Week Two

I started to write yesterday when I was deep in a pity party for myself. I had two kids stuck in intensive care indefinitely, a sick two-year-old, and I didn't know if I would be returning to work next week. But that wasn't the worst of it. The worst part was I was a nursing mommy and couldn't even drown my sorrows in a six (or twelve) pack of beer. Nooo!!! Life was just not fair.

But I didn't blog then, and I am glad, because things are looking up today. And that's kinda the story of the last week. It has been a constant roller coaster. We've had some great moments - sneaking R in and letting her spend time holding and feeding M, finally getting the boys together, and watching M discover how to nurse by himself. And we've had some not so great moments - having to wear surgical masks to touch our babies, doctors trying to ship my boys off to Chapel Hill which is two hours away, doctors trying to ship my boys off again, discussions of bone marrow testing, bad test results, more bad test results, and beginning really scary genetic treatment.

But that is all in the past; here's where we are as of 10:30 this morning.

The boys continue to have a lack of neutrophil, a type of white blood cell needed to fight infection, in their bloodstream. Their doctor now knows the low neutrophil count is due to the fact that the boys have an anti-neutrophil antibody (try saying that one five times fast!) in their bodies, and the neutrophil is binding to this antibody rather than to germs. While this sounds bad, this is actually really good news, especially compared to some of the alternatives that have been discussed. While they still don't know why this antibody is present, given that both of the boys have it, it is most likely that I passed it to them while I was pregnant. If that's the case, the level of the antibody will decrease over the next few months, and they should have no long term problems with their immune systems. Even better, this problem typically spontaneously disappears which means the boys won't be subject to long-term treatment over the next few weeks/months.

It also means, that as long as everything else goes well, the boys will get to come home in the next week as long as we see their pediatrician weekly and a phlebotomist (blood doctor) monthly for awhile. We can do this.

So in order for the boys to come home, they have to avoid infections and any other new problems, and they have to learn to eat on a schedule. At least from what we've seen, L has this scheduled eating thing down. He is 5 for 5 on finishing the bottles Jeff and I have given him over the last two days, and we are desperately hoping he keeps it up. M is still not there. We did have some major food victories with M this week - he finished a bottle for Jeff and has started nursing like a champ. In an effort to get M to eat enough from a bottle to keep the doctors happy, I have temporarily stopped nursing him, so hopefully he will catch on soon. He seems to be a day or two behind L on most things, but when he gets them, he makes sure he does them perfectly. (And I suppose I don't even have to mention that we are going to completely revamp how they eat when they get home so we can get away from this insane force feeding schedule.)

This week has taken a toll on R, too. I have been at the hospital from 8:00 - 6:00 every day which has left little time for her. She's had Dad or Gran every day, but that's still not the same as mommy time. Our one child with the amazing immune system, finally broke down and was sick with a cold starting during the night on Thursday/Friday. We cut our time at the hospital short on Friday. After I spent an afternoon with her, and she got a good night's sleep, she seems to be just fine.

Now if only we can get, and keep, L and M to be just fine too!