Wednesday, December 23, 2009

Too many doctors' appointments

When Magnus was released from the hospital last Thursday, they told us that we would need to bring him in to the pediatrician's for twice-weekly weight checks, which sounded reasonable to us. What we didn't realize at that time was that since it was the week before Christmas, and short notice, the only place we'd be able to bring him was the pediatric Urgent Care clinic. As I mentioned before, our first appointment was last Friday, and they told us that since the clinic was only open Monday-Wednesday this week, we'd have to bring him back on Monday and Wednesday. And we had a cardiology appointment on Tuesday.

Anyway, we dutifully attended our appointments on Friday and Monday, but each one took three hours. An hour's wait in the waiting room with a bunch of sick kids. Then waiting to see the nurse and answering a million questions. Then waiting to see the doctor and answering the exact same questions. And then on top of that, his weight was down at Monday's appointment, but they weighed him at a different time of day on a different scale than they had on Friday. The inaccuracy of this measurement was further confirmed when the home health care nurse weighed him at our house later that same day and he was the same weight as on Friday.

So, at our first cardiology appointment yesterday (where they weighed him yet again on yet another scale at yet a DIFFERENT time of day...he was up again), the doctor told us we should just rent a baby scale and weigh him at home, so that is what we're doing. And we don't have another doctor's appointment until January 4th, when we go back to the cardiologist!

The cardiology appointment went fine, they didn't really do much since he'd been discharged from the hospital so recently. The cardiologist did mention, though, that we'd probably need to schedule Magnus's second surgery soon. He won't have it until he's about 6 months old, but I guess Dr. Azakie's schedule gets filled up well in advance. It's pretty terrifying to think about his next surgery coming up when he just finished this first one. I always knew we'd have to do it eventually, but having a date set will make it a lot more real.

Sunday, December 20, 2009

Life at home

Magnus has been home for three days now, and maybe it's just because I got a solid 6-hour block of sleep last night, but things are seeming more manageable all the time. We are lucky that Magnus is, other than his health issues, such an easy baby. He rarely fusses, and when he does, it's easy to comfort him.

The tricky part is that he has to be fed every three hours around the clock, and each feeding takes about 45 minutes. He still has his NG tube in, but we start out by either bottle or breast feeding him as much as he will eat, and then he gets the rest through the tube, which takes a while. Plus, in addition to breastfeeding, I am pumping every couple of hours. And then there are his medications, although luckily we only have to give those three times a day.

I am hopeful that the feeding regimen will become less onerous before too long. At the hospital, they told us to stick with what they'd been doing for at least a week, which we are doing, but I think eventually we will try harder to wean him off the tube. He hasn't made much progress with taking larger volumes by mouth, but I think that's just because the volume of food we are giving him through the tube every three hours is so large that he's never really very hungry. The most important thing is that he continues to gain weight, which he seems to be doing. He's puking a lot less at home than he was in the hospital, and at his pediatrician's appointment on Friday, he was up 70 grams from his discharge weight (which may just be due to a difference in scales, but we were happy, nonetheless).

Anyway, between all that, we are pretty busy. Luckily, my parents are here helping out, so that has been a huge help, allowing us to do things like go to the grocery store and take showers! We even finally went out and got a Christmas tree this morning.

Thursday, December 17, 2009

We are home!

And so far we are one diaper change, one feeding, one puke, and one dose of meds down.

Wednesday, December 16, 2009

+10 grams!

Well, the title there says it all. Our boy was up 10 grams at his weigh-in, which means he's gained enough to go home tomorrow! Of course there are still a few more hurdles he has to clear in order to actually get discharged, but we're feeling pretty confident, and I know the nurses and doctors are also trying to do everything they can to get him home.

Magnus has certainly held up his end of the deal. The nurse practitioner told us this morning that if he gained anything today, he could go home. We were pretty tense in the moments leading up to the weigh-in, but he was triumphant. And then less than a minute after he was weighed, he had a large bowel that might have weighed as much as 10 grams. But it doesn't matter, he officially gained!

Tuesday, December 15, 2009

Halfway there

So yesterday, as I had predicted, thanks to his 3 puked-up meals, Magnus did not gain any weight. In fact, he lost 5 grams. But then today he gained 40 grams! We've been told that he has to gain 20 grams a day for two days in order to go home. Since he did double that today, we were all joking that they should let us go home tomorrow. That's not going to happen, but I'm going to try to make the case that if he gains anything, or even maintains that gain tomorrow, that's the same thing as gaining 20 grams a day for two days, and they should let us go home on Thursday.

We're keeping our fingers crossed!

Monday, December 14, 2009

The last obstacle to going home

Magnus is still doing great in every way except one: he's not gaining weight. This morning, his nurse practitioner told me that they want to see solid and consistent weight gain for two days before they let him go home. I was hoping that today would be day one of that, but given that he has puked up most of his last three bottles, it's not looking very likely. So frustrating! But of course, growing and gaining weight are important. We agreed to put him back on the fortified breast milk, but they're adding less of the fortifier than before (and the puking started before he went back on the fortified milk). At this point, I'll try anything to get him to gain weight!

