One year

A lot has happened since I last posted!

My parents came to visit and helped us out tremendously during the week from Magnus's birthday until Thanksgiving. While they kept him entertained and helped us clean the house, we were able to work, take care of the mountain of household tasks that had been accumulating, and train our new nanny! Yes, we finally have childcare again, thank god. I think the two weeks prior to my parents' arrival were the most exhausting of my life, between trying to work full-time, take care of a baby full-time, and having to deal with all the new medications and equipment (for example, I had to call the home health care supply company EIGHT TIMES in order to get Tender Grips, the little bandages that adhere his oxygen cannula to his face).

Magnus had a great birthday. He received many excellent gifts, and now has an enviable stash of toys and books, and plenty of new clothes, too. In addition, my sister initiated, and my mother facilitated, a birthday card campaign for Magnus; we received nearly 100 birthday cards for him! Some of them were from people Iggy and I have never met, and others were from family members, neighbors, old friends, and even two of my former elementary school teachers! My mom and I spent the afternoon of Magnus's birthday reading through those cards with tears streaming down our faces. Even though I know objectively that we have a lot of wonderful support, caring for a sick baby can feel isolating on a day to day basis. I don't see my friends very often anymore; in fact, since Magnus had his G-tube surgery in July, Iggy and I have been unable to go out together at night, since we haven't had a babysitter who knows how to work his feeding pump. So getting all those cards was kind of my It's a Wonderful Life moment, when you realize that you're not alone, and that in fact you have more people rooting for you than you ever could have imagined.

We had a party for Magnus's birthday on Sunday. Thanks to Grandma and Grandpa's babysitting service, I even had a chance to make cupcakes, which other people seemed to enjoy, although Magnus was not too enthused about them. Many friends came, bringing yet more gifts, and Magnus basked in the glow of his many admirers. That was by far the most people he'd ever been around, but he did very well, and only seemed slightly overwhelmed when everybody started singing "Happy Birthday" to him while flashbulbs went off all around him.

Another exciting development that happened this week is that we began the weaning process. The plan is to transition Magnus off of breastmilk and onto Pediasure. I have some mixed feelings about this, as Pediasure is a highly processed mixture of cow's milk, fats and sugars, and has a long list of multisyllabic ingredients. I had asked the dietician who works with his GI doctors about more natural alternatives, and she said that while there were children's formulas made from more natural ingredients, they didn't taste very good, and so were generally only recommended for kids who are 100% tube fed. So, in the end, my desire for a more natural diet for him is outweighed by my desire to no longer spend 2 hours a day pumping breastmilk, and my desire for him to eat by mouth. The dietician suggested that we transition him onto the Pediasure by starting with a bottle that was 1/4 Pediasure and 3/4 breastmilk. To be conservative, I started him with a bottle that was 1/6 Pediasure and 5/6 milk. And then he took one swig of it, made a horrible face, and then instantly vomited. It was, to say the least, disheartening, but we kept trying, and now he seems to tolerate that mixture well, so today I'm bumping him up to 1/3 Pediasure and 2/3 milk. Wish us luck. Anyway, I guess this gives us more impetus to step up our efforts to encourage him to eat solid food, which we've kind of been slacking on of late.

My parents left early in the morning on Thanksgiving day, and we had some friends over for dinner that afternoon. Last year on Thanksgiving, Magnus was 2 days out from his Norwood, which meant that he was in the ICU, completely sedated, "breathing" with the help of a ventilator, his chest was full of drainage tubes and pacer wires, and his sternal incision was still open because he was too puffy for it to be closed. So I wasn't able to hold him, but I was able to look right into his chest and see his heart beating. Iggy couldn't handle seeing him in that state, and since seeing Iggy so upset made it impossible for me to hold it together, we mutually agreed that it was best for him to just spend the day at home getting Magnus's room ready for his eventual homecoming while I stayed by myself at the hospital. So, even though we've had a rough month, this Thanksgiving was dramatically better than last year's, and we didn't have to look too far to find plenty to be thankful for.

