It was nearing 7am and at this point, Mckenna had been home with us for two nights. Mckenna and I both hadn’t slept;
- Me – my anxiety level was maxed
- Mckenna – little did I know she was going into heart failure…
I felt the moment that we brought Mckenna home from the hospital, something about her changed; it was like when we walked through our front door she became a new baby.
Immediately I noticed her behaviors had changed since being in the hospital. Her entire demeanour changed. I could sense she was uncomfortable and she was struggling to bottle feed. Every time I tried to feed her she began to choke, pull away, and her body tensed in my arms; this was not sitting well with me.
Her restlessness became so bad that when I tried to feed her, the amount of work she had to do to breathe became so difficult for her, her shoulders began to move up and down with every breath; I will always remember the discharging nurse in the NICU telling me “if she has an increased work of breathing when she is feeding, bring her in…”. I couldn’t believe we only had her home with us for two days and already she was “declining”. I felt so broken, defeated, I was in disbelief, and so upset.
Throughout the previous two days, I kept telling myself “you’re just having new mom anxiety… maybe she’s just being fussy… maybe she’s overtired… maybe her tummy hurts… maybe she doesn’t like the formula we have at home… maybe maybe maybe…”. The maybes went on forever.
The night before we brought Mckenna into the clinic, I knew she was breathing heavier, and deep down, without admitting it to my inner-self, I was frightened to leave her in her crib for the night. Rewinding for a moment, my partner and I agreed that even when Mckenna was a small baby that she would sleep in her crib; so for me to bring her into our bed was momentous.
I remember lying on my left side, while Mckenna lay beside me on her back. Bundled and swaddled in her baby blanket that she was always swaddled in in the hospital. I could not take my eyes off of her. I needed to hear her every breath. I needed to see she was okay. I watched her all night, and as it got lighter outside, she became worse, I then had her in my arms with my nose nuzzled in close to her. I did not know what to do.
As 8am reached, I called my mom at home, crying hysterically over the phone to her. My mom lives an hour away from us, and I knew she wouldn’t be able to come over and help. I barely got my words out in complete sentences, trying to explain what was going on. All I kept saying was “she’s not eating, she’s not sleeping, she’s acting strange”. As my uneasiness and anxiety grew talking about Mckenna, I began to scream to her.
The only thing I could think of doing was to call our Cardiology Nurse Clinician (who is now like my second mom). Thankfully I was able to get a hold of her and explained Mckenna’s symptoms.
I will never forget her saying these words to me… “Okay Honey, it sounds like she’s going into heart failure, bring her in as soon as you can…”.
I was sleep deprived, anxious, worried, fearful, concerned, and starving because I had barely eaten anything since bringing her home.
Around 10am, we arrived at The Children’s Variety Heart Centre, and they took us into the back of the clinic as soon as we walked in.
Truthfully, I must have looked appalling, and I say this because our nurse (my second mom) immediately came up to Mckenna and I and took Mckenna from my arms. The rest of what happened next is somewhat of a blur for me. I don’t know where she took Mckenna. I don’t know what the cardiologists were planning on doing to Mckenna. I don’t remember where I was standing in the clinic. I was an absolute disaster inside emotionally and physically, and evidently I looked like it, too. There was no more hiding that I was a train wreck that had derailed.
Mckenna was gone, and our nurse came up to me, hugged me tight and asked “when was the last time you ate something honey”? I replied “I don’t remember”. Then she asked “how much sleep did you get last night?” “None”, I replied.
Our nurse then brought me into the clinic’s social worker’s office, away from everyone else where I could calm down and collect myself.
I could hear Mckenna screaming in the background, although I did not know where she was and at that moment I didn’t even have the obvious motherly instinct to ask where she was.
It was like my inner ‘mom’ shut down. I couldn’t think. I couldn’t function. I couldn’t think like a human being.
The social worker came in and sat down with me. I told her everything, from start to finish; what happened while we were at home, what was going through my head, and the feelings that I was feeling. I sat in her office for over an hour and poured my entire heart out to her, and she listened to everything I had to say, bless her soul.
