Saturday, August 30, 2008

ok so maybe the "cry it out" method is not for us

by orion's second nap, it was a no. he threw up twice and kept choking on his own saliva. so i took him out of the crib after 45 minutes and he just continued to play. for bedtime, i put him in the crib after he was already bathed and sleepy. he started crying immediately, then he had a different cry, and i realized he was banging his mouth on the crib! he started to do it harder, so i went in to get him to stop, and the crib was all bloody! talk about freaking out a mom. since he's on aspirin as a blood thinner, he bleeds much easier and longer too. it was so scary to see him like that. needless to say, he is asleep in our bed now. sigh....

at least he is not have a bottle the entire day today. we will see how he does tonight. he usually wakes up a few times in the night, and a bottle always gets him back to sleep. hopefully he won't need it anymore.

bo's parents are driving up as i type, and they should be arriving in a few hours. we will be seeing them in the morning and going up to stephen's for a little visit.

hope everyone has a great holiday weekend!

whoa, lots of changes at home!

now that orion is 18 months and becoming quite independent, we decided it was time for him to grow up. starting today, we are getting him off the bottle and sleep training. what does this entail? lots of crying and reminders that we, as parents, need to stay firm and consistent! we just experienced our first "cry it out" moment. before, when he had tantrums, we'd let him cry and eventually he would get over whatever was bothering him and he'd move on. we were hesitant to do it with sleep before because he had a tendency to vomit if he cried too much, and we just didn't want that. today was a big day.

orion's been sleeping in our bed with us. he refuses to sleep in his own. for his first nap today, we decided to put him in his crib, no bottle (he ALWAYS goes to sleep with a bottle. i know i know, tooth decay!). i was checking on him every minute to let him know he's alright and mama is here, but it seemed to make him cry more and more. after about 15 minutes of doing that, i just stopped coming in the room and instead would just talk to him from the hall. it didn't seem to make a difference, so i just stopped talking to him all together. i still listened for him in case he would vomit, but he was fine! after 50 minutes of crying and sadness, he finally fell asleep!! not too bad, i was expecting two hours of this. i hope it gets easier.

as for formula, our pediatrician said to start him on milk since he is pretty much caught up on his height (he finally made it on the chart!) and he is still following his own curve on his weight. since he has reactions to regular cow's milk (rash and vomiting), we opted to try goat's milk since it is high in fat and calorie content. he is still vomiting from goat's, so now i am researching what non-dairy milk has the highest fat, calorie, and protein content. this is a tough project!

now, on to potty training. he is showing a big interest in his potty, after all it does play music and does all sorts of things. he has been pointing to his diaper moments before going, so that is an excellent sign. he's sat on his potty a few times, but it's so hard to keep him still!

so many new changes at home, but it's for the better. it's definitely stressful, but i'm sure it will be satisfying and worth all the sadness and heartache once he's done with the training stage.

more updates later!

Tuesday, August 26, 2008

Big week: New date number 7, New Cousin, and our orchid is blooming!

The last two weeks, have been very good for O. He has been learning so much and eating so well compared to the weeks prior. We went into clinic at the heart center on monday, and Orion looked so good, and was so active, and his o2 sats were at 96%(when discharged from the last hospital it was in the 80%), that our cardiologist and surgery team decided to postpone Orion's operation another 2 weeks, to see if this energy and and eating was just a two week stint, or if he is actually getting better. The weeks prior to the last 2 Orion was tired all the time eating no solids and very grumpy (especially at night), all symptoms of his heart not doing so well. So the new tentative surgery date is September 23. If in two weeks, when we return to the heart center, Orion still looks good and his ecco looks like its getting better (there was a bulge in the wall between his right and left atrium showing signs that the pressure in his right atrium was high, this was, at the time, backed up with a cath that showed the pressure was indeed high), they will push back the surgery again. They don't want Orion to get this next operation unless he really needs to, and we totally agree!

On another note, Orion got a new baby cousin this morning at 4:40am! Marko Tomljenovic (son of Mick and Alice, Tawny's big sis), 7.4oz, from what we heard, he looks like his grandpa! We are so excited and can't wait to meet him.

Oh, and our orchid is blooming for the first time since we got it, despite our laziness to go buy it Orchid food.

Big Week!

