the day - accueil
TRANSCRIPT
THE DAY I LOST MY NAME…
to bring hope…
THE DAY I LOST MY NAME…
Produced and distributed as part of the « Mes bras pour t’aimer » program of Préma-Québec, For Parents of Preemies
Préma-Québec
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www.premaquebec.ca [email protected] /prema.quebec
Author Jean-François Rousseau
Coordination and production Manina Khounchanh Ginette Mantha Jean-Francois Rousseau
Design and layout Larose design, www.larosedesign.ca
Photography Jenny-Lee Larivière, www.JennyLeeLariviere.com Personnal photos credit Dubé-Rousseau Family Cover page image Jean-François Rousseau Sky - R.I.P. 2016-2020
Printing Bureau en Gros - Longueuil
Translation Kira Zoellner
The production of this document has been made possible through a financial contribution from the Public Health Agency of Canada.
The views expressed herein do not necessarily represent the official views of the Public Health Agency of Canada
No part of this document may be reproduced without the prior written permission of Préma-Québec.
All Rights Reserved © 2020 Préma-Québec First release - July 2020
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January 21st, 2007
My name is Jean-François R.I’m a machinist with a nice house, a great big cuddly dog, an lovely spouse, and a heart full of hope.
My heart is filled with joy because my girlfriend, Caroline, is pregnant.
I never miss a chance to stroke it and to lay my face against it to be as close as possible to the little wiggling being cozily nested inside, snug as a bug in a rug.
January 21st is a Sunday.
We are celebrating my father’s 60th birthday… It’s cold. It’s wintertime, but our hearts are warm, and the future is bright.
It’s wintertime, but our hearts are warm, and the future is bright.
I am completely thrilled to see her wonderful belly!
It’s cold.
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Over the course of the evening, my girlfriend starts feeling sick. It has been a long day for her, and she is disgruntled and restless. Still, we decide to attend our prenatal class, since tonight, we are scheduled to visit the hospital wing where the baby is supposed to be born.
We tour the facilities…
At first, we joke about the situation. My girlfriend is not particularly worried. She is mostly looking forward to going to bed.I agree with her.
It’s 9 pm and I have been up since 5:15 am. I have to work the next day, so I am anxious to put an end to this little game so that my girlfriend can rest, and so I can snore until my alarm clock wakes me up for another early morning.
Our visit is so thorough that immediately afterwards, my girlfriend is put on bedrest and transferred to the gynecology department.
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We aren’t quite sure why we are here, and why the nurses are scurrying in and out of the room.They aren’t telling us much. We hear talk of contractions, of false contractions, and we don’t understand many of the words used by the medical staff. My girlfriend is becoming more and more weary, and I am increasingly annoyed!
In fact, we will later learn that my girlfriend’s illness triggered the birth process but will never know why she felt sick. A tall woman enters the room, and explains to us that she is a resident doctor in gynecology who used to work at Sainte-Justine Hospital, and bla, bla, bla…
Just perform the examination already, so we can go to bed!!
And then,our world comes crashing down…
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My girlfriend is crying as the nurses start to prep her for transfer. Who is this person asking us to sign papers? What are these papers? OMG! MY GIRLFRIEND IS CRYING! Let me comfort her!
What? Go get clothing?? What is that person saying? Why do I need to go get clothing? What clothing, for goodness’ sake!?!
Monday evening, January 22nd vers 22h30…
A storm is raging outside. It’s snowing, it’s cold. My head and heart are also caught up in a storm…
The doctor’s voice echoes in my head. She tells my girlfriend: “You are going to give birth now. You are 3 centimeters dilated, and you are bleeding a lot. We are going to transfer you to Sainte-Justine Hospital, and the baby will come tonight or tomorrow.”
Oh my goodness!!! This is crazy talk! She is only what, 25 or 26 weeks along in her pregnancy?
Wait a minute, who are all these people coming into the room?
At that moment, my name is no longer Jean-François R.
I become “Ms. Dubé’s spouse”.
My girlfriend is transferred to the Rouyn-Noranda Hospital, pending her transfer to a more specialized neonatal intensive care unit.
