The rest of the story

Some time ago, I re-wrote Xavier’s birth story.

I ended that story around midnight of October 11, 2010. I am not sure why I couldn’t continue the story. Maybe it’s taken this long to process it, maybe the PTSD wouldn’t allow me to share any further, I don’t know.

This is the rest of the story:

October 11, 2010

2:00 am (or thereabouts) – I was woken for blood work, while I was up I texted D for an update. He scolded me for still being awake and that I needed to rest so I could get better quickly and come to Sick Kids to be with our son. We both had hope that we would eventually be bringing our baby home. D was never notified that Xavier had stopped breathing past the ventilator and that he was being assisted 100%. He was however notified that Xavier was having uncontrollable seizures.

I received these pictures from my cousin who went to be with D at the childrens hospital.

8:00 am- A flurry of nurses entered my room. They needed to add two more I.V.’s to administer meds and a blood transfusion that had been prescribed the day before, but because of some sort of mis-communication between the OR nurses and the ICU nurses it had never been done. I received peri care, and just wanted to feel better so I could be discharged and get to my boy. At this point I remember worrying about how I was going to be able to juggle the older two with having to be at Sick Kids for an unkown amount of time. I look back at this and think how crazy was I to have expended so much thought and energy on such a hopeless situation. What I know now and what I hoped for then are so very far off the mark it makes me feel stupid and some what naive.

9:00 am- D called me to let me know he was waiting for the doctors to do rounds. My Dad and brother arrived with the remnants of the Thanksgiving dinner my Dad had prepared the day before. When the nurse came in she quickly informed my Dad I couldn’t have it and to take it to the family lounge so I wouldn’t be tempted.

10:00 am- We were anxiously awaiting a call from D to tell us what the Doctors had said, what the prognosis was and what we were looking at in terms of treatment. He was alive and nothing in my head had prepared myself for the conversation I was about to have via conference call.

11:30 am- Two hours late, I received a call in my room from D asking if I could be put on a speaker phone with the neonatologist at Sick Kids. Gosh, trying to remember this conversation is so very painful even now. I heard them patch me through, and I remember that the anticipation of what they were going to tell me was making me feel sick to my stomach. I wanted them to cut to the chase, no preamble…tell me what we had to do to make him OK. Dr.L got on the phone and began telling me that he was very sick, and that he had gone with out oxygen for too long. His prognosis if he lived would be that of severe mental retardation and living in wheel chairs. He would have no ability to communicate and would very likely require a ventilator. In that moment my world crashed. I remember screaming and moaning like an animal. There were no words I could speak. My brother was beside me and began crying immediately, he came to me and put his arm around me…I remember pushing him away. I looked over to where my father was standing by the window in my room, he lowered his head and began crying.

I asked to speak to D, I asked him what were our options, he told me we could take him off the ventilator, I remember screaming and crying all at once, “We can’t do this, it cannot be this way, the boys, Xavier?” I was begging them to take him off life support immediately so that this would not be prolonged. Sometimes I feel guilty about this, other times I know in my heart it was the absolute right thing to do. Both D and the doctor asked me three or four times if this is was what I wanted. I kept sobbing that he couldn’t live like this, but mostly, looking back on it, I knew we as a family we wouldn’t be able to have a life that included a completely vegetative child. Maybe you can judge me for that decision, maybe you would have done it differently, but I judge myself enough for the whole world, so it’s entirely unnecessary from anyone else. There are things I could have done differently, like waiting and seeing what would happen after 72 hours, but they were pretty certain that there was absolutely no brain function left and that the rest of his organs were systematically shutting down. They asked if I wanted to see him. I declined. I didn’t want to see him and I was adamant they not bring him to my hospital. I have a massive phobia of dead bodies and in my current state, I just couldn’t see how them bringing me his body would help. I need to be clear that this not how I feel now, but in the moment, you have no idea what to prepare yourself for, no one tells you during your pregnancy to think about what to do if your baby dies. I was completely unprepared.  I hung up with D completely hysterical, my brother called the ICU nurse and asked her to give me something. They did. My husbands story and mine diverge quite a bit here and I will tell the next three hours of Xavier’s story from what D has said happened and from what my cousin told me as she was still at the hospital with D, her mom (my aunt) and Xavier.

