Around September 2008 I became pregnant in the first months of testing! We are very happy. I live a very stressful pregnancy, having already had two deaths in utero and miscarriage.
I followed at Ste-Justine, by the same obstetrician as my previous pregnancy. From 24 weeks I have an NST a week at home by a nurse at the clinic GARE home. We followed very tight: an echo in the month and more if the stress is too far, a NST weekly in more than one appointment with the doctor every month.
comes the 38 th week. On June 9, 2009, my little princess is born by caesarean section because it was registered. It is a wonder! She spent the first day at nursery because she had trouble breathing at birth.
The other 3 days she spends with us in my room. She does not know how to breastfeed or bottle. She learns a little but I'm complete cup.
At the fourth day I leave but I must remain Lia to the nursery to learn how to suck a bottle.
At the nursery they make him some tests and realized that her head circumference is smaller than average. Moreover, they worry that his muscle tone is softer than normal. So they make him take an MRI by administering sedation. The results are beautiful, but after sedation Lia desaturates repeatedly. They make it X-ray of the lungs and see the liquid inside them. They make him pass a film aspiration to realize that Lia is dysphagia and must be force-fed. While we realize that the fight is not finished, life is not simple.
Lia is brought in neonatology because of a virus. They teach us the stuff and leave it to July 3! Finally we are bringing home.
We learn to do our routine feedings through and blessed with our beautiful princess with us. Its development is slower, but it interacts, she smiles, moves a lot. It does not keep his head, but is working hard to get there. We are very proud of its progress. Our daughter will succeed despite its limitations!
One morning in August at Lia spasms. Ste Justine call and they tell me discontinue the medications they had prescribed for her acid reflux. In the evening it does not calm down. We leave in the direction of Ste-Justine where they hospitalize immediately. The next morning she passes the tests and the verdict: Lia has epilepsy. She will be hospitalized five weeks. Physicians the opportunity to make him a gastrointestinal stoma for feeding and anti-reflux valve for his reflux problem was very uncomfortable and very hard to control. Doctors are trying earnestly to discover disease Lia through several tests and several hypotheses have been raised but immediately eliminated. We return
home well pleased to bring our daughter we ave. We also learn to use a suction device Lia choking on secretions, and we must aspire regularly. But the presence among us of our daughter is worth all those little sacrifices.
October 17 ... ...
is the feast of the angels at St. Joseph's Oratory. Throughout the ceremony I cry with my daughter in my arms I miss my boys. We're going to dinner at my aunt that night. At dinner time I put Leah in her car seat and I keep at my side. I had a look on it continuously. At one point I look at it ... looks fixed. I say good another convulsion. I take her in my arms: it is blue! My daughter stopped breathing! I start to scream! My aunt's arm and removed him artificial respiration. I cry all the tears in my body. Lia comes quickly and we left for St. Justine by ambulance ... .. never to emerge.
In Ste-Justine Lia spent a week with us without any jitters. Then one time I chat with the social worker on the floor and Lia is in bed. The machine saturation sounds and when I look at my daughter she is completely blue! Code Blue on the floor, they'll out of his room and while I walk weeping in the corridor to the office of the chief nurse, I see all the doctors and nurses who run to the room of my daughter. I hear over the intercom code blue. It's atrocious. I was convinced that was gone. A nurse comes to me and say that Lia is under control. I returned to the room and we went down to intensive care. The next day, as it is stable it returns it to the floor. She stayed there one night and again a code blue. Back in the ICU. This time they tell us that his respiratory arrest due to his epilepsy. We stay there 48 hours and they returned again to the floor. We stay there one weekend and Lia is a convulsion in status (continuous), they should give him two large doses of drugs to stop the convulsion. And the head nurse of the floor in front of us said:''I do not want this child there on my department, it is too unstable ... .. she returns to care.''
So back to intensive care.
Lia spent a week where she made small seizures, but nothing too serious. They talk about us back upstairs. Then on Sunday. She stopped breathing during the tour of physicians: code blue. In the afternoon she made another, they give him a dose of Ativan to calm his brain. She sleeps all day. After dinner we return home. At 20.00 I call all is well. 21:00 the phone rings and Lia made two consecutive stops breathing and his heart threatening to break down. They have to intubate emergency. We go to the hospital immediately. Intubation is going well.
Days pass. Lia least 1, sometimes more (see up to 6) respiratory arrests per day. Most of the time the respirator is sufficient for saturation does not drop. But sometimes nurses have to disconnect the respirator and assist manually (with a bag) because the air does not pass well enough.
