After lots of thought, I decided to put together this blog not only for myself, but for anyone who is interested in our experiences, and for others to relate to who may be experiencing the same kind of struggles we are.

I am a mother to the most beautiful, smiley, cheerful, tough, brave, courageous and exquisite little girl, Mckenna.

Mckenna has brought so much joy, happiness, laughter, warmth, comfort, firsts, endless memories, harmony, and bliss to my life since coming into it. She is my gift. My daughter is the reason I go on every day, with a smile on my face, even on the hardest days when all I want to do is cry. By simply being happy self, she can make me forget whatever I am worrying about.

When I found out I was pregnant, I asked myself “what am I going to do…?” Now I ask myself “what would I do…” without my amazing daughter, who is my total existence.

This is how my life has changed since becoming a new mom and these are my stories about what I’ve experienced since the day I found out I was expecting Mckenna; the hurtles I’ve overcome and the milestones together we met surpassed.

So, what is a heart mom?

A heart mom is a mom who cares for her baby who has heart conditions or defects. A heart mom experiences the struggles her baby goes through, just in a different way. Although she does not experience the physical health problems, she experiences it emotionally, mentally, and psychologically. A heart mom wishes she could be the one going through what her baby is going through, and not her baby. A heart mom would do anything to trade places with her baby. A heart mom feels like she can’t protect her baby to the fullest. A heart mom never stops worrying about her baby. A mom who knows close to the same amount of information as a nurse who has a nursing diploma. A mom who can explain her baby’s entire health history effortlessly in under two minutes. A mom who knows endless numbers like medication dosages, measurements, important milestone numbers, weights, and formula recipes. A mom who knows countless doctor’s names, faces, titles, and responsibilities. A mom who can never “relax”. A mom who doesn’t quite entirely enjoy every moment with her baby, because she is constantly looking for something to be wrong. A mom who is always assessing her baby’s breathing, skin color, inputs, outputs, fontanel, and overall health continuously. A mom who is not only her baby’s mom, but her baby’s nurse, cardiologist, doctor, and her baby’s voice. 

As a heart mom, 

I have seen my daughter turn completely blue in colour (severe cyanotic episodes) hours after her first open heart surgery. I have spent eeks in the hospital by her side, staring and analyzing the numbers on screens of the heart monitors. I have had to hand over my daughter to cardiac surgeons, praying that someone higher than us takes control of their hands and guides them to complete my daughters surgery without a single complication – essentially putting my daughters entire life in someone else’s hands. I have seen the fear, worry, and concern on nurses, doctors, and specialists faces that have cared for my daughter.  I have had to leave my daughter in the hospital, and was not allowed to bring her home when she was first born. I was never able to hold my daughter when she was first born. I went through 30 weeks of pregnancy “not knowing” how my daughter’s health was going to be when she was born. I have had to comfort my daughter before and after being poked with needles, in her arms, feet, neck, hands, and the worst, the side of her head. I have had to see my daughter suffer when recovering from her first open heart surgery, not able to hold her or do anything to comfort her. I have had to see my daughter hooked up to IV machines, breathing machines, catheters, and draining tubes. I have had to fly to another province, on a plane alone with my daughter, and travel through an unfamiliar city for her first open heart surgery. I lost special moments in the first month of my daughter’s life to several hospital stays. I have had to be picked up off the floor by her dad after collapsing after arriving home from a visit from the hospital, without my daughter. I have spent days in bed, depressed, and secluded from the world

Guilt – a feeling of responsibility or remorse;

The guilt of questioning my decisions. The guilt of thinking the way I think. The guilt of having to put my baby through major surgeries, hospitalizations, endless appointments, and discomfort. The guilt of thinking could I have done something differently to change this. The guilt never ends, and it is ultimately the worst feeling to have as a heart mom. It never leaves my mind. It sinks deep into my body, and makes me question myself as a person. 

It’s not usual for me to express how I am ACTUALLY feeling, because I feel as though it’s not “about me” anymore – it’s about Mckenna. She is my main focus, priority, and the reason I am still standing. I am positive for Mckenna, and I post and express positive things in our life to others on social media’s because it’s easier to do. But here is the truth . The truth is it’s been an extremely long and tough journey for us a family.

I believe I have proven the statement to be true – “what doesn’t kill you makes you stronger”.

From my heart to yours,

– d  

 



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