Lilia's Story-Part 2

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

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.