I am surprised that I have had hundreds of hits on my blog since I posted the news that our baby girl passed away on June 3rd. It makes me both happy that she has been able to touch so many people’s lives and sad that so many people find the death of a baby such interesting reading. A catch 22. Anyway, Greg and I are deeply moved by all of the words of love and positivity we have received by all of our friends, family and clients. Your support is very touching.
I posted her story on FB and sent it to our friends and family via email, but I thought I would post it on my blog as well. I feel that if posting it helps one baby survive later, than it is worth every word.
I have decided to write down Cora’s story in order to avoid having to provide explanations for questions such as, “What happened?” We won’t have any answers for many weeks until we get her autopsy and metabolic test results back, but we know that the medical teams in Kamloops and Vancouver did their absolute best to save her life and give her a fighting chance.
Our hearts are understandably broken and we are still not ready to see many people (except our immediate family) or to speak to anyone about how we are coping. In a nutshell, we are not coping yet, but we know it will come in time.
Here is the story of Cora Jane LeFlufy’s short life.
When I was nearly 29 weeks pregnant, I began to have painful contractions. At first, I thought they were just practice contractions (Braxton Hicks) that prepare a woman’s body for labour, so I ignored them for nearly a week. One night I woke up in the middle of a contraction and it hurt so much that I called up to Labour and Delivery at the hospital and they told us to come and get hooked up to the monitors and to be examined by an OB on call. Sure enough, the contractions were not the practice kind because I was in the early stages of labour. The stitch that they had placed in my cervix to hold the baby in was starting to tear through my cervix because of the contractions, so the doctor decided that it had to be removed. The hope was that, even if he removed my stitch, if I stayed on strict bed rest in the hospital we would be able to hold off labour for at least another week, maybe two. Unfortunately, the baby had other plans.
After four days of painful contractions, which came every 15 to 20 minutes, the doctor examined me and found that my cervix had not only opened up after the stitch came out, but that I was fully dilated and my Bag of Waters was bulging out of it. Labour had to be induced immediately because if my water broke when the doctor wasn’t there or while I was upright, the umbilical cord or one of the baby’s limbs could slide into the birth canal and an emergency C-section would have to be performed.
Suddenly, everything erupted like a beehive and people were running around in all directions readying the room for the birth of our baby girl at 30 weeks, 3 days. As I watched everyone running around, I hung on to the calm reassurance that even if she were born now, she had a 95% chance of survival and would most likely have no long term problems from being born so early. Not only that, but I’d been given steroid shots at 24 weeks to mature her lung surfactant production, so her lungs should be more than capable of breathing properly when she was born.
I sent a prayer up to the universe to protect our baby girl and to keep her alive and thriving and then I forgot about everything else except bringing her into the world.
At 1:39 p.m. on June 2, 2010, Cora Jane LeFlufy entered the world after 20 short minutes of hard labour. She came out an angry red bundle, crying and thrashing around. She was covered in blood and mucous and all sorts of other disgusting stuff and she was the most beautiful thing we had ever seen. It was the happiest day of our lives. Nothing could top the feeling of hearing our daughter cry or seeing her perfect fingers and toes and adorable lips. The doctor showed her to me for a second before she was whisked over to the incubator and the NICU (Neonatal Intensive Care Unit) team went to work assessing her. I was exhausted and in pain, but more than anything, I was anxious to know that she was alright. After five minutes, the NICU team gave us a quick thumbs up and wheeled her away to the NICU to get her set up on the monitors and do a more thorough assessment of her health.
For the next hour, Greg rotated between staying with me and visiting Cora in the NICU. He came back each time smiling the hugest smile and saying things like, “I touched her foot and she jerked it away. She’s ticklish like her daddy,” and, “Ha Ha. She yanked out her breathing tube. Apparently, she doesn’t think she needs any extra oxygen to help her breathe.” Each report he gave made me feel more and more relaxed and grateful that our baby girl was doing so well. We were also amazed that she was 3 lbs, 4 oz. We had expected her to be closer to 2 lbs, 5 oz., so it was even better that she was larger than we had anticipated. And, since she didn’t seem to be having trouble breathing and was only receiving a little extra oxygen, we felt truly blessed that she was so strong.
