Heart Warrior

The Day I Became a Heart Mom

image3

My heart warrior is 4 years old. Isabella is a determined, smart, beautiful, energetic and happy little girl. She’s my miracle baby. However, after three open heart surgeries, countless procedures, and many pokes and prods, it never gets easier. You think that it would and that it would be routine for us at this point. But it never gets easier.

When Isabella and her twin sister Olivia were born we were over the moon in love! Five days after the girls were born, we were discharged from the hospital and told to follow up with a cardiologist the following day. The paediatrician heard a murmur in both girls. We heard it was not unusual for babies to have murmurs, so we weren’t overly concerned. So much so that I didn’t even go to the appointment. After taking the girls to their first paediatricians appointment in the morning I opted to stay home. Not even a week from having a c-section my body just couldn’t handle another excursion. So, my husband Vince took the girls downtown with my sister-in-law Lisa, promising to be back in a few hours. Little did I know that those few hours were going to turn into an agonizing few days. The phone call I received from Vince hours later told me something was very wrong. He told me that the cardiologist wanted to do a few more tests on Isabella and that they were going to SickKids. My sister-in-law Susan would pick me up and bring me down so I wouldn’t have to wait at home. He told me not to worry but I knew he was lying. Waiting for Susan to pick me up was excruciating. I knew something was wrong but no one was telling me anything. When we finally arrived at the hospital I knew my instincts were right when I saw my husbands face.

My husband is a very strong man and I have only seen him break down a handful of times. He was trying very hard to keep it together but he broke when he saw me. “Something is wrong with her heart babe”. He led me down a hall, passed Lisa holding Olivia, into a room with a bright yellow sunflower on it. I’ll never forget that room. Every time we are in the emergency room at SickKids and I see that door, this memory comes flooding back to me like a ton of bricks. There in the room, filled with about 10 doctors and nurses, lay my Isabella. She looked so small on that big bed, covered with wires attached to monitors. I broke down. Somehow I got put into a chair and was told that my daughter was very sick but that they were going to do whatever they could to help her. The rest of the evening was a blur. Isabella got moved upstairs to CCCU where they were going to do a 10 hour echo. I didn’t even know what an echo was at that point. All I knew what that my baby was sick. How could she be? She was absolutely perfect!

That evening was our first of many nights spent at SickKids. Our family and a few friends came down to wait with us. We were given a parent room and my sister-in-law and brother-in-law camped out in the waiting room. The next day we were led into a board room and told the awful news. Isabella had a congenital heart defect called Right Atrial Isomerism. It meant that her heart hadn’t formed properly and that she only had one ventricle. She would need 2 if not 3 surgeries in order to survive. This condition also affected her organs, which were oddly shaped and placed and she did not have a spleen. I didn’t hear much after that. I just sat there in shock. Why was this happening to us? How did no one see this? Or did they see it and not tell us? In the end it didn’t really matter. It was happening and I was shocked, terrified, angry and very sad. Most importantly, I wasn’t ready to go home with my heart baby. I wasn’t ready for any of this! Thankfully, we have an amazing support system. My sister-in-law and brother-in-law offered to stay with Isabella on 4D so we could go home with Olivia, break the news to our parents and siblings, and try to get some sleep. It was difficult to leave her but she was in good hands, with people that loved her and would later become her god parents. We knew we needed to take care of ourselves and Olivia because tomorrow was going to be the start of a new life. Our life as heart parents.

That day was 4 years ago. However, even after three open heart surgeries, countless procedures, and many pokes and prods later, I remember that day like it was yesterday. Since then Isabella has defied all odds. She dances, runs, swims, sings, plays make believe and simply never stops moving! She is pretty much on par with her twin sister. She is excited to start Kindergarten in the Fall and her hospital appointments are few and far between. When I think about where she was in the first month of her life and how sick she was, I am amazed and grateful at how far she has come. I am thankful each and every day for everyone at SickKids. The surgeons, the nurses, the support staff… We made special connections with her nurses in those first few months and still keep in touch. Those are lifelong friends we have made as they too saw Isabella at her worst and are proud and happy to see how far she has come.

