Saturday, February 11, 2012

The Faces of CHD Part Eleven: GIANNA

Written by her mom, Margit
When we found out in December 2009 we were expecting twins, we were beyond ecstatic, yet hesitant.  We lost one of our twins (Gabriel) at 27 weeks in utero due to Trisomy 18 in our first pregnancy, but were blessed with Isabella.  We were so worried going up to the 20 week ultrasound.  I remember the confirmation that it was two girls and everything was perfect.  Wow, nothing wrong, that is amazing I thought.  Then at our 24 week ultrasound, the tech spent a lot of time on Baby A's heart.  I had flashbacks to the amount of time they spent on Gabriel's heart.  Tom assured me it was fine.  I asked what was wrong.  The tech said I think she might have Transposition of the Great Arteries.  I was heart broken, I couldn't lose another child.  She said it was "a good heart defect" to have because the outcome after surgery is favorable.  That didn't help me much, but I knew she was trying to help me stay positive.  We then met with the perinatologist and cardiologist who confirmed her TGA.
Thank God, I carried the twins to 38 weeks.  This gave Gianna the best chance for surgery since she was able to grow more.  Gianna and Reagan were born 8/18/2010.  Gianna needed a procedure, balloon septosomy, within 4 hours of birth to allow more oxygenated blood to circulate. 
She had difficult heart anatomy with her coronary arteries being inverted, so she had two more heart cath procedures  to ensure they had her anatomy correct before her open heart surgery.  She had her open heart surgery to correct the inverted coronary arteries and to correct her aorta and pulmonary artery, which had grown in the wrong spot. Gianna did amazing, but had a lot of bleeding after her surgery.  
Our surgeon told us it was one of his toughest surgeries ever for him.  She had a lot of swelling in her tiny little body, and her chest was left open for 4 days.  Her stay was on the very long end for this type of surgery.  She had issues with feeding, gaining weight, and retaining water.  After 5 weeks to the day, Gianna was able to come home to be with her family.  She was in the less than 3rd percentile for weight height when she came home, and 80% tube fed.  Within 6 weeks, she was 100% bottle fed and by 6 months old she had moved up to the 10-25 percentile for weight and height.  She still has a VSD  and  narrowing of her pulmonary artery, and may need surgery in the future, but we know she is a fighter!  I thank God every day for the University of MN Amplatz Children's Hospital, Dr St. Louis (her surgeon) and the wonderful staff and volunteers.    
Gianna is a miracle.  She is my angel.  Her name means God is gracious.  She truly is a gift from God and shines on everyone she meets!

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