I am not allowed to ride with her in the ambulance.
How useful would I be anyhow?
I am so distraught, so lost.
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My father joins me… Our big dog has to sleep somewhere!
My dad must have seen my distress, seen my “deer-caught-in-headlights” expression staring into the fast approaching bumper of a truck…
We go drop off our big dog (who doesn’t understand what is happening) at my mother’s house.
My father decides to accompany me to Rouyn- Noranda.
He has decided he will support us come hell or high water.
My father is a champ.
He is calm, he looks in control of the situation, like he always knows what to do…
We don’t know it just yet, but the next few hours will be extremely eventful.
I go prepare her suitcase.
Three or four nightgowns. Two warm ones, two lighter ones. I reason that it’s always hot in hospitals. She must be comfortable. Underwear, bras, toothbrush, toiletries case… Nothing more. I have no idea what to put in there anyway.
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My father stays with us all this time. He fetches water, holds my girlfriend’s hand, which allows me to go have a nap.
The contractions haven’t stopped, my girlfriend is still bleeding profusely, and three specialists have successively examined her. She is plugged in everywhere.
My girlfriend is a superhero. She manages a smile and even a few jokes. She is strong, this girlfriend of mine.
Because I have a hunch about upcoming events. Because I am starting to understand what we are getting ourselves into. I know that I will have to be in this place for a long time.It’s sunrise. I have slept about 15 minutes.
“Slept” is an overstatement! My girlfriend and I are starting to understand… In fact, we don’t understand. We are starting to realize.
It’s not the same thing.
Yes, I sleep, because I haven’t slept in 24 hours.
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I have lost track of what time it is, but we are faced with the news that the contractions aren’t stopping. Caroline will be transferred to the Quebec City Hospital. Sainte-Justine Hospital is full of tiny preemies, and the weather is too awful for the air ambulance to land in Sherbrooke.
These are the only explanations we are given.
They’ll have to do!
In this maelstrom of paramedics, paperwork to fill in, and seeing my girlfriend disappear surrounded by nurses, someone tugs at my arm.
- Mr. R., please come with us, we need to talk to you.
The gynecologist, pediatrician, and on-call doctor pull me aside into a room barely big enough for the four of us. I am sitting on a surface I can’t identify… It looks like a broom closet.
Where the hell am I? What do these people want? It seems to me those three individuals look less agreeable than last night!
- Ok, so I choose the chicken! WHAT THE HELL SORT OF QUESTION IS THAT???
- Mr. R., your spouse has experienced a lot of bleeding. She is not in great shape. Your baby is only at 26 weeks’ gestation. - Ok… So what next??
- You have a choice to make.
The pediatrician says:
- Mr. R., there is a strong chance that they won’t be able to save both mother and baby in Quebec City. In fact, you should probably expect to lose both, so you have to choose who they are going to try to save first.
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“ Are you friggin’ crazy? Do your job and save both of them! ”
The gynecologist intervenes:- Listen, Mr. R., you don’t understand, it’s that blablabla…I don’t even remember what he said. I was not listening anymore…
I’m thinking that a few hours ago, we were soon to become a family. Now, I am heading towards a life alone… The idea of having a child has just vanished.
Will I no longer spend my life with the woman I love, this woman with whom I have been sharing my life these past several years?
What’s going on?
What a dreadful, terrible night!
Automatically, like in the movies, I reply: “Save the mother.”
Have I just indirectly killed my baby?
Have I just put second on my list of priorities a person who is already so important in my life?
Have I…
What have I just done?
What have I just experienced??? Does this type of dialogue actually happen in real life??? It doesn’t just happen in stupid and awful soap operas
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I see my father…
- Come, son, let’s go home. We’ll get you ready to go down to Quebec City.
- Screw that, Dad, we’re going to the airport!
My father answers:
- What are you going to do once you’re there?
Distressed out of my mind, I answer:
- I don’t freakin’ know! I don’t know but we’ll go anyway.
When we arrive at the airport, the ambulance is already there, on the other side of the fence, waiting for the air ambulance.
