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Demeter had a very long cardiology appointment today. I went it to it with more than a little bit of anxiety because, despite the great weight gain of last week, she hasn't been gaining much weight since Friday.

It turns out that her left and right ventricles are a little bit enlarged, and there is some fluid on her lungs. This is what we expected would happen, and a possible explanation for the slow weight gain recently (since she has to work harder to feed, and she's burning alot of calories). We're starting her on a diuretic tomorrow, which will hopefully make breathing a little easier for her. The cardiologist will present Demeter's case to the panel of doctors and surgeons on Friday, and we should have more of an idea of when surgery will happen then.

I also visited a friend's baby in the PICU today; she has two holes in her heart as well, and had open-heart surgery yesterday. It was very helpful to see what Demeter will be going through soon. Here is a picture of a child in PICU after surgery - Demeter will look something like this, but with more tubes!

The heart surgeons and the nurses all seemed really committed and caring - there is actually a nurse dedicated to each patient in the PICU, and, if things aren't going as planned, a doctor as well. The visit actually made me feel a little better, and a little more prepared.

Chloe

This past summer, one of our cats got sick, and, after surgery didn't improve her condition, we had to put her down. Chloe had been in the family since Chris and I first got married, and she was a sweet old soul. It was really hard for both of us.

Because we're not religious, it was hard to think of how to explain to Artemis what had happened to Chloe. We ended up saying something like "Chloe was sick, and now she's gone, but the important thing is she's not hurt anymore - we will always remember her as a good friend". I think we might have mentioned death, but I'm not sure what that means to a two-year old; when her markers don't work anymore, they're "dead", but beyond that I don't think we'd used the word before. I wanted to avoid saying that Chloe was in a "better place", because, while that would have been easier to say, I really don't believe it's true.

I thought that Artemis would forget about Chloe after a couple months. Sometimes she doesn't remember people she hasn't seen for a while until she spends time with them again. Chloe must have been a better friend than I had thought, though, because Artemis still talks about her. You see, "Chloe's coming back some day."

I mention this not only because it's something that causes a little bit of heartbreak on a regular basis (no matter what I say, Artemis thinks that Chloe is around somewhere), but also because I have a recurring miserable thought that, if something goes wrong with Demeter's surgery, I will have to explain to Artemis that Demeter, like Chloe, is gone and is not coming back. And that, more than anything, is something I cannot bear to think about...but somehow often do.

Adaptive Clothing

Tomorrow Demeter has her appointment for the RSV vaccine. She gets the vaccine every three weeks, since its not a live vaccine, and wears off after a little while.

Before Demeter got her first RSV vaccination, she got the virus from her big sister and she (we!) were hospitalized for a few days. She actually didn't get nearly as sick as alot of the kids there, but it took a few days for her breathing to get strong enough for her to feed normally. It was (of course) crappy to be in the hospital, but I saw it as a dry-run for what we're going to experience when we're staying there after her surgery. I learned where the showers were, who to get pump kits from, and how little sleep you get on those little pull-out beds they have next to the babies' cribs.

One (little) thing that drove me nuts during the RSV stay was how difficult it was to keep Demeter warm and covered with all those tubes coming out of her. Her regular sleepers didn't fit over the IV, and didn't allow easy access for the doctors and nurses to do their tests; regular receiving blankets just didn't stay on her. Special clothes for those staying for a while in the hospital (or those with physical disablities) are available for adults - they're called adaptive clothing. I haven't found anything that really works well for babies, so I've been thinking alot about how to design some kind of sleeper that comes apart at the top for easy access to Demeter's chest (like this). Maybe it will help us feel a little more like normal people when we're in the wards (immediately after surgery Demeter will be covered in tubes and anaesthetized - she won't need any clothing there!).

So tired.

I knew that having a newborn and a toddler would be exhausting, but having a baby with a heart problem is making things even more challenging. Since my main job right now is making sure Demeter gains weight, I really have to make sure every feeding goes well - this seems to conflict with normal life on an hourly basis.

What should have been a nice visit to the museum for the whole family became particularly stressful for me when Demeter became kind of fussy and distracted and wouldn't really settle and have a good meal. All I could do was wonder how many grams she was missing out on, and whether she would make them up later. Whenever she spits up, I think of how hard we had to work to get that food in her, and I get a little sad thinking of the wasted effort. We (as a family) joined the gym and I would love to go every day, but at the same time I don't want Demeter to miss a feeding, and I know I would be worried every second I was there.