Friday, August 22, 2008

Postponed... AGAIN!!!

September 9. The will let us know if there's anything sooner.

Thursday, August 21, 2008

Not enough CVICU beds...

We got a call about 5 mins ago from the surgery team, there's not enough ICU beds for O tomorrow. This means if he were to go into surgery in the morning, there would be nowhere for him to go after, which would not be good. Lucile Packard runs at 95% capacity all the time, so this is not a surprise, just a let down. But last thing we'd want is for an ICU patient to be sent to the step down unit too early, we know what that can be like, and its no fun.

The results: everything gets pushed back 7 hours and we wait on a phone call to see if surgery is still going to happen tomorrow afternoon. No solid food after 7am (instead of 12am) and only clear liquids until 10am. This is much harder since O wakes up at 8am and eats his breakfast usually at 9am. The lil guys going to be starved in the morning =(

Monday, August 18, 2008

Surgery moved again, but this time it's actually a good thing!

Quick and dirty: Tomorrow was going to be the big day, but we got a call from the surgery team today around noon, the date is changed (again) to friday 1st case... BUT ORION JUST LEARNED TO WALK YESTERDAY, he took three little steps and hasn't stopped trying since... so now we got a few more days to practice his new milestone.

What's going on here (long, usually means Bo's writing, i need to learn to get to the point):
My parents came up last weekend from So Cal to take care of some school stuff for my little brother at SFSU and Orion had a blast. As always O ate what seemed like 10 times his little body weight (the weeks before he was on a self-imposed diet of small amounts of fruit) and he also developed leaps and bounds. Saturday he said his first 3-sylable-word, BA-NA-NA! Sunday was even a bigger day. Sunday, while my parents were in SF, I was playing with O with his favorite toy, his guitar. I was holding the guitar strumming it, thinking of what was supposed to happen tuesday and I look up and Orion was on all fours in the middle of the room, stuck his but in the air,  pushed off the ground with his hands, and stood right up. It really didn't register with me that he just stood up on his own for the first time! He had this huge grin on his face, waiting for a reaction from me. I said to him, "what are you smiling at, are you up to som...." then it hit me he was nowhere near anything to hold on to and standing on his own in the middle of the room. I yelled "Tawny! Tawny! Come look! He got up on his own!" Tawny came in from the kitchen and saw him standing there. Orion let our a huge squeal of happiness (he's been squealing when he gets super excited). That's when he took three little waddling steps towards me (about a foot of travel) and then fell forward onto his hands. He scooted over to the guitar used it to stand up, so I backed up to give him some room, and he waddled some more towards the guitar. Since sunday afternoon, he's now able to turn (both ways, not like Zoolander), back up, and do squats. He longest travel was from the living room into the hallway, he backed up a bit (he overshot his turn) turned left into the bedroom, and straight to his toys (about 10-12 yards in total, we have a very small place). He tends to get over excited and looses his balance (like his dad), he only likes walking when there's an accompaniment of guitar playing, and if he can, he usually dives the last 1-2 feet to his destination (with his big head, this could get pretty dangerous). And just a few hours ago... he learned the word every parent wants to keep from their toddler, "NOOOO-no-no-no-no-no-no-no." (he says it just like that)

These last few weeks we've been on the edge of our seats. Getting ready, anxiety building up, and then starting all over again when the date is changed. Every time I think of O's upcoming surgery my heart starts racing, my stomach feels sick, and it gets worse the closer to surgery the date gets. I never knew that thinking about something so much can make you so tired, but boy it's draining! This is our first "planned surgery," our first surgery as an outpatient, all of O's other surgeries beside his first one at 5 days old were clinic visit->admitted->cath->surgery. It's hard to concentrate on anything else. The pace at which I work becomes greatly affected, and its worse when you work hard to clear a few days, just to find out that his surgery is moved again. We have also kept Orion from going anywhere for the last two weeks, avoiding germy areas, especially where there is lots of kids. Our fridge has been kept deliberately empty for the last week so that food won't go bad while we were in the hospital, but now I think we'll just go grocery shopping. So today, after hearing the news, we decided to get our mind of of things. In fact today we decided to take a family trip (the first one in about 3 weeks) to IKEA (of course being super careful of sick people, kids, old people, pretty much avoiding any people, and riding with the stroller's hood down)! It was fun, we got some planters for seed packets from the Lewis' and two little plants. Tawny picked one out for me, all crazy and all over the place, and I picked one out for her, strong, but cute and dainty.

