After we returned home we had to figure out what our new normal was.  We had a healthy, active two-year-old, and a delicate heart baby.

We knew immediately that we wanted to give Blake as ‘normal’ of a life as possible, but we also didn’t want to be careless or naïve about his health.

Nursing was an important issue for me because I wanted to be sure I was giving Blake every opportunity possible to be as healthy as he could be.  But, because of his prolonged time in the hospital and aspiration issues, this wasn’t possible for the first three months of his life.  I continued to pump during this time until doctors deemed Blake strong enough to nurse and now at risk for aspirating on breast milk.  At three months old, Blake nursed for the first time.  For a baby that was so tiny at birth and during his surgery, it was miraculous to see him grow to be so strong.

In July 2008, we scheduled his second open-heart surgery due to his rapid growth and his oxygen saturations beginning to drop into the 80s.  His pulmonary artery wasn’t big enough for him anymore and he was growing out of his artificial shunt.

We planned our pre-op trip to Houston.  We came to TCH for Blake’s pre-op cardiologist appointment, and everything was going as well (Blake was patient and in good spirits during a long day of tests), suddenly his oxygen saturation rates started to dip from his normal (mid 80s) to the 60s (they like for babies like Blake to stay between 75-85). Saturations that low can be dangerous, so they decided to give him oxygen and admit him for the night. Blake and I stayed overnight, and it was mostly uneventful, he slept well (unless they were poking on him or trying to take his temp in the middle of the night) and his saturations remained in the 80s all night.

The next morning they performed a heart catheterization procedure. They inserted a scope up an artery in his groin and fed it all the way to his heart. Once inside the heart they inserted a dye and take photos so they can have a very clear understanding of the shape of the heart before open-heart surgery.  The procedure only took about an hour, and they determined that in fact Blake had outgrown the shunt in his heart and he was a good candidate for the next surgery (Glenn procedure).  After the procedure, Blake didn’t recover well. Throughout the day his saturations continued to dip to really dangerous levels, and I can honestly say that I saw him change in one day from a happy (seemingly healthy) baby to a sad and sick baby. For a mother to watch her child change (literally in 24 hours) in front of her eyes and feel so helpless is one of the hardest things to experience.

That night Blake was transferred to the ICU, and they declared his surgery an emergency (which pushed it up by a week).

After all the chaos of the day settled, I realized that he sensed that we were in the place where it was OK to get sick, so he allowed himself to get sick so he could get fixed.