Lilia Christine..Miracle Child

Liver issues

2011-03-03T11:00:00.000-08:00

So now we might be dealing with some sort of liver issue. Apparently her enzymes are high (i think thats right) and it was seen to be normal for how sick she was the last couple weeks but since shes been better they have gotten worse. Which doesn't make a lot of sense to me. and has her doctor concerned. So next week (tues) we have to go for MORE blood work (poor kid, todays blood work was a friggen nightmare to get) to see whats up.

untill then we are to stop her high cal formula and give her an extra can of the normal stuff in a day to try and get her weight back up (she hasnt gained a thing back since she's been home).

apparently the liver issue is also why her poops have been white.

really if its not one thing with her its another.

Drug levels still not great

2011-03-03T10:57:00.001-08:00

So Lilia was poked on monday and we got word that her rapamune (anti rejection med) was still not great. I was wrong ebfore her level is actually suppose to be between 6-8 and it was at 19.6 on monday. so we were told to hold off the meds for 2 days then take her back for blood work.Then start giving her the med again and in 5 days to another med level.

well today was BRUTUAL for being poked. She would have none of that at all. She fought really hard for somone so tiny. but Carol (who is awesome) managed to still only do it in 1 poke. And after Lilia got a little stuffed bunny, which cheered her up right away.

anyways so i am NOT looking forward to the poke on tuesday.

Lilia's Home!!

2011-03-03T10:50:00.000-08:00

So in the excitment of her getting released last week i totally forgot to update her blog. So here goes.

She was released from the hospital last thursday.
so they told us at 9 am we could go as soon as they got the drug level back (we had issues with it, she was poked every day we were there for drug levels) then we found out we wouldnt know till 2-3 pm what the levels were! we had to get rora from school, and was afraid they would discharge us then with no car to go home....so we told them at 2:30 we were leaving anyways. and we did...just walked out. there was NO reason to keep us for so many hours based on soemthing we usually get done as an out patient anyways. we were pissed. i called t.o myself and got them to get the results and tell us what to do med wise (which is all they docs were going to do anyways). poor girl has to be poked again on monday....but at least as an out patient now.

so finally the doc finds out we left and he actually called us at home to apologize for making us wait so long. SO now I am not so pissed about the whole thing.

Drug Levels

2011-02-21T17:09:00.000-08:00

So I forgot to mention this. When Lilia was in the ER they did a drug level on one of her anti rejection meds. Turns out that it was 100!!! To give you an idea of how high that is, its suppose to be between 8-10. So for the last few days they have had to hold the med and wait for her drug levels to come down. which means being poked every day. Since its policy to no longer take blood from the IV, she gets finger poked every morning. Shes not happy about that at all.

it probabaly happened becuase she she went so long without food in her stomach, was probabaly a bit dehydrated, etc.... lukily they caught it though.

at least a week

2011-02-20T12:05:00.000-08:00

So apparently the bacteria in her blood that the culture showed means she needs at least a week of iv antibiotics. So at the earliest we will be out of the hospital is Thursday.

Not too impressed with this news.

on a happier note, Lilia kept her last feed down!! so for now we are just going to continue to run it slower and hope that helps.

Admitted

2011-02-19T19:58:00.001-08:00

So you all know lilia likes to cause havoc on holidays.....well she was admitted into hospital last thursday and will probabaly still be there on family day.

it all started with the stomach bug we all had, however ours lasted 24 hours and Lilia's lasted 10 days and counting....finally on the 10th day we took her to ped (again we had taken her in a week ago as well) who took one look at her and told us to take her to the hosptial. She has lost 2-3 lbs, was now coughing something fierce, spiking fevers off and on, was very pale.

So we took her to the ER and her sats were 92...not too bad, but not as good as normal. the chest x ray (which she is an old pro at) showed pnemonia on both the left and the right lung. So she was admitted.

