Wednesday, December 12, 2007

Orion's Getting BIG!

and so is his heart! his right ventricle is still growing and doctors want to give it more time to grow. his proposed january surgery was postponed until march/april, which means orion will be hospital-free for his first birthday! we are very excited and look forward to spending more time with orion at home. he will be getting another echo in february during his routine check-up, then a cardiac cath in march. this will be a two-ventricle repair for sure, and we are so happy to hear this great news. hooray!

we will be posting new pics soon!

Thursday, November 08, 2007

MRI On Thursday 11/8

orion goes in for an MRI tomorrow. we need to be in palo alto at 6am, which means we have to leave the house at 5am, which means we need to wake up at 4am! it's 130am now, everything's packed and ready to go. we got orion all cute and handsome for his big day with a snazzy new haircut. no mohawk this time, and he's still cute as ever.



orion just fell asleep around midnight. that's the hour that solid foods is cut off at. so from now until 4am, he can have pedialyte, which is like gatorade for kids. he's already woken up once feeling hungry, so hopefully pedialyte will fill him (i highly doubt it and expect him to wake up again in an hour or so).

other than that, he's doing great. we've packed all his favorite toys and will spend the morning with him, instead of our usual rush out the door trying to get everything ready. we look forward to hearing the results from the MRI and hope for the best.

Friday, October 26, 2007

Orion, A Gap Model?

it's 4:30am, and i can't sleep because i spent the last two days sleeping trying to recover from a cold. bo has been great taking care of orion, and i think i'm finally getting better. orion grows up so fast, some days we look at him and his face doesn't even look like a baby's anymore. we look back on pictures not that long ago, and he's starting to look like a boy. being the usual mom, i start getting sad knowing that he's going to start kindergarten soon, then he'll be graduating high school and moving so far away from us for college. and i'll be the crazy mom who will send him care packages...ok getting off on a tangent here.

overall, orion is doing so great and growing so well. his first two bottom teeth are coming out, which means endless days and nights of discomfort and crying. we distract him with cold pacifiers and noisy toys and that seems to break him away from the pain.

he is also developing fast! he's such a smart kid. he hasn't totally figured out the rolling over thing, but he's got some strong kicking legs and quick hands. he's becoming trouble, stealing anything he can get his little hands on. no crawling quite yet, but he's becoming more comfortable laying down on his own and having floor time (playing on the floor).

most recently, i set up a bay area gathering of families with kids who have heart defects. we all met at golden gate park and exchanged hospital stories and cardiac baby care tips. it was helpful to see kids older than orion and hear of all the stages they went through. it eased our minds a bit to know that what we go through is "normal." orion had a great time playing with the others, he was the youngest and the only boy, after all.

and of course, the gap casting call. it took us FOREVER to narrow down our top five photos, but here they are!
















it was pretty hectic trying to submit these photos. as most of you know, the contest ended oct 24. being that all his photos were too cute, we waited until the last minute to choose. by the afternoon of the 24th, the server was down, and we kept trying and trying until finally at 8:55pm, it was working again! bo quickly submitted, only to find out that the contest closed at 9pm. we were only successful at submitting one picture. but of course, bo does not give up easily. being the nerdy coder he is, he found a way to to upload photos directly to the server, and hooray, orion is officially a contestant! we can't wait to hear the results. we know even if he doesn't make it to the finals, orion is STILL the cutest baby in the world :)

orion's plans, other than being a gap baby: he has an MRI scheduled the beginning of november. doctors figured this is a less-invasive way to look at his heart. after that, he will have a cath in january and will undergo surgery shortly after that. bo and i are making the most of our time right now enjoying orion and offering him as much as we can. we decided it is important for orion to be around his extended family as often as possible, so our goal is to visit orange county once a month. our last visit gave orion many opportunities to bond with his grandparents, aunts, uncles and cousin, and he enjoyed every moment of it. we hope to let him experience that as much as he can.

on a side-note (but not less important), bo and i celebrated our first-year wedding anniversary. we actually celebrated while we were in orange county since we had a babysitter, and it was a beautiful day. we also celebrated casually up here at home, and we are still celebrating to this day!

"Love is what you've been through with somebody." -James Thurber

Friday, September 07, 2007

Welcome to Holland

When we tell people of Orion's heart condition we get all sorts of responses. Some people say sorry, some people say you can't tell he had two heart surgeries, some people call us brave, and some people ask how we are able to do it. It is very hard to describe to people what its like to raise a child with special needs. Raising a child like this is all we know. Both of us have never experienced raising a new child. Tawny was 400 miles away for the first year of her nephew Vincent's life. Bo was only 11 years old when his youngest brother Eddie was born. To us what we know of raising a child is hospital visits, close monitoring of his feeding, breathing, medications every 4 hours, and constant worry only slightly relieved by echocardiograms. All this "extra stuff," we imagine is not far from raising a "normal" child. We are very happy with Orion and all the "special" things we have to do for him—we wouldn't trade it for the world. It's all normal for us, because this is all we know, but raising Orion is like nothing we expected. Here is a very good excerpt Tawny found online while doing research on cardiac babies.


************* copied from tawny's myspace blog **************

Welcome to Holland

I am often asked to describe the experience of raising a child with a disability- to try to help people who have not shared that unique experience understand it, to imagine how it would feel. It's like this...

When you're going to have a baby, it's like planning a fabulous trip— to Italy. You buy a bunch of guidebooks and make your wonderful plan: the Coliseum, the Michelangelo, David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, 'Welcome to Holland'.