I wanted to see her, but I had to wait until I was feeling good enough to get over to the NICU. Three hours after she was born, the nurses gave me the okay and Greg wheeled me over to see Cora. I couldn’t get up to walk because 12 weeks of bed rest and then a crazy fast labour and delivery had left me very unsteady on my feet. When we got to the NICU, I sat beside her and reached through the hole in her Isolette to touch her tiny little hand. She grabbed onto my finger and I felt a huge rush of love for this tiny little feisty girl who we’d been waiting so long to meet. I let her hold my finger while I touched her foot with my other hand and, sure enough, she was ticklish like her daddy. As I talked to her, she opened her eyes and looked over at me and I just knew that she knew I was there with her. The love I felt was so deep that nothing will ever top it.
Unfortunately, the baby beside her was having some complications and my wheelchair was getting in the way of the team trying to work on him, so we had to leave the NICU. I’d only had a chance to spend about three minutes with my baby girl at that point, but I was confident that I would get much more time to spend with her later, so I didn’t mind heading back to my room to relax until we could see her again.
During the next hour, I was moved from L&D to the Maternity ward and settled into my new room, waiting to see Cora again. Greg headed down to the NICU to see if we were able to go in again and the nurse told him that they were trying to get some IV lines into Cora and that we would be able to see her in about 45 minutes, so he came back to my room and we hung out and passed time. When it was time to see her, we headed down to the NICU and walked in, heading to the sinks to wash up, but before we could even turn on the water, two of the nurses came up to us and told us that we would not be able to see Cora because she was suddenly having difficulty with breathing and they needed to stabilize her before we could see her.
I can’t describe the feeling of standing twenty feet away from your newborn, a baby who had been thriving only an hour before, and seeing two doctors and three nurses buzzing around her like bees, with alarms going off all over the place and all of them wearing worried frowns on their faces. All of this while other parents of NICU babies sat quietly holding their babies and staring at us with looks of sadness on their faces. Walking out of the NICU, it was all I could do not to collapse from the sheer weight of dread that suddenly filled my heart. We walked back to my room in silence and sat on the edge of the bed, just holding each other’s hands. Greg’s face was chalk white and his eyes looked haunted. I can only imagine that my own face was a reflection of his. I took a deep breath and told him that everything was going to be just fine because I had been praying to the universe for months and months and months to watch over Cora and keep her alive and thriving. “The universe hears everything and we wouldn’t have to go through nearly six years of hell only to have something terrible happen to our miracle baby.” Greg nodded, but didn’t speak. We sat like that for another hour, each minute ticking by at a snail’s pace, until I couldn’t take it anymore and I buzzed a nurse and asked her to get us an update on Cora.
Instead of the nurse, one of the NICU doctors came into my room and explained that Cora’s blood pressure had dropped suddenly and that they’d had to intubate her to help blood and oxygen circulate to her entire body. She said that even though her lungs seemed to be working just fine, she just didn’t seem to be getting enough oxygen circulating to her entire body so they were helping her lungs pump more oxygen. She also said that they had given Cora a dose of artificial surfactant to help her lungs work better and that they were hoping it would help. She left the room and we continued to sit on the bed, watching the clock tick by.
Approximately six hours after she was born, the main NICU doctor came to our room with the other doctor (who had spoken to us previously) and she told us, point blank, that we had a very sick baby and they had done their best to try to stabilize her blood pressure, but they just couldn’t figure out what was going on. She told us that she had called the transport unit from BC Children’s hospital and that Cora would have to be flown down to Vancouver so the neonatologists at BC Children’s could check her out. At this point, I was still thinking that the universe was watching out for her and that all would be okay. It sucked that she would have to go to Vancouver, but she would be in the best hands down there, so it was worth it.
I told the doctor that I’d been thinking for hours that if Cora could just feel my touch and hear my voice, she would start improving right away. The doctor told us that it was entirely possible that this would help her and she promised to let us see her before the transport team arrived.
The moment we got into the NICU and I put one hand on her head and one hand under her bum and I began speaking to her, her blood pressure and oxygen levels started to stabilize for the first time in hours. The NICU team wasn’t sure whether it was the medicine they had been giving her or if it was my voice, but there were smiles on their faces and some cheers that she was doing better than she had in awhile. It felt good to know that they had hope that she would be okay after all. We left her in the NICU just before the transport team got there and I felt encouraged and positive that all would be okay after all. I was still a bit scared because they still didn’t know what was causing her blood pressure to drop so much, but I had faith that the NICU team at BC Children’s would figure it out with no problem.