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I get out of the car and enter the NAV Canada building, before having my path barred by a closed and visibly locked door. I won’t accept that my girlfriend would die without knowing that I love her! That’s all I can think about…
A NAV Canada director faces me with a stern look: “Sir, you are not allowed to be here!”
I answer:
- Have you seen the ambulance? My girlfriend is in it… I am not even sure I will ever see her alive again. She is conscious, but according to the doctors, she may not survive. I would like to go see her.
She responds:- That’s out of the question, you are not authorized to go there, especially if it’s a medical evacuation.”
The woman I love is in this fluorescent green tin box with its blinking red lights. I haven’t even been able to tell her
“Good luck, I love you…”
It’s not going to end this way!
The expression on the faces of the paramedics, and especially the pediatrician accompanying my girlfriend is priceless when they see me banging on the back door of the ambulance.They open up. I see my girlfriend plugged in everywhere and restrained.
I stroke her toe through the sky blue-striped white sheets. - Good luck, sweetheart, I love you more than anything!- I love you too!- We’ll see each other in Quebec City!
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My eyes are brimming with tears… I can’t believe what’s happening… It’s insane!- Listen, either you open the door, or you call the police, but I’m going to get to the other side to see my girlfriend, is that clear? She gets the point. She opens the door but watches me very closely. In any case, I don’t give her a choice. It’s either this, or I scale the fence!
The door closes again. She doesn’t know her life hangs on a thread. At least, she doesn’t know I was told that I may never see her again. I will tell her this only several years later.
I don’t even know the true seriousness of the situation. I’m too dumb to have asked questions when I had the chance.I get back into my father’s van. I call my best buddy and tell him what’s happening. I don’t want him to hear the news through the grapevine.
The air ambulance arrives. As an aviation enthusiast, I have always been fascinated by the role of the air ambulance. I had always jumped at the chance to see one land or take off…
Not today. Today, the plane is leaving with my girlfriend inside. The plane is leaving with my little daughter, the tiny baby I feel I have condemned to death.
That’s how I feel…
9h44 amThe plane takes off. My eyes are watering, but I’m not crying.
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During this time, my father has left to join my mother at their business. He hasn’t slept a wink last night but will still spend all day working. My father is superhuman…
I am alone in our house. It’s cold. Inside and out.
I am done in. It’s quiet. It’s snowing outside. The house is empty, big.
Karine arrives:- How are you doing?
And then, I explode… I sob until my voice is hoarse.
I don’t even know how to stop. I almost feel I am outside my own body looking at myself, I am so knocked out!
How did we get here in such a short time???
My insides are churning, my throat feels like it will implode. But I am not crying.
We go back to La Sarre. My father is driving. We don’t say much on the way there.
Upon arriving home, I telephone our best friend, Karine. She already knows the news. My mother forewarned her.
I get her up to speed on the latest news.
- Stay there, I’m coming to you!- Ok, thanks, Karine.
Karine comforts me. She tries.
My aunt Yolande (who is like a big sister to me) joins us. Same scene. I cry. I can’t imagine our home turning into a mere house.
Around lunchtime, I ask Yolande to call the Quebec City Hospital to inquire about Caroline and Célia.
We have called our baby Célia, in honour of my grandmother Cécile, who died some time ago.
I hear my aunt talking on the telephone:
- What? She is fine? Ok… how about the mother?And there I was, not wanting to call… too afraid to hear the news… too afraid to hear what I didn’t want to hear…
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Yolande hangs up and looks at me:
- JF… Caro is doing well. She has lost a lot of blood, but they have stopped the hemorrhage. She is doing well.
- Ok, and the little one?
- She is doing well. Her heart never slowed down, and she is breathing well. That little girl is saved! She is strong!
The only thing I can do is cry. In fact, I sob like there is no tomorrow.
I cry for joy, fear, exhaustion… Karine and Yolande support me as best they can.
We share the news with my parents and Caro’s parents.
It is January 23rd
My name is no longer Jean-François R.
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I have become “Célia’s father”…
I spend part of the day sleeping on the couch. During this time, Karine and Yolande pack my- and Caroline’s- bags. Two women are better than a dumb guy when it comes to knowing what a girl needs in her suitcase! Yolande even makes me supper while Karine returns to her family.