Lukily she doesnt need 02, however she does have an IV in for the IV antibiotics. which right now is a broad spectrum one.

they did do blood cultures (which is growing something) and a nose swab (which showed she has a cold...so shes stuck in isolation) but we wont be allowed out untill they know what the blood culture is growing. So that sucks. Shes very cranky being stuck there, even starfall.com is starting to bore her.

they did start her feeds back up, and she made it through 3 of them without puking. but then she puked up the 4th one. So they ran her 8pm feed over 2 hours (instead of 1) and we are keeping our fingers crossed. If she pukes again they will have to call the doctors.

anyways so now that we have net in the room, I will try and keep her blog up to date on whats going on. which hopefully wont be too much more.

Lilia's lung scan...and procdure

2011-01-11T09:57:00.000-08:00

So a couple weeks ago we did a fairly routine tests. a Lung perfusion scan. its to see how mcuh blood flow is going to the lungs. We her cardiologist called a week later to let us know that Lilia;s left lung was only functioning at 6%. they thought that maybe her PA was blocked by maybe her stent (which is in her airway) or a blood clot. So they rushed us to sick kids and she had an ultra sound, an x ray, and an echo. then a week later we came back to sick kids to have a procdure done in the cath lab to see what was going on in that lung, and maybe stent it if there was a blockage like they thought.

So after a stressful 2 hour prcedure (that she was put out for) they came back to tell us that in fact there wasn't a blockage at all so they didnt do anything. Lukily that meant after 6 hours in recovery room she was allowed to go home.

However the bad part is we thought this would explain why her lung is collapsed and fixing it would save her lung. Now we have no answers as to why her lung is not working, and it seems to be another check for getting rid of the lung all together.

We are currently wiating to hear back from ENT to see what the next step is.

2010-06-18T10:54:00.001-07:00

So we were in toronto all day yesterday (traffic was awful esepcially on the way there)

well the lower part is still collapsed. the uppser part has some air entry now, which is a good sign.

they have basically deicded that while she shows no symptoms..can run around fine, isn't sick, etc.. then they arent going to do anything.

most likly in the future she will lose the lung, but they are going to keep it for as long as possible.

so right now I am just gonna try and let go, and just not worry about it.

We're coming home!!

2010-06-01T10:51:00.000-07:00

Lilia's has been off oxygen for most of the day today. she only desats down to the low 80's when doing ehr physio and bounes back up to low to mid 90's after..so thats good enough for her to come home yay! right now we are jsut waiting on an echo then we can go.

We talked to the chest specialists this morning. they want to try and see if we can bring that lung back up (it is still collpased...apparently she functions well with a collpased lung) so heavy oral antibioticsm a lot of chest pysio (4 times a day) and then when we come back for transplant clinic (on the 17th) we will do another x ray. if its not any better then we will plan the next step. Which is most likly to remove the lung.

Monday

2010-05-31T09:34:00.000-07:00

Lilia's culture grew H infulenza, so now shes in isolation. unable to go to the playroom or for walks which sucks. But at least she got out once before they found this.

They are having issues weaning her O2. The PT has come in and is doing chest pysio and breahting exercuises in hopes to cough up as much as the mucus as possible, to clear her lungs. We will also have to start doing this at home too, even when shes not sick to try and keep her left side as clear as possible.

As soon as the O2 is off, she can go home. hope to hear from ENT about their plans asap.

Sunday update

2010-05-30T10:33:00.000-07:00

So Lilia was extubated early this morning. Without oxygen her sats are 89/90, with they are 99/100. So it looks like she'll need O2 for a little while at least. but shes so much happier with the tube gone.

The plan is for her to be out of the CCU tomorrow and up on 4D, then hopefully go home in a couple days.

her left lung is better now that they got a lot of the muscus out of it, and shes coughing well rught now to get the rest out. Her lower part of the left lung is no good anymore, and is jsut a pool of infection so they want to remove it. However they want to do it when shes in top shape so they are looking at doing it in a few months, since she has coped pretty good without the use of that part anyways.

the stent, they arnt sure what to do about it since there isnt much they can do without risking her life. They might put a balloon in and try and make it bigger, but its risky so they are gonna think on it for a few months, and see what happens.

She should be stable enough to go home in a few days (as long as nothing else happens) the stent shouldnt move anymore, not that soon anyways...so she should be ok at home. Just soemthing will have to been done in the near future to fix this.

Saturday update

2010-05-29T12:10:00.000-07:00

As of 3pm saturday.