Work week

Well, we made it through almost a whole work week with Magnus at home on oxygen and nobody to take care of him except his parents! I have several nanny interviews lined up for us on Sunday, so I really hope we won't have to do this too much longer, because I am totally exhausted. Missing work is not an option for me, and Iggy has also been trying to work as much as possible, so basically we are all just sleeping less and trying to be as efficient as possible (on top of everything else, I have a job interview next week for which I am supposed to prepare a 15-minute presentation).

I also survived my first solo outing with Magnus and his oxygen tank. We had a trip to the clinic this afternoon for him to get a flu shot and to see his GI doctors. I was nervous about being able to steer both the stroller and the oxygen cart, but it wasn't really too bad, although I did run over one guy's foot with the oxygen. I was also kind of nervous on the drive over, too; when the guy from Apria dropped off the portable tanks, he told us that if we took them in the car they should always go in the back seat, and never the front seat or the trunk. You know, because then it's less likely to explode if you get in an accident. My mind wandered to those "BABY ON BOARD" signs, and I fantasized about making a "HIGHLY FLAMMABLE BABY ON BOARD" sign for our car. But we didn't get in an accident, and we didn't blow up.

Iggy took Magnus out for a walk with his oxygen on Thursday and said that people stared and he felt self-conscious. When I took Magnus over to say goodbye to his nanny on Wednesday morning, I decided to just take his cannula off, because we were only going for a short visit, but I left the stickers on his face that hold the cannula in place and even that garnered comments. "Your baby scratches his face, huh?" one guy said to me. Anyway, at UCSF it wasn't really an issue, since there are tons of people walking around with various medical equipment and whatnot.

Magnus has been adjusting pretty well to being on the oxygen. I'd say our biggest problem is the fact that the adhesives we use to hold his cannula in place have been giving him a pretty bad rash, despite the fact that we attached the stickers to a more hypoallergenic type of bandage. But there's no such thing as a hypoallergenic adhesive for him, apparently. I hope in time his body will adjust to it, because the rash is pretty gnarly, and I feel terrible when I have to change the bandages because it looks really painful. But other than that, it doesn't seem to bother him too much, and as much as I hate to admit it, I think it does seem to give him more energy. It will probably help with his weight gain, too.

Adjustment

With the oxygen has come a lot of new developments in our lives, and since last night we've been hard at work adapting to our new situation.

We've been through a lot since last weekend, but I think the hardest part of all of this was having to "break up" with our nanny. I called our nannyshare partner family last night as soon as we realized that he was going to have to be on oxygen 24 hours, and broke down sobbing on the phone. I let them break the news to Lilian, our nanny, but called her myself this afternoon, and of course broke down sobbing again. Tomorrow morning we are going over there to say goodbye, and I think it's pretty safe to say that there will be a lot more sobbing. It's a cliche to say that your nanny is like a member of your family, but it's really true. Magnus's love for Lilian was obvious from the way he would start bouncing up and down in my arms after I would ring the doorbell while we waited for her to answer the door. And then she would appear, and he would absolutely beam with happiness to see her. Realistically, I know that part of that is just that he is a very happy and loving kid by nature and he will probably become equally attached to whoever cares for him next, but I know she really loves him, too. And yeah, of course the tears are streaming down my face again as I write this.

We talked about the possibility of her still babysitting for us sometimes, but realistically, there is a language barrier and I don't think we can surmount it enough for her to operate his equipment. Still, I hope we will somehow continue to see her. Maybe someday things will even work out so that she can care for him again.

So during the times today when I wasn't breaking down in tears about having to leave our wonderful nanny, I was scrambling to find a new nanny, and spoke to a couple of promising candidates on the phone and set up some in-person interviews over the weekend. I've also been scrambling to catch up on work, and Iggy has stepped in as super-dad, basically cancelling all his appointments and giving up his work to care for Magnus while we try to find new childcare. Luckily, my parents are coming next week for a brief visit so that gives us a little extra time, and hopefully we'll get everything worked out by Thanksgiving.