Closer to lunch time, our nurse came into the social worker’s office and handed me a turkey sandwich, and an orange juice, then she said “please eat honey”. I burst out crying again; this amazing lady went out on her lunch break to their Cafeteria, and bought me lunch. She knew I hadn’t eaten in days, and she could see the absolute tornado of emotions I was going through. I will always be grateful for her compassionate kind-hearted soul.
Afterwards, a technician in the Clinic poked her head into the room and handed me a Mars chocolate bar. She said “you enjoy, my dear!” More crying.
Lastly, Mckenna’s Cardiologist came into the room now and said “you did the right thing by bringing her in… you knew something was wrong and you were right. Mckenna is having some trouble right now doing things on her own, she has a build-up of fluid in her lungs, and we are going to re-admit her back into the hospital to take care of these issues”.
Can you believe at that moment, after he said that to me that I felt a sense of relief? Because I didn’t have to go on for another minute worrying that I was the only person on this earth responsible for taking care of her. But at the emotional and mental state I was in, I know I couldn’t care for my daughter. I could not provide for my daughter. And that to this day is still extremely hard for me to admit.
My partner, with our nurse, walked Mckenna over to the Intermediate Care Nursery in the Women’s Hospital a few blocks over while I stayed and continued to talk with the social worker.
Intermediate Care Nursery Stay
It was an odd start to motherhood. Normally you establish a routine with your newborn baby at home but I had to establish one while Mckenna was in the hospital. This was my routine:
6am wake up with my partner. Get dressed. He would drop me off at the hospital around 7am. Walk to the Nursery, and settle into Mckenna’s bedside area. I would immediately talk to her, saying over and over “mommy’s here”. Sanitize my hands. Re-fold all of her clothes and blankets from home. Re-arrange her countertop, and throw out any clutter or trash left on her countertop. Re-position my chair to face towards her bed (the chair was always moved). Then, I would re-swaddle her in the fresh blanket I brought from home (I brought fresh blankets and clothes everyday), pick her up, kiss her, and tell her I love her. Then, I would get comfy in my chair, and hold her, until she fell asleep in my arms. 9am was rounds. Throughout the day, I would change her diaper, feed her, take her temperature, and change her saturation probe from foot to foot. She would mostly sleep in my arms all day, which was all I wanted. 4pm my partner would come to pick me up, and we would go home for the night. Arrive home, eat dinner, shower, and watch TV or lay in bed, and fall asleep early.
One of the most difficult things I struggled with while Mckenna stayed there was, of course, worrying about her health. But I also felt a weird sense of relief that she was there, which made me feel guilty because I was her mom, and I was responsible to care for her. I felt like a part time mom. I tried my best to bond with Mckenna for those eight hours that I was there with her in the Nursery, but as I think back, it was still hard to do. Then, having to leave her there and not having her at home with me ate away at me, as well. And there was nothing I could do about it until she got the clear to come home, and I didn’t know when that would be.
I am so, so unbelievably appreciative and grateful for ALL of Mckenna’s nurses, doctor’s, and caregivers while she stayed in the Nursery, which I believe was a total of 16 days. It truly takes a special type of person to be a nurse. It’s not just the four long years of nursing school and practicums they have to go through, they also have to be the primary person for so many families and babies.
There was not one nurse of Mckenna’s that I didn’t “like”. Every nurse constantly asked me throughout the day while I was there, “do you need anything?” They encouraged me to take breaks, because they could see I couldn’t pull myself away. They respected Mckenna and I’s privacy together, and gave us our space and alone time together. They compassionately cared for Mckenna, and treated her like she was their own baby. They explained what “the plan” was going forward for the day that was decided by the Team of specialists who discussed Mckenna in their daily rounds. They allowed me to do as much care as possible for Mckenna, to allow us to establish that bond. They encouraged me to go home and take a break. They sensed when I was having a ‘hard day’, and knew what to say to pick me up. And overall, they talked to me like I was their friend, and with each nurse I formed a small kind of acquaintance and I enjoyed seeing the same familiar faces on shifts.
From my heart to yours,
– d ♥