So we saw Dr.Forte reccently (the doc who put the stent in so long ago) and this is his plan for now....

extubate her and let her cough up all the mucus on her own. Watch her for 3-4 days and see how she does.
If she handles extubation and if the lung gets better then we might just leave her. If she doesnt do well then we will do a rigid bronch to have a look at the stent. And then either put a balloon in to try and make the stent bigger, or cut a piece of her lung out.

So basically for the next few days its a wait and see game. Fun.

Lilia admitted to PCCU/CCCU

2010-05-29T08:19:00.000-07:00

Summary of events

On wensday Lilia went to the hospital in London to have her G tube track dialted. Once she was asleep they had a hard time getting her to breathe and so they did an x ray after the procudure. they found that her left long was collapsed. Although she looked a lot better then her x ray showed they decided to intubate her and admit her to the PCCU (paedtric critical care unit) there they did a few bronchs (where they put a camera down the tube and suction out the gonk thats in her lungs) they found a lot of secreations. Did swabs to check for virus's.

The swabs came back negative after 24 hours. The lastbronch they did on friday showed that the stent (that she had placed in her lung as an infant) has moved and is blocking her air way. they decided to send her by helicopter to sick kids in toronto. Wehre they are more capable to handle her. Since this is where they put the stent in in the first place.

Right now the docs here at sick kids are unsure if they can even do suregery to fix the problem. They are looking at her CT scans and x rays but still seem unsure on what to do about this problem.

Lilia is getting pretty pissed off with how much they are bugging her. SDhe is on morphine though, so as long as they don't suction her shes ok.

I'll update this blog as much as possible. Since they have computers in the PICU now.

Littlest Heros Project

2009-07-21T13:59:00.000-07:00

Lilia particpated in this the other week, for those who dont know what it is follow the link!

http://www.facebook.com/l.php?u=http%3A%2F%2Fwww.littlestheroesproject.org%2FLittlest_Heroes_Project%2FHome.html&h=1e813f5dfca41be84aa17b8f4b10c001

and our awesome photographer.. she is in windsor, totally recomend her!
http://www.angiechauvin.com

heres a sneak peek of our pictures!

Home again!!!

2009-05-30T19:58:00.001-07:00

So Lilia was released this afternoon, and the other 2 kids came back this evening from the grandparents house. So me and lilia had some alone time, she had a bath and i removed about 10 bandaids from her poor little toes and fingers.

its a little sad i dont have any pics of this hospital visit, I couldnt find the camera..although i did get a few shots on my phone. But they arnt very good.

We then went for a little walk, and got caught in a sudden downpour...ugh I feel like the worst mom ever. But she didnt get too wet actually..it was mostly me, and i warmed her up quickly when we got home.

So her feeds are still ebing run slow, they take about 2 hours each instead of 1. However we are slowly weaning her back to blois feeds and she should be back to her normal feeding schdeule by monday. If all goes well then tuesday we will slwoly be switching her formula from the good start baby formula, to a toddler tube feedding subblment instead. It was time for the change..she couldnt get enough nutrients at her age from the formula anymore.

Lilia also cant walk right now, which is very sad to see. She cant stand for more then a second before falling over...I want to get PT involved to help us, becuase I dont really know how to get her back walking. I know its becuase shes weak from losing so much weight, and also from being in bed for 2 weeks...3 weeks really since she was so sick at home for that week before she was even admitted.

Anyways though she is so much happier to be at home.

Still in Hospital

2009-05-29T06:03:00.000-07:00

So Lilia is still is hospital, almost 2 weeks now. We have started her feeds now, slowly but getting the same amount throughout the whole day. She was on TPN through the IV, which she hasn't been on in a long time. Since she was an infant.
We still dont have the type of salmonella, but at this point shes already being treated for antibitotics for 9 days i think so no matter what it turns out to be shes probably just about done the antibitoics anyways.
hopefully her gut can toelrate the food, and then hopefully she can come home. Since right now our time off is unpaid...which is very hard on us.

It turned out that i DONT have salmonella, I was in the hospital for 2 days myself and they thought I had meninigits...after a LP and a bunch of other tests it was ruled out and I was sent home. it was not a fun time though, I am starting to feel better now though.

