Lily’s Story of Hope

Lily was diagnosed in utero with Hypoplastic Left Heart Syndrome.  She was born in Saskatoon and air lifted to Edmonton at 4 days old where she would await her first open heart surgery. 

She had the Norwood procedure done at 9 days old.  The procedure went well, but shortly after when she was in the PCICU things changed rapidly.  She was putting out a lot of blood from her drainage tubes and her blood pressure was dropping. 

She went into cardiac arrest and had to have CPR performed. 

They re-opened her chest (just the skin as her breast bone had been left open) and found that her LA line had poked a small hole in her heart which was causing the bleeding.  They were able to fix it quickly and stop the excess bleeding.  A few hours later they needed to re-open her chest again as she now had massive clots that needed to be cleaned out.  After the second re-opening she was doing better but her lactate was still dangerously high and they were keeping a very close eye on her.  She slowly began to improve and they were able to close her chest 5 days after surgery and transfer her back to the NICU. 

After a few more days she was flown back to Saskatoon where we stayed until she was 5 weeks old, and then discharged home.  She left the hospital completely bottle feeding but once at home she had an infection on her incision, reflux which had gotten worse causing her to not want to feed orally, and was not gaining weight.  We re-inserted her NG tube and eventually went to continuous feeds as she was throwing up 5+ times a day. 

She managed to gain the necessary weight and at 5 months old we headed back to Edmonton for her second surgery- the GLENN, and a patch on her left pulmonary artery.  This surgery went much better and she was discharged home after 5 days.  She continued to struggle with eating, reflux, and throwing up multiple times a day but began to hit many other milestones- rolling over, sitting up, crawling, talking, walking, etc.  Just after she was a year old she had a G-tube inserted and this greatly helped with her eating as it cut down on her gagging and reflux.  3 months after she got her g-tube, at 16 months old, she was finally able to eat and drink enough on her own that we didn’t need to use her feeding tube for feeds! 

Today Lily is an energetic, happy, inquisitive little 2 year old.  She loves playing outside, going to the park, singing, pretending with her stuffies, and tractor rides.  She has an incredible vocabulary, and has been talking in sentences since she was about 20 months old.  She loves to read books- especially Robert Munsch and Pinkalicious and has about 20 books memorized that she can read almost word for word.  She continues to amaze us everyday with how far she has come and all that she has accomplished.

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