new and improved and now tube free!

i know, i know, i havent updated in so long, but we have been busy folks over here in the Q to the A.
the dupuis household has been up to a lot, see if you can guess who did what :)

taking all waking feeds by bottle
pulling out am's ng tube
taking ALL feeds by nursing or bottle -- oh hell to the yeah!
undertaking massive house projects that we didnt have the extra time or boundless youthful energy to do, but that look great now if we do say so ourselves :)
killing massive amounts brain cells from excessive paint fume inhalation
making new friends
repeating mama and baba
guest lecturing at the University of Washington about non-disjuncture to genetics classes......and, killing it!
losing all superglue scabs
calling the police on some guy trying to break into the house while we were home
being told you're supposed to call 911 for that
jumping jumping jumping
getting an a+ in recovering from OHS from the cardiologist
tasting tasty things like pears and pizza
planning massive remodels that cant be done for a while
contemplating going back to work
hosting animal dance parties
farmers marketing with friends in juneuary (hate that term, but it's just too apt right now)
contemplating going back to school
realizing how much better life is post OHS and how happy and blessed we are :)

not many pics for you cause my camera battery ran down and i just found the charger, so we'll go with cuteness over quantity

this my boo

this how she roll.
in case ya'll didnt know, am speaks with a bit of an ebonic bent and frequently quotes rap lyrics
she crazy. she throws in words like axed into everyday general conversation
must be all the movin 92.5 she demanded to listen to in utero

her momma speaks with a bit of a twang and frequently says ya'll.
must be from being raised in southern california and our time in new york....that makes perfect sense.


anyways, in am's words gotta say it was a good day, err, weekend rather

we:
learned our son might be a little racist...... but then again sikhs do carry knives
were brought the most delectable chicken curry ever
were brought the most delicious pastries and lattes in seattle
had a playdate with max's sister girlfriend
went to the park 482 times
started a wee bit o potty training
fed our girl 250 cc's by bottle, hey shorty its ur birthday
got to celebrate the best dad in the hood
didn't even have to use our ak
gotta say it was a good day, err, weekend

scrumdidilyumptiousness

went to the cardiologists yesterday and she said am looked good :)

she heard a small murmur from the vsd backleaking a bit, but said there was a possibility that could resolve on its own. we get to cut her lasix back by half and, if all goes well, cut it out next week, which means we can potentially start starving her to make her take the bottle and get that tube out of her nose -- yey!

today is d's last day of vacation and we havent really had a chance to take a break so today we walked all around the hood and went to the yummy french bakery, le reve, for coffee and pastries on the patio.
am is getting a taste for the finer things early :)

caffeinated deliciousness

anyone else think my husband's smile is just scrumptiousness

free at last, free at last!

amelie is sprung! actually we were discharged yesterday afternoon. but since getting home i have been curled up in a ball with stomach pain -- i think all the fears, emotions, and exhaustion i wasnt allowing myself to feel in the hospital crashed down pretty quickly. im starting to feel human again tho, and more importantly am is doing great!

we had a sort of crash discharge because they brought the baby in the next bed back from isolation and then began saying things like 'mega dose of broad spectrum antibiotics'and 'sensitivity tests' to her mother to describe what they were doing.
after that we started on a campaign to get am out within the hour. unfortunately, it took most of the day to get the dr in to make the call. fortunately, we had an awesome nurse who fought for us and i think was the reason the dr let us go.
overall our experience at childrens was great, but i am hoping they send me a survey so i can 'voice my concern' over them putting a baby who had a bacterial infection with heart rates over 200 and a temp of 103 back in the room with my girl who has a 6" open incision in her chest, as well as, a couple of lines still in!  i was paranoid and wiped everything down with the toxic saniwipes and everyone was very good about gelling in and out, but we spent enough time in the NICU and ICSU to see how quickly things can spread.

anyhow, enough of my rant... we are overjoyed to have our girl back where she belongs and still in shock that was got out so quickly and without any major complications!!!!!
am will be restricted in her movement and we need to be careful about how we pick her up for the next 6 weeks so that her sternum can heal properly and doesnt crack back open. the dr was of the opinion she would self-limit, and we were like, uh... she's german, i dont think self-limiting translates...
she has already been trying to eat her feet and turn over today. i am sure she will be trying to crawl by tomorrow -- we are in for a fun 6 weeks of forced limitation i believe :)

we are not totally in the clear with am, her least echo showed a bit of a backleak in one of her valves, but that is common and something we will just have to watch -- worst case scenario they would have to re-open her, but that shouldnt be for many years to come.

have to say a big thank you to everyone again for all the prayers, good thoughts, help with max, meals, snacks, and magazines brought over, visiting and supporting us though what i hope was the most difficult period in our lives -- there's no real way to express how much that all meant to us!

