. It’s Jack in the Box egg rolls, fries, and a chicken fajita pita. Not exactly healthy gourmet, but I’m too hungry to even care.

Justin’s eating issues (yes, they’re back) are wearing me out.

Justin hasn’t been eating for the past week, and it’s gotten worse. Today, he’s nibbled down a total of 5 oz of formula, and I had to practically force feed him half a bowl of cereal. He’s lost half a pound in the past 3 days, according to my digital scale. Every time I bring a bottle to his mouth, he’d shake his head from side to side, keeping his mouth tightly shut.

I spent the past three days trying to make an appointment with GI for him. The earliest at CHOC was in October. After speaking to the nurse, though, they scheduled him in for next Thursday. His failure to thrive is concerning to them. I called Children’s Hospital of Los Angeles. I wanted their doctor’s opinion, also. They called me back today, and scheduled me for an appointment two weeks out.

Just by looking at him, you wouldn’t suspect anything is wrong. He smiles, laughs, does his physical and occupational therapy exercises, rolls around, and overall is just content. I’m sure the reps on the phone and the doctors think I’m crazy, that I’m just looking for trouble.

Truth is, the reason why I’m not freaking out as much is because he’s so content. But, the fact that he’s not eating, and is now losing weight has me very concerned. I’ve learned that when things get bad, they do so very quickly. So, I’m anxious to get him to a doctor to get some tests run to see what’s going on in his little body.

Please pray that he’ll be able to sustain until his appointment with GI next Thursday (that’s a whole week away!), and also that whatever is causing his ailment may be found and fixed.

Thank you!

“Every day is my birthday!”

“It’s OK, Baby. Maw-mee’s heeeeere,” I crooned to him while changing lanes. “We’re almost there.”

We had just exited the freeway on the way to pick up Nathan from Lifetime, and Justin woke up from his nap. What started as a croaky whine turned into a painstakingly loud “aaaahhhhhh.”

Naturally, I freaked. This kid does not cry unless he’s hungry or in pain. Having been fed an hour earlier, I ruled out the hungry thing, and started wondering what was strangling or inflicting pain on my kid back there. The sun? A toy?

We were stopped at a red traffic light. At this point, the smooth, loud “aaaaahhhhhh” turned into choking ah’s, and I had visions of his lips turning a deep purple as he tried to gasp for air in between his screaming.

“Justin! Listen to Mommy. We are almost there! Stop crying. You need to breathe!,” using my stern voice hoping he’d just listen (smart trying to reason with a one year old, right?).

In the midst of doing so, I missed the entrance to the parking lot of Lifetime. Argh.

“Justin, calm down. We’re almost there,” I pleaded to him.

Finally, a few blocks down, I turned into a shopping center. As soon as I parked the car, I jumped out, with the engine still on, to come to my little boy’s rescue.

I opened the back door to sure enough find that his lips had turned a deep purple. His full head of black hair was drenched in sweat.

I’m even more freaked. His heart was working too hard!

“Baby, I’m sorry,” I began as I unbuckled him, “I love you so much.”

He was pissed. He responded by thrusting his body upward, like a little superman trying to break through the chains of his car seat buckles and escalating the tone of his cry.

“OK! OK! I got you, Baby,” I said as I scooped him out and let him free.

I placed him on my shoulder and his entire body melted into mine. Awww.

After 5 minutes of studying the leaves blowing in the wind, and the patrons dining in the outdoor patio of a restaurant, I decided to give putting Justin in the car seat another try.

“Justin, we have to pick up Nathan, OK? That means you need to get in your car seat (I point to the car seat). Is that OK with you?”

The corners of his mouth turned into a frown, and his eyes squeezed together in preparation for more wailing.

“Justin,” I scolded him, “it’s only another 2 minutes.”

He studied the fluttering leaves of a tree completely oblivious to my words…ignoring me.

I had no choice but to put him in…screaming.

As promised, two minutes later, we were in Lifetime’s parking lot, with me pulling him, purple lipped and all, out of the car seat.

“No, Justin. This is not acceptable,” I scolded him. “You cannot cry like this in the car. You need to breathe!”

Smile.

Scrunchy-faced smile.

I’m in trouble. This kid is learning from his brother.