11:45 am- D signed the DNR and request to remove ventilation from Xavier. They were uncertain what would happen. He was told he would probably die shortly after they removed the ventilator. I can’t imagine how he was feeling. The pain and utter sadness a man feels as he is about to watch his son die coupled with the fear that his wife might also be dying and helpless to help or protect either.

12:00 pm- Xaviers ventilator is removed. He begins breathing on his own for the first five minutes, slowly however, his heart rate decreases as his brain is unable to make his lungs breath. His heart is strong however, and it continues to beat causing what appear to be great gasps coming from his tiny body. Xavier has his I.V.’s removed save for an umbilical line that is administering morphine to keep him comfortable as his body prepares to die.

He is wrapped in a blue blanket and handed to his father so that D may hold him for the first time. He holds him and cuddles him and kisses him for three hours, all the while our baby is slowly dying.

3:00 pm- Some one from the Ajax hospital I was at called Sick Kids and told them I requested my baby be transferred back to my hospital. They were told I had changed my mind and had heard he hadn’t passed away yet and I wanted to see him. Sick Kids began the transfer back to Ajax to bring me my baby. Many days later, my cousin asked me why I had changed my mind, I asked her what she was talking about, she said I had requested to have him brought to me…I assured her that I did not, that I had no idea why they were told this and was quite comatose when he arrived.

3:15 pm- Hand and foot molds are taken of Xavier. They are the most precious item I posses. They are the closest I piece I have of him next to his ashes.

3:30 pm- Xavier is boarded on to an ambulance with my cousin as D races back across the city to pick up our other two boys and bring them back to Ajax to say good bye to their baby brother. Xavier is gasping every few minutes, M (my cousin) is concerned he will die in the ambulance and he won’t have his parents with him. She holds his hand all the way back to me. D manages to fly back and forth in the same time Xavier was transported to Ajax. He arrives as the ambulance arrives.

4:00 pm- A nurse comes into my room and wakes me up. One of my labour and delivery nurses tells me my baby is here and that he is still alive but dying. They prepare me by telling me he is gasping, and it is natural…things are a little blurry for me at this point. I understand he is dying, but I don’t understand what time it is, how he got there or who else was there. I went into immediate auto-pilot, or shock. I believe now this was self preservation, I needed to save my fragile mind somehow. They were telling me things, things that sounded so bizarre and foreign. I was going to see my baby, but I wouldn’t be bringing him home, he was slightly blue but don’t be afraid, he is gasping but it is normal, you need to hold your baby and say good-bye. They told me the rules…but I just couldn’t grasp everything that I was being told.

They wheeled him into my room in a bassinet. I watched in awe as the nurse picked him up and brought him back to me and placed him in my arms. He was beautiful. Words fail me in trying to describe the feeling of having him finally there with me. I kissed him mouth immediately, he was too blue, he wasn’t too cold (they had been cooling in hopes of saving his brain), I kissed his face, his nose and his cheeks. I did not cry, I lowered him to stare at him..at that face, that gorgeous sweet face that would soon leave us. I rubbed the bottoms of his feet in hopes of making them react, to show a promise of life but his feet remain limp to my touch. I push my index finger into his clamped hand and raise it to my lips. I squeezed it in hopes of him squeezing back. He didn’t.

The nurse kept pushing him back up to my shoulder…and all I wanted to do was lower him so i could stare at him.

Time blurs at this point, many people were coming in and out of my ICU room. The boys wanted to hold the baby and they did. I have video of my eldest holding him and walking around the hospital room rocking him. Some one says “talk to him” so he tells Xavier “I love you”.  He gets passed around the room and everyone holds him. I am told months later they were surprised I would give up any time holding him, but I look back at this time and think, how could I have denied ANY of them the opportunity to hold such a precious life, an anticipated member of our family?

I asked my mom if I could take his clothes off. I wanted to look at him naked, I needed to see his whole body. We lay him between my legs and I began undressing him. I looked at every single part of him, front to back and back to front. He was so beautiful, it was like looking at a doll. He looked so much like M and D, he was completely and utterly our son.