Karine is a hairdresser. I realize she must have cancelled several appointments to spend the day with me. Karine is fantastic!
Yolande always says I am her “first son”. Today, she proves it. She is such a great mother, Yolande.
My mother Huguette and my father Roger pop by for a visit in the evening. I am perfectly aware that they had to keep working today. They are self-employed and can’t just hang a “CLOSED” sign on the door.
I can’t even imagine how powerless my mother must feel.
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They tell me that tomorrow, my buddy Tommy (Karine’s boyfriend) will drive me to Quebec City, and that he will fly home. They will pay for his ticket home. A one-way plane ticket from Quebec City to the Abitibi costs over $700!
My mother replies:
- Tommy will go with you for your own safety. You haven’t slept much, and La Sarre to Quebec City is a long drive. You will have to cover over 1,000 kilometers tomorrow!
The only thing I can think of at that precise moment is: “I am 1,000 kilometers away from my girlfriend and my daughter…”
My girlfriend is alone in a hospital room in a city she has never even seen, 1,000 kilometers from home!
My heart skips a beat.
After a long and short night of going in circles, I quickly swallow some breakfast and go pick up Tommy.
- No way! You’re crazy! I’ll get there on my own!
We leave for Quebec City.
I drive the whole way. I know that Tommy is not the kind of guy who drives fast. I want to get there as quickly as possible. And we drive… fast…
I am perfectly aware that this is not the safest course of action. However, every kilometer we cover takes me closer to my little family, so we drive… fast!
We are speeding when we come across a police vehicle just outside the village of Louvicourt. I am going over 120 kilometers an hour, which is less than the average I have been clocking since our departure.
Tommy asks: “JF, what will you do if the police car turns around and comes after you?”
Without taking my eyes off the road, I reply: “Either he escorts me to Quebec City or he chases me to Quebec City!”
That’s the last time Tommy mentions the speed at which I’m driving.
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We arrive in Quebec City around suppertime. We quickly enter the hospital and find my girlfriend. She is in bed. She is happy to see me. She smiles with tears in her eyes.
She is no longer alone, and neither am I.
A nurse comes to fetch me.
We are going to meet Célia.
I am going to see my daughter. I am going to see the little baby who was supposed to exit her mother’s tummy with the doctor giving her a little smack on the bottom, and then be placed in our arms.
I will go see a little baby who has been through a birth process that was anything but conventional.
I will go see my daughter… MY daughter…
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She is there, so small in her incubator, plugged in everywhere. She is tiny. She is beautiful.
- Hello beautiful girl, I’m your daddy… everything will be alright, Daddy is here now…
My heart breaks as I say these words. What does my presence change???
Have you seen how she is lying there, so tiny?
She is hooked up to something like 500 wires plugged into a screen lit up with so many numbers, lights, and lines, all of which are following what is happening every second in her small body.
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I can’t even touch her or take her in my arms. She is lying in a small baby diaper, probably the smallest I have ever seen, and she is lying in it!!! But what can I change about this situation???
What can I do???
But Célia is here… she is alive… She is so beautiful, so fragile, so adorable, so threatened.
A few hours ago, the idiot that I am told the specialists to save the mother!
How could I have made the choice to allow someone not to try to save such a wonderful being for whom my heart is filled with love? I feel terribly guilty, but the feeling is dwarfed by the wave helplessness that overwhelms me.
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The specialists at Quebec Hospital did an incredible job. My girlfriend has quite the scar on her stomach. She has so many staples to keep the wound closed that the whole thing looks like a 12-inch centipede wearing steel boots!
Lying in her incubator that maintains temperature and humidity levels, she is comfortable and safe.
My beautiful Celia. It is so hard not to be able to hold you, to kiss you, to rock you…
And Celia is so tiny, so fragile…
The only thing I can do is to stay glued to this incubator, watching you live… survive…
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Our stay will be a very long one. We rent a room at the Ronald McDonald House, located right next to the hospital. I say “we” because I wanted to make my girlfriend and I survived this adventure together. It was impossible for me to stay in La Sarre while my family was in Quebec City. I am very lucky that my boss let me file for unemployment insurance to allow me to be with my family.
