Lydia’s Story

Site created on November 9, 2018

In August Lydia began complaining of dizziness and as it continued we also discovered she was losing weight.  After many doctors visits and tests she was diagnosed with a congenital heart defect that had been undetected until October of this year.  Lydia was diagnosed with a large sinuous venous atrial septal defect (hole in the heart) which over time caused her right side of her heart to become very enlarged.  We have learned that this may be part of the cause for her respiratory issues (asthma) and poor weight gain since birth.  The only treatment for her type of defect is open heart surgery where the surgeon patches the hole.  Lydia will be undergoing this surgery at CHOP and is expected to be in the hospital for about a week.  We appreciate all the love, support and prayers we have received already for our sweet girl!

Newest Update

Journal entry by Allison Cassel

Lydia is now 10 weeks post surgery and was given the all clear to return to gym class, recess and all play activities with the exception of anything contact sport like or any activity that could cause a blow to her chest.  Although she was super excited to be more active, she was a little disappointed to hear that she still had to wait to start gymnastics (they don't want her falling off anything and hitting her chest yet).  She had an ECHO at the cardiologist on Valentine's Day that showed that her heart is already back down to the normal size it should be, which is AMAZING being that we were told it could take up to a year due to how enlarged her heart had become.  She continues to have an atrial arrhythmia that is requiring some further testing in May but other than that at this point we are just seeing how she responds to more activity and watching for any symptoms that could arise with activity and sports.  She has a few more weeks of being on blood thinners and then she can be off of those as well which we are all looking forward to and it will be nice to see her legs look peachy again instead of shades of purple and green from all her bruises.  

Initially Lydia had a fast 2 pound weight gain and improvement in appetite and although many of her symptoms are still gone (pain/discomfort with eating, weight loss, clearing her throat with each swallow) she has begun falling back into her old habits of eating small amounts or refusing food.  She's continuing to see her GI doctor for this and we are hoping with therapy and time this will improve as she realizes eating no longer is uncomfortable.  We were hoping to avoid needing to medicate her with appetite stimulants once her heart was repaired but after 6 years of discomfort with eating it seems like she may need a little help on the road to eating and gaining weight.

Lydia recently had a few weeks of a cold (first illness post surgery) and for the first time ever she didn't get high fevers or need her asthma action plan or throw up from coughing fits.  We feel pretty confident that the "asthma" we though she had was really from the defect in her heart and lungs and are hoping to wean her off all her asthma medication this summer and stay off of it come next winter if possible!

Lydia continues to wake up bright and early ready to take on the day - very opposite from her morning mood pre surgery and we are appreciating not having to drag her out of bed when we have to go somewhere early in the morning (although I do occasionally miss those days of sleeping in).  

Thank you for continuing to pray for our girl as she heals and we are looking forward to seeing how her heart gives her more energy and endurance to play outside this spring and summer!
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