Thursday, February 25, 2010

Back to work and anticipating the Glenn...

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'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...

Friday, February 19, 2010

3 months

Magnus is 3 months old today! And it's hard to believe, but according to the calendar, this was my last day of maternity leave. As of Monday, I'm back at work full-time.

The week after that, he's scheduled to have his Glenn on March 3rd. Yes, the timing of the surgery and my return to work makes no sense, but I planned to come back to work next week when we were thinking his Glenn was going to happen in April or May, and our nanny share starts next week, so I may as well take advantage of that and go back to work for that one week before taking time off again for his surgery.

I tried to make the most of my last week of leave, especially since we also happened to have some beautiful weather. We took Magnus out to brunch and on some long walks, and he also had his first trip to the beach (he was awake in the car all the way there, and throughout our pre-beach lunch, then fell asleep 2 blocks from the beach, only to wake up when we were 2 blocks away again).

Unfortunately, Magnus has decided that he hates riding in the car, and will scream continuously unless there is someone back there with him to keep putting his pacifier back in his mouth after he spits it out every 20 seconds or so. Actually, if he spits it out and it lands on his shoulder, I have developed the ability to reach behind me while driving, grope around until I find the pacifier and then grope around to put it in his mouth. Which is probably not the safest thing in the world, but trying to drive when you're in a car with your screaming baby is also not that safe. I'm not sure if this new-found aversion to the car is a result of the fact that his car trips usually end in doctor's appointments, but our attempts to break this association by taking him other places have not been successful. I hope he gets over it soon, though!

We are very relieved that Magnus has been doing really well with weight gain in the last couple of weeks. He did lose weight one day (which meant another doctor's appointment, ugh) but then gained it right back after we increased his Zantac dose. And in addition to getting bigger, he's getting to be more and more mature. Yesterday, he laughed for the first time, and today he held a rattle (after I put it in his hand) and put it in his mouth (which might have been an accident, but I'm counting it anyway!) He knows our voices, and he smiles when we do something funny, which is, apparently, pretty often. He's also vocalizing more and more...I have to try to make a video of him "talking" one of these days.

But the biggest excitement of the week was the birth, on Tuesday, of Magnus's new cousin Oscar, my sister's baby. He weighed 7 lbs, 8 ounces, which is good, because I've been saying for a while now that my goal is for Magnus to weigh more than Oscar! Magnus is now 8 lbs, 7 ounces, and hopefully he'll maintain that lead! We're very excited for these two little guys to meet, but that probably won't happen until this summer, since Oscar lives in Massachusetts.

Tuesday, February 9, 2010

And we're home!

As I had hoped, the hardest part of cath day turned out to be the hours we had to fast Magnus before the procedure.

They'd told us the cath would take 3 or 4 hours, but it took less than 2 (so I guess that made up for getting started 2 hours late). The doctors said that everything went very smoothly, they didn't need to do any interventions, and that his anatomy and pressures all look good and that he's a good candidate for his Glenn surgery (which is scheduled for 3 weeks from tomorrow).

They had to observe him for 4 hours after the procedure, during which time he mostly slept, ate and fussed a little bit, and had a couple of visitors. It was pretty weird having him in the hospital again after having him at home. I was worried that he'd be really fussy about having to be in the crib because at home he doesn't get put down too much because he doesn't like it, but he was OK, maybe because he was still recovering from the anesthetic.

After his time was up, they pulled out his IV and disconnected him from the monitors, and we put his clothes back on and took him home, where he continues to eat and sleep. Let's hope the sleepiness continues through the night, and that he doesn't decide that he's well-rested at 2 a.m.!

Well, that was fast

I barely finished writing that last entry when they paged me to say that they were done and that everything went fine! I don't have any details, but I'll be sure to write again sometime today with what I've learned.

