Beautiful Grace (3/22/05 - just before her Glenn)

Grace - 5 months old - Valentine's Day

Our Gracie was not diagnosed with a heart defect until she was born. We did have an ultrasound early in the pregnancy, but we were told that everything looked great. Having a wonderful pregnancy, we decided to have a home birth. Our due date came and went, but this little one did not want to come out. I ended being induced at the hospital, but she still didn't want to come out. Finally an emergency C-section had to be done and a few hours later Gracie was diagnosed with a complex heart defect.

Gracie was immediately flown to UCSF Children's Hospital. There she was diagnosed with a variation of hypoplastic left heart syndrome, consisting of a hypoplastic left ventricle, unbalanced AV canal, mitral stenosis, aortic stenosis and hypoplastic aorta. It was hard to believe that anything was wrong with our beautiful daughter. She was pink, wiggly and crying.

At 5 days, Gracie had the Norwood surgery. She came out of surgery with a closed chest and was extubated within a couple of days. Dr. Azakie called her a "star." Her recovery went very well. She was discharged from the hospital 16 days after her surgery.

The biggest challenge after surgery was getting Gracie to eat. She lost the ability to suck and required an n.g. tube. After working with an occupational therapist, she learned to take a bottle, but still had a very difficult time keeping anything down. She went home with the n.g. tube, on a continuous feed schedule. The feedings did not get any easier, so Gracie had a G-tube put in at two months old. Even though she is eating rice cereal now at six months old, the G- tube is still her main source of nutrition.

Although weight gain has been a challenge, Gracie is developing well. She may be a little behind the average baby, but she is doing all of the wonderful baby things...squealing, rolling around, sitting up, grabbing everything she can get her hands on. And it's fantastic.

Gracie's Glenn surgery was cancelled twice due to a coarctation of the aorta. Her pre-Glenn catheterizations was done in December 2004 and in February 2005. Angioplasty was required both times and surgery had to be cancelled. We are now anxiously awaiting the Glenn, now scheduled for March 2005.

January 2006 Update

On March 16, 2005 Grace had a heart cath that determined that she was ready for her Glenn. She was scheduled for surgery on March 18th. Just after she was put under anesthesia in the OR, she developed a fever and surgery was cancelled. We spent a few days in the hospital waiting to see if she had an infection, but nothing developed. She was happy, playful and full of energy in the hospital. Her Glenn was done on March 22nd. She did well in surgery, but had a difficult time coming off of the ventilator. On March 24, my husband and I watched our daughter have a cardiac arrest. The doctors could not get her heart going with chest compressions and had to but her on ECMO. We saw her immediately after the procedure...she was still trying to open her eyes and wiggling around. There was a problem with the chest tubes and the procedure had to be done again, just minutes after we saw her.

On March 26, 2005 we were told that Grace was not responding and nothing more could be done. Around 5pm that evening, after the tubes/machines had been removed, my husband placed her in my arms. She opened her eyes one last time and we said goodbye. She was the most amazing little person that I have ever met...always happy and smiling. We miss her very much. We feel so very lucky to have had her in our lives for those 7 months.