Brand New Baby!

I've been meaning to post for ages, but we haven't had a cardiology appointment for a while and don't have any news on the medical front. Instead, here are some pictures of a pretty much full-recovered Demeter: almost crawling, either ecstatically happy or completely miserable, a lady who likes to be on the go and sleeps just as ... lightly as her sister did! In other words, a normal six-month old...

We're home!

We were discharged from the hospital yesterday. This last week has been the longest and worst of my entire life. Basically, Demeter had a really hard time withdrawing from the crazy amounts of morphine they gave her, and would cry non-stop unless the nurses sedated her. She was so frantic and overtired, she refused to eat for 5 days after they took her off the ventilator (she was fed by an NG tube, but refused to nurse). I really didn't think I'd ever have my baby back again. In the meantime, I was pumping for way longer than I thought I would have to, and my milk supply totally tanked; I got a prescription for domperidone just in time, and Demeter finally started nursing and acting a little more normal (she's still not 100% yet). They told me she would be in the hospital for "a week, tops" - it turned out to be 15 days.

It's great to be home, but I feel a little strange too. Besides the surgery and recovery, being in the hospital was very difficult for me - I saw a baby die in the PICU, and seeing the family's pain was more horrible than you can imagine. The nurses and doctors were really great and they try to make the hospital as cheery as possible, but there was alot of misery around us as well.

I'll have more to write later; Demeter has a weigh-in on Monday and a post-op appointment next week; hopefully all will be ok.

Now, pictures!

The day after surgery

First time holding her!


The surgeon, our hero!


The day before discharge - a very happy baby!

Waiting...

Wow, alot has happened in the past week. Demeter had surgery on Thursday, and it went "exceptionally well". She was only on the heart-lung machine for 50 minutes, and her heart was only stopped for 20 minutes.

Since then her recovery has been somewhat slower than expected. It's taking a while for her heart to get used to the hole being fixed, and they've had to give her alot of extra fluid (in the form of albumen) to keep her heart from getting too stiff. It's kind of complicated to explain, but suffice it to say, for the past couple days she's been looking like the michelin man. Today she's been peeing it off, and if she does well, they might extubate her tomorrow.

We also found out today that she has a small residual hole that may or may not close over on its own. It's between the sutures and about 3 mm long and very thin. This is really dissapointing, but it probably won't affect her heart function. Basically, in order to keep her heart stopped for as short as time as possible, and considering that her hole was quite large, they can only suture it so tightly.

The nurses in the ICU are truly amazing, and I feel that she's in great hands. Chris and I are alternating nights spent in the teeny parent room there, but I will be staying at the hospital once she's awake, so I can be there to nurse her when she's ready - I can't wait!

3 more sleeps

Demeter's white blood cell count is normal, so it looks like surgery is a go (I did leave a message with the nurse about