With everything going on, another thing we've had to give up on is that we were hoping to go back East for Christmas, but now we're just going to stay here. I mentioned before that the doctor who did Magnus's cath wanted to do his followup cath after the holidays, but then I talked to our cardiologist who wants it done before the holidays. I'm not sure who will win out, or when we'll know, but between that uncertainty and the challenge of trying to fly with a baby who is on oxygen during the holiday rush, it just didn't seem tenable. I think Iggy's mom is planning to come out for Christmas, which would be great, but there are a lot of other relatives we'll miss seeing. Luckily, Magnus is too young to know when Christmas is anyway, so we'll just have to celebrate "Christmas" with the rest of the family the next time we see them.

As far as Magnus is concerned, I guess our first 24 hours on home oxygen haven't been too bad. Dealing with him being tethered to the compressor is somewhat reminiscent of trying to vacuum the house while minimizing the number of times I have to unplug and replug the vacuum cleaner, a challenge with which I am quite familiar. I guess this is one time that having a small house works in our favor! One of the worst things about the compressor, though, is that it's really loud, and of course we have to run it 24 hours a day. Luckily, we can leave it out in the hallway and then shut the door to Magnus's bedroom while he's sleeping which mutes the sound significantly, but the only other rooms in our house that have doors on them are the bathroom and our bedroom, so it's loud everywhere else. But I guess we'll get used to it. Magnus did get fussy and pulled his cannula off a few times, but he didn't seem to be too traumatized by it. The next thing we really have to do is to try to find a stroller that has a big enough basket to hold our portable oxygen tank so that we can take him out for more than a couple of hours at a time. We really want to make sure that his world doesn't get to be too circumscribed now that he's on oxygen and it's harder to take him out.

Oxygen

Good news: we are FINALLY home (though it took all day, and Iggy has to go back to the pharmacy tonight to pick up his meds because they weren't ready).

Bad news: Magnus has to be on oxygen all the time, for the foreseeable future.

We are pretty devastated. We have to give up our nanny share with the nanny we love, who HE loves, and who loves him. And now we have to scramble to find someone who can take care of a baby who is attached to an oxygen tank. The longest he's allowed to be off the oxygen is for 2 hours.

I was trying to cheer us up, and said to Iggy "hey, remember when we thought getting a G tube was the end of the world? And now it just seems normal." And then Iggy pointed out "it's not just the oxygen, it's what the oxygen represents." Yeah. The fact is, Magnus is not doing well, and now all you have to do is look at the cannula on his face to see it. But between the oxygen and the meds, it's still possible things could turn around for him. Through all of this, I keep remembering the neonatologist who told us when I was 26 weeks pregnant that we should just induce labor and let nature take its course because there was no way I would carry him to term. She was wrong. And this time, his doctors aren't giving up on him, but they are definitely worried. As are we.

Good night

Magnus had a really good night last night. He woke up a couple of times, but went back to sleep within 30 minutes. Our new space was SO much quieter.

The nurse who's in charge of coordinating home care just came by to tell me that we'll have oxygen delivered later today, so right now the only thing holding us up is his viagra prescription. I've gotten word that that shouldn't take too long, but I guess we'll just wait and see...

Finally asleep

Not me, obviously, but after getting those 5 hours last night, and then barely napping all day (it wasn't too hard to understand; we were in a bay with two other families who had a lot of visitors all day long, many of whom were small children, plus it was right where the nurses usually hang out and talk, so between all that plus the normal hospital noises of IV pumps and monitors beeping, it was incredibly loud.

Finally, a little after 4, our nurse suggested that we try giving him Benadryl. I told him that we'd given him Benadryl twice last night with little effect, but at that point I was willing to try anything. He immediately passed out and stayed asleep for several hours. When he woke up, though, he was totally freaked out and wouldn't stop screaming. I eventually calmed him down, though, and then he went right back to sleep. In fact, I think he never really woke up, even though he was screaming; he had this glazed look in his eyes the whole time.