Hopefully the date and time on Friday stick. The PA that called us to tell us the "bad" news said for sure friday 1st case, but knowing the way a hospital works (and this one runs at 95% capacity all the time), its not totally for sure, for one, they need to make sure there is a bed for him in the CVICU. Right now, we're a little relaxed. I think the anxiety will kick in about Wednesday or Thursday, but seeing Orion walk has taken our minds of the surgery for the time being (for me its now on better child proofing the house). Check back this blog... I am uploading a video of Orion walking (but its two file, 9 mins each, 64mb each, so it will take a while).

Friday, August 15, 2008

NEW date!

mark your calendars! orion's surgery is next tuesday aug 19 FOR SURE (that's also anson's bday, check out www.handsomeanson.com, a bday gift from bo, orion, and me). write it in pen!!! another surgery got cancelled, so they put orion in that slot. we don't need to do pre-op again either, just give him a very very good scrub the night before and show up in the early morning.

thanks again to everyone for all of your love and prayers - we all need them!

Wednesday, August 13, 2008

date

we finally got a date — friday august 22. though i don't know if it's completely for sure. i spoke with dr. reddy's assistant and she said the next available date is sept 22, but dr. reddy wants to try to schedule orion in next friday. let's hope this date sticks. we are also waiting to hear if we need to do pre-op again. i don't want to because last time, it took about 7 hours and included a lot of running around and going to this clinic, to that clinic....

now having a date, we don't have to be anxiously waiting on our toes anymore. even though we are still nervous about this surgery and have all the same mixed feelings we always do, at least we know when it's going to happen.

the last few days have been quite restless for orion since all the family has gone back home and he has no one but us to play with. i finally gave in and decided to take him out shopping so he can get out of the house. so far no sickness, hooray! it's getting really warm here too, especially with no A/C , so i may need to resort to some indoor stores to keep him cool.

bo's parents and stephen will be back this weekend, and dr. tina has no work and wants to visit. this will be nice for orion (and us too!). we love having visitors, even if it's by phone, email, or commenting on our blog! which reminds me....so many of you are visiting our blog, but we get only a few comments! we appreciate all the readers and would love to hear from you, any thoughts you have, or even if you just want to say hi. we love reading them, and they are especially inspiring and uplifting when we go through rough times during hospital stays.

anyway, orion is in bed early tonight after a long day of hard playing and no sleep! this gives me a lot of time for housework and maybe even going to bed early myself. good night for now!

Monday, August 11, 2008

not even close?!

just heard from dr. reddy's office to be told the surgeon is booked solid through september!!!! they need to sit down with dr. reddy and try to fit orion in somehow. this is really frustrating! when we first learned orion needed this procedure done, we were told they wanted to do it within 6 weeks or so. now that it has been delayed twice, we honestly don't want this to be postponed so late that it becomes an emergency visit to the hospital! we completely trust the team at LPCH and know they will make a timely decision. it's just hard on us to not know when it's going to happen and we are anxiously waiting every minute!!! we really hope to learn more soon, and we'll be sure to post an update. thank you to everyone for all your love and support through all of this :)

Sunday, August 10, 2008

ready to go, just in case

everything is packed and the house is clean. there is still a chance orion can be second case tomorrow (monday). i'd like to be ready if they call us in the morning and tell us to be at the hospital in the afternoon. i am sitting at the table listening to the whir of the dishwasher, sterilizing his bottles, cups, and utensils so i can bring them. bo and i honestly don't want it to be tomorrow night - we'd like to spend the day with orion and have more prep time, mentally and physically.

on another note, another cardiac family i met through a support group recently received wonderful news that their daughter is a candidate for surgery! i was so excited to read the news, their daughter has had quite a life so far, and i know she deserves many more years ahead. you can read more about the nelsons, the link to their blog is on our "links" list to the right. please send love and prayers their way too, they are a sweet family!

i am headed to bed. i've got a lot of fun activities planned for orion over the next days until surgery. i discovered a site for toddler activities which has given me some great ideas! need my rest for all the fun :)