His body glistened against the sunlight peeking through the blinds of our bedroom window. His hair, still damp, matted against his forehead. He laid on his back with his arms waving in complete disharmony as Mommy fawned over him. He is most irresistable after a bath, as he shows of his rolls and battle wounds.

I play a game of peek-a-boo with him. I place a small wash towel over his face and ask, “Where’s Justin? Where’s Justin?” He’ll pull the towel off his face to reveal a little mischievous smile.

For 9 months since he was born, I wondered if he’d ever learn to do anything other than look at me and smile. I wondered if he was there. All he’d ever do was stalk me with his eyes and smile when I caught him looking.

Now, at 12 months, he comprehends how to play a game.

Not only that, but he can also wave on command to “hi” and “bye.”

He cocks his head to the side in curiosity.

He fights with his brother (note the position of his hand in the second picture after Nathan overpowered the book).

He shows expression in his face (and tolerates tummy time much better now with no crying).

I am a mother beaming with pride!

In related news, his right arm is improving, as is his the function of his right hand (both affected by the stroke). In physical therapy sessions, he is learning to get up on all fours and stand with the goal of being able to get around on his own by Christmas (his therapist is a very optimistic person), either by crawling or walking. His right leg seems to be affected also, and is much weaker than is left, so he does not bear weight as well on that leg. But, no biggie. It will improve with time and practice…and possibly a leg brace.

He favors his left hand, and likes to hold things in it–toys, food, clothes.

When he sees someone around him eating, he’ll start smacking his lips together.

When we give him food in his hand, he just looks at it, and continues smacking his lips together. He doesn’t quite understand that the food needs to go into his mouth first.

There is no doubt that he’s behind his peers in his age group. The therapist’s evaluation reads that he has the skills of a 5-9 month old infant…mostly because he cannot use his right side. But, I do not dwell on this. As you can see, he is showing progress, and is such a light to have around. And, he is still around.

Really, what more can a mother ask for?

P.S.–the pics are for you, Megan!

From the dining room, I could hear Nathan scream from the living room, “It’s not funny, Pee Wee!,” as the little rascal responds with a grunted, “Ah!”

“It’s not funny, Pee Wee!,” Nathan repeated himself.

“Ah!”

“It’s NOT FUNNY!,”

“AH!”

“What’s going on over here, boys?,” I asked as I quickly rushed over to see if Justin was getting beaten up as he usually is (and likes it) by his older brother.

“Pee Wee is yelling at me!,” Nathan complained, then turned to Pee Wee to say, “Stop it, Pee Wee. It’s not funny!”

“AH!,” Justin responds with a scrunchy faced smile.

“See, Mommy?”

“Ah-aaaaa!,” Justin replies seemingly in satisfaction as he wiggles his entire body with a huge smile across his face. Apparently, he’s found a way to “beat” his brother in a game of “I am big, and you are small.”

In our house, every single one of the hundreds of toys is Nathan’s, including those Justin received for his birthday. Any time I give Justin a toy, Nathan would come and say, “No, Pee Wee! This is not yours.” Then, he’d stash it on the floor of his room. And, every time, Justin would look at his brother like, “Are you crazy?,” but have little coordination or mobility to do much else about it. So, he’d just sit there like a helpless lamb as he watches his brother walk away with the toy. But, today, Justin gave his brother a taste of his own medicine.

Justin had a jam packed schedule on Thursday. Here’s what happened:

8:30AM: He woke up for his feeding, played, took a bath, dressed, and was stuffed into the car seat.

9:30AM: We left the house for the Neurology clinic near CHOC.

10:00AM: We arrived at the clinic. Justin watched some older kids play on a table toy, ogled a smoothie and smacked his lips as he watched the 9 year old girl sipping it.  We engaged in some conversation with the little girl and her mother about Justin’s chubby cheeks and their medical conditions (she has Cerebral Palsy and had experienced 2 episodes of seizures in her lifetime. Scary!). Justin kept smiling and waving his little hand (he’s learned how to wave “hi” now).

10:20AM: We get a spot in the examining room. Justin was weighed (17lbs, 4 oz on a digital scale with clothes, splint, and diaper on) and measured (26.5″). I mentioned that that the measurements at the pediatrician’s was different, but that it’s different wherever he goes. So, close enough, I guess. Either way, he hasn’t grown much.