Salmonella

2009-05-23T04:53:00.000-07:00

Well we found out the other day lilia has salmonella. They are still waiting on the type before they treat though. Apprently some are more severe then others. Usually they dont even treat it, jsut keep the child hydrated till its gone, but becuase shes immune compermised its a bit different. She also has pnemonia, but we beleive we got it really early..she doenst even need O2..but she is on antibitocs for it.
She blew her IV yesterday, her poor little hand was so swollen. The nurses on the floor dindt see anything so they got the team from the ICU to come up and do it. She tried 3 times to get it and couldnt. So they got 3 doctors to try and still no luck...her veins are pretty much no good now since they poked her way too many times. They were going to have to put a central line in, becuase shes NPO (no food) and had to have an iv becuase of this. Whcih they would of done is ICU..howver the ICU doctor who would of done it wanted to come up and try and finally after a few tries he got a line in! So no central line..which is great.

So back to why shes NPO after we had tried to get her feeds back up to normal. Me and brant noticed that her tummy seemed bigger, and told them. they didnt really think anything of it, said it looked fine. but decided to do an x ray mostly to amuse us I think. However the X ray came back that she has a lot of gas pockets in her intestines..so much that they are worried shes going to perfierate a bowel. So they quickly stopped all food, and are venting the gas out through the G tube. However its so much that surgery is checking on her every day, they are afradi she will rupture her colon and need surgery asap.

they are taking x rays every 12 hours to make sure shes improving..and so far she is. So we are really hoping that she will improve enough and not need suregery. however she will be in hospital untill all this is better..which could be quite a while.(keep your fingers crossed that she gets better fast so she can come home soon)

Also shes lost a lot of weight...she was 27 lbs before she got sick..now only 2 weeks later shes 22 lbs.

STOP POKING MY DAUGHTER

2009-05-19T02:33:00.000-07:00

So they are still having some isues with her elctrolites, so they had to poke her a few times. Seriosuly though we came back from brant picking me up from work and she had 4 poke marks on her hand, 1 on her arm and 2 in her feet...does she look like a fricken pin cushion?? She was pissed too...cried when she saw us. probabaly becuase we left her alone with somone who just poked her the whole time.
then that night they had to poke her again and decided to do a finger poke..had to poke twice to get enough blood (she clots fast) and then we finally got her alseep for the night left, called in to check on her only to find out they are in her room poking her again! the finger poke wasnt accurate so they wanted a vein blood sample..ugh. and she told me she had to poke a few times to get it...she has small vens that like to roll.
So brant went back to comfort her, and she went back to sleep pretty quickly.

So other then her being miserable and starting to hate nurses..shes doing ok. not much change other then they started her back on pedilyte..they want to get that gut going again. She toelrated it fine..although shes still on the anti nausesa meds, they dotn want to risk her throwing up right now beucase she needs to try and get some food into her, I am hoping that they will try her on her formula soon...she hasnt tolerated any in like 12 days..i dont even want to know where her weight is at.

Lilia admitted again...

2009-05-18T03:36:00.001-07:00

So it seems I never updated her blog after she was released from the hospital the last time...
well she was admitted to hospital again on saturday. She was very sick for 9 days..couldnt keep anything down, very bad dierreah, just laying around with a very vacant look in her eyes. She wasnt ehrself at all, not even her sick self (where shes tired and grumpy but still smiles somtimes and plays in bed) so we took her to the ped twice during this 9 days of sickness and the ER once. They said just to keep her hydrated as much as possible with pedilyte. that we were doing fine..they did not tests though.

Finally saturday 10 days of being so sick we took her back to the ER, they finally did some blood work and started an IV. the docotr wasnt going to, but the nruse stood up for us and inisted. When the blood work came back it shwoed all ehr electrolites were severely out of wack...which we also found out caused her bowels to shut down and stop working. Which is why she was having such watery green poops. Also her sats were in the high 80's, they did a chest x ray and her x ray was clear. basically she was so dehydrated that it was affecting her breathing.

