Lilia is Home!

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

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!

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

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

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

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.