The transport team picked up Cora and I at approximately 2 a.m. and flew us down to Vancouver. As soon as we arrived, a team of ten people grabbed Cora’s transport incubator and took off running down the corridor, leaving me standing behind the ambulance with the doctor who had come with the transport team to get us. She wheeled me into the assessment room and left me with a nurse and she, too, took off for the NICU to see to Cora.
Four hours later, I was given a room in one of the maternity wards and, after my nurse forced me to eat some toast because I was close to fainting from lack of sleep, lack of food and childbirth, a porter wheeled me downstairs to the NICU. There were tons of premies in the NICU, but Cora had her own room and there was a team of 12 people working on her when I arrived. My heart started beating out of my chest when I saw her through the swarm of people. She didn’t look like the same baby I’d seen hours before. She was so bloated her head looked twice the size it had been and there were tubes upon tubes hooked up to her with a ton of different IV lines. She had been hooked up to a High Frequency Oscillator (a machine that made her breathe hundreds of times per minute with shallow breaths) because they thought it would distribute oxygen to her body better and she had been paralyzed with drugs to keep her from struggling or moving any of the equipment that surrounded her. It was horrifying to see and I felt bile rise up into my mouth at the site of my tiny baby girl underneath all of that equipment.
When the team realized I was standing there, they immediately lost their frowns and smiled encouragingly at me. One of the nurses (whose name was Susan and who was absolutely amazing and kind) immediately started telling me what all the lines were for and what they were trying to do to stabilize her blood pressure. They were giving her a few different kinds of blood pressure meds to see which one would work best. They were giving her pain killers to make sure she didn’t feel any discomfort from all of the IVs stuck into her. They were paralyzing her to prevent her from disrupting equipment. They were filling her veins full of IV fluids in an effort to improve circulation. Like I said, horrifying.
Because Cora was paralyzed and couldn’t move around, all of the fluid they were giving her was just accumulating in her tissues and swelling her up. This was perhaps the hardest part for me to take. My tiny pink, feisty baby girl, had been replaced by a baby twice her original size whose arms and legs and hands and feet were purple because they weren’t getting enough good oxygen or blood circulation.
Despite the changes, I forced myself to look past all of it and to see my child. I went over and held her head and her feet and I told her that I was there. I told her to keep fighting and to remember how many people loved her and couldn’t wait to meet her when she was feeling better. I sang the song that I had been playing for her while she was in my tummy (I’m Yours by Jason Mraz) and I sang her lullabies. I told her about Juno and how much she would love him and love playing fetch with him and I told her that her daddy would be there soon and that he would touch and talk to her too. I cried while I talked and sang and the NICU team just kept working on her and working around me. It was so surreal, but I stayed there with her for nearly two hours until one of the nurses told me that I was too pale and too shaky and that I needed to eat something and nap to keep up my strength.
At this point, the doctor in charge of the NICU came and sat with me and told me that she was concerned that Cora’s blood pressure had been so low for so long that it could be affecting her brain activity. She was concerned that Cora could be having seizures, but that they wouldn’t know it because they had paralyzed her to help oxygen circulate to her limbs and organs. They had scheduled an EEG to monitor her brain activity and were just waiting for the tech to show up to do the scan. I also spoke to a metabolic specialist who asked me a bazillion questions about my and Greg’s family histories, medical conditions, ailments, illnesses, etc.
It was then that the doctor told me that they had absolutely no idea what was wrong with our little girl. They had done tests on her heart (which looked perfectly normal but didn’t seem to be pumping properly – she said, “it looks kind of stunned”), her lungs (which were now functioning perfectly well because the artificial surfactant had done its job), her brain (an ultrasound which came up with nothing abnormal) and her other organs and blood. They had checked her for infection, but she was fine. They were basically at a complete loss as to what might be causing her blood pressure to stay so low and they thought that some metabolic (blood chemistry) tests might reveal what the problem was and whether it might be a genetic problem passed down by Greg or me. I signed all of the forms they needed me to sign to test her and I headed back up to my room to try to rest a little.
