Ruby

My husband and I found out that our second child had a heart defect while I was pregnant and went for my 18 week ultrasound/amnio. At first the defect was thought to be DORV, VSD and PS. As you can imagine we were in a whirlwind. We did as much as possible to find out about her defect and the proposed treatment that was set out by the pediatric cardiologist that we saw throughout the rest of my pregnancy. Eventually her confirmed diagnosis ended up being TGA, PS, and a large VSD and 2 small muscular VSDs.

Ruby was born in February of 2002 and was transferred to the local children's hospital. She did really well at birth and didn't need immediate interventions. By the second day her oxygen saturation was dropping and it was apparent that at some point she would need a B-T Shunt to allow more blood flow to her lungs. By the third day she was in imminent need and went to surgery. She did well after surgery until the second day post-op when she bled from  the surgery site again. The metal sutures at the sternum had caused irritation and the bleeding.

This was a setback but she finally came home after a month in the hospital. Her oxygen saturations had slowly started to drop at each outpatient visit. By June, she was to have a Glenn procedure to replace her B-T shunt in hopes that this would improve the oxygenation of her blood and allow her to grow larger. We could then do the full repair when she is 1-2 years old.

Ruby went into surgery for the Glenn and when the surgeon opened her sternum, there was an abscess found in her sternum which also had inhibited bone growth in that area. Surgery was halted, the area was debrided and she has just come home from that hospitalization. Ruby is doing well and our Glenn procedure has been rescheduled now for July 2002. It doesn't appear that the abscess was caused by infection. The cultures and pathology report on the tissue all were negative. She's had no fevers, Chest X-ray was good and her white blood cell counts were also normal (our little conundrum). It must have been caused by the disturbance in that area after her rebleeding incident when she had a drain and antibiotic wash.

Needless to say this is a very big emotional roller coaster for our family and we want to get through the Glenn and hopefully she will do well until her full repair.

Other than the hospitalizations, she is a sweet little girl and has smiled on time, loves to drool and put things in her mouth and has finally found her voice other than crying!! Mom and dad are really pleased (and so is her big brother).

We're very hopeful that all the little setbacks are just that and we will keep moving forward and she will do well. She has had an ng tube since birth and is too winded to take much of her feeding by bottle so most goes through the tube. She loves her "binky " though and again there is hope that with her improving oxygen saturation after the Glenn that she might feed better and (cross your fingers) we can get the tube out. But we'll cross that road when we get there.

Ruby with Mom in 2004

November 2002 Update

Ruby finally had her Glenn procedure in September, 2002. Her vomiting which had worsened in the 2 months prior to the surgery was gone and in return, she "found" her appetite. She went from eating nothing to fairly moderate appetite. She's on some GI meds which we're tapering off and we're on the verge of saying goodbye to the feeding tube.

The tentative plan now is to wait for another heart cath next summer and decide from there when she will have the Rastelli procedure.

She's also sprouted 4 teeth since September, started rolling over. We're looking forward to some crawling in the near future as she builds up her strength!

April 2004 Update

Ruby had her definitive repair of her transposition and pulmonary stenosis in January 2004. Ruby's diagnosis has changed to DORV with TGA physiology. We were so pleased that her pulmonary stenosis was not quite as bad as first thought, and the surgeon was able to use her own artery and valve during the repair and that a homograft conduit was not needed.

At present she has turned 2 years and is a little terror, but very very happy and the smartest little whip around. Her oxygen saturation was last measured at 97% and her appetite is so great. We're slowly weaning her off of her medicines and hopefully she'll only be left with her baby aspirin very soon. The future looks very good, no plans other than to monitor her. Mom, dad, brother and baby on the way are all very pleased!

June 2006 Update

Ruby has been doing so incredibly well since her big surgery in 2004. She's strong, active, intelligent and loving. People who meet her are so surprised about her story and never notice anything until they see the scar. She does still have a leaky pulmonary valve but at this point it is not affecting her and that will be watched. She will be entering kindergarten in fall of 2007.

June 2009 Update

Ruby is about to finish first grade, and this kid is smart! Of course she continues to amaze us with her "normalcy". She plays softball, does gymnastics and has no restrictions. She continues to be monitored for her leaky pulmonary valve. At this point all is well.