Saturday, December 12, 2009

Mom and dad are ready

Today was a pretty ordinary day for Magnus, but a big step for us: we put in Magnus's new NG tube all by ourselves. It was actually a lot easier than I thought it would be, and I think the part the little guy actually hated the most was having us stick all that tape on his face to hold it in place!

So this pretty much means that all our parent education is done. We know how to insert the tube. We know how to give his medications and food and to check placement of the tube, and to flush it after we put anything in. All we need now is for the little guy to get clearance to go home! They're putting him back on bolus feeds tonight, and assuming that he tolerates that OK, we're hoping to get the all-clear to go home on Tuesday. Conveniently, my parents are coming to town on Monday, so it'll be nice to have those extra hands around for our first days at home!

Thursday, December 10, 2009

Another good day

Magnus continued to breathe and eat well today! In fact, he's doing so well that it's awfully frustrating to see that they're moving forward so slowly now. But of course it's worth it if this means no more setbacks and going home early next week.

There was some tangible progress today, though. Magnus went off his supplemental oxygen (again) and did extremely well. He also had 4 big feedings, one of which was a new personal best for him (45 ml). And now he's back on all oral medications and nothing through his IV. But they're not going to make any other big changes through the weekend, probably, because they want to wait and see how he does with what's been done already. So I guess we just have to be patient, grrrr.

Wednesday, December 9, 2009

Doing better again

Today was another good day. Magnus seems to have conquered his fast breathing issues, and now he just has to master the art of eating. He did OK with the 3 bottles he drank today, but still has to work on building up his stamina a bit.

It looks like now the plan is for us to go home sometime early next week. They think that the reason why he had some problems last week was because they pushed the feeding too hard, so we're going a bit more slowly this time. Tomorrow they're going to transition him back onto the oral diuretic (as opposed to the IV one) and then on Friday he goes back on all bolus feeds (as opposed to the continuous feeds he gets at night now). If he does OK with that for a few days, we can go home! We were a little disappointed to hear that they're not planning to send him home until next week, but the upside of that is that I think there's a decent chance he'll be able to take in all his food by mouth by then and we won't need to go home with an NG tube.

Magnus also got all his stitches out today and the pacer wires that were in his chest. He did not enjoy that very much, but he looks great and his scar is surprisingly minimal. Of course, he still has at least two more chest surgeries in his future, but scar #1 doesn't look too bad.

Tuesday, December 8, 2009

Some progress

Today was not a bad day, but it was very long. This morning, some of Magnus's bloodwork showed that he was anemic, which may be one of the reasons why he's been having some breathing problems. So, this afternoon, they decided to give him some blood.

However, when they started putting the blood into his IV, it started leaking everywhere. The boy had destroyed yet another of his IVs and had to have a new one put in. And just like last time, it was quite an ordeal for all of us. It took three sticks with the needle and nearly an hour of work to get his new IV in. So, that was probably the most difficult part of the day.

Today's good news was that since going back to straight breastmilk, Magnus has resumed doing very well with the bottle. An occupational therapist came to watch him feed this morning to make sure he wasn't aspirating or having any problems, and she said that he did just fine. Later, he took 40 ml from his bottle, which was a new record for him. So here's hoping he continues to make fast progress with the feeding.

Monday, December 7, 2009


So yesterday, Magnus continued to have issues with fast breathing and what seemed to me to be signs of GI problems (throwing up, and generating a poopy diaper every hour or so). So, this morning, we talked with his nurse practitioner, and she agreed to put him back on straight breastmilk, but she's putting him back on continuous feeds overnight so that he gets in enough calories. She also increased the dosage of one of his heart medications. They implemented those changes mid-morning, and by this afternoon, it seemed like one or both of these things was working. His breathing became more normal, and he was much less fussy than yesterday, and seemed to be on a much more normal pooping schedule. He also started taking milk from the bottle again, which he had basically stopped doing when he was getting the fortified stuff. So, hopefully, all that will continue to be the case.

Being on continuous feeds is a bit of a step backwards for him, but at this point, I am happy to do whatever will help him gain weight and get out of the hospital! This morning, I was thinking about how when Magnus first had his surgery, it seemed so scary that one day we would have to bring him home from the hospital and take care of him ourselves. Now it doesn't seem like any big deal, and I can't wait for us to get the hell out of there!

Sunday, December 6, 2009

2 steps forward, 2 steps back

Magnus is still doing fine, but when I came in this morning, the nurse said that they'd been a little concerned that he was breathing faster than usual. They think this is due to one of two things: either the oral diuretic he has been taking for the past couple of days is less effective than the IV diuretic he used to be on, or he may be having reflux issues. Personally, I think it is the latter, and I suspect it may have something to do with the fact that until yesterday, he was just getting straight breastmilk, but then yesterday they started giving him breastmilk with human milk fortifier added to it to increase his calories.

