Eva

How could anything be wrong with this baby?

The Peanut – just a few days old.

Eva (or The Peanut as she was known in my pregnancy) was born in April 2014 at 37 weeks. Before she was born I knew there were some issues. I had had multiple scans during my pregnancy as well as an amnio. After getting the all clear from the amnio at 15 weeks, I learned at the 20 week scan that she might have issues with her eye and heart. Later scans showed potential issues in her brain. During the rest of the pregnancy these concerns were alleviated and the only remaining issue was her left eye, which we would talk to opthalmologists about getting a prosthetic for. To follow our pregnancy rollercoaster ride start with post one, What’s Normal Anyway?

From the moment she was born, the Peanut brought the drama. She was floppy and not breathing. When she did start breathing it was a sad mewing as her little chest heaved up and down.

She had a rocky start but I was already smitten.

At day 2 the bad news started rolling in. If you want to read more about the details, read Not the Post I Wanted to Write.

 

The working diagnosis was that Eva had CHARGE Syndrome. She was blind, with micropthalmia in both eyes, and coloboma in her right eye; she suffered from auditory neuropathy disorder which means she was deaf; she had a missing corpus callosum which may or may not have seriously affected her development, and wider than normal sylvian fissures in her brain; she had a large atrial septal defect in her heart and a small PSD; she had trouble feeding and was almost exclusively fed through an NG tube; she also had low muscle tone.

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After the bad news started rolling in.

Eva died at 10 and a half months old in February 2015. She had started making real leaps and bounds with her development and it looked like she would crawl in the next few months. A summer of no coughs and colds was letting her attack the world as she saw fit. Her death was unexpected and sudden. One day she had a cold. The next she wasn’t breathing.

Eva was a happy, funny, loving baby. She is missed by many, most of all me.

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Like many mothers, feeding has always been a stressful thing for me. I’m finally ok with the Peanut having a G tube as long as we continue to try to get her to eat.

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The Peanut’s first outing. She had never been in her pram or left the hospital before this day, at about 4 weeks old.

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She got so big in hospital they had to bring in a big cot for her.

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The Peanut’s first captured smiles at around 3 months.

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The Peanut’s first hospital stay after being discharged at 6 weeks. 10 days at Starship for bronchiolitis.

I want this happy kiddo back!

The Peanut, 5 months old.

27 thoughts on “Eva

  1. Beth

    You have a beautiful daughter. Congratulations! I came across your blog after reading your post through The Mighty on facebook. We are preparing for the birth of a special needs boy in December and finding strength through other strong women has been a great source of peace for me during this time. I hope to hear more about your sweet little Peanut in the coming days and months. If I can collect my thoughts and organize myself I hope to also start a blog about our journey with our little boy. All the best to you both!

    1. Oneinamillion Post author

      Hi Beth, thanks for stopping by! It’s a whirlwind of an experience no matter when you find out. I’ll be thinking of you!
      Reading about other mums has helped me a lot and made me feel part of a community. I didn’t always want to be part of this community but I’m so glad it’s there! If you like writing I’d encourage you to start a blog. I’ve found it so great for connecting with other parents but also for working through my own feelings.

  2. Wren

    Hello, I have just stumbled across your blog. Peanut looks like such a sweetheart – so beautiful and truly special. It is an inspiration to me and I am sure to many others, to see her lovely and sincere smile, even with all that she has experienced already. Love is so amazing — and I can see she has and gives plenty of it! Have a great day.

  3. Joanne Vroom

    Hi, I just came across your blog. My son was born with bilateral microphthalmia too 28 years ago when very little was written about it. He was my second child, first boy. I have 6 children in total from the same husband. They told us there was a 1 in 4 chance we could have another blind child if it was genetic. We never did.

    My heart goes out to you as you go on this journey. I never knew if there was anything else wrong with my son until he got older and thankfully it was just living with blindness. I just want to encourage you and say as hard as it is accepting what your child will be missing (from our perspective), they will love life in their own way. I will always wish he could see but am thankful for the opportunity to be his family. The entire experience has shaped all of us. We are all very close and we help him any way we can.

    My son recently got a job working for a deaf/blind institute in Toronto Canada. He loves it and is trying to come up with technology to help those who are blind and deaf. He lives on his own and travels all over on the subway system. He loves life.

    Every new thing your daughter will do will be exciting. She is beautiful and a gift from God.

  4. Home Staging Montreal

    Hello, I just came across your blog. My son was also born with bilateral microphthalmia 28 years ago. He is my second child out of 6 and first boy. I was told I had a 1 in 4 chance of having another child with it but I never did.

    My heart goes out to you as you go through this time of watching the development of your daughter. Even though our sadness will come when we see the areas in life they are missing out on due to blindness, their perspective will be different because this is all they know.

    Living with blindness has shaped all of our lives. We are a close family and very sensitive to helping those with disabilities. We can’t believe how he dares to walk all over the city and take the subways on his own. I could not have imagined what his life would be like when he was still a child. Today’s technology, online suggestions from other mothers makes a huge difference in support compared to 30 years ago.

    Enjoy every moment with your daughter. She is a gift from God.

  5. Home Staging Montreal

    Sorry I posted twice because I thought I lost the first post. You can delete the second one:) Your struggle is harder and will be different than mine. You will be surprised as to how many lives your daughter will touch. The beginning first two years were the hardest because of so many unknowns. Time helped us.

  6. Arielle

    Just read about Eva on the Mighty. The story linked me here and I just wanted you to know I am thinking of you. Praying for you… Praying for peace like you have never known! What an angel you got to take care of… Sending love!

  7. meredith

    i just read about Eva in another mom’s post on The Mighty. I came over to read about her, and I want to send you love, and light, and just the knowledge that another mom bears witness to your story tonight. I see you, One in a Million.

  8. Penny

    Such a sweet little angel! I too followed the links to read the story of Eva-she has touched many lives, more than you could know and even though she was small she made a huge impact on numerous lives.

  9. Richard & Linda

    Hi Tessa,

    we were so heartbroken to read your story and learn that Eva was taken too soon, but the love you shared was so touching. She was such a beatiful little girl… we know she shall always be by your side and you forever in her heart.

  10. Dr. Tracy Bennett

    Your story makes me want to snuggle her and give you a hug! I work with families in similar situations and there’s no harder way to be a hero than helping your little one through painful challenges. Thank you for sharing with the rest of us and all my best to you and your family. xoxo

  11. Angela Kim (@angelajkim1)

    Wow your courage, strength and love for Eva shows through your writing. You remind me that even raising a special needs child- which I often find challenging- is a blessing. Thank you and my heart goes out to you and your beautiful daughter.

  12. April@FTMAD

    You are an angel on earth, that has given birth to your very own angel. What strength and love you have. What strength and love Peanut has too. The most beautiful thing about a mother’s love is that it’s wordless and soundless. Peanut feels every beat of your heart and touch of your loving hands. Thank you for sharing your story.

  13. Eileen Souza

    I just came upon your blog today…I just wanted to say that I enjoy reading your stories. So inspiring and heartfelt. Thank you for sharing with the rest of us.

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