Friday, August 08, 2008

no surgery date yet

we did not hear from anyone today, so we are pretty sure orion's surgery will be next week, earliest would be tuesday. hopefully we'll hear from someone on monday because we do not like waiting!! orion didn't seem to mind the change. he enjoyed his day with another playdate with lizzie and fun playtime with the aye family. we have a full house today, so orion will wake up cheery knowing that his grandparents and uncles are here.

we also haven't taken orion out anywhere for fear of risking a cold being caught. we can't have that right now!!! so we keep him at home, and i think he's getting restless not being able to go out anywhere. poor kid. he just wants to be a toddler - out and about at parks and all the normal daily things. hopefully soon.

i am pretty tired from the day today, probably more the emotional stress wearing us out than actual physical tiredness. bo and i both took a much needed nap with O today.

will post more as soon as we hear any news.

update

ICU is still full, so orion will most likely have his surgery scheduled for next week. they usually don't do procedures on weekends, but there is a chance dr. reddy will want to do it on saturday. we should hear from the team sometime today or early next week with a date.

that said, orion was ok to eat, and he was starving! his last drink of milk was at 5am, and he had a small dinner last night, so he was a hungry hippo! he's now enjoying his time with his uncles, and today will be a relaxing day. hopefully we will get word soon because we do not like waiting!!

bo's family has been staying at a hotel, but they are checking out today because they were going to stay at our apt while we were in the hospital. they are still sticking to the plan, so we are going to have a full house! orion will be so happy, excited, and worn out!

will blog again when we get a date :)

the day before

we spent the entire day playing and having fun. we had a sweet playdate with lizzie this morning that totally zonked orion out, then grandma and grandpa came over for some coffee and breakfast while orion napped. at noon, he had physical therapy, and they really worked him hard! 45 minutes into it, he decided to take a water break and pretty much rested until the end of the session. came home and grandma made some tasty burmese lunch and orion played some more. he's so excited and happy that finally there is someone around that really knows how to play the guitar. thanks eddie and grandpa! after all that playing, he needed another nap, and mama took one too. during that nap, we missed a very important phone call from the hospital! orion's surgery has been delayed again since ICU is completely full and there is no bed space. he can have clear liquids up until 10am friday morning, and we should be getting a call from the surgery team to get an update on when his surgery will be. i think that put me in a frenzy, more stress and frustration, so i ended up madly cleaning the house again. with the delays, i decided to just take things easy, let orion have fun with the family, and skip his usual routine of playtime, bath, then bed. he's finally down for bedtime with dad cuddling next to him while i still pack our stuff anyway in case we need to leave in the morning. right now, i think i'm on my fifth load of laundry for the day! just want to have everything taken care of so when we get back from the hospital, there isn't anything that needs to be done in the house.

i am actually tired, which is a surprise, since usually i can't sleep very well before any kind of procedure. i should take advantage of this moment and get some sleep! will post an update as soon as we hear from the team.

Monday, August 04, 2008

the big day is coming!

it's monday night, practically tuesday, and just a few nights left until we are headed back into the hospital. bo and i are getting very anxious, and we haven't had much sleep in the last few days. on the fun side, we've had lots of visitors to spend some time with orion before his big day. my brother anson and his son vincent came for the weekend, and orion had a blast! pictures to come. i really can't wait until we live closer to our family and orion can enjoy more regular time with his cousins. bo's family is on their way tomorrow. i'm not sure how long they are staying for, but i do know bo's mom wanted to stay through his surgery. there will be lots of family time, good food, good laughter, and happy playtime for orion!

the last week or so has been pretty rough. after orion got over his virus, he became very clingy and needy, and every night would wake up around 3am or so with lots of crying and sadness. the only thing that would cheer him up would be to browse the fridge?! but honestly, i was not up for hanging out in the cold kitchen with him looking at all the leftovers. eventually, after all the crying would wear him out, he would fall asleep. this would mess up the next day's schedule, and he has been like this for probably over a week now. i can't figure out what's going on in his head, but i really do hope it's a temporary phase! because mom and dad need sleep!!

not much else to report, except that we are still dreading surgery day. this will be a major surgery, something absolutely permanent that is irreversible. let's pray for a successful surgery with wisdom from doctors and strength for me and bo and wonderful support from our family and friends.