10:30AM: Neurologist walked in. She asked if anyone was concerned with how small he is for a 12 month old. Well, I’m concerned, but his pediatrician doesn’t seem to be, and he doesn’t see cardiology until September. She said I should maybe talk to GI and a dietician to get him fatter. I told her that I expected him to be small, but I am more concerned that he’s not growing much. Will call GI. She assessed him, and these are the results:

• He seems to be cognitively on par for his age
• His hand seems better improved, but he still needs to continue with therapy
• He needs to see an orthopedic surgeon for his right foot that seems to bend to too far to the right. The surgeon can decide whether to fit him for a brace now or later to keep that ankle in the right position. This will be used only when he’s in therapy learning to walk, or when he starts walking. I’ve discussed this with the therapists before and they thought he was too young. Having a brace on this early may hinder other muscle developments. Neurologist felt it would be more beneficial than not.
• He may or may not regain full function of his right side. She cannot predict this. But, he will definitely be left hand dominant, and his right hand will just be a helper hand.
• She would like for him to get an MRI to confirm the reason for stroke, but because he has a pacemaker in, this is not possible unless the pacemaker technology improves to where it will be able to tolerate the magnetic field.

11:45AM: We left the Neurology clinic to feed Justin in the car. He fell asleep while drinking because he was so tired.

12:00PM: We headed to a nearby Barnes and Noble to kill some time before having to head back to CHOC for physical and occupational therapy. I picked up some books, passion fruit lemonade tea, and a 2 square inch block of rice krispies marshmallow treat. Read a little and had a few moments of me time before heading to the line to pay for our things. While in line, I also impulsively grabbed 3 boxes of assorted Godiva for his therapists because we’ll be leaving them soon (boo!) for another program funded by the California Children’s Services (CCS), which is free. Justin continued to sleep in his stroller.

12:30PM: We left to head back to CHOC for his 2 hour therapy session. Little Boo didn’t even cry once.

3:00PM: I fed him in the car in the parking structure. He tapped the bottle with the plastic bottle cap, amusing himself while he gulped down the bottle…a whole 3 ounces.

3:15PM: While Big Brother Nathan was in the care of “Lifetime” (he was taken to “work”), this allowed us some time to visit Great Grandma (G-Ma) before having to pick him up.

3:30PM: Cried upon seeing G-Ma because he probably thought I was going to pass him over to another person, again. He just wanted some Mommy time. Justin sat in my lap, eyeing G-Ma, smiling, batting his arms, waving his left hand, scrunching up his face into smiles while we talked, then, finally allowed her to hold him. She was thrilled to be holding the little miracle baby. She encouraged me to pray, and to continue to believe. The fact that Justin is here, today, is already a miracle in itself, she reminded me.

4:45PM: We headed out during rush hour to pick up Nathan.

The next post will be about how he coped with this busy schedule!

OLYMPIC SWIMMER

After a good two hours in the community swimming pool, I told my son, “Just five more minutes, OK? Then, we need to go home.”

“O-kaaay,” he replied.

Five minutes passed, and I reminded him we needed to go.

He negotiated: “How about five more minutes. I need to practice.”

“Practice?”

“Yeah. So I can swim fast!, fast!, fast! like the guys in the Olympics!”

DOCTOR

Loi likes the idea of Nathan becoming a doctor if he ever wished to become one. Preferably a cardiologist. So, one night during dinner, in the midst of one of our conversations with Nathan about his well-check visit, Loi asked, “How about you become a doctor, Nathan?”

“Yeah!,” he responded with his eyes lighting up and his body straightening up.

“What does a doctor do, Nathan?,” I asked him.

“Like this,” he said as he pretended he was holding a stethescope and putting it to my heart.

Awww.

DRUMMER

A lone, yellow plastic chopstick on the floor sparked Nathan’s imagination. He ran to the kitchen looking for the other half. Then, he said,

“Mommy, come here.” I followed. “OK, you play like this.”

A slow, bum, bum, bum followed against the goose down pillow that he had thrown in the center of the living room.

I did not follow his rhythm, but played a quicker beat: ba-dah, ba-dah, boom.

“No, like this Mommy.” He grabbed the chopsticks back and repeated his rhythm.

“Very nice, Nathan.”

“Yeah, I think you should buy me a drum set for my birthday.”

