Super Bella

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I think that most every human finds comfort in knowing what is ahead.  Some more than others, but schedules and routines give us security, hope, and a feeling of control over our lives.  If we are introspective for even a moment, we realize that this control or security we feel is fleeting and is almost guaranteed to change, but still we find comfort in the feelings.

For Super Bella’s family, this sense of knowing what is ahead is something they have learned to let go of. For many reasons, life has proven over and over again that their plans will change, their boat will rock again.  Super Bella’s family replaced needing to “know” with gratitude and laughter, and in doing so are creating an inspirational legacy.

This post is about Izabella, aka Super Bella, but the foundation that holds up this sweet 3 year old is comprised of many Extraordinary parts.

Super Bella was born on August 11, 2012.  I’m not a doctor but the fact that her mom survived her birth, let alone Bella, seems nothing short of a miracle.  Super Bella was born at just 33 weeks gestation. Her mom had been in the hospital for the 9 weeks leading up to her birth battling congestive heart failure (brought on by pregnancy) and was placed on life-saving medicine, which, in turn decreased the amount of amniotic fluid for Bella (as the medicine worked to remove fluid from around her mom’s heart).  Alongside gestational diabetes, they also fought off months of preterm labor.

Super Bella fought her way home after just 3 short weeks in the NICU.  3 weeks!  Remarkable!  If this was the end of Super Bella’s medical journey, we’d call her an Extraordinary TinySuperhero. Unfortunately, Super Bella’s battle was just beginning, but the strength she displayed even before birth assured her parents that there wasn’t a battle too big for their little girl.

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Within a short time of being home, a bad combination of reflux, vomiting and aspiration put Super Bella into respiratory distress. She was having so much trouble holding down feeds that she became failure to thrive and her medical complications began to snowball.

By the time she was 5 months old, she had been in the hospital all but 5 weeks of her life.  In that time she had overcome 6 surgeries on her GI system, including the placement of a GJ tube and started continuous feeds through her J tube.  When she wasn’t in the hospital, she was working hard in therapies to strengthen her muscles and work through developmental delays.

Super Bella will celebrate her 3rd birthday in August and she’s fought through each year.  She has been diagnosed with Central and Obstructive sleep apnea, gastroparesis, severe motility in her small and large intestines, and sixth nerve palsy.  She has beaten 15 documented cases of pneumonia and is tube fed 24 hours a day.

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There has been more than one hospital stay where her parents faced the fear of not going home with their sweet girl.  One of her recent stays included full respiratory support and sedation while her heartbeat remained at an alarming 300 beats per minute.  And yet, here she is, zooming around in her cape!  Super Bella’s TinySuperhero powers are still being revealed.  She has overcome expectations since before she was born so we have no doubt she will continue to do so.  Her family is now working with a group of physicians at Motts Hospital to organize a new care plan for Bella in hopes of improving her quality of life. Palliative care, more medical equipment and another surgery in September are part of her immediate journey ahead.

Super Bella’s superhero-grade strength doesn’t come as much surprise when you hear about her Super Sidekick Siblings (who are actually TinySuperheroes themselves). Bella is the youngest of 5, preceded by Super Hannah, Super Madison, Super Faith, and Super Cole. Each sibling has revealed TinySuperhero strength in various ways.  Super Madison is 16 years old and lives an on-going battle with Epilepsy and had her thyroid removed due to a tumor. Super Madison has an upcoming MRI to check on any new brain lesions. Super Faith is 13 years old and has a rare immune system disorder. She has also been in and out of the hospital since birth. She has overcome many surgeries and has blood plasma treatments every 3 weeks.  Super Hannah and Super Cole are thankfully healthy; however, we all know the impact that medical challenges have on siblings.  These two Super Sidekicks have handled their “abnormal normal” with grace, patience and love.  We are thrilled that their whole family was able to take a trip to Disney World for Super Faith’s special trip through Believe in Miracles!

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Family photo at Super Faith’s Believe in Miracles trip!

 

The future holds many unknowns for this family and they have no choice but to be flexible. They never know when, for how long, or who will be in the hospital, and they never know what they’ll face once they’re there. And yet, they are grateful.  I hope we can all remember Super Bella and her family as we face the anxieties in our own lives.  I hope we, too, can take moments to be grateful and to laugh, even if we cry at the same time.

 “We have had many I am going to lose our minds moments but instead have chosen to laugh, sometimes half crying (ok that is more me then Scott), chosen to pray, to be grateful in spite of how truly weary it is. We know that this is our life. No sympathy needed, not asking any, just a bit of insight into our lives. Our lives that are abnormally normal.”

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