'Holland?!' you say. 'What do you mean, Holland? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of Italy.' But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine, and disease. It's just a different place.

So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there a while and you catch your breath, you look around and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, "Yes, that's where I was supposed to go. That's what I had planned."

The pain of that will never, ever, ever go away, because the loss of that dream is a very significant loss.

But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland."

author unknown

Sunday, August 26, 2007

Hows Orion Doing?

Ori is doing well. The last few weeks have been a worrisome time. Orion seems to have caught a cold which has resulted in congestion, sweating, difficult sleeping, and eating very little (half of what he usually takes). We were worried and took him into the pediatrician, and then the Heart Center, but all the Dr's could say was that it's not a heart related problem. That good news, but we still wonder, "what's going on then?" Hopefully it is just a head cold and developmental stuff thats going on, but like always, we are very vigilant when it comes to Orion's health. In fact, the operators at Lucile Packard's Heart Center, as well as the pediatrician's office have memorized not only our voices, but also our phone numbers and medical information! They don't mind, how can you pass up an opportunity to see "the cutest baby in the world." Of course they would be happy to see him. That's our opinion. What lifts our spirits now is how happy he is when he's not tired or hungry. We will leave you today with 2 minutes of our heaven.

video

Sunday, July 22, 2007

Great news from the CathLab!

The Cardiac Catheterization on the 16th went better than good. Dr. Perry from Lucile Packard CH was the doctor preforming the procedure. The results showed that Orion's Right Ventricle(RV) had a great amount of growth between the last Cath/Operation and this one. It was enough for the team of doctors at LPCH to conclude that Orion's Glenn Operation should be canceled to see if the RV continues to grow. They decided to re-cath him in 4-6 months and check on the progress of his heart. The drawbacks to waiting on doing his Glenn is that the "BT Shunt" he has now bringing blood from his aorta to his pulmonary arteries can create a large amount of pressure on them and cause them to become weak. In the cath, the pressures in the PA looked good. If his heart continues to grow at the same rate, it is very possible that Orion will have a 2 ventricle system instead of the 1 1/2 that was planned.

Recap: Surgery canceled, cath results were great, Orion will be re-assesed in 4-6 months for what to do next.

Saturday, July 14, 2007

Third Surgery in a week

Its Saturday morning and the family's sleeping. Its hard to believe barely over a year ago we found out Orion was on the way. I still remember standing in the bathroom of the old Irvine apartment, looking at those surreal two stripes together with Tawny. Time flies so fast. These last few months have been a time for learning, about myself, my baby, and my wife. I learned what true sacrifice is, the feeling of worry that only a parent can feel, and to be strong when your loved ones need you to be the most.

The dates are set for the next operation: On Monday, July 16th, he goes in for a pre-op visit for the Cardiac Catheterization. Then on July 24th will be his third surgery (a bidirectional glenn), with a pre-op visit on the 23rd. They won't know exactly what they will do until the Cardiac Catheterization. Give us a call if you would like to come visit us in the hospital, we could always use food delivered to us.

We've spent the last two weeks just relaxing with Orion. His personality grows each day and he's growing and developing even faster than before. His hair has grown so long, it no longer stays up on its own. His cheeks are so fat, we have to clean his neck rolls twice a day. His arms are now semi-deliberately controlled, but while sleeping, they still have a mind of their own punching him and waking him up. He is talking—A LOT. (In Burmese culture this is normal for people born on Wednesday evenings) He talks to the computer, his best friends (the Mobile), chandeliers, ceiling lights, toys hanging from his crib, and our favorite, his parents. His new thing is blowing bubbles with his mouth and forming the "p" sound. He loves his thumb in his mouth and watches it as he puts it in his mouth very slowly. He grabs everything he can make his arms reach, his toys, his ears, his other hand. Tawny has had to strip herself of all her jewelry so Orion won't rip it off her. He has the cutest laugh when we tickle him in his belly. He has a little blue "first teddy" bear that he loves to hug, eat, and sleep with.

We are, to say the least, apprehensive about going into the hospital this time. Orion is developing exponentially, and all these new things have happened in the last stretch he's been home. The last time we were in the hospital—although it was a much shorter visit than the first time—it was much harder surgery on us as parents. We expect this time to be extra hard as we seem to miss him even when he's asleep in the crib near our bed. The fact that this surgery is planned seems to make it easier to prepare for mentally and physically, we will know for sure when the time comes. Orion has started solid foods (rice cereal) and it's supplement feeding for him twice a day. He seems to take it in pretty well. He is still learning to sit up on his own and has a new found love for sleeping in his crib. He pushes off with his legs very hard now, and he can hold his weight up standing up for a few seconds. Hopefully his path to solid food and sitting up doesn't get off track because of the next hospital visit. We can't wait for him to start siting up so we can start potty training him. Every stage is exciting, except for the surgeries.


NEW pictures are posted here


Orion and his Bear and trying to eat his hand:




Orion and his first "solid" meal:

Friday, June 15, 2007

sorry for the late update

we apologize for the delayed update. if you ever see us blogging regularly then all of a sudden our blogs come to a halt, that means orion is recovering well and both mommy and daddy are very busy being his nurses 24/7. orion was only in the hospital for a couple of weeks this round, and he's been home doing great. upon coming home, he actually had a case of thrush (yeast infection in mouth due to being on antibiotics) and acid reflux. other than that, orion's been much happier at home and we have been busy trying to keep up with life!

all of us have been really busy. after orion came out of the hospital, we moved from mountain view to san francisco. we were still trying to get back into the groove of things, at the same time trying to unpack and explore our new habitat. in the midst of this, my uncle (tawny's uncle) passed away, and we all took a trip down to orange county for his services. now we are back in town and beginning to settle into our new place.

orion is all grown out of his newborn clothes and weighs in at 9 lbs 13 oz. he graduated from his newborn-sized diaper while in the hospital. he talks like crazy and won't stop smiling. he's learning to sit up on his own, but still thinks it's funny when he falls over on his side. he loves all of his aunties, uncles, grandparents, and cousin (yes, just one cousin). he misses a full house, and we should be visiting OC again soon. this time, we'll let you know we're coming.