At some point there were so many people in my room, I just needed them to all go away and asked everyone to leave so that the five of us could be together. It’s all so foggy, and that is not because it was sixteen almost seventeen months ago, but because even then, I was so medicated and in shock I felt like I was outside of myself. Most of my memories don’t even come from me, they are now memories brought out by other peoples stories. I need to watch the five small videos now to remember myself holding him. To see myself kiss his sweet face.

I asked if we could baptize him to a passing nurse. She nodded and said she would see what she could do. The next thing I remember was being told the priest was there, I didn’t even bother to ask D if it was OK, but I asked my sister and my cousin to be his Godmothers and they readily agreed. The local Catholic priest arrived and we gathered in my ICU room. I remember closing my eyes and just listening to the priest speak.  On the wall opposite my bed was a window into the next room and it had a pair of pinch pleated drapes on it for privacy. I couldn’t figure out why they would put a window in between the rooms, it seemed silly. I would open my eyes, count the ruffles on the drapes from left to right and then close my eyes again, I would open them and then count from right to left. I repeated this “ruffle count” most of the night and for the rest of my stay in that room. Open eyes count right to left, close eyes, open eyes, count left to right. Again and again. Opening and closing my eyes didn’t seem to change what was going on around me, and looking back the counting was a way to keep me in reality. The ruffle count never changed, I was still in ICU and my baby was dying.

During all of this a nurse would come in to listen to his heart, and see how slow it was beating. She came in to assess how his death was progressing every hour or so. I asked D and the boys to take him outside. Wrap him up and take him to feel fresh air on his face. I couldn’t go with them, but it was important to me for them to do this for him. I was trying to squeeze a lifetime of moments in the few hours we had left with him. So what if his brain didn’t know what was going on, his soul remained in his body until the last beat of his heart, and somehow I needed him to feel the wind on his face.

When they came back in I held him on my chest, he never left my embrace until he finally passed away. Someone called the nurse to come in to listen to his heart, and she said I am sorry, there is nothing. I looked at D and cried? I don’t know that the word “cry” bears any resemblance to what actually happened, more like an explosion of tears and guttural noises.

I asked D to take him from me and then I closed my eyes. I cried inwards, there were so many people in my room, family and friends and I wanted to go away. So I did, by closing my eyes. I heard D ask a nurse to give me something, and people started leaving. D and the boys left last, and as my room settled down two nurses came in to give me peri care and wash my body. I continued to keep my eyes closed, I couldn’t for the life of me find the strength to drag my eyelids apart. I woke up the next day in a drug induced haze of grief and disbelief of what had transpired the night before.

I never saw my son again after the moment I handed him to D in the early morning of October 12, 2010. They asked if I wanted to go down to the serenity room the next day but I could not. I knew what his lips would look like, how pale his skin would be. I didn’t want any of my thoughts of him to be dead.

And this was his life, the thirty three and a half hours that he lived has forever changed me as a person and as a mother. I miss him every single day, and regret on his behalf the fact that he is not here to enjoy the family that wanted and waited for him for so long.

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4 thoughts on “The rest of the story

  1. This is all so heartbreaking Ida. So heartbreaking. Your little man is so handsome, I’m so worry he can’t be here with you. I hate that you were hospital-bound and unable to be by your side, but I’m thankful your hubby could be there.

    I’m glad your boys held him, and I love it even more that you held him last (I did, too).

    Xox momma, I imagine this was really hard to write.. .ive never “finished” my story either…

  2. Thank you for sharing the rest of your story. I think it is so beautiful that you made sure Xavier had the fresh air on his face one time. I can’t imagine how difficult it was to write, but your love for Xavier is so, SO strong in your writing.

  3. I would have made the same decision as you. You love all your children, and this decision is what was best for everybody, including Xavier. Don’t ever think anybody is going to judge you, who would?
    Thank you for sharing this with us , I know it was not easy to write.

  4. I cried while reading this. I made the same decision of course – to remove my son’s ventilator. I had no problem with him being disabled, but I wouldn’t let him suffer, it wasn’t fair. He was having seizures too, we made the most loving choice any parent could make – to let their child go. I’m so glad you got to hold him and he was with you as he died. And thank you for writing this, it is so hard to write. xx

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