Under pressure

I mentioned in my last entry that Magnus's weight had been a bit stagnant earlier this week. Then, when we went to weigh him last night, we found that he had lost 50 grams since the last time he'd been weighed, 2 days earlier. There were a few reasons we could think of that might be responsible for this fluctuation, but his cardiologist had told us to get in touch with her if he lost weight, and so I dutifully e-mailed her last night.

She e-mailed me right back, and said that she was concerned about the weight loss, and that she wanted us to come in to the cardiology office this morning. She told us that we might have to put his feeding tube back in, and that we should come to the cardiology appointment prepared for him to be admitted to the hospital, although she said that she thought he probably wouldn't. Needless to say, we were both pretty stressed out.

We arrived at the cardiology office at 10:15 for our appointment, and sat in the waiting room for an hour. Then we finally got to see the cardiologist, who checked Magnus out, talked to us for a while, and then left the room to speak to a pediatric gastroenterologist. When he came back, he told us that he thought Magnus might have something called pyloric stenosis, and that we'd have to take him for an abdominal ultrasound to check it out. I asked what the treatment was for pyloric stenosis, and the answer was surgery. "Very minor surgery" the cardiologist said, but still daunting to us.

The earliest ultrasound appointment they could get us was at 2 p.m., and Magnus had finished the bottle we'd brought with us, so we drove home, got a new bottle, quickly ate some lunch, and then came back for the ultrasound. It was in the same facility where I'd gone for all my zillions of ultrasounds when I was pregnant, and we were actually in the same room where I'd had my 20-week ultrasound when they first detected Magnus's heart defect.

The ultrasound was pretty horrible--Magnus SCREAMED throughout the whole thing. I think maybe the technician was pressing down too hard with the probe, because after she was done, the radiologist came in and scanned him again, and he was fine for her.

Anyway, thankfully, the results of the scan were negative! The consensus is that he just had a couple of bad days and that we just need to keep plugging away at the feeding.

We'd left the house for his first appointment this morning at 9:45 a.m., and by the time we got home it was nearly 4. And all this because he lost less than 2 ounces. It really drove home the fact that there's a lot of pressure on us in taking care of this little guy. A minor weight loss resulted in hours of medical appointments, a thoroughly unpleasant test, and the threat of a hospital stay. But thankfully, it all turned out OK.

Two months

Magnus is 2 months old today. I was hoping he'd hit 8 pounds to celebrate, but he's been a bit pukey the last couple of days and he's just going to miss it.

We had a cardiology appointment today, and it went really well. His blood oxygen levels were 94% (really good for someone with his surgery) and he had an echocardiogram, too. His cardiologist was very happy with the echo--she told us that he'd had a mild tricuspid valve leak right after his surgery (which nobody ever told us about, but apparently it's very common and no big deal) and now the leak is gone.

The cardiologist also asked us if anyone from Dr. Azakie's office had called to schedule Magnus's next surgery yet. We said no, so she called over there and apparently his next surgery had been scheduled, but nobody had bothered to tell us. So as of now, his Glenn is scheduled for March 3rd.

That's a lot sooner than I thought it was going to be. Everyone had always said it would be "around 6 months," so I was thinking May sometime. I guess the main reason why they're scheduling it so much earlier is to allow flexibility in scheduling. I have heard of many families who've had their Glenn surgeries rescheduled at the last minute because it's not an emergency surgery, and UCSF only has the one senior pediatric heart surgeon. I suppose it's also good to get the Glenn over with on the early side because kids are much more stable post-Glenn...although given how well he is doing now, I feel a bit like I did before his first surgery, when it was hard to accept that he needed the surgery at all.

So, even though it was a really good appointment, Iggy and I both came home feeling pretty unsettled.

In more mundane news, we both need to start thinking about going back to work soon. So, sometime next month we're planning for Magnus to start a nanny share. 3 days a week, a nanny will be taking care of him and a baby girl who is 3 weeks older than him. The other family lives a 10-minute walk from our house, and the nanny is a very nice woman from Honduras with lots of experience. She's going to babysit for us on Thursday as a test run, but I have a good feeling about the arrangement.

Why we haven't sent any thank-you cards

We received so many thoughtful and generous gifts when Magnus was born, and then again at Christmas, and our intention was to take a nice photo of him and use it to make some birth announcement/thank-you cards. So, step one: take the nice photo. At first, we didn't do this because we were so busy. We had 11 family members visiting at Christmas. And then he got some baby acne, and then worse acne, and then he started to get cradle cap on his eyebrows. And then one day last week suddenly the cradle cap was all over his face. We still think he's plenty cute with the crusty face, but it wasn't exactly the look we had in mind for his birth announcement photo.