Monday, May 07, 2007

ahhhh...breathing on my own.



orion's lovin life without the breathing tube. doctors took it out at 10am this morning, and he has started bottle-feeding. he is wide awake when he wants to be, and he's being his old self again. loves to move around, look around, and enjoys the scenery. he happily watches baby einstein on tv, he's never seen tv before since we don't have one at home. he is improving so well, doesn't feel much pain and isn't on any narcotics anymore. the only pain reliever he's on as needed is tylenol. what a trooper. he's taking big steps towards full recovery.

orion was on oxygen just as a precaution. doctors have been slowly weaning him off of it. he began at two liters, went down to 0.25 liters, and is now on room air (i guess this is the transition stage?). i'm guessing the prongs will come off of his nose in the morning.

now that he's pretty active, bo attached his mobile on the crib. he really did miss his little buddies, he spent quite some time conversing with them :) he gets a lot of rest in between playing, and he's slowly returning to his usual self. i've been watching his saturation levels, and they dropped a little bit, so now he is back on oxygen again. hopefully he will overcome this hurdle and be able to have good levels on his own. i'd be sad to have to bring him home on oxygen. he's crying more now, especially during diaper changes and when he's hungry. we are starting to see his personality again!

well, orion is going to sleep, and i'm ready for a nap.

"i don't like being here, when do i get to go home?"

Saturday, May 05, 2007

our strong boy



orion is doing GREAT. he came out of surgery last night around 9pm, and he's been in CVICU since. he still has his breathing tube in, but it will most likely come out tomorrow morning (much much faster than the first time around). once that's out, we wait 6 hours, and he can start bottle-feeding again! i was surprised, but very happy that he is recovering well. of course, the first 48 hours after surgery are critical, so we cautiously watch his progress. he has three chest tubes this time, and he still has an NG tube to pull out fluids and air from his stomach (he had a bit of blood in there yesterday). he's looking pretty puffy from all the fluid retention, but he's on a lot of diuretics that is helping him rid of it. he likes to move around a lot, that's how we can tell his sedatives are wearing off, so the nurse has to give him more. the first things he moves around are his arms, we think those are his favorite limbs. because of this movement, he's got what looks like a brace around his arm so he doesn't punch himself like he usually does at home :)

we really hope his recovery is faster this time. i'm guessing three weeks. he's so much more stable than the first time he had surgery. doctors closed his chest up immediately after surgery, so it seems we are going through the steps quicker. we can't wait to bring him home.

bo and i are doing okay. we went home last night to sleep, and we got some really good, needed rest. i recovered well from food poisoning yesterday, i think i ate some undercooked eggs from the hospital breakfast tray. we are also trying to figure out when we are moving into our new apartment, bo would like to do it while orion is in the hospital so everything will be ready and situated when it's time to come home. we can't wait to move into our new place. it's more spacious, has lots of room for orion to learn to crawl and walk around, and we have a little backyard that i know orion will love. there's a lot to see around the city too, which will be great exposure for him. bo's parents are still here, they are heading home tomorrow. chris and sara have been visiting regularly too. today, they came before we got to the hospital, and bo found them in the waiting room, texting away.



bo's mom would like to come up again this coming weekend, and anson and his phamily want to come too. that will be mother's day weekend!! us mommies will be spending it all together in the hospital :)

hopefully tonight will be another uneventful night. keep sending your thoughts and prayers his way, we really hope for a successful recovery so we can bring our little baby home.

VIDEO: check out the video of orion being burped. he really likes to bob his head around :)

mr. bobblehead

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Friday, May 04, 2007

In OR

orion went into the OR at 330pm today. we are in the surgical waiting area, we should expect to hear from dr. reddy around 11pm tonight. this morning was full of anxiety because he was scheduled to go in at 9am. orion was having so much fun yesterday and this morning, playing with grandma and grandpa, checking out all his new toys from grandma, and just laughing, smiling, and having a good time. it definitely wore him out and he slept most of today. we couldn't feed him past midnight last night, so there was a lot of fussiness and crying from being hungry through the night. i stayed up all night, holding orion and watching him sleep.

now we are here, waiting for him to come out. it's a lot harder this time around because we've become so attached to our son. we miss his cries, laughs, smiles, and coos. we are all praying and hoping for a successful surgery, a speedy recovery, and a happy return of our little boy.