“A drum set?!?!?,” I thought, with visions of chaotic noise overtaking our house. Not a good idea. Where did he get this idea from? How did he even know what a drum set was?

What else was I to do but to be supportive. I didn’t want to knock down his opportunities before he even gave it a chance. So, I responded with,

“You already got a present for your birthday. How about we go to the music store and you can play on the drums there.”

“Oh, yeah! That’s a good idea.”

Phew!

For those who don’t already know, Nathan and Justin both had the same due date, August 15th. Interesting, right? However, Nathan came out naturally on the 13th, and Justin was induced on the 8th. I’ve always wondered if I had allowed Justin to come naturally if both my sons would have the same birth dates.

Anyway, now that their birthday extravaganzas are over, we are back on track with medical issues. On Friday, they both had their scheduled well checks. To minimize the amount of loading into the car and driving to the doctor’s that we would have to do, I decided to schedule both their well checks for the same day.

Here are the results:

Nathan weighed in at 33 pounds and measured at 38 inches tall, placing him at 60th and 64th percentile, respectively. I’m very happy about this since Nathan is known to be a picky, lazy eater.

Of course, Nathan is not Nathan without his usual quirks. Of all things, he was most afraid to get on the scale to be weighed and measured. He backed his butt up against Loi, arching his back, refusing to get on. So, we resorted to the following measures: First, the 5′8 office assistant had to get on the kid-sized scale himself to demonstrate what would be done once Nathan gets on. No harm was done. Yet, Nathan Boy still refused. Second, Loi tried to carry him on, but he’d pull his legs up, just as he did as an infant when we encouraged him to stand. Though Loi was able to get on the scale, with Nathan wiggling all about, no success was made with the weighing. I returned to the examining room to wait for him, knowing my child well enough to realize that you cannot force or coerce him to do anything. He just has to decide for himself if he wants to do it or not. Soon after, he comes running into the office to find me, and agreed to me carrying him on the scale to be weighed. As for his height, he allowed the pediatrician to walk him to the scale, hand in hand, without a single complaint or wriggling, to be measured. Loi and I stayed back at the examining room confused by our son’s moodiness. So, after all that drama, he had one booster shot. And, guess what? He didn’t make one peep…only a scrunchy face. Typical Nathan.

Justin weighed in at 16 lbs 11 oz and measured 27.5 inches. This was all very concerning to me because that means that he only gained 5 oz in 3 months, and barely grew an inch. His weight is no longer following the curve, but is below it. So, basically, he hasn’t gained any weight.

The pediatrician, Loi, and I discussed his feeding habits at home, and about his recent cold, and teething, and they came to the conclusion that his inability(?) to eat, or lack of eating has slowed down his weight gain. I, on the other hand, am worried that it may be something else. In the past, he’s been able to gain at least 1/2 a pound a month. We are going back to fortifying the formula to increase his caloric intake. We are encouraged to feed him a lot of formula, versus spending too much time on eating solids, although he should have both. We were given the OK for feeding him diary and egg products, but still no nuts or seafood. And, for those wondering, he still needs to be on formula since it will provide him with more calories and vitamins than regular cow’s milk. His ability to digest the cow’s milk is another issue we need to look out for. It seems he may be on the (expensive) Good Start formula for another 6 months.

In a month, we are scheduled to return to the peds for a weight check. Argh. Feedings and weight gaining are such big and frustrating issues. However, I hope that it’s nothing involving his GI tract, although I would like to see a GI doc for his opinion on why Justin may be eating less and throwing up more, now.

Anyway, will keep you posted. Thanks for checking in on our little ones.

August 13th marks two milestones in my children’s lives.

First, it is the day of Nathan’s coming into this world. He is my firstborn and represents true love. I never knew I could love anyone so much until I met him. From the moment I held him for the first time after 10 months of incubating him, 12 hours of labor, and 27 minutes of pushing, I knew I had a special boy on my hands. He turned his head to respond to my mom on one side, and my mother in law on the other when they called him. He also gave me eye contact. What kind of newborn who had just undergone the trauma of entering the birth canal does things like that? Mine, apparently. Nathan has never failed to amaze me since then. Upon meeting, most people think he’s 4 or 5, but, he’s now only 3. He knows how to negotiate. For example, I’ll tell him, “If you eat all your food (he is a lazy eater), you can have 5 m&ms.” He’ll respond with, “How about 10 m&ms,” then raise up both hands to show me 10. Nathan is a person you have to experience to understand how amazing he is. Words cannot describe how humorous and intelligent he is. I thought there was not possibly any more room in me to love another child the way I love him. I thought how unfair it would be for our other children (and if we should have any more) because I would not love them the same way.