Sometimes I think that maybe I'm making too much work for myself, but looking at (and listening to) Artemis, I feel like I did a pretty good job, and don't want to compromise my parenting style just because things are getting tricky.

Breastfeeding is not magic... it just looks that way!

We're finished the 24-hour weigh-ins and have learned alot. First, the greatest news: Demeter has gained 140 grams in the past three days! This is after averaging around 16 grams a day for a couple weeks! It turns out that the drop-off in weight gain was not really related to Demeter's heart problem, but was more due to the faulty latch that the lactation consultant corrected for us on Friday.

What seems to have happened is that at the 6-week growth spurt that babies go through, Demeter's latch wasn't good enough to increase my milk supply - she was still taking in the same amount as she did before the growth spurt happened, not the increased amount she really needed to grow. With the new, improved latch, she's been able to increase my milk supply in a short period of time - thus the major weight gain!

What else might have helped Demeter's weight gain? I really concentrated on nursing by being a quiet room with minimal distraction, doing manual compression, and observing her cues.

We're going to keep the scale around so we can keep tabs on the weight gain in the future - there were signs that I completely missed by only weighing her once every two weeks. I hope we head into surgery before I ever need to start supplementing her.

More thoughts:

- I wonder if this is what happens with many babies with CHD, since it's even more important for them to nurse efficiently than other babies. Maybe the drop-off in weight-gain at 6-8 weeks that occurs with CHD babies has something to do with them not being able to stimulate production (due to lack of energy combined with inefficient nursing) as well as the increased pressure in the lungs.

- What's frustrating about all this is that I know if I explain to the doctors what happened (improved latch = more weight gain) I know she just won't care, since doctors don't know anything about breastfeeding anyway. They seem to think it's unquantifiable magic. I prefer to think this lack of knowledge is due to cultural bias combined with lack of education, but some people think it's all about the money.

Lactation Station

Demeter has been falling off in her weight gain; this is one of the signs of congestive heart failure, but she's also had a cold so I went to a highly-recommended lactation consultant for advice and suggestions on what to do next.

The lactation consultant corrected my latch so that Demeter could feed more efficiently from the breast, and we weighed her before and after the feed. The LC recommended that I take home a hospital-grade scale and weigh Demeter during 2 24-hour periods to see if she was taking in enough milk for optimal growth. I suspect that she's not, and that I will soon have to supplement her feeds.

It used to be that doctor's recommended that babies with CHD not be breastfed, because breastfeeding is more work than bottlefeeding, and those babies need to conserve their energy. Recent studies, however, have suggested that breastfed infants with CHD gain weight faster than bottlefed babies; in fact, the American Heart Association says that breastfeeding may not be more work than bottlefeeding, since oxygen saturation levels are much better when babies feed from the breast. Either way, the usual recommendation for babies with CHD who are starting to fail is that they be supplemented with breastmilk and a breastmilk fortifier after a regular feed from the breast.

Since one of my biggest worries is that an extended period of bottlefeeding before and after surgery might negatively affect Demeter's and my breastfeeding relationship, I am going to try supplementing her using a Lact-Aid filled with my breastmilk (specifically, the high-calorie hindmilk), and try to avoid the formula-based fortifier, if possible.

So far, the weigh-ins have been kind of a pain-in-the-ass, but I have learned alot, besides just how much Demeter is taking in. First, the scale is in our bedroom, so I have relative peace-and-quiet during feeding sessions; Demeter certainly seems to nurse better with fewer distractions. Also, she nurses many times and gets a little bit each time; this is consistent with feeding recommendations for CHD babies, as they can rest between feedings and not tire themselves out. Since I feed her on demand, she seems to have worked out this system for herself!

Introduction

This blog has two purposes:

1. Letting everyone in the family know what's happening with Demeter, in more detail than we might have time to give on the phone.
2. To serve as information for the parents of other babies with congenital heart defects, so they have an idea of what to expect before surgery, and during the recovery period.

Demeter has two holes in her heart - an ASD and a VSD. The VSD is supracristal, the rarest kind of VSD in the western world. This type of VSD rarely closes on its own, and Demeter's is especially large. The cardiologists (at CHEO) plan to do open heart surgery on her fairly soon; we are waiting for her to get bigger, and for her to show symptoms of congestive heart failure.