We started him on oxygen here in the hospital, and while I hate the idea of having another medical thing to deal with, I can see already how much easier it makes things on his body, especially while he's sleeping. Not only are his oxygen saturations much higher, his heart rate and breathing rate are lower. So maybe being on oxygen at night will also help with the weight gain thing, which continues to be a bit of a struggle.

I'm also happy because I like the nurse we have tonight, and we had a fantastic nurse during the day. Last night we had a nurse that I'm not so fond of. We also got moved to a much quieter bay, which is fantastic. There's only one other kid in here, and he's asleep, so hopefully we're in for a much quieter and more restful night.

Not today

We're not going home today.

Everyone had been saying we would, but then this morning, the new attending physician who came on duty today came by to talk to me. He said they wanted Magnus to be on oxygen at home.

His oxygen sats have been about the same since his cath, but they're on the low side for where he should be, especially at night. However, having him be on oxygen is pretty life-changing. Luckily, it sounds like now they only want him to be on oxygen at night, which is significantly less life-changing, but still a huge pain for us.

Anyway, I guess that in order to get insurance approval for him to be on oxygen and also for his new medications, we need to go home tomorrow.

Magnus slept for 5 hours last night. Between him not feeling well, and all the light and noise going on in the ward all night, it was pretty much a total nightmare. There's a newborn baby in the bay next to his, and between 3 and 5 a.m. they were trying to do a blood draw on him. As you can imagine, that is not something that anyone can sleep through.

Anyway, I'm at home now, having been relieved by Iggy, and am going to take a nap. Hopefully I'll feel better after I get some sleep.

31

That is the number of collateral veins Magnus had coiled off yesterday. Apparently, that is an extraordinarily high number for a baby his size, because people keep coming up to me and saying that they heard about it, even nurses from the intensive care unit next door!

Magnus is doing basically OK today, but is not feeling so great. I guess it's normal to spike a fever in response to having a bunch of metal placed in your body, and he has done just that. We've been trying to keep him comfortable with tylenol, but he's been pretty cranky all day. He had his first dose of viagra this morning, and he responded fine (they wanted to monitor him to make sure his blood pressure didn't drop too low after getting it).

As things stand now, I think we're still on track to go home tomorrow, although I hope he feels better by then. He seems to feel better now than he did this morning, but is still not completely himself.

By the way, thank you so much to everyone who has posted comments and e-mailed me to offer help. It really means a lot to us, as always!

Back on the ward

Magnus came out of the cath lab around 3:30, and I got here just after he did. He was asleep, but woke up shortly afterward. He was cranky (understandably), hoarse, and very thirsty.

I ran into the main nurse from the cath lab as I was arriving and she (along with everyone else I've spoken to from the cath lab) raved about how well he did during the procedure, meaning that he tolerated the anesthesia well and all the procedures went smoothly.

The cath doctor just came by to talk to me, too. He reiterated Magnus's issues, but said that he thought he could probably take care of all the rest of his collaterals during his next cath, and that he wants to schedule that for after the holidays. He also said that we would know "within a fairly short time frame, maybe 12 months" whether this would fix his problem. That seemed funny to me, because Magnus is not yet 12 months old, so that is literally a lifetime in his case, but I guess it's not really so long in the scheme of things.

He said the worst case scenario, if Magnus's pressures didn't come in line, was that his Glenn shunt would be taken down, and he would go back to post-Norwood. He said that people can live a pretty long time like that, maybe 20 years, before heart failure and transplant. He then pointed out that even in the best case scenario, all these surgeries are considered a bridge to heart transplantation, although that may be "60 or 70 years out" (that is the most optimistic scenario I've ever heard from a cardiologist, but hey, who knows?)