Then, Justin came into the world and proved me wrong. We’ve jumped through firey hoops with this one, and would do it all again for him. One year ago on August 13th, Justin had his first open heart surgery that sent us all on an emotional rollercoaster ride. Now, a year later, he is a bouncing bundle of joy who just smiles, smiles, smiles.

My plan was to take the boys to the Aquarium of the Pacific in Long Beach to celebrate (they both love watching the fish swim around and around). But, of course, Nathan had one of his 20 minute tantrums because he was “tired”, and did not want to get in the car. Instead, he wanted his milk in a bottle (yes, he’s still on the bottle. He knows how to drink out of a cup, but loves his bottle because it’s comforting), lay on the couch, and watch CARS. I had packed everything into the car, with one remaining item left to load (Nathan), and he threw everything out, including his favorite white blanket and pillow, soiling it in disgusting dirt, germs, and wood chips (from one of Loi’s projects). I put it in the laundry closet. More crying ensued. Meanwhile, Justin was in my arms, staring at his brother like, “What the heck are you doing?.” There were moments when Justin even flapped his arms in excitement, thinking all the rukus was some game. When his brother did not respond to the arm flapping and squealing, he got confused and started to cry. I loaded Justin back in the car in the garage (to keep him away from the noise), and tried to calm Nathan down. I gathered all my patience up, bent down to his level and told him that I knew he was tired, and that I loved him. I gave him a hug, and that (finally) made everything better. By then, it was already 4 o’ clock, Justin was tired, and I was exhausted, so we all took a nap together.

An hour later, I woke up and prepared the house for our family to come over for Nathan’s 3rd celebration (so spoiled!). Loi came home with the food (prime rib and sides. Yum!) and built Nathan’s present (a bite sized CARS computer desk). After a 3 hour nap, Nathan woke up to opening presents from his aunties. After dinner and cake, Nathan received his gift from us that was hidden under a blanket.

We celebrated Justin’s anniversary by saying “Happy Anniversary.” We didn’t want to take this day away from Nathan.

We have had more parties this year than ever, with each of our boys celebrating their birthdays three times. But, I’m not complaining. I’ll take planning a party to planning a surgery any day!

Here’s to a healthy year for both my boys.

Apparently “technology” is not my middle name. I am a little lame when it comes to uploading pictures to our blog, hence the lack of pictures. I’m still trying to figure out how to use the iPhoto application to upload pics in an efficient manner. Uploading each one by one is a little painful. Over 500 digital images are trapped in our camera waiting to be revealed. I will give them a chance, don’t worry.

In the meantime, here’s a quick update in the life of the FourTrans:

-Justin’s teeth are finally coming in! First the right bottom, now the left. So cute! Lucky for us and him he did not experience any symptoms of teething pain. I was just beginning to believe that his smile would be forever gummy (seriously!).

-Justin had his first birthday party with over 150 attendees with a King of the Jungle Safari theme. It was awesome. Justin also had two heart friends there.

-We experienced our first “vacation” together as a family of four at Disneyland and San Diego for 5 days.

-Upon our arrival home, Nathan got sick and experienced some asthmatic symptoms for several days. We gave him inhaler treatments. He still has a runny/stuffy nose, but has improved.

-That week was spent gathering ideas and materials for his CARS themed party, as his party was scheduled to be that coming Sunday. I hit up Target and Michaels for inspiration and returned home with awesome party favors/activities. We ordered a jumper, ice cone machine, cake, and food.

-Friday, 8/8/08 was the opening ceremony of the 2008 Olympics in China, which we all gathered around the TV for. More importantly, we celebrated Justin’s official birthday with a gathering of family, cake, a birthday song, and presents.

-Sunday was Nathan’s turn to party (for his birthday)! It was mayhem, but I think kids like that sort of chaos where they’re allowed to run around and be free. The jump house was the hit of the party. Justin slept through most of it.

I will post pictures when I have more than 10 minutes of free time. The kids like to keep me busy. Boys!