Wednesday, May 02, 2007

just waiting

orion is doing okay. he sweats a lot now when he eats because his heart is in overdrive. he cries a lot too, probably because it's paintful or uncomfortable. poor baby. he gets lots of rest here though, so we are happy about that. grandma is here, bo's mom drove up yesterday. he loves her singing and talking, and he especially loves that she holds him all day and night. what a lucky (and spoiled) kid!

we are anxiously waiting for friday to come. doctors will not know what kind of procedure they will perform until they are in the operating room and they observe his heart. the plan is for them to map out all the options before orion goes in, so when they open his heart, they can make a quick decision on what's best for him. it's possible for them to do the glenn procedure this time around so he will not need to go through another surgery again, but it depends on how his heart looks. they normally don't do this procedure at this young of an age, but we'll see. we are confident they will do what's best for orion.

still waiting and still exhausted. there are no beds in this room (we are sharing with 3 other patients), so bo and i take turns sitting with orion. i usually take the night shift so bo can be bedside in the morning when doctors do rounds. last night though, neither of us got that much sleep because bo went home to do some work (his laptop is broken - :( boo hoo), and i sat with orion till early morning. i finally got some rest at 6am, but got kicked out of the lounge because the staff wanted to clean. bo is trying to stay awake, waiting for a phone call from a guy he is buying a new laptop from. i will probably go home sometime today to clean up and check in on the apartment, they should have fixed our leaking bathroom ceiling this morning (finally).

okay, time for another EKG....

Tuesday, May 01, 2007

finally, an update PART 4

good news is, everything went well in the cath lab. bad news is, they were not able to open up the patch large enough, so orion will be going into surgery this friday. we did not expect this, so we are having a tough time absorbing all of this. we figure, orion will go into surgery, recovery time will be a few weeks, then it will be time for his next surgery (glenn procedure), then will recover for another few weeks. by that time, it will probably be july! so we are already planning to stay at the hospital from now until then. we don't think orion will be discharged in between surgeries.


that said, we are praying for orion to get better and heal quickly from this so we can be back home again.

which brings us to this: we signed a lease for a new apartment in san francisco because we thought it would be more enjoyable for all of us. we didn't think we would have to be at the hospital anytime soon, but now that we are here (and for a while too), we aren't sure what to do. we'd like to keep our mountain view apartment because it is close to the hospital and will be convenient for us to have family visit, get rest, pick up any necessary items, etc. so we may try to sublet our SF apartment for several months because we do still love that place and hope to live there for a few years. it has a very homey feel which is exactly what we need when it's time to come home. plus, orion can be around more people, be visually stimulated by a more city-like environment, and be exposed to my family that lives in the city - that way, his vietnamese will be better than mine :)

until then....

Monday, April 30, 2007

finally, an update PART 3

orion is in the cath lab getting his procedure done. the patch that was placed to allow blood from the heart to the lungs closed up, so doctors are going in with a camera to take a look at it, and they may be able to fix it without open-heart surgery. we are in the waiting room, orion will be done between 6 and 8pm.

things are happening quickly, and we hope orion is doing great and will be out soon.

finally, an update PART 2

so the cardiologist did an echo (heart ultrasound) today. orion's right ventricle is functioning properly, in fact, too well, that too much blood is going out and the patch the surgeon placed is not large enough to allow all this blood to flow through. this is causing high blood pressure in the right ventricle, which is overworking the heart. the cardiologists and surgeon are going to discuss the options on monday and will decide what the best solution is. the three options are: 1) go into surgery to make the patch larger (this would be done next week); 2) do a catheterization and balloon it (this is not surgery); or 3) wait until the second surgery (early june). the problem with option number 2 is the heart muscles are still recovering and it may be best not to interrupt the fresh sutures that are there. option number 3 will come into play if his numbers are looking good. option number 1...well, that's just another open-heart surgery...

this problem has occurred over time, probably around the time we were discharged. the symptoms he was having have nothing to do with his immunizations, so mannings, be sure to get little mason vaccinated :) the only side effects orion had from his shots were low-grade fever (his temp didn't go above 99), soreness in his legs where they gave him the shots, and feeling worn out and tired. that only lasted 2-3 days.

we should get a final decision by tuesday, hopefully it won't be too traumatic.

Sunday, April 29, 2007

finally, an update!

it's been a busy month and a half, and things have been pretty crazy. we brought orion home on march 23, and he's been loving life at home. no nurses to bother him, no poking with needles, no doctors waking him up in the middle of his naps (though he likes to wake us up in the middle of our naps!). he came home with the NG tube, and we fed him via that for about two weeks. after putting on lots of weight and eating well by the bottle, bo pulled the tube out with permission from our cardiologist.

orion was doing great, up until a week ago after his immunization shots. he was showing unusual symptoms, such as sweating, breathing a bit heavier, lots of congestion and coughing, poor feeding, and major crankiness (he's normally a pretty mellow kid and doesn't cry much). he had nights of endless crying, and we just weren't sure what was going on. after a few calls to the doctors, we realized it couldn't be typical symptoms of the immunization shots. friday afternoon (april 27), we called our cardiologist again, and he recommended we take orion to the ER since the clinic was going to close soon. we rushed to the hospital, brought him in, they ran a test that showed possibly not enough blood flow to his heart muscle. they wanted to keep him overnight so they can monitor him and run another test the next day. saturday came around, and again, they wanted to keep him for another night, so now here we are on sunday. orion just had his third test done, and we are waiting for results. orion is sleeping, bo is sleeping, and i'm exhausted from having restless days and nights in this place.

other than these last several days, orion has been doing great. he smiles at us, laughs, loves to kick his cute little feet and punch the air (and sometimes accidentally his face) with his strong arms. he loves to eat, loves to sleep, loves daddy's singing, loves mommy's arms, and absolutely adores his fun mobile (thanks auntie kim and uncle nic!). he enjoys trips to ikea, trader joes, and target, and he especially likes the car rides on the way to these places because daddy drives so fast. he hates wet diapers, diaper changes, not being wrapped up tight enough in his blanket, not being held, and he definitely hates waiting for his milk to be warmed up. he gets grumpy when the pacifier falls out of his mouth, and he cries when the mobile turns off on its own. orion is a great little guy, emotional in all his glory.

in addition to taking orion to the ER, last monday i had to take bo to the ER. he was having the same chest pains he had when he last went to the ER. fortunately, he was not admitted to the hospital and will just need to follow-up with the appropriate doctors. so we've had quite a week for the aye team, but we are all staying strong and getting through these hurdles one day at a time.