Shes on the floor now, D7-210 in case anyone wants to visit. And after being on an iv for 2 days now and some strong meds to help with the throwing up, shes doing a lot better. Shes acting like her sick self, which is better to see. they also cathed her to check for an UTI (apparently her bowels shutting down can cause UTIs which would explain why shes still throwing up, and having fevers) they also collected stools to check for C difficule and other things..

So hopefully we'll get to the bottom of this and she'll be home in a few days.

The room fairy came

2009-03-30T19:31:00.001-07:00

at 3:30 am! So shes been in her own room all day today, which is nice! I dont really understand how a whole bunch of rooms became available at that hour, but we'll take what we can get.

So shes still on O2 and an IV, shes really grumpy but I think thats mostly because she wants to go out and play. She cant though, becuase she has RSV/pnemonia shes stuck in isolation. And driving us all crazy lol.

They did an US on her lungs to get mroe information about the fluid...hopefully tomorrow i'll find out what exactly the plan is and hopfully she'll be home soon.

RSV

2009-03-29T12:16:00.001-07:00

So its come back that what caused this was RSV. I'm annoyed..this was the first year they said she was strong enough to not get the rsv vaccine (which doenst prevent rsv..but helps them stay well enough to stay out of hospital) and of course she gets it and ends up in hospital...I dont know what else this means, i'll update that mroe when I know. She'll be in at least couple mroe days.

i'm also very furstrated! Shes been waiting for a bed on the 7th floor for 28 hours now, and there are stilll 3 kids ahead of her waiting for a room. i am so tempted to just take her to toronto..i know she'll get a room there.

She is in a private room in the ER, however she cant leave that room (too many bugs in the main area of the ER) we cant leave her alone at night or even for more then a few mins during the day becuase they dont watch her close at all in the ER, plus we're not suppsoe to use cells and we dont even have a cot to sleep in during the night..plus vistors are much harder to have..like the other kids.

Lilia was admitted...

2009-03-29T05:21:00.000-07:00

So since the biopsy Lilia hasnt been feeling great. Sleeping a lot, coughing a lot. They did say after the biopsy there was a lot of mucus in her lungs, ther suctioned a lot out but told us to watch out for pnemonia..well it got her.
Friday she started with fevers, her lips tunred blue and she was shaking..she slept alomost the whole day which is very unlike her. We were going to take her in then, however we thought maybe it was just the infection from the J tube and decided to wait and take her to the Clinic sat morning..she was already asleep friday and i hate waking her to spend the night in the ER..especially if she doesnt need to.
Saturday she still had fevers and sleeping, plus the coughing so I took her in. Her sats were only 86/87 (she normally sats normally 98-100) they started her on O2 and put her in a priavte room in the ER (they always do as shes immune compermised..we also never wait in the waiting room which is nice) so after chest x rays they said yes she does have pnemonia in her elft long, it is pretty bad actually. they were talking about putting her in the PICU instead of on the 7th floor. However since she was looking a lot better (less pale, and sitting up and playing) with the O2 they decided to admit her to the floor. Which is great...PICU is not a place you want to need to be..shes never been back there since she was a little baby.
Well because of staffing issues she spent the whole night in the ER..hopefully she'll have a bed upstairs this morning when there are more nurses. She didnt fall back asleep untill midnight, but brant spent the night with her (i spent the first 14 horus with her) and we'll be switching back and forth.

I'll update on here when I can.

Biopsy

2009-03-29T05:14:00.000-07:00

So Lilia had her annual biopsy on thursday in toronto. She did really well, her sats were a little low at first afterwards but were at 95 when we left.

We spent the night before in a hotel, just me and Lilia. It was interesting she didnt want to sleep alone so I slept in the bed with her. Once she fell asleep though she kicked me out! And then slept width ways on the bed lol. She was really tired though as she didnt fall asleep till midnight, and i ahd to waker her up for the biopsy at 6 am.

We were lucky we still got there really early as they moved the biopsy up from 9:30 am to 8 am! Without telling me! Which meant we had to get her ready very quickly and she didnt get a chance to go to the GI clinic to get her J tube removed. So i asked them to remove it while she was out for her biopsy...it took a very nice cath lab receptionsist (not sure what her title is...) making a lot of phone calls to finally get it done, but alas we are without a J tube and only have the G!! Yay, which is good becuase its infected again. Hopefully after it clears up this time it'll stop getting infected as the tube is now gone.

