It's on!

Well, it looks like surgery tomorrow is a go!

We started the day with blood work (which was pretty horrible...it took 3 tries to get a blood sample), then a chest x-ray, then an ECG, and then we met with the nurse practitioner and anesthesiologist, and we were home by around 1:30, thankfully.

The nurse practitioner was a little concerned about his skin, but she said that she was pretty sure it wouldn't be an issue tomorrow. Nobody from the surgical team actually checked him out, so I suppose we could still have an unpleasant surprise tomorrow morning, but I doubt it.

So he'll probably get started around 8 a.m. tomorrow, and they say it will probably take 3 or 4 hours. I'll post updates here as I have them.

Appointment day

Today we bring Magnus in for his all-day "pre-operative appointment." The letter they sent us said that it will include "lab work, chest x-ray, echocardiogram, meet with the nurse practitioner, anesthesiologist and surgeon." It doesn't seem like that stuff should really take all day, but I can believe that it will!

Our biggest fear today is that they will find some reason why they don't want to go ahead with the surgery on Wednesday. Funnily enough, my biggest worry has actually been his skin. In addition to the cradle cap (which is much better, but something we still have to be vigilant about), Magnus has very sensitive skin, and is prone to rashes and acne flare-ups...including on his chest. I don't think I wrote about this before, but when we brought him in for his cath, one of the residents got worried because he had a bit of a rash in the area of his groin where the catheter is inserted. She thought it might be a fungal diaper rash, so we had to wait for the cath doctor to come by and check it out...did I mention that this was after Magnus had already been fasted for nearly 8 hours, screaming all the while? Thankfully, the cath doctor said that it wasn't a fungal diaper rash and it wasn't a problem for the procedure.

Anyway, Magnus's skin had been looking pretty good, but a few days ago, the cradle cap and rashes started flaring up again. We've been aggressively treating him with dandruff shampoo, Aveeno oatmeal bath, mineral oil, and every other baby skin remedy that's been suggested to us. And he looks OK this morning, but that could change in a few hours!

So, our hopes for today are that he gets a clean bill of health for the surgery, and of course, that the blood draw and other tests aren't too painful and go quickly. Wish us luck!

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 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...

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.

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.