He told me: - Go be with your girlfriend and tell me when you get back so we can start your parental leave.
Thanks, René. I will never forget this purely altruistic gesture.The “honeymoon stage” lasts about 3 days. Three days during which there are few problems. Three days’ reprieve where we learn the hospital’s inner workings, the location of the grocery stores, restaurants and other useful businesses.
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Yeah… restaurants. While my girlfriend is still at the birth unit, I decide to get a bite at the closest restaurant. I end up in a fast food joint. I order a trio with a big burger. I sit down and look around. I am alone… really alone. Everything around me is unfamiliar: I know no faces, no sounds, no views. I usually love adventures that really give me a change of scenery. But this time, everything feels heavy and sad.
It’s the worst lunch of my entire life…
Célia is doing well. Her health improves during the “honeymoon stage”. Then one morning, we arrive at the NICU and see her wearing a high- frequency respiration device. It is big and noisy like a washing machine set to spin cycle. There is a huge hose going into my daughter’s nose.
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She is lying on her back and seems to have stopped breathing. She is merely vibrating. The nurses don’t really have the time to explain anything to us. They are usually quite forthcoming but are particularly busy this morning.My girlfriend is very upset. She doesn’t really understand. It’s overwhelming to see our baby fitted with this device. She is utterly dependent on this machine, which frightens my girlfriend… and me too.
I give her a big hug and tell her:
- Don’t worry, Caro. It’s nothing. It will only help her
But on the inside, I am unable to reassure her. I seek out the warmth and the shelter of my girlfriend’s arms. I’m terrified. I’m afraid Célia has started to leave us. But what would I look like if I showed weakness in the face of adversity?
Caro has a scar on her lower abdomen that looks like something Jack the Ripper might have done, and yet she was already walking around the day after she gave birth. She needs me in the evenings when she cries. She needs me in the evenings to tell her everything is going to be all right. My girlfriend is strong, but she needs me. She doesn’t need a continuously tear- sodden wuss who doesn’t know what to do.
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After 29 days in the hospital, Célia is stable. We are tired. There is a ton of mail piling up at home such as bills and other paperwork.Caro wonders if we shouldn’t go spend a weekend in La Sarre so that we can put some order in our affairs. I know it will make her feel better. She needs this: seeing her parents, our friends, our dog…
I put on my tough-guy act. I’ll be the guy who knows everything will be fine. I don’t have a choice. It’s the only thing I can do.
- Go! I will stay with Célia. In any case, she is still on the high frequency respirator and not about to change breathing modes. Go, it will give you some respite.
She agrees, and so I drop her off at the bus depot the next morning. I blow her a kiss as the bus pulls away.
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All that’s left for me to do is go see my daughter! We have exclusive father-daughter time. I will be able to peer into the incubator and sing all my and Célia’s favourite songs: Pink Floyd’s “Wish You Were Here” and Stevie Nicks’ “Crystal”. I sing to Célia at least five times a day!
I sing “Wish You Were Here” because I wish she were in my arms. I am so looking forward to rocking her! Caroline too. But holding her is still impossible because of the incubator and all the wires, and mainly because of the high-frequency respirator. Maybe in a week. Caro will be back by then.
I park the car. It’s cold.It’s the month of February. It’s windy. It’s always windy in Quebec City.My girlfriend is on her way back to La Sarre. I stand alone on the sidewalk that leads to the hospital.
I hope Célia had a good night. I go up to the NICU floor. I take off my coat. I go through the door where I have to put on the smock, and wash and disinfect my hands. I perform this ritual several times a day.
I identify myself: - Hi, I am Célia R.’s father, can I go see her?- Yes Dad, you can come in.
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I enter her unit. The high frequency machine has disappeared! There are several nurses hovering around the incubator.
My heart stops… What is happening?!?
A nurse tells me:
- When we performed Célia’s care routine last night, she pulled out her nasal tube, and she is breathing well.
What? My daughter is breathing on her own?