Now keep your fingers crossed theres no rejection!!

Lilia is Home!

2009-01-24T06:33:00.000-08:00

I am so sorry i forgot to update that she was home. I even Forgot to call my mom and tell her..oops. Things have been crazy getting ready for us to go away this weekend.

So Lilia was discharged on thursday and we got back late thursday night. She was finally allowed food by mouth thursday morning, and she had the bigges smile when she was finally allowed a freezer.

i couldnt talk them into pulling the J tube out, even though we are having issues with it getting infected but their reasoning makes sense and it'll be pulled in about 3-4 weeks. Hopefully they can do that in London so we dont have to go back to toronto for that.

Lilia was due to go back to toronto Jan 27 for her yearly holter, GFR and an echo. However since we were just haning around the hospital waiting for her feeds to slowly go up, the did them on Wed and thursday instead.

The Holter is basically a 24 hour EKG, the GFR is a test to check Kidney function as the meds transplant kids are on can damage the kidneys. Its especially important for Lilia becuase post transplant she had pretty major kidney damage, and although its been normal for 2 years now it something we have to keep an eye on. The test is a bit of a pain though having to have an IV put in (so she had one in each hand that day!) and she has to lay fairly still for 20 mins afrter they inject the radation in to take the pics..but she watched Dora the whole time and did really well. It'll be a while before we get the results back though.

So hopefully the next time we go back to toronto is for her ECHO/DSE which is March 24.

Thanks everyone for thinking of Lilia during the G tube stuff..shes doing very well and it just glad to be home! I'll post some pics when we get back from our weekend away.

G tube update on Lilia

2009-01-20T07:13:00.000-08:00

So lilia had the suregery yesterday around 2 pm. By 4 pm we saw her in recovery. She was in some pain and quiet fussy so they gave her 2 doses of morphine. they brought her back to 4D pretty soon after. She's been in bed since then..feeling a litt off I imagine and a little bit in pain. She was NPO all day, and then around 3 am theys tarted her very slowly on clear fluids through the new G tube.
Right now she has the most tubes she has ever had..the J tube,the g tube and an NG tube lol. Hopefully she'll lose the NG tomorrow.

I cant leave Lilia for very long to get to a computer (plus the compurters suck here), Brant is in London with Aurora and heyden (him staying in the hospital with us didnt go very well so Brant is formula feeding him and I am pumping here) I miss the other kids though! :(

If anyone wants to call get a hold of brant and he has the room number..or call sick kids and they will probably give it out? maybe anyways. Its pretty boring here. Hopefully it'k\ll be ebtter when Lilia can get out of bed and play a bit.

Wish us luck!

2009-01-18T14:42:00.000-08:00

Well tomorrow is Lilia's g tube surgery at sick kids. We are excited to be getting rid of the NG tube, and the G tube will be a great improvment over the J tube. However we are nervous for complications (as with her first J tube surgery there was some and she had to have an emergency surgery to "fix" it) They are keeping her for 3-4 days if all goes well.
I will try and update this blog when I can, but I will need to be with her most of the time.

Dear Angel

2009-01-13T19:11:00.000-08:00

I know your probably looking down on us from up above, a child who probably should of been about 3 years old now. you could of been a little boy or girl who Lilia would of went to school with and played with. You probably would of liked cars, and dolls just like my little one does, maybe playing with your sister and kissing your brother good night too.
Your time was cut way too short, I dont ever take the joy in a persons death, espeically a baby's. I feel for your family for the day that I rejoice in is the day your parents cry the most. I hold them tight in my prayers every night..but especially this night. I wonder how they got the news that their little one was gone, I wonder how they had the courage to make the descion that they did.
Just know that you didnt die in vain, you saved my little girls life and probably many others as well. I thank your parents for deciding to give us their most prized "possesion" their baby's heart. Because of them Lilia can smile and play, kiss us goodnight and because of them I dont cry on this day. You know she hasnt had it easy and probably never will, but I feel your prescence near her and I bet your holding her hand through everything and wiping away her tears.
Every time I feel her heart beating I think of you and whisper a small prayer of thanks.
We will never forget you, you live on inside my daughter and I know she will make you proud. Untill the day I can hug you close and say thank you in "person" I hope this letter will be enough to know that we will never forget the angel who saved our lives. Rest in Peace little one.