Cath day

We dropped Magnus off in the cath lab at 10:20 this morning, and they've told us it will take 3 or 4 hours. They gave me a pager, but they're not going to page me until they're done unless they find the need to do any interventions (unlikely) or if something goes wrong (even more unlikely). We are a little nervous, of course, but this is much easier than dropping him off for surgery.

This morning, however, was pretty miserable. As I mentioned before, Magnus was scheduled to be the first case in the cath lab, but what they failed to take into account in telling us when to come in is that they start late on Tuesday mornings because they have a weekly meeting. We're used to and pretty tolerant of "hurry up and wait" most of the time, but this time was pretty awful because they told us to stop feeding Magnus at 2 a.m. (when we could have actually waited until 4 a.m. to start his fast). He started getting pretty unhappy by 4 a.m., and by the time we got to the hospital he was screaming inconsolably.

Then they told us that he needed to have an IV placed before being sedated so he could have blood drawn so they could check his blood type in case he needed a transfusion. I pointed out to them that he had already undergone multiple blood transfusions in this hospital during his previous stay and that I also happened to know his blood type. But apparently there was no getting around it, it was "hospital policy." So anyway, between the hours of fasting and the insertion of the IV, he was very unhappy and so were we. Finally, the team from the cath lab came to collect him and gave him what they described as a mild oral sedative...which knocked him out immediately. He was clearly pretty exhausted from all those hours of screaming.

Despite all that, it was nice getting to see so many of our old friends from the unit. When we walked in, a bunch of our favorite nurses all came up and mobbed Magnus's stroller like he was a rock star. I imagine it will be nicer to visit with them this afternoon when we're not consumed by trying to comfort a ravenous baby.

Based on what they told me, I'm expecting them to finish up a little after 1:30. I'll try to post an update as soon as I can after that, but things might be a little hectic.

Friday, February 5, 2010

Normal things

Wow, time has really been flying by! Magnus's first cardiac catheterization is coming up this Tuesday, and his Glenn is scheduled for just a few weeks after that. We got the call today that he is scheduled to be the "first case" in the cath lab that day, which is great because it means that if everything goes smoothly, he won't have to stay overnight in the hospital (patients have to be observed for 4 hours after the procedure).

Magnus continues to do extremely well with everything except eating and gaining weight, and even that seems to be going OK again in the last week or two. But in the moments we aren't trying to coax a bottle into his mouth, we are really just enjoying him and marveling at his progress.

Last Monday, Iggy and I took Magnus to a "Child Observation" class at a local community college that our neighbor had recommended to us. While technically it is a free, not-for-credit class, in practice it's really more of a parents' group. At the beginning of the meeting, we went around the circle and introduced ourselves and were asked to say something about "what's going on" with our babies. I always feel a little weird being around "normal" parents in these situations. I wanted to be honest about our situation, but didn't want to monopolize the discussion or make the other parents feel bad for worrying about their own relatively lesser problems. As it turned out, though, it seemed like the most stressed-out parent in the group was not either of us, but rather the woman who brought her 6-month-old twins.

It was pretty interesting to see how Magnus compared with the other babies. He was the second-youngest baby there, but was by far the smallest, even smaller than the 6-week-old girl sitting next to us (he was 10 weeks old at the time). But developmentally, he seemed to be on a par with the 3-month-olds, which was very reassuring to me given all that he's been through. He's really strong and good at holding his head up, and is really starting to get the hang of moving his body around in a purposeful way. In fact, a couple of days ago, I was doing "tummy time" with him, and he actually managed to "crawl" using just his legs to drag his head and torso forward across the blanket! I'm sure real crawling is still a long ways off, but the will is clearly there.

Anyway, while I was reassured to see that his development was on track, Iggy was reassured about something else: after we left, he said "I was relieved to see that a lot of the other babies had even weirder hair than he does." Magnus's hair, for the record, is perfectly fine...he just happens to have more of it on the left side of his head than on the right, and not much at all on the top of his head. But there you go. His development seems to be going fine, hair included!