Monday, March 05, 2007

We finally get to meet our baby boy for the second time

First off... sorry for the lack of an update. We left everyone hanging in the climax.

But, if you read further you'll understand why. This has been an emotional week, again.

Our ("our" meaning our friends, family, and benevolent strangers)...
Our prayers continue to be answered, Orion is on recovering, and recovering well.

Thank you to our family and friends and each other for helping us stay strong.

One week ago:


Monday "
right after surgery":

One week ago we were in the Surgery Waiting Room waiting for the news that Orion's surgeries were successful and everything went as planned. Sure enough. Dr. Reedy, Orion's Heart Surgeon, came out to the living room, greeted us graciously, and said, "The surgery went very well, we were able to patch the Pulmonary Valve area open, and put in the BT Shunt. We were able to do it without letting the heart stop beating. We did have to leave his chest open to allow some fluid retention to go down and put less strain on the heart." We followed him into CVICU (Cardiovascular Intensive Care Unit) and saw our baby... He looked like a bomb went off in his chest. Dr. Reddy took us to see him before he got totally cleaned up and before the nurses were even done setting him up in his bed. Blood was all over his body, and where there wasn't blood, there was some sort of tube or wire coming from him... and he was moving a lot. CIVICU wasn't ready for us to see him. We were quickly sent away while they finished cleaning him up.

The second time we went in to see him, about 30 mins later, he was all cleaned up... sort of. Now our friends, Justin and Lisa Manning (who we met at NICU, their son had gone through heart surgery just week and a half earlier) warned us how scary it looked when Mason(their son) came out of surgery, but even prepared, it was overwhelming.

Orion lay there and was being switched form O.R. Anastasia to different sedatives and pain killers. He was moving. More than we have ever seen him move. He had two tubes coming out of him from the lower cheat (about 1/4" diameter) draining fluid from around his lungs and chest. He had IV lines in each foot, one arm, and two special ones that went straight to his heart. He had two wires also coming from his heart called pacer wires. He still had the breathing tube down his mouth, throat, and into his lungs. It was connected to the ventilator, that took breaths for him in case he got too sedated and forgot to breathe. On top of all that he was so swollen that he looked like the Michelin Man. His eyes were puffy and everything looked round.

The hardest thing to take in was the 2 inch gaping, 6 inch long opening in the middle of his chest. It was covered with a thin "second skin" that was transparent. We could kind of see the heart through the clear sheet, but mostly, its just the chest tubes and blood that's visible. see our pictures in the Orion's gallery...

It was almost unreal. It took a couple hours and into the next day to settle in. He came in and out sleep, and occasionally we saw his eyes peek out into the world. Before this... the last time we saw his eyes was the few seconds we got to hold him after birth.


Wednesday "
chest closure":

The next two days we watched him shrink. His diuretics went to work as he filled a container the size of himself in 48 hours. His levels continued to be consistent and on Wednesday afternoon, they decided to close his chest up. He was very stable and they closed up his chest on Wednesday, it was kinda scary waiting... They said it was going to take and hour and had us step out. Two hours later they were still not done, so the receptionist told us she would call us from the parents lounge when they were done. We waited 3 then 4 hours... I got really worried, thats when Tawny went in to check (she just woke up from her nap). Apparently the receptionist went home 10 mins after she talked to us and Orion was done with the closure for quite a while. What a scare! My first taste of what my parents went through when I never called home and I was out late...



Thursday-Friday "sleep and that annoying breathing tube":

Poor kid. Orion slept for most of Thursday. They started feeding him 3ml/hr of breast-milk for the first time. His first meal! That night they said he was scheduled to take out the breathing tube at 12pm friday. To prepare, they cut off feeding him, and had to take him off the sedatives to make sure he was breathing on his own. Once the sedatives started wearing off, he was gaging on it every 15 mins. It was heart-wrenching to watch. Then when 12 rolled around, the Doctors said, "they found some fluid around his lungs (hiding in his "back rolls" I'm sure of it), so they will hold off another day while they try and get rid of it. Back on the sedatives... zzzzzzzzz


Saturday-Sunday "His Face! & Grandparents Weekend":

Sat morning, they said that all the doctors are booked so he will probably have to wait another day to get his breathing tube removed. It restricted his movement and kept his upper lip permanently in an elvis position. We really wanted to get it out. He was ready, no more fluid, breathing on his own, but no doctors?! Then 12pm came around and someone comes by the bedside, "He's getting his tube out in 20 mins." Tawny didn't want to watch, but I did. A Doctor stood there while nurses took the tape holding it off, made him cough, and pulled it out while he was coughing. I guess the doctor is there in case he stops breathing. But when they pulled the tube out, Orion cried for a second, stuck his tongue out, moved his lips around, and then cracked a little smile! "That's my son!" is what I thought. They also took a chest tube out and one of the IV lines going into his heart.

We finally got to see his face unbostructed for the first time since birth.

Afterwards, He had the smallest cry (because of the breathing tube), most of the time you can't even hear it from all the beeping, but the nurse said that most babies don't even make a sound for two or three days, so he's doing pretty good.