Blood Draws

2009-01-12T11:32:00.000-08:00

Lilia is amazing at getting blood drawn, she never cires even when they have trouble starting one.

this was from today, she has had a lot of blood taken this last month and not very many good veins.

click the link to see the video of my star patient!

http://s24.photobucket.com/albums/c41/JobeFamily/?action=view¤t=liliaspoke_0001.flv

Lilia's Story..Part 3

2009-01-07T10:59:00.000-08:00

Lilia didnt get better after 1 week on ECMO and many attempts to wean her off. The surgeon came to me and said you have 3 options. 1. Take her off the machine and let her go 2. keep her on the machine and see what happens. 3. Get her a heart transplant.

I asked him what her chances were of getting off of ECMO on her own and surivivng if we waited. He said he didnt think she would last too much longer on ECMO and didn't think she would ever be able to get off of it without a transplant..So right away we "listed her" becuase she was so sick she would get a heart as soon as one in her size came available. We wanted to do EVERYTHING in our power to save her life.

We waited 1 week for the heart, and it was the hardest week of my entire life. Lilia had a good ecmo run, the best they have ever seen acccording the the ecmo profusionist, but her time was running out. They told us that the longest they had a baby on ECMO for and come off suucessfully was 3 weeks..Lilia was already at week 2. One day her lungs were so bad that they even took her off "the list". Dr.Dipchand said that if a heart had come in that night, she would of not been able to give it to Lilia.

I could tell that some of the nurses were losing hope, Lisa an RT who also runs ECMO, had his wrap lilia jsut so that we could actually hug her while she layed in the bed, sedated, parlaized, full of tubes wires, and an open chest..she also took pics with our camera for us. it was one of the ebst thigns somone could do for us at that point, I still love the pictures to this day.

However lukily with a special ventalitor they managed to get her lungs into better shape. And on January 12th (the day Lilia turned 1 month old) We got the news.
We were at Lilia's beside, it was about 10 pm at night when Dr.Dipchand walked in. our hearts jumped as we thought she came baring good news. However she was so casual, asked how we were doing, checked Lilia's chart. So I thought she was just at the hospital late checking on antoehr patient or whatever and decided to pop in.
Then ever so causaully she says..so we have accepted a heart for Lilia. I was in shock and didnt believe her at first..January 13th at 6 am lilia went for surgery. It was long and wasnt easy, we feared that she would come back on ECMO (prior to her there was a baby in her room who after a transplant came back on ecmo..and didn't make it) lukily she came back without that dreaded machine. Still the special vent and her chest opened, but we could live with that.

End of january, after having her chest opened for over a month they finally closed it succesfully. Now it was a waiting came to see when she could breathe on her own again.

Lilia's Story-Part 2

2008-12-23T19:57:00.001-08:00

So Dec 23 2005 Lilia had open heart surgery to repair her heart defects. It was a long wait and we were a ball of nerves. She came back with her chest open (which we were warned might happen) they hoped that in a few days the swelling would down enough to close. Her chest jsut had clear tape type stuff over it so they showed us..it is the weirdest thing to see your daughters heart beating in her chest, I had to sit down.
She was heavily sedated as well as muscle relaxed due to the open chest.

Christmas day was rough, we went back on Christmas eve to be with Aurora at my parents house, brant had gone back to our house in windsor first had brought the gifts to my parents.

This was Aurora's 2nd Christmas and as much as we wanted to be with Lilia we couldnt be in 2 places at once. Aurora was glad we were there, but our hearts were just not into it.

We went back to toronto after dinner and spent the rest of christmas day with Lilia..Santa had come to visit her, we also left her stocking on her "crib", she actualyl got a fair amount of stuff from the santa at sick kids. We were pretty impressed.

After the holidays were done, the doctors decided that Lilia was ready to try and close. Everything went well, untill they were getting ready to leave..Lilia coded and they had to open her again very quickyl and use the internal paddles to revive her.
They decided to wait a little while longer befre trying again.

