Thoughts from the mom

As my wonderful father would say, this hospital experience is character building. I'm currently working on the patience virtue. The great news is that Sophie has definately passed the 2 kilo benchmark the cardio docs gave us as a minimum weight for her second surgery. As Brian mentioned in his last post, the cardio team doesn't feel that the surgery is justified at this point. It's not that I'm eager for her to go through open heart surgery, but I am eager for her to lead a normal life.

Her weight is trending up, but the rate of gain is slower than the neotatologist wants to see. To combat that, she's getting super-fortified milk. (Regular breast milk has 20 cal/oz. They're adding protein & fats & other stuff to bring it to 27 cal/oz.) Slow weight gain is a sign of heart failure in infants.

We've been working on bottle feeding for a couple of weeks now & it's not going that well overall. She has a strong suck, but sometimes forgets to swallow. Sometimes she seems frustrated & cries during a feeding. (The teary eyes are so sad!) Other times she falls into a deep sleep right in the middle of things. She's had some upsetting medical interventions the last few days that are contributing to her exhaustion. These days, she's not seeming very hungry. I think that's the consequence of her super premium ice cream diet. Plus, she never misses a meal since anything that doesn't go in through the bottle is fed through a tube to her tummy. I don't want her to miss out on nourishment, but there's not much incentive to take the bottle. Poor feeding is another sign of heart failure, but could also be due to developmental delay. (She still hasn't reached her due date & has had some tough times over the last 5 weeks.)

So we're in a holding pattern without an easy goal to look forward to. She's showing signs of heart failure, but it's not bad enough to justify surgery at this point. She won't be able to come home until she can eat on her own. We've seen very slow improvement on that front and are a long way from feeding tube independence.

The difficulty for me is not so much about the hospitalization. I know she's in great hands & needs this right now. It's more about my drive to see steady progress on a goal. Since this is the only parenting experience I know, it probably seems worse to y'all than to me. I'm clinging to patience, good temper, and the support of all our wonderful family and friends.