The weekend was when both Grandparent sets were visiting. We got to hear how to take care of baby advice all weekend... how fun. Good news was... comfort food galore.


TODAY


Today Orion is doing good. He has a build up of Lactic Acid in his blood, so he is getting medication for it. We ran into this problem when he was born, and they fixed it with a blood transfusion. I think they might do the same. Hopefully tonight he gets better so tomorrow, he will get his last chest tube out and last IV line going to his heart.

THEN I WILL FINALLY GET TO HOLD HIM FOR THE FIRST TIME, AND TAWNY WILL GET TO BREAST-FEED FOR THE FIRST TIME!

Monday, February 26, 2007

Orion is in Surgery

Orion went into surgery today at 1:40 pm, a little more than an hour ago. Five months of anticipation has led to this moment. We were lucky to find out at 18 weeks. The shock to go through so much( Labor, Neonatal ICU, ventilators, respirators, tubes and wires coming out of our baby, and open-heart surgery) in such little time is unimaginable. We are lucky to be here at this hospital, with the best specialized care, from the nurses to the administration. We are lucky to have the surgeon that we have: the best in the world. But, as most people in medicine know, it takes good doctors, a fighting patient, and a little luck to get through situations like these. Thats what we are hoping for, a little luck.

His heart problems are worse than prenatal anticipation. He has some metabolic problems, and other complications due to both his heart condition and the meds saving him. Originally, the diagnosis before birth was that his right ventricle was to small and it should be just bypassed. The work of pumping blood though orions lungs and body was going to be left to the left ventricle. At birth his left ventricle, although pumping fine, was abnormal. It was not in a condition to handle supporting his whole bodyand lungs as previously planned. The muscles in the LV were "non compacted" and formed abnormally. So now the plan changed: they are almost forced to save the right ventricle, open up the missing valve area, and hope it will grow to a useable size so it can at least do some of the pumping work. That way, if the left heart does get weaker after time because of its abnormality, it will not be the only one carrying the load. But this also gives us hope, because Orion will now have a chance at a 4 chamber heart.

Despite all this, we are in high spirits. Orion has received so much love. Not just from his immediate family, but from everyone who has heard his story and ours. Their love and support will carry us through this, it will carry Orion through this.

Right about now, Dr. Reddy's team should be starting the first incision of the chest cavity, and I will start to pray for nothing to go wrong with the procedure and that things will be set in motion for a healthier heart. We love you all, as this is the moment we have all been anticipating. Please pray for our baby boy.


Orion going into the O.R.

Sunday, February 25, 2007

orion is here!

orion is 4 days old today. this is going to be a short, quick blog to give everyone the update. we will get into labor details and other things later.

he will be going into surgery tomorrow, monday feb 26 around noon. everyone please pray for him. after the catheterization done on friday, they found new things with his heart they did not see during the fetal echos that were performed while in utero. they still saw the problem with his right ventricle (pulmonary atresia), but now they see a couple of things with his left ventricle. the doctors have changed their surgery plan and will now try to get all four chambers of the heart working so he won't be dependent on just his left ventricle. this is just a quick explanation, bo will write more in detail.

we thank everyone for their thoughts and prayers. this is really a tough time for us. bo is the strong one of the two of us. actually, orion is the strongest of the three of us - he keeps us in check :) and i probably worry too much and can't help but feel this is a sad time for me because our little one has to endure so much in such a short period of time. i know he is at the best hospital under the best care, but i can't help but wish i could be there every time he cries.


----Update---- 2/26/07

You can read the story of orion's birth on our gallery picture descriptions: it almost takes you hour by hour though her short 11 hour labor (5 in the hospital). Make sure you click on the big pictures, that's where the story is.


Saturday, February 17, 2007

Orion is growing!

Orion weighs in at 5 pounds 12 ounces. There is not much growth from now until delivery. Hopefully he will break 6 pounds??? Since my last appointment two weeks ago, I gained 4 pounds, totaling exactly 30 pounds since my pre-pregnancy weight. We scheduled our induction date on March 7 @ 730am. Doctors say they give it about 24 hours for labor, so hopefully Orion will be born on March 8, the day we have chosen as his birthday.

The non-stress test was another meek one. Orion was asleep most of the time, like he was last week. Last time, they had to wake him up with a buzzer - it causes a vibration and also has a buzzing sound. He immediately kicked at the touch of it. This time around, we did not want to use that buzzing tool, so the doctor tried to jiggle the belly and clap her hands, but no such luck. We waited it out for a few minutes, and I decided to jiggle my belly myself. He was up in no time! Heart rates flying to 160, which is exactly what they look for. Poor guy, I know he will not remember getting his sleep disturbed.

The ultrasound was uncomfortable. Orion was turned in a direction where they could not see him clearly, and he was buried way down in there. Doctors seem to think the harder they push the instrument down into your belly, the better view you'll get. I don't believe in this theory, but maybe it's true? All I can say is it's very, very uncomfortable. Anyway, after all that, they were still able to see his heart and note his right ventricle is still small. As for the picture they always send us home with, all they could get was a foot. Pictures to be posted later, they still need to be scanned in.