I laid on my bed for the next three hours, staring at the ceiling and running through a million possible reasons for Cora’s condition in my mind. Had I done something to cause it? Had I eaten something or taken something that had caused her to develop a condition? Had the Tylenol I’d taken for sore hips caused a reaction in her? Did I create a problem because I had gotten up too many times during bed rest? Had I not eaten enough? Had I eaten too much junk food? Did I have some sort of genetic problem that I passed on to her without realizing I had it? Would she be okay? Etc. I also spent a good deal of that time repeating the same prayer over and over and over in my head. “Dear Universal Soul, thank you for keeping our baby girl alive and thriving. Please continue to watch over her and to give her the strength she needs to pull through this like you’ve given me the strength to get through such a difficult pregnancy.” I must have repeated this hundreds of times during the three hours I laid there, waiting for Greg to arrive at the hospital. I also managed to eat half a bagel with some peanut butter on it to keep up some semblance of strength. It was tasteless and I had to really force it down because I needed the strength it would afford.
When Greg finally arrived, we raced down to the NICU so he could spend some time with Cora and we stood, side by side, touching her and talking to her while the hive buzzed around us. I didn’t think it possible, but she looked even worse by that time. Her little head looked misshapen because the fluid in her face was starting to fill up around her head too. Her tongue was swollen and sticking out of her mouth and her eyes were bulging beneath her lids. I choked down sobs when I looked at her face because I didn’t want Greg to feel my sudden distress and the feeling of dread that had settled into the pit of my stomach. I sang another song to her and Greg talked to her for awhile and we listened as the neurologist explained to us that Cora’s EEG had shown no signs of seizures. I breathed a huge sigh of relief and felt hope bloom anew, only to have her next words crush my heart. “There were no signs of seizure, but her brain activity was abnormal and minimal.” I didn’t quite understand, or perhaps I didn’t want to understand what she was telling me, so I just nodded and continued to sing. Ten minutes later, the main doc asked us to step outside of the room so we could have a talk.
We went into a family conference room where the main NICU doc and one of her colleagues explained to us, as gently as they could, that Cora’s prolonged low blood pressure had caused her brain to slowly die due to lack of oxygen. They told us that they had done everything they could and that there was nothing more to be done. They still had no idea what was causing it and they had never seen a baby sick like this before. The best thing we could do as parents would be to let her go by removing her from the ventilator because she was no longer really there.
At this point, while Greg and I sobbed in each other’s arms, I couldn’t help being angry at the doctors. They had known that Cora was going to die from the moment they had assessed her upon her arrival, but they had let me hang on to hope all through the day. They had purposely kept me optimistic until Greg had finally arrived and they could tell us the bad news when we were together. I was so angry at their deceit, but I could also understand how they didn’t want me to have to deal with the news on my own or Greg to deal with it while he was driving down from Kamloops. My anger was short lived and soon gave way to agony over having to make the decision to unplug our baby girl from life support. But, really, what kind of life would that be for anyone? Our decision was quick and final – we wanted her off the machines as soon as possible. It wasn’t an easy decision, but it was really the only loving thing we could do for her.
It took them two and a half hours to prepare everything so that we could cuddle her while she was still living, before they removed her from the machines. We stood at her bedside, holding her head and feet and talking to her while they rearranged everything and brought in two chairs for us to sit in while we held her. We decided Greg would hold her first and for however long he wanted before I would get a cuddle. However, when he finally had her in his arms, with two people hovering over him, holding up all of her tubes and lines, etc., I realized I couldn’t hold her that way. As I watched him cuddle her and sob uncontrollably, I knew it was time to let her go. At one point she opened her eyes and seemed to be looking up at him, but we knew she was barely there (if at all) and we both broke down again.
When he was ready to pass her over to me, I asked that they remove all of the lines and the tubes so that I could hold her while she passed.
Imagine what it would feel like to be able to hold your newborn for the first and last time all at once. To feel her warm body snuggled against you, but growing colder and colder by the second while you sit there and can’t do a thing to help her or to save her. It hurt like nothing I have ever felt before. It still hurts as though I am reliving it each moment I am awake. It felt as though a piece of my soul had been ripped from my body and it will never be replaced or filled up for the rest of my life. Pain like nothing I have ever known.
It didn’t take her long to pass once they’d removed her breathing tube, but even after she was gone, I held her for another half an hour, until she had grown cold in my arms and Greg and I had shed enough tears to fill up a football stadium. Then he took her and gently laid her back on her bed, we kissed her goodbye and we walked away from our miracle baby forever.
Cora Jane LeFlufy, 3 lbs. 4 oz, was born on June 2, 2010 at 1:39 p.m. and lived for 30 hours before we let her go home again. She was the best thing that ever happened to us and also the worst. At this point, we really have no idea how we are ever going to get through this, but we are very grateful for all the loving support we have received.