Anyway, in the meantime, it looks like we are here until Sunday (at least) just because with everything they did to him they expect him to feel crappy and be feverish for at least a couple of days. The cath doc also said that they weren't sure what would happen with his sats right now, because they coiled 2 populations of veins, one that was increasing his blood oxygenation, and another that was decreasing it, so it'll be unclear which one wins. Right now they have him on an oxygen cannula, but we'll see how long that lasts once he really wakes up.

Definitely stent

Just called the cath lab to check in; they are almost done coiling off his collaterals and were just going to do one more, and then they're definitely putting a stent in.

More information

I got off the phone with Magnus's cardiologist a little while ago.

He's basically got three problems:
-Collateral veins between his aorta and pulmonary artery
-A slight narrowing of his left pulmonary artery
-Also, collateral veins somewhere else that I did not write down the location of

Today they're going to coil off some, but not all, of his collateral veins. They can't coil them all, because right now he's depending on them for his circulation and if they got them all he'd have very low sats. But they want to get them all eventually, so we're going to be back in the cath lab again in 6 weeks or so.

In addition to this, he's going to need to be on viagra 3 times a day to lower his blood pressure.

They may or may not put a stent in his pulmonary artery to address the narrowing. If they don't do it today, his cardiologist says he will "probably" require it eventually. The downsides of putting the stent in are one, that it won't grow with him, and will eventually need to be removed, which is difficult; and two, that if he has a stent in he'll need to be on an additional anticoagulant drug, Plavix, as well as another drug to counteract the effects of Plavix on the stomach (just when he finally seemed to be growing out of his reflux issues, sigh).

Anyway, the additional medications are an inconvenience and all, but the news of today has potentially grave implications. As his cardiologist put it, "this is big." She said she's had patients who have had these complications before and who have done fine, but it is far from assured that these fixes will work. I didn't think to ask her what the time frame is for knowing if he's getting better, or if there even is one. Well, we've lived with plenty of uncertainty before, and now we just have a little more.

I asked her if this would affect his eligibility for the Fontan (his third staged surgery). She said that if the drugs and coils work, no, but if they don't, yes.

For now, they're going to do what they can do today, and we'll be in the hospital at least overnight because he'll be getting viagra and they need to see if he'll tolerate it.

Check-in

I just called the cath lab to check in and got an update. The cath itself is going fine, but they did find that the pressures in his superior vena cava were quite high, which is what has caused his abnormal head growth. He said that they also found a number of collateral veins. They aren't sure yet what they're going to do about it. They can coil off the veins, but he said that that wouldn't totally fix the problem, and that it may be better to treat him with medications. So, the cath doctor is going to consult with our cardiologist and maybe the cardiac surgeon to figure out what to do. He said they'll probably be there for another couple of hours, though.

I guess it's good that they figured out what's going on. It's not so great that it seems to be something not easily fixed. But I guess at least they do have some options.

No news

We dropped Magnus off in the cath lab a little before 9, and still haven't heard anything back. They said they'd call if they were going to do any interventions, so I guess we're hoping to hear from them soon.

Cath tomorrow

Well, I've been so busy I never even had the time to post to say that we got to go home from the hospital on Monday! I think Magnus probably should have been discharged on Sunday, but anyway, we got out, and then I was so behind on work that I had to grade papers and write lectures instead of watching the Giants win the World Series.

I've continued to play catch-up all week, and maybe it's been good that I've been so busy, because I haven't really had time to worry about this cath tomorrow. The best case scenario would be that they find something minor wrong and are able to fix it. I suppose maybe the second best scenario would be that they don't find anything wrong, although something is clearly causing his lowered sats and increased head growth. The thing I'm really worried about, though, is that they'll find something wrong that can't be fixed. Something really wrong. But I'm trying not to dwell on that possibility.

Anyway, we don't have too long to wait now. He's due at the hospital at 6:45 a.m., and I think he'll probably go into the cath lab around 8. From there, I estimate it'll take a few hours. I'll post any news as I have it.