“You never know how strong you are until being strong is the only choice you have.” Getting the awful news that your child has a cardiac condition is not something I would wish on anyone. It is scary and sad and it never gets easier. However, going through this journey Isabella has taught me more in her 4 years of life than I could ever teach her. She is my inspiration and determination to be the best mother I can be to her and Olivia. It is because of Isabella that I try to live each day to the fullest and not sweat the small stuff. I am extremely proud of my little heart warrior. She calls us (her sister, daddy and myself) “heart warrior helpers” because we, along with the doctors, helped fix her heart. For that I am truly honoured and proud to be a heart mom. #heartmommy4life #heartwarriorhelper

Danielle

Danielle is a regular blogger for Cardiac Kids, click here to read more about her and her Heart Warrior Isabelle

Stay tuned for a post next week from Crystal

Advertisements

Compassionate Care

Today I want to tackle a subject that has haunted me for many years.  When my daughter was born with HLHS, we were given three options, a heart transplant, three open heart surgeries or to do nothing and let her die, also called compassionate care.  We chose the surgical repair and never did I ever think of the last option until years later when I was once again haunted by these words.  Our journey continued with HLHS and many years after her successful repair I took her to an Oakville hospital to meet her new cousin who was just born.  Once in the hospital one of the nurses came up and knew about my daughter had a heart defect and asked which one.  I told her she had Hypoplastic Left Heart Syndrome and her eyes looked very perplexed.  She then said to me that a baby was born here also who had the same condition.  I asked her why the baby was born here and she pointed to one incubator on the other side of the room and stated that the family did not want to pursue any medical interventions for their child.  At that moment I sat silently and stared at that incubator in the back of the room.  I couldn’t understand why no one was holding that baby and then understood why that baby did not cry.   This beautiful gift would never see the sunshine, would never play on a slide or ever have the chance to survive.  I guess I never thought about this option but if chosen I now know that families can choose to leave their baby at the hospital for their last moments.  I remember leaving and getting lost on the way home.  My mind never stopped wondering who that child was of could have been.  I do not want to open a discussion or argument on this subject but these are my true feelings and it still haunts me as to why.

Many years later one of the teachers at our local school told me someone she knew was expecting a child like Colena.  She asked if I would mind speaking with them and I eagerly said yes.  I never heard anything for a couple of days until she told me that they decided to terminate the pregnancy since they did not feel that they could financially handle it.  Walking home I once again wondered why two children who I never knew came into my world with this situation and why the choices were made.  Current statistic say that HLHS occurs in 3% of life births and I met two families, what are the chances of this. I once again want all readers to know that I am not here to judge these parents and I am not trying to open a discussion on choices, I only want to express how I felt knowing these private matters. I will openly admit that I do not feel that doctors should even offer compassionate care as an option. I have always felt very strongly about this.  In the past the odds of HLHS children surviving with either option were very poor, but that is not the case now.  They do however go through extreme pain and a cautious future but everyday the medical world is finding new answers so they must be given the chance.

One thing I certainly know is that my life has been enriched by not only my daughter but by the doctors, nurses and all the staff that worked so hard to keep my angel with me.  These special children are gifts for all people who surround them.  Rage on Heart Warrior!

Jean is a regular blogger with Cardiac Kids read her bio and Colena’s story click here 

Check back next week for a very special guest post from Kathryn about being a “CHD Sibling”

Bravery Beads and My Heart Warrior

 

 “photo

       Colena’s Bravery Beads

At Sick Kids Hospital and other children’s hospitals there is a program called Bravery Beads. This program gives beautifully coloured beads to children facing life challenging illnesses after each procedure that they endure. Beads in history have signified wealth, strength and courage the two later descriptions are something our heart kids have known all too well.

My daughter was diagnosed with HLHS shortly after birth and has a necklace with over 500 beads. This necklace is beautiful but is a stark reminder of all the pain and tears that my daughter experienced. I am so very proud that she is a warrior and a survivor but I am also sad and bewildered that she had to endure so much pain. This program is wonderful but at the same time I wish it never had to exist. No child should have to endure pain when their life is just starting. Only our Heart Community understands first hand how much pain our kids experience since our kids rarely show any outward signs of sickness, only faded scars.

Paul of Tarsus once quoted, “”Let us run with perseverance the race marked out for us”.” This is what our kids do everyday and they continue to amaze us. As advocates for our kids we must continue to spread the word. As a parent I am forever grateful for the care and expertise given to my child at Sick Kids Hospital. I am also thankful for Cardiac Kids since they are giving our families a voice to show how important Congenital Heart Defects are.

My daughter is strong, compassionate and thankfully a fierce fighter. This honourable chain hangs on her bedroom door and every night it is a constant reminder of how far she has come. I have however tied the ends with double knots in hopes that she will not string anymore on. Rage on Heart Warriors!

Jean

Jean Johnson is a regular blogger for Cardiac Kids. Read her bio and learn more about Colena’s story here.

Be sure to check back next week for Laurie’s first post!