Patrick's Story

Patrick, my first son, although born so early was doing surprisingly well. He responded to all treatments being administered. In fact, in his first days his oxygen levels were close to room air. But, par for course, his needs varied hour to hour as he adjusted to life outside the womb. Given Maggie's passing, I did not actually meet my little Patrick - about 800g - until later in the day. We placed Maggie in his isolette so we could have photos of our children together. The image of them together was heartbreaking - these are two children who were meant to grow up together. 

Patrick gave us hope. I touched him on the day he was born and he reached our and gripped my finger - one of those magical moments. He might be tiny, but he was clearly a little person. My littler person. I would fight tooth and nail for him. Over the following days I began expressing milk which he was given in small doses. We would watch him sleep or squirm around in the isolette. His movements were so easily linked to what I felt while I was pregnant. The nurses and doctors were always supportive and informative as we hoped for Patrick and grieved for Maggie. 

Routine scans at that point had been going well. His brain looked healthy, his lungs were responding well to treatments and although his heart had an open valve, he was being treated. 

On Wednesday morning the nurse and I noticed that Patrick was moving around more than usual, as though he was agitated. It was later discovered that his hemoglobin appeared to be low which the doctor explained may be a sign of internal bleeding in the brain. We sat on edge, watching his heart rate, oxygen, and blood pressure all change. He was given two transfusions and a platelet transfusion. Later that evening a doctor came to explain that severe bleeding could be seen on Patrick's brain. She explained that it was in both hemispheres and that this could affect speech, mobility and cognitive processing. Lee and I wept and spent the night discussing what our options may be for our dear Patrick. Dignity, comfort were paramount. 

The following morning, October 28th, we went to see Patrick. He was receiving increasing doses of narcotics to ease his irritability. We met with a specialist who explained that she had seen that there was grade 4 and grade 3/4 bleeds in his brain, as well as swelling in the surrounding ventricle. We discussed palliative care but agreed to reconvene once she had a full report about his ultrasound. Later that day that doctor came in and explained that he had actually had a second bleed, which had moved down into other areas of the brain as well as caused swelling so much as that the placement of his brain had shifted. She indicated that given his high heart rate she was uncertain that this was a reaction to discomfort and that he may not live through the night. 

We phoned my family members to come with EllaGrace. Patrick came out of his isolette and was cradled in my arms while he continued to received breathing support and pain medications. EllaGrace held his hand and kissed his head and talked to him. She gave him one of this toys. It was such an important moment for us as a family. She then left with my sister so that Lee and I would be alone with Patrick when medical interventions were removed. The moment of unhooking him, and loss of all hope and miracles, was an awful one. We sang him our goodnight song, and told him many of the same things we had told Maggie. He continued to breath on his own. He sucked on my finger lightly. I placed him against my skin to keep him warm. Given that he lived for so long on his own (30 minutes, perhaps), we allowed family in to see him. His grandparents, great aunt and aunt were there, surrounding him with love and tears as he exhaled his last breath in my arms. Patrick was then held and cried for by each person in the room. We wept and wished him well. He and Maggie are together again. Our family left, and after one more visit from Auntie Christie who gave him so much love and reassurance, we were left alone - parents and child - to say goodbye. We kissed him and gave him to a nurse, our last moments so precious. 

Now, we are left with nothing but blankets and photos of our daughter and son. We were a family of 5 for two hours and a family of four for four days. Now we are a family of three once again, but with broken hearts and memories that will be with us always. 

I weep for my children and my heart breaks for them both every moment of the day.