More days pass and the state of Lia deteriorates. She has no eye contact, does not react anymore to our voices, no longer tries to weep, no longer smiling. Gradually we see our daughter out.
Physicians (neurologists, intensivists, geneticists, pediatricians) come to see her every day and try to adjust the medication. They are testing (lumbar puncture, muscle biopsy, blood repeatedly) to find the disease Lia to find a cure. Quietly
doctors begin to talk of discontinuation, illness progresses, Lia suffers.
Daily we are with our daughter. We give him his bath, the kiss, the indulge with him saying how much she is wonderful and courageous.
Then one day the verdict: The disease progressed too, Lia's brain is too sick, there's nothing left to do. We ask for a second opinion. A doctor Montreal Children''''moves. He looks at the issue, meeting physicians Lia comes to see our daughter. We hope. Unfortunately his verdict is the same medicine is not advanced enough to save our daughter. Lia can not live like this.
We are torn. We are December 14, 2009. We decide to baptize
Lia December 20. Following the decision of the date of baptism, the intensive care team and we encounter the words of the doctor: 'Leah is very sick ... .... She can not live together ... ... we announce that we extubons the December 21. ... we expect it to survive a few hours to several days. " My heart stops. I knew I had expected ... but .. I was the denying. My head knew, but not my heart ... ... ...
ensued a long discussion on the timing of extubation. The fact Lia extubation before the holiday season is very anxiety provoking. Our point of view will not be heard. At the ethical level it is impossible to keep intubated longer they say. So
December 19, several of our friends come to see my princess in intensive care. Exciting day for everyone. And December 20 is the day of baptism. Baptism that I dreamed for my other child. I've done to its image: simple and nice. The whole family was present for this event. Everyone came to show their love for Lia.
Then the next day (21), we arrived at the hospital early. Extubation was scheduled for 11:00. We spent the morning glued to our daughter. Then before 11:00 am I moved with Lia in my arms. And when doctors entered the room have bet my tears to flow. I so wanted to save myself with my daughter ... .. away. ... As far as possible! Everyone sat in front of us. Then they were extubated. Lia tried to breath ... ... then she breathed !!!!! I was so proud! She gave us a little time!
I requested a double bed in the bedroom to sleep with my daughter. End the bassinet, we slept in the same bed stuck. We spent two days in intensive care. As she was stable we were transferred to the floor. In one room alone. Then when the floor they saw the state of Lia we were transferred to a palliative care room, but on the same floor.
We spent 24, 25 when my mother came to see us. We have spent glued bonded with our daughter. I slept with her every night. I woke up and was sucked into the nose several times a night with the suction device. But she persisted. We spent the midnight of December 31 to give him the biggest kiss of love! My greatest gift! Spend the holidays complete with my daughter!
Then on the night of 31 on 1 January, 3:00 AM Lia began to be in respiratory distress. I asked what she had morphine for relief. When the doctor arrived the morning we started the protocol of respiratory distress (morphine every 3 hours) Lia breathing very fast and suffering. It was crowded secretions because his brain gave him more the reflex cough.
She stayed on this protocol until the end. On 3 January, its saturation chutée up to 30%. But the breaths were constants. We spent the day we stick to turn with it. And dad for the first time in two weeks remained to sleep with us ....
That night before falling asleep I would sing her lullabies ale. I told him how much I love him ... .. my god she is strong and amazing. And we fell asleep.
At 5:30 the nurse told me awake to tell me that Leah was not breathing almost. I watched my daughter and I knew right away. The tears began to flow. I told his dad to wake up because it was the end. I sat in the bed next to my daughter. I said, changing diapers, saying she deserved to go to dry the buttocks. I kept telling him loop 'Mama Leah's there ... .. I love you so hard. Mom is here ... .. '
She took a breath ... .... Then another two minutes later. His dad leaned over to listen to his heart ... .. she left us at the same time. He heard a''boom-boom, then nothing. Leah died at 05:40 Jan. 4, 2010, surrounded by mom and dad. She left to join his brothers William and Loik which should be ready to welcome
Twenty minutes later I joined my best friend who rushed to the hospital to be with us. She is alone with mom and dad, to have Lia took after his departure.
We did a service for Lia on January 16 and we're surrounded by love as we could not have hoped for.
We do not know yet what disease to take our beautiful princess. What we do know is against it touched the heart of many people. It was and always will be a very strong little girl, a fighter, a wonderful child and adorable.
