I'm almost through my first week of work, and much to my relief, our childcare arrangements seem to be working out just fine. As you may recall, Iggy is staying home with Magnus on Mondays and Fridays, and the other 3 days he does a nanny share with another baby. I was particularly nervous about the nanny share...his nanny is wonderful and had babysat for us several times already, but I was nervous that with her taking care of two babies, she might not have time to push him to eat enough. Fortunately, it seems that these fears were completely unfounded! When I picked him up on Tuesday, the nanny and both babies were smiling, and Magnus had eaten extremely well, and posted a nice weight gain later that evening.
So, now the only thing to worry about is Magnus's second surgery next week.
While we are dreading the surgery, we are also looking forward to getting it over with. Once Magnus has his Glenn, he will be past another big, scary hurdle. Magnus's first surgery, the Norwood, has about 85% survival nationally, meaning that about 85% of the kids who have the surgery recover from it and go home from the hospital (and even getting to the Norwood is really the first hurdle...plenty of babies don't even get to have the surgery because they are too small or too sick). And then, between the Norwood and the Glenn surgeries, there is something called "interstage mortality": about 15% of those who survive the Norwood don't make it to the Glenn. But the Glenn surgery has relatively low mortality, less than 5% nationally and even lower than that at UCSF. The third surgery, the Fontan, also has less than 5% mortality. Basically, the Glenn is the point where the survival curve stops plunging and starts to flatten out. Of course he still faces an uncertain future, but the danger won't be looming quite so close. Another benefit to the surgery is that Magnus should be much more stable afterwards, which means he shouldn't have to take as many medications and shouldn't have as much difficulty with growth and weight gain.
While we're looking forward to getting the Glenn over with, we're definitely not looking forward to the process. Just having to watch him get an IV for his heart cath a couple weeks ago was bad enough...it's going to be really hard to see our baby with all those lines and tubes and wires coming out of his body again. But if all goes according to plan, his recovery should go a lot faster this time--they said he should be in the hospital for about a week.
So, we're really hoping that the surgery goes ahead as scheduled next Wednesday. If Magnus shows any signs of illness or if an emergency case comes up, the surgery will be rescheduled. Keep your fingers crossed...
11 months ago