Only a few days after this mess, Lilia got worse. Her nurse for the evening came on and noticed that lilia didnt look right. We were just walking in the room (you cant be in there for shift change due to privacy reasons) when they "pushed" us back into the hall..all of a sudden doctors were swarming her bedside..and they led us back to the waiting room. We heard the overhead call for emergency ECMO team to her room...
Shortly after a doctor came and toldus that Lilia had gone into septic shock, her blood pressure was too low and they had to put her on the ultimate of life support..the heart and lung by pass machine. this machine does all the work for the ehart and lungs. they thought with rest her heart would recover and she would get better.

Lilia's story..part 1

2008-12-23T13:41:00.001-08:00

3 years ago on the 21st.....Lilia went a long time at night without eating..she was very stuffy sounding and we kept putting Saline in her nose to clear the mucus..we even called telehealth and they told us it was muscus from her birth (only 9 days earlier) and she would be fine...then she went 6 hours without eating. She would keep latching on..take a suck and then break away crying, Screaming actually. I thought soemthing has got to be wrong with her latch and we decided to take her to the Sears breastfeeding drop in clinic to get help. There Lilia wouldnt even wake up enough to try and latch on, the person there (nurse??) said it might be her jaundice, might be high and she would probably need to be put under the lights. Said to take her the the ER..Brant had to work then, but i siad I didnt want to wait.Auroa fell asleep in the car on the way to the ER, so I told Brant to stay in the car with her and I would take Lilia in..i was sure it wouldnt be too bad and we would be out soon (we over reacted to aurora's jaundice when she was born...so i figured we would be sent home)we went into triage and the nurse did Lilia's blood pressure, stats, temp, etc.. and she never even flinched..by the time the nurse was done these things Lilia was blue...they rushed her to the back right awya and sent me to do the paper work.I was in tears..I didnt know what was going on..a few mins later they came and got me and brought to the hall outside the room that Lilia was being worked on in..i sat there and cried..then they let me go in..Lilia was intubated and had started to turn pink again, she had an iv and a bunch of other wires..they told me they didnt know what was wrong with her, but that she couldnt breathe on her own, and needed to be admitted to the NICU...I follwed them up there.There they did a chest x ray..and the doctor told me her lungs were filled with fluid and her heart was enlarged..they called a tech to do an Echo,,i helped to hold her still for it..they didnt tell me any results. Only that they wernet sure what was wrong with her..that it might be pnemonia, and that they were going to send her to London (we were living in windsor at the time) becuase it was so clsoe to Christmas that it would be faster (we were also waiting on results on wether or not she had turners syndrome from london..and they wanted these results asap) I didnt care as all my family lived in London and so I kenw my parents would take Aurora so that me and brant could be togehter with Lilia.I walked out of the hospital alone, carrying an empty carseat and bawling my eyes out (one of the saddest moments in my life), Brant and Aurora found me a few mins later..they had been trying to get back in time to see lilia off (brant had been in and out of the NICU with Aurora the whole time) they had seen her ion the hall and made them stop so they could give her a kiss.We went back to our place and packed as quickly as possible, I posted on M2M asking for prayers..and left. We went to my parents first and dropped Aurora off..then went to the childrens hospital PICU in London..by the time we got there the docotrs knew what was wrogn with her.They sat us in a room (we hadnt even seen her yet) and explained that Lilia was in very roguh shape when she got there..she almost didnt make the ambulance ride..once they stablized her again they did an echo and found that she had 2 Congential heart defects, CoA and multple VSD's, She needed surgery to surivive..however the good news was that her outlook after the surgery looked very good! She had a very high percentage of being fine.So they called Sick kids in toronto (as London does not do heart surgeres on children anymore) and said they would send her up in the morning (it was about midnight now) but sic kids did not want to wait, so theys ent their own team to come and get her. they couldnt do it by Air as the weather was too bad for flying.About 3 am they came...and took her away and me and brant followed soon after.We got lsot and it took forever to find Sick kids..and i was freaking out becuase I jsut wanted to be with my baby! Finally we got there, got a tour and were told that she again was in very rough shape after the trip, they were concentrating on stablizing her and then the next day (23) she would have the open heart surgery to repair the defects.