He had his first appointment with his regular pediatrician last week, and she told us that since the cradle cap is just a cosmetic problem, she didn't think it made sense to give him medication. I was happy to hear this, since I also prefer to give him as few medications as possible, especially since he already takes 4 medications and an iron supplement every day! So, in the meantime, we are rubbing his face with olive oil 3 times a day (which he hates, of course) and I think it's getting a little better. But it still might be a while before you get a thank-you card from us, and that's why!

We count ourselves very lucky that the biggest issue we had to discuss at the pediatrician's last week was his skin problem! The pediatrician was a little worried about his weight, too, and it's definitely true that he's tiny, but he's still gaining at the same rate, and we've gone back to twice-weekly weighing instead of every day. Magnus is definitely happy about this, as being stripped naked and placed on the cold, hard scale is not among his favorite activities. Magnus also got all of his 2-month vaccinations this week. He did extremely well and only cried for a minute or so.

In other news, Magnus has been scheduled for a heart catheterization on February 9th. It's a relatively safe procedure, but it does involve general anesthesia and most likely an overnight stay in the hospital for observation afterwards. It's going to be very strange being back in the hospital again, but just one night won't be too bad, I don't think.

Still tubeless

I am pleased to report that Magnus has steadily gained weight every day for the last five days! In fact, his average rate of weight gain over this time, 25 grams per day, has been the same as what it was at home before he pulled his tube out, and is over his hospital goal of 20 grams per day. There are about 28 grams in an ounce, so that means he's gaining almost an ounce every day.

Last night we celebrated by packing up all of his NG tube supplies in a box, which makes his room look completely different--like a normal baby's room instead of a hospital room. Let's just hope that box can stay on its shelf in the basement forever.

Tubeless

Sorry I've been so bad about updating the blog. I consider myself to be a pretty organized and efficient person, but having a baby really screws that up. I am learning that in order to get anything done, I have to make lists of things to do such as "un-decorate the Christmas tree" and "update blog," and then rush to check things off the list when Magnus takes a nap.

The biggest development has been that one week ago, Magnus pulled out his NG tube, and we decided to experiment with not putting it back in. We thought we were going to have to put it back in after a couple of days, but he surprised us--he hasn't really lost any weight, but he hasn't gained any, either. He had a cardiology appointment yesterday, and I was worried that the cardiologist was going to tell us we had to put the tube back in, but she didn't. However, she did say that his weight over the last week was "not a rousing success," and basically, he has to step it up over the next few days or we have to put the tube back in.

We really don't want to put the tube back in. It's interesting, medically, an NG tube is not a big deal. It's a minor intervention, they work well, parents can maintain them at home by themselves. But for us, the tube is a huge deal. It's going to be tough for us to go back to work and hire someone to take care of him if he has to be fed through a tube. And of course, the tube is right there on his face and marks him to the world as a baby with health issues. And then there's the fact that kids who have feeding tubes for long periods of time can become dependent on them and become unable to eat normally not as a result of their underlying health problems, but as a result of the tube.

The most important thing, though, is that he grows and gains weight. So, we're really hoping he picks up his weight gain and we don't have to wrestle with putting the tube back in.

Other than that, we have been fortunate that Magnus has had no significant medical issues.

We had lots of family here over the holidays, and are continuing to have a number of visitors. Originally we had thought about maybe throwing a welcome home party for Magnus, but ultimately decided that it might be better just to have smaller groups over. So, if you have been wanting to meet Magnus, you are welcome to come by pretty much any time! Just call or e-mail us to let us know when you want to come. And of course, please hold off on coming by if you are sick, think you might be getting sick, or have been around sick people.

I have also been really bad about posting pictures, but our friends Mo and Ian came by yesterday, and Mo took some great pictures that you can see here. There are a few more videos up on youtube, too. So hopefully that should be enough of a Magnus fix for those of you who can't come by in person!

Gabe

Back in August, a woman named Lisa posted a comment on this blog. At that time, she, too, was pregnant with a baby with HLHS. Her son, Gabriel, was born just a couple of days later on August 17th. We e-mailed back and forth, and I found out that she, too, was writing a blog about her experiences, and I followed Gabe's story from the time of his birth.

Every child with HLHS goes through some scary things, but Gabe's stage one hybrid surgery went very smoothly, and I watched him grow up into an adorable, smiling, healthy-looking infant.

A couple of weeks ago, Gabe went in for his stage 2 hybrid procedure. He had a difficult recovery, but at first, his setbacks seemed like things that he could overcome. Then he started to have more serious problems. He had blood clots in his lungs and uncontrolled bleeding in his brain, and his doctors couldn't treat one without exacerbating the other. Yesterday, December 31st, Gabe passed away in his parents' arms.

Lisa has been a supportive and generous friend to me, and the loss of Gabe is absolutely devastating. It's a sobering reminder to me to appreciate every day I have with Magnus, and with everyone else I love.