After 32 days on respiratory support, Célia is breathing on her own??- But is she ok?? I mean… She is not in danger?- No, no, says the nurse. If you want, you can even hold her!
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I had lost hope! And Caro? Shoot. I just sent my girlfriend away on the bus. I made her miss this! I’m feeling really bad…But above all, I want to hold my daughter.The nurses sit me down in a rocking chair, prepare Célia, and place her in my arms. She is so light, so beautiful, so fragile…My daughter is in my arms. Tears well up in my eyes. My heart is full of joy, gratitude and pride.- Ha ha, my girl, we’ll show them that you’re a scrapper! We’ll show them that nothing will separate us!I’m ecstatic! I’m so happy to be finally holding Célia in my arms. 32 days of only being able to touch my daughter through an incubator is a long time. It’s an eternity.
Hold her?Rock her?
Having her with me, against my body, is indescribable…
After God knows how many lullabies, hugs and caresses, I have to put her back in her incubator. She has to rest. I do too…
I take the opportunity to go have lunch.
I leave the hospital. I want to shout my utter happiness and joy on the rooftops! But I am alone. No one can understand how I feel. And my girlfriend is not there. I miss her so much. I would have liked to experience this moment with her at my side. I am happy, but I have also experienced one of the happiest moments of my life without her.
And I know that she hoped for this moment as intensely as I had. This sucks the soul right out of me and fills my head. A strange feeling.
I call her to give her the news. All I hear are heart-wrenching sobs. It is so impossibly difficult!
My own eyes brim with tears. I am heartbroken. She is happy for me, but I know that in her inner heart, she wanted that moment for herself.
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There were… hundreds… of moments such as this.
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There were good days. There were bad days.
There were medical examinations where it seemed they were torturing her to inspect her retina, to ensure she wasn’t going to have vision problems because of all the oxygen she received.
There were ultrasound examinations where they checked the status of the brain hemorrhages.
There were daily blood tests.
There were tube feedings, nasal oxygen cannula.
There were the other parents we met at the Ronald McDonald House and at the hospital : The parents who went home with their children while we remained “prisoners” of the hospital; the parents who left with empty arms because their little ones lost their fight.
There was my girlfriend whom I comforted dozens of times.
There was the time when I did a return trip to La Sarre, when I had to leave my big sloppy dog with my in-laws before returning to Quebec City. I had to go hide in my father’s van to cry.
There was the evening where I spent two or three hours stimulating Célia because her heart wanted to stop beating. She was exhausted from living. Her little body was just tired out.
There was the transfer to the Rouyn-Noranda Hospital.
There was the insecurity of leaving a great team we knew well, a team we trusted entirely.
There was the time Célia almost died in my arms because of a bradycardia episode.
There was the time, in Rouyn-Noranda, when Célia choked on her milk and turned a shade of grey in my arms. I can remember the face my brother made as he peered in through the nursery window.
There were the thousands of times when I softly sang songs into her ear. It took me a few years to be able to hear “Wish You Were Here” again without being heartsick. I still can’t listen to “Crystal”, even 12 years later.
There was the time when I spent 15 minutes crying alone in the Rouyn-Noranda Hospital parking lot before going back in to see my girlfriend.
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Célia is now 13 years old.
She is beautiful.
She is doing very well. Her development was exemplary. She has experienced no lasting side effects related to her premature birth. We are deeply indebted to the professional teams at the Quebec City Hospital and the Rouyn-Noranda Hospital. These teams are entirely devoted to saving our babies.
And that’s not even a fraction of everything I experienced.All this is extenuating!Not for the body but for the spirit.I kept up the pretense of being the strong man,the invulnerable guy…But inside,I found it extremely difficult.
My name is Jean-François R., aka father to Célia and Danaë. I’m loving it!
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Today, I lend my voice in support to Préma-Québec.
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To all the dads who have to be strong, who comfort, who smile, who say that everything will be all right, even if they are hurting, crying, and bleeding inside…
I am sharing my story with you to help you understand our sulks, our silences, our “I’m going to take a walk” during difficult times…
That is why I wanted to share my story…
Jean-François R.
150 Grant Street, Suite 305Longueuil (Quebec) J4H 3H6
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