home

down to just the leads

no more wires :)

really people?

    really people? are you seriously subjecting me to this?



today was a big day in the dupuis household. d sort of incidentally graduated from UW!
he had enough credits from completing the pre-reqs for dental school that he figured, why not?
unfortunately, i didnt feel like it could leave am that long so didnt make it, but 'uncle chad' went and auntie anouk was a saint and, yet again, took care of our boy.

am had a good day today. she stopped vomiting, is only on tylenol and her heart meds, and is regaining energy. the big thing for me is that she started smiling and talking to everyone again -- i feel like i have my girl back :)
we had a curmudgeon card resident this am that didnt want to take am off the continuous drip feeding pump and said, well maybe you can take her home next week. i told her that wasnt good enough, that i wanted her back on gavage and bottle feeding and wanted to try to take her home tomorrow or monday at the latest... hoping i can make that happen!

    am was excited about the pomp and circumstance

    she pulled her tube out yet again. i think its a good sign she's ready to get back to the ushe

    thought i should give the boy some equal photo love

busy busy busy bee

am had a busy day today starting with a 5 am chest xray, then the morning pokes and prods, then violet vomiting, then ekg, then violent vomiting, then blood draw for labs, more violent vomiting, removal of her chest drain and pacing wires, (yey) then we found out her ng tube had been placed too deep and was going into her duodenum so replaced that in hope of stopping violent vomiting, consult with feeding specialist/ fitting for wedge, then visit from big bro max, then echo, another consult with feeding, then rounds and consults with cardiologists, then more exams, more poking and prodding, now is shift change and lots of commotion with the baby in the next bed spiking a high fever so they are putting her in isolation -- that doesnt make me feel good.... hopefully soon things will settle down and my tired girl can get some sleep....

echo time

the 'fafaffe dance

ams new digs

hallelujah brother joe!

had to update one more time today to say amelie actually took down 30ccs from a bottle like a champ!

i dont think anyone other than a heart parent will understand the significance of this, but suffice it to say we have been working on this issue for the past 4 months -- it almost made me cry as much as when they took her back for surgery!
im sure it will still be a long road to get her completely bottle feeding, but just the fact that she sincerely wanted the bottle and wasnt showing any signs of aspirating is so incredibly encouraging and something we were hoping the OHS would help with -- this is pretty miraculous folks :)

step down progress

this morning am got a few more tubes out and we got to bring her down to the surgical care wing, yey!
they stopped the morphine so i think she has been in a bit of pain and has been fussy all morning,
we were able to avoid the pacemaker last night. she still has the wires in, but i think the risk of her having to go on the pm has decreased considerably.
we just got to feed her, dress her in a little gown, and wrap her in a blanket so she is sleeping pretty peacefully for the time being :)

we are hesitant to count our chickens, but one of the cardiac nurses mentioned if am keeps on this track, she might be able to go home by sunday.... as i was preparing myself for a month long stay, anything less than a week would be a miracle in my eyes ;)

                                                              finally got to hold my girl again!

pretty dress

reaching for daddy

where's waldo?

not happy about this here situation

extubated hoorah, and a couple shouts outs!

about an hour ago they extubated am -- hoorah, hooray!

this is a big deal because the longer that tube was in the more risk she had of infection and intubation induced pneumonia, and i think ams handling the extubation was d's biggest fear as it took so many tries and was so difficult for them to extubate me -- i think am learned from my mistakes :)

her blood pressure and heart rate are a little wonky right now because during surgery she had 1st degree heart block, (a disruption in the electrical system) so there are a lot of alarms going off, and she may need to go on an external pacemaker to regulate that...

just want to end the day by saying thank you so much to everyone for keeping am and us in your thoughts and prayers --we are so appreciative and know its made a huge difference in how the surgery went and her recovery so far.

also, a HUUUUGE shout out to the courtades for taking such good care of our boy so we could fully concentrate on our girl, as well as, filling our refrigerator for the week -- you guys are the best! to the millers for the super thoughtful gowns for am, the OS girls for the surprise visit, and to auntie alyson for her wonderful distraction abilities, her questioning nature, and all around great friendship -- love you guys!

out of surgery -- Am is doing well :)

am is out of surgery, apparently the surgeon was in a rush to get to lunch as he finished in record time :)
he said she had enough tissue in the septum that he was able to use that to patch her up and did not have to use and cadaver patches. he also said her valves looked great -- very encouraging!

she is in recovery in her CICU room now and daniel, and i, and aunty alyson are sitting bedside marveling at how great she looks :)

on the bypass!

running a bit behind, but they updated us that she went on the bypass at about 10:30am and just came in again and said she was off already..... we are hoping that's a good thing...
surgeon should be in 45 mins to an hour to give an update as well.

heres some pics of arrival and prep this am :)