A Heart Beating Strong

By Rose Ann Sinay

A Heart Beating Strong

The sky is gray and heavy with snow predicted to fall this afternoon in New York. This New England weather was the major factor in my husband’s and my decision to move to North Carolina for a shovel-less retirement. It is a balmy sixty-five degrees back home. But sitting on my daughter’s couch, feeding my baby granddaughter, I feel happy, thankful and extremely lucky. I am content. Let it snow!

Mila Rose has had quite the bumpy journey since her birth in August. Major heart defects were detected when my daughter was four months pregnant and the entire family has been in waiting mode for each step, each surgery – waiting for whatever could make Mila healthy. In the meantime, keeping our baby virus-free until her heart was repaired was a full time job.

Her second operation was technically a great success, a miracle of modern medicine and the skill of dedicated doctors and nurses. However, even with the perfect operation, comes the long list of possible complications.  Fevers, irregular heartbeats and fluid around Mila’s heart plagued her recovery. After the surgery she was diagnosed with Chylothorax, a condition caused by damage to a thoracic duct. Simply put, Mila’s body could not process the triglycerides in her milk. She was immediately changed to a (pre-digested fat) prescription formula. It was a putrid-smelling, vile-tasting concoction that reacted with the medication necessary to regulate her heart rhythm. The combination turned the liquid in her stomach into a semi-solid. Keeping it down was impossible. Bringing it up was painful for my granddaughter and terrifying for her parents as they watched their baby struggle, choke, and turn as red as a tomato trying to catch her breath. It was a condition that had to be tolerated until the duct healed. There was no alternative.

Finally, at Mila’s six week post-op cardiology appointment the doctor took her off the interacting heart medication and the prescription formula. He announced it was okay for her to get “sick,” okay for her to get a cold – to cough and sneeze and to get a stuffy nose just like any other baby. We wouldn’t have to panic or rush to the hospital every time Mila got a sniffle. She could resume regular formula purchased at the store instead of ordered from a pharmacy. It was a test period, but her chest sounded clear, and the x-rays looked good. The formula we dreaded feeding to her, that had caused so much angst, had done its job, the duct appeared to be healing and functioning. Mila was healthy, and now, she could get “sick.” We couldn’t help but laugh at the irony. It was the best news we could have received. My daughter and I gave the expected sigh of relief even though we knew the worry was set too deep. It would always be with us.

It’s been a week since her doctor’s appointment, but there is already a change in my granddaughter. She’s thriving on her new formula, drinking twice the amount she did before. The choking episodes have stopped, and feeding her has become a special time again. She has gained back the weight she lost after the surgery.

Mila’s angry, red scar is fading to pink. It’s straight and regal – a daily reminder of our precious gift. She will learn to love it as much as we do. She’s moving her arms and legs at Olympian speed to make up for lost time and has started tolerating tummy time. My granddaughter will always need to check in with her “team” on a regular basis to monitor any issues that may arise, but it’s a small price to pay for this bright and promising future.

For the first time in a year, life seems almost normal. Soon she will be able to meet her cousins, aunts, uncles and friends. The oxygen tanks and monitors have been removed from her princess themed bedroom. The room is now pretty and pink…and ordinary. Yay!

The snow is coming down fast, swirling a new blanket of white on top of the existing one. The “kids” suddenly realize they can take Mila outside in her first snow storm. There is an excitement in their voices. They can make snow angels in the fluffy white stuff, build Mila a little snowman. Maybe they could have a snow ball fight.

Mila is bundled into a fat pink snow suit and whisked out into the mini blizzard. They take too many pictures… they can’t help themselves (big smile). I stand on the porch taking even more shots just in case they miss one.

I watch my family, dressed in hats, gloves and their warmest winter coats, make deep footprints in the smooth white surface. My granddaughter doesn’t disappoint, as she holds out her mittened hand to catch the fluffy white stuff. They carefully place Mila on the snow and move her wrapped, puffy limbs back and forth making an angel impression in the snow. She smiles as the white flakes collect on her long eye lashes. Her mouth is open, and she giggles as the frozen precipitation falls on her tongue.

It is a personal celebration – the smiles on all three of their faces, the excitement of a hard-won victory. My granddaughter is healthy, happy and beautiful. She’s strong and determined. She can be anything she wants to be.

Life is good.

About this writer

  • Rose Ann Sinay Rose Ann Sinay is a freelance writer typing away in sunny North Carolina. Her articles/stories have been published in The Carolinas Today, The Oddville Press and The Brunswick Beacon.

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11 Responses to “A Heart Beating Strong”

  1. Kailey Konow says:

    I can’t say thank you enough for capturing Mila’s story and all the heart (no pun intended) and emotion. I will never forget Mila’s first snow!

  2. Colleen Wenthen says:

    This got the tears rolling❤. I will never see or hear about snow again without thinking of Mila Rose. Beautifully written and most importantly a happy ending. Xo

  3. Tammy Rohlf says:

    Thank you for sharing Mila’s first few months. It is wonderful to see such a happy outcome. Here is to the first of many new experiences for Mila on her long, healthy and happy life!!!

  4. Diane Q says:

    Yes….Life is good and I am so thankful your little Mila Rose and family can take the time to revel in the little, normal things. And take such joy from them! Blessings to you all. And as Colleen wrote I will never look at snow or snow angels the same again.

    Once again, loved your story. xoxoxo

  5. Joan Eaton says:

    Thank you for another beautiful story. What a strong little princess!

  6. Pat Marino says:

    Beautiful story Rose Ann! It brought tears to my eyes and gave me goosebumps at the same time! Mila is one strong and beautiful little girl!

  7. Ida Konow says:

    So beautifully written. In my mind I can visualize clearly what you have put into words.

  8. Erika Hoffman says:

    What joyful scenes you paint with your words! I think you should write an entire book on Mila’s journey and all the wonderful moments.

  9. Linda O'Connell says:

    Your story about your sweet Mila Rose made my heart ache for her sick little heart. Thankful all is well.

  10. Rose,
    Your story is so uplifting and crafted beautifully,
    Thank you for sharing.
    Most thankful that Mila is now recovering!
    Love to all of you.

  11. Rose Ann says:

    Thank you for your comments. I appreciate that you take the time to read about our little warrior princess and reach out in support. Mila is thriving and acting like any other 9 month old. We are so happy and thankful❤️ A SPECIAL THANK YOU to Sasee Magazine for letting me take you on the journey with us!

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