Part 4: The last day with Julian

On January 13^th as I watched my hospital room get brighter as the sun rose, I was thinking and day dreaming about my boys. I was picturing my little Jean-Luc sleeping in his incubator in the NICU and I was trying to imagine what Julian’s hospital room might look like. I was also hoping, with all my might that he was going to pull through. I remember getting up and pulling myself together. I went to see Jean-Luc, and then my husband called Sick Kids to get an update on Julian. The night before, things were looking better and we were hopeful after receiving good news. However, this one phone call changed my life forever. Watching my husband’s face as he talked to the doctor and listening to his voice crack informed me of what was soon to come. I didn’t need to be on the phone listening to the update, I just knew what was happening and I lost it. That was my moment of utter despair – at that moment I knew I was going to lose my son. My husband got off the phone and told me that Sick Kids wanted us to both come to the hospital, despite me having a caesarean only 24 hours prior. They said they would send an ambulance for me if our hospital wouldn’t discharge us. I knew we were going to say good-bye and it was killing me. I called my parents to tell them we had to go to Sick Kids but the words would not come out of my mouth. The only sounds I could let escape my lips were deep agonizing moans of pain and grief. It felt as if my world was crumbling and I was losing control. My husband conveyed the message to my parents and then set off to begin the process of my early discharge from the hospital.

After a mess of much unnecessary drama from the on call obstetrician, I was discharged by 11am from the hospital, without any medication but Tylenol. I had to leave my other son in the NICU as we headed down to Julian at Sick Kids. On the drive we were pretty silent, we were sick with pain and sadness and the unknown. At one point of the drive, my husband asked me how far we were willing to take it with the extraordinary measures the hospital was currently using to keep our son Julian alive – we were on the same page and we continued our drive in silence. As we pulled off the highway there was a billboard that read ‘BasicFunerals.ca’ – it was like a slap in the face. I was going to have to make those plans and decisions and I didn’t need to see that stupid billboard to remind me of it.

We arrived at Sick Kids and made our way up to Julian’s room. There he was, hooked to monitors, tubing and IV’s. I couldn’t believe how covered in lines he was. There were also teams of doctors constantly attending to alarms alerting, two primary nurses, as well as numerous specialists assisting and monitoring his case. It was horrible. All I wanted to do is hold my little boy and smell his sweet hair. But I could barely touch him as he was so fragile.

We were directed to a small room to discuss his case with his lead doctor and a few other members assigned to him. His doctor explained that things had become progressively worse throughout the night and morning. Julian began having multiple seizures and his tiny body was shutting down. They would give him a medication for a specific issue only to have another problem arise immediately. His kidneys were also in complete failure, despite having a catheter he had not passed any urine since arriving, his body was getting puffier and puffier from all the fluids going into his body but none coming out. Our doctor also explained that what was happening to our dear son is often what they experience in cases similar to ours. She told us that the outcome was bleak if he managed to survive the horrific trauma he was experiencing, and she gave us her honest opinion on what she would do if it was her son or grandson. We already knew we were losing him, we chose to spend the rest of our time with him alone and together.

We were unable to move him while he was ventilated, there were far too many lines and tubes – so we cuddled him right where he was. The nurses put up screens around us and brought me a rocking chair to sit in and hold Julian. I can’t even describe the short time I spent with him. I was trying to squeeze a life time of cuddles into a few short minutes. My husband and I inspected every part of his tiny body – he was absolutely perfect. My husband took video of me holding him and lots of pictures. My husband held Julian and got to spend some time cuddling him. After his ventilator was removed we took Julian to a private room and held him in our arms until he was no longer with us. Again, I just don’t have the words to describe the time we got to spend with our son, every moment was so special and is etched into my memory.  

That evening we bathed our son for the first and last time. I changed his diaper for the first and last time. And I dressed him in his coming home outfit, which I had brought with me to the hospital. We called our parents and told them what had happened from our private room while we still were holding Julian. We spent a few hours in that room, just the two of us and Julian – I often long to return to those hours after Julian had died and we were still with him. I would have taken more picture, cuddled him more, smelled him hair and skin more. I would have videoed his bath, redone the mould of his foot in my hand, taken more hand and foot prints – and the list just goes on.

When I think back to the evening, I have no idea how we were able to leave Julian that night. I think the only thing that gave me the strength to hand Julian’s tiny body over to the nurse was the fact that I had another very tiny and fragile baby in the NICU that also needed his mommy. Somehow I was able to say my final goodbye to my son. My husband and I kissed him and told him how much we loved him and were going to miss him and then we called the nurse.  She came to the door, and I told her I just needed to say goodbye one more time. I looked at Julian’s beautiful face, I took one final sniff of his sweet scent and kissed him goodbye. I then handed him to the nurse and watched her walk away with a piece of my heart in her arms. My husband and I cried in the little room we had just spent the evening in with our son. We pulled ourselves together, gathered our belongings and prepared ourselves for the trip back to the other NICU, where Julian’s twin brother, Jean-Luc was waiting.  As we made our way to the car, we walked pass where the nurse was taking the final measurements and weight of Julian – it took all my might to not go in and grab my son. I so desperately wanted to be bringing home my baby, not leaving him at the hospital, alone and dead. All I left with that evening is a receiving blanket that smelled like him, not nearly close to what I had dreamed of for the past nine months.

We left the hospital and drove to see Jean-Luc. We arrived just before midnight, and for the nurses who asked, we explained what had happened. I was able to hold Jean-Luc that night, something that was so bittersweet.

We made the decision to have Julian cremated. With Jean-Luc still in the NICU we felt there didn’t seem to be time to hold a funeral for Julian, and we were just so overwhelmed with emotions and stress. I now regret not holding a service for him, I don’t know how we would have done it or if I would have been strong enough to handle it, but it is one of my many regrets. We had said our final goodbyes to Julian at the hospital and that was the last time I saw or held my son.

It has been such a difficult journey, one full of extreme lows mixed with intense highs. Losing one twin, while one still survives is just something nobody should have to experience.  I don’t think one could truly understand it unless it happened to them, and nobody should ever have it happen to them. I’ve spoken with other baby loss mamas and they have similarly explained it like “it’s like being in a club that nobody wants to be in, but unless you are in that club, you just can’t fully understand it.” It's horrible, losing a child is just completely unfair and horrible. In the end it doesn't matter who or how or when it happens -  nobody should have to experience the hurt the loss of a child brings. 

 

I miss Julian every day. I think I will always miss Julian every day. He was part of me. I created him. I carried him and I loved him with the most intense kind of love. I grieve everyday for Julian's existence. I grieve for what could and should have been. I also grieve for his brother. I grieve for the bond they should have shared, the friends they should have become and for the life they both lost.