I say this because when he was just getting breastmilk, he was steadily increasing his feeds with every meal and not throwing up at all and just spitting up minimally. Then, when they switched him, he started taking in much less milk orally and had a pretty good puke last night (he got his dad's shirt pretty good).

Anyway, for today, the plan is to switch him back to the IV diuretic, to give all his feeds through the NG tube, and to treat him with reflux medications. However, I'm hopeful that once he gets back to normal that we can try him on plain breastmilk again and see if that solves the problem.

It's disappointing, because originally we had talked about trying breastfeeding today, and because this probably also means another day or two in the hospital, but the important thing is that he's still doing fine, and luckily, I think the doctors were inclined to accept my suggestion that the fortified milk might be the problem.

Friday, December 4, 2009

Bottle feeding

Yet again, Magnus achieved all the goals his doctors set out for him today. He's now on all oral medications (though he does have one peripheral IV still in in case he needs it, but that's all!). He did just fine with bolus feeding. And he had his first two bottle feedings today!

As we'd hoped, he did really well with the bottle. The first bottle, they gave him 18 ml of milk, and he was able to drink 15 ml of that in 10 minutes. He only spit up minimally, and generally seemed to tolerate it well. For his second feeding, they gave him 20 minutes, and he was able to drink 25 ml. I think he could have done even better were it not for the fact that he really didn't sleep at all this afternoon, and then he JUST fell asleep before feeding time. But again, he tolerated it well, with minimal spitting-up. Right now they're going to keep him on continuous tube feeding at night just to make sure he continues to gain weight quickly, but he'll be doing 3 bottle feedings during each day. Hopefully tomorrow he'll do even better. The goal is for him to be able to take in 60 ml at each feeding.

Thursday, December 3, 2009


As of around 11 this morning, Magnus is no longer in intensive care for the first time in his life!

Since he no longer had his chest tubes, they decided to transfer him to the step-down unit this morning. Things are happening fast. They've been increasing his feeding rate every three hours, and the plan is still to try a bottle on him tomorrow. They told us that most kids who have this surgery do go home with an NG tube, but I am holding out hope that he might be able to feed well enough without one.

Magnus was also supposed to be switched from his high-flow nasal cannula (that blows air in his nose to help him breathe) to a low-flow cannula, but while we were waiting for the respiratory therapist to make the switch, he decided to just pull out his cannula on his own, and did fine with it, so he's just breathing room air now.

He's also getting transitioned off all of his IV meds and onto oral medications. They're hoping to have that all done by tomorrow, and then the only line he'll have left will be his NG tube.

And with all of this happening, they're even starting to talk about when he might go home. Someone said to us that maybe Wednesday might be the day, which would be kind of funny because that's his original due date, December 9th. We're thrilled that it looks like he'll be home soon, but of course it's also a bit daunting...not the least because this means we have to figure out how to install his carseat!

Wednesday, December 2, 2009

Fussy day

Magnus continues to make progress, but today was kind of a rough day for us. Maybe it's just that now he's getting food, he has the energy to be fussy, but he was super unhappy all morning, and was even fussing in his sleep! On top of being fussy to start with, he also had to have his IV line replaced this morning because he wiggled so much he ruined his old one. Unfortunately, that took a lot of poking and prodding followed by 2 tries with the needle (the first time they got it in, they realized it was in an artery and not a vein). Then we had to move rooms because someone else needed the one we were in.

Like I said, though, he is making progress, and he got his chest drainage tubes out this afternoon! He seemed to settle down a little after that, and I'm hopeful this will make for a happier Magnus in general, because all the nurses were saying that chest tubes are really uncomfortable to have in. They certainly don't look pleasant.

They also doubled his feeding rate this morning. He's still only at 4 cc's per hour, which is not much, but they're hoping to ramp him up to 18 cc's/hr by tomorrow. There's also been some talk about weaning him off his high-flow nasal cannula.

So, little by little, he's getting unplugged! I just hope he gets to enjoy it a little more now.

Tuesday, December 1, 2009


Magnus finally got food in his belly for the first time ever today! Unfortunately, it was through an NG tube, which he really did not enjoy having placed, but they want to start him out on slow continuous feeds to make sure he tolerates it OK. He's getting it very slowly, 2 cc's per hour, but I'm thrilled that he's finally getting to use some of the breastmilk I've been storing all this time! If he does OK with the continuous feeds, they're going to try him with a bottle on Friday, probably.

Magnus also got his intracardiac line out today, and will hopefully get his chest tubes out tomorrow.

I also got to hold him again for a while today, which was very exciting! We couldn't do chest-to-chest yet because he's still got his lines in, but it shouldn't be too long now.

Sorry my recent updates have been so cursory, but I have been spending almost all my time at the hospital, and when I'm home, I'm trying to squeeze in eating, sleeping and pumping, so not much time left over for blog posts!