We went to Target yesterday to get the baby essentials we needed - baby wash, baby lotion, freezer bags (for pumping), diaper rash ointment, and baby clothes. Since walking is such a feat for me, Bo suggested I take the little electronic wheelchair thingy for a spin. That thing actually moves faster than you'd think! Bo liked it because he could walk at a regular pace now instead of really slow so my walking could keep up with him. We liked this :)

Now that pregnancy is almost over, it's time to prepare for the first years. Since I will be home, I want to make the best of my time and provide the best I can for our family. Though it is months away, I plan to make homemade baby food - healthier and saves money! We scored a brand-new Cuisinart SmartPower Duet Blender/Food Processor on Craigslist for cheap! Now I can start puree-ing away!

This weekend is Tet so we are heading to the city this afternoon to spend it with my family. Will update when we get back!

Wednesday, February 14, 2007

Happy Valentine's Day!

bo is actually getting sick (i am finally getting over my cold), so he is sleeping right now. we did manage to have some good Valentine's food throughout the day, you can read more about it on my new blog Tawny's Kitchen. check regularly for recipes and anything food-related. i love to cook, what i love more is to find new recipes, experiment, and have bo taste-test them. baking is what i like best, but i still love all the other elements of cooking. i welcome all of your input and ideas if you'd like to share.

on to baby stuff, tomorrow (thursday) marks three weeks left. we have three appointments scheduled: regular doctor visit, NST, and an ultrasound (yay!). orion should be weighing about six pounds now, so we'll see how he's measuring tomorrow. he also feels like he's breech. not necessarily right-side up, but he seems diagonal. his legs are to the right side of me, and his head is to the left side of me. he's been this way for quite a long time, and if he stays this way, the doctor will try to move him into the right position or a c-section will be necessary. we're really hoping he'll move into the right position soon!

the apartment: everything's unpacked and almost ready. his crib has turned into a coat rack, so i'm trying really hard to change this habit. we finally installed the car seat bases in our cars so they are not sitting in our living room anymore. we went to the sunnyvale police station to get them properly installed. bo's office area is still incomplete, he has more things he'd like to do to get it set up. our ginormous printer is sitting on the floor, we haven't figured out a place for that yet. i still have more baby clothes to wash and get organized in the dresser before orion comes home. we still want to decorate the walls more, but we've been so busy trying to figure out financial stuff. that nasty stench is still around, we think it's from the rain gutters that are right beside our front door. the crap smell is strongest right after rain. our cabinet under the kitchen sink smells the same, it must be rotten food from the last tenant since there is no garbage disposal. our bathroom ceiling is leaking again. the landlord patched it up before we moved in, but we guess they patched up the wrong area. i'd like to have the leak and smell gone by the time orion gets here.

Tuesday, February 13, 2007

The start of 2007

I don't know even where to begin.

Thanks:

Its been a week and a half since the event and I still think about it at least once a day. It brings a smile to my face and a warm feeling in my heart, knowing there are so many people that care. After I smile I usually say a quick prayer in my head to thank everyone that came, were involved and those that couldn't make it but sent their love and prayers (sounds cheesy but its true). I don't think anyone heard one negative thing about it.

To My Friends:

This past year has been a tough one for many of my friends. 2006 had to be the most... Emotional year of my life, and for many of our lives. A loss of two friends (Jerry and Jo), friends loosing friends and relatives, cancer running amuck, and me escaping death because of a Dr.'s hunch that I had a blood clot in my lungs (PE, probably the most physically painful experience of my life.) made 2006 seem inevitably the worst year ever. But then there was our engagement and marriage. I am now married to the girl of my dreams thanks to 2006, and also have a baby on the way to put the "cherry on top." John Pham (not related to former Tawny Pham) made a good point in that, it was the first time in all this chaos, Orion's heart was the first thing we could do something about.

We decided HEARTISTY marked the official start of 2007... with so much hope, love, and celebration of friends and family.

A special thanks to Ali, Kenny, Jenn, John, Anh, Kim, and Dominic for making HEARTISTY possible.

This is the story I will tell Orion.

You should thank you aunties and uncles for all that they have done for you. They made it so we could see the best Dr.'s and get you the best care to make your heart work right...

I remember calling Uncle Kenny up one day about 2-3 months before you were born and saying, "Hey lets do something to raise some money for Orion's surgeries. Maybe like a poker game or something to raise a couple hundred dollars. Anything little bit will help."

So I don't hear from him for a while, but apparently U Ali, U Kenny, and U John (U=uncle in burmese pronounced "UUU") started talking to set up a game—at some location—that can hold enough people to raise a worthwhile amount of money. Auntie Jenn said we can use her Aunt's Art Gallery for place to hold this game. Then U kenny and U Ali decided its not worth it to go through the trouble to make such little money. Someone suggested (I think maybe U Ali)—that we throw a benefit concert with the proceeds going to your heart surgeries. U Ali said to U Kenny, "You take care of the event and I will take care of the entertainment."

So 5 weeks before the event, we had no idea what it would turn out like. We had no idea what it would look like, what we would do there. U Kenny, U John, Auntie Anh, U Don and his girl, and also Papa (what I want to be called) and Mommy all met at BJs in Brea, to shoot some ideas. We thought of making T-Shirts, selling bracelets, showing art there, just a whole bunch of ideas.

Originally the date was for Feb 10, but the next meeting where U Kenny and Papa and Mommy and Auntie Kim and U Dominic met at Coffee Bean, it got changed because we needed to be near your hospital by then. We were afraid you would arrive early and we wouldn't be near the hospital.

So anyways, for the next 4 weeks your Aunties and Uncles met once a week planning and discussing what the show was going to be like. In between the meetings they would sell tickets and send out invitations and collect donations. You Mommy and I were too busy taking care of moving and hospital stuff to spend much time on your fundraiser. Auntie Anh even had to plan your baby shower for us. The last week was when everything came together. And it came together soo smoothly allot due to U Kenny's meticulous planning, his right hand man U John's Leg work. Monday, U John and Baba(relative older than your dad) Zarni picked up the stage they rented. We asked for a two foot stage thinking it would be hard for performers to get up and down the stage but U John opted for a 3 foot stage. We gave his sooo much trouble about the 3 ft stage, but in the end it made a big difference, because the performance room was packed, and the extra foot allowed people in the back to see what was happening on stage. Friday Baba Anson brought this gigantic huge banner for the backdrop of the stage. It was worth well over $1400, but one of his clients was nice enough to donate it. That night a bunch of of went there to clean up, move stuff around, and put up the stage and banner. The next morning mommy wasn't feeling too good, so daddy stayed home with her. Meanwhile all your Aunties and Uncles went to work, some as early as 6-am. Setting up tables, decorations, sound equipment, and refreshment tables.

When mommy and I arrived that night, the place was unrecognizable. There were candles and lights everywhere. People were all dressed up. It was amazing. Over 350 people showed up to support you and your heart surgery, and each and everyone of them had a good time. We met soo many nice people there that were very concerned about you. They wanted to help because they know you were bound for great things and that you were truly a blessing to us. You should be very thankful of your Aunties and Uncles who have done so much for you, even before you were born.

Wednesday, January 31, 2007

almost settled in

we are moved into our new place in mountain view, about 10 minutes from the hospital. Bo is actually driving back up here from la as we speak because he had a doctor’s appointment at ucla today. Poor guy is driving us back and forth all for our health.

My last appointment went from a one-day thing to a 3-day ordeal. They wanted to monitor orion’s heart for at least 12 hours, so we stayed in labor and delivery from 5pm until 8am. Hospital beds are very uncomfortable and bo slept in a “bed” made up of two chairs. By morning, orion was as happy as can be.

this saturday is heartistry, and we can’t wait! It’s amazing to see all of our family and friends gathering for this special event with so much support. I have an appointment tomorrow, so we’ll be driving back down to la after that (again, poor bo).

We forgot our camera, so I’ll have to upload pictures from our drive up later. I wanted to take photos of my birthday dinner, but no camera, so I’ll just briefly describe. Bo knows how much I love food, so he made me a very special dinner: a hot pot that consisted of chicken broth, dumplings, spinach, asian meatballs, and carrots. The main entrée was rice and chicken marinated with soy sauce, rosemary, sage, thyme, basil, and parsley. For drinks we had ginger ale (still feeling nauseous), and I baked white cupcakes with vanilla frosting. Since this was the first time using the oven, it was a bit of a disaster. It took two hours to cook the chicken, and I messed up a batch of cupcakes. Dessert was more like crumbs of cupcake.

The apartment is really cute. We are working on making it personal and cozy, so we will paint the walls next week. Bo hung up two paper lamps, and we bought an air purifier to get rid of the sewage smell we still have not found the source for. We went to ikea plenty of times in the past several days and scored big in the as-is section. We got a foam mattress (same as ours at home – I hate spring mattresses) and a $300 bed frame for $75. What a steal! people get crazy and greedy there. one of the employees found slats for us that was sitting on a shopping cart "unattended." she said we deserved it, so she took it from the cart and gave it to us. the man who supposedly "owned" these slats fought us for them and stole it off our cart while we were in line to buy them. people should know if they are in the as-is section, they should never leave their cart unattended because people like us will make friends with the the ikea employee and have them on our side. anyway, we had to buy brand new slats.

We also bought the crib courtesy alice, and it’s all put together and looking so sweet. We got two big floor rugs to keep the carpet from getting too dirty, and bo is bringing up tonight some of our pieces of furniture – tall dresser, nightstand, and dining table. We’ve unpacked most of our things, the only stuff left is kitchen stuff (we went from a full kitchen in my old studio to a more compact kitchen at this studio) so I’m not sure where things will go. We also have a box of computer stuff that I don’t know what to do with yet. I have three wacom tablets, what am I going to do with them all??

I was really excited to move here into our own place, but some days I miss everyone. Talkative mom, screaming brothers, barking dogs. I think we’re going to get an isight so family can keep in touch and watch orion grow up.

So the plan is, immediate family will visit when orion is born. I am going to try to cook freezable meals so I don’t have to worry about food when he’s here. I know my mom will definitely stock the freezer as alice will too. My aunt who lives in SF has also offered to provide food for us. Man, I really wish we had a full-size fridge, but that’s okay. Food is food ☺

I promise to update this blog more often. Especially with pictures too, blogs are not as fun without pictures.

5 more weeks!

Friday, January 12, 2007

stanford, here we come!

the last few weeks have been pretty crazy. we've already visited stanford twice, and we're close to making our home there. our first visit was very successful. three full days of meeting doctors, surgeons, and getting tours of the hospital. all the doctors are great, and we are very confident little orion will be taken care of. since our doctor visits are now every two weeks, soon-to-be every week, we are planning to move up north by the end of january so we don't have to drive up so much anymore. and we just got our apartment! we'll be living in a studio in mountain view, about 15 minutes away from the hospital. we're hoping to start moving some things in next week since we need to be up there for our appointment anyway.

we're all really excited to start fresh in our new home, and we also have to thank chris and sara for being such troopers and viewing these apartments for us. we couldn't have gotten this place without them :) we look forward to starting our new beginnings out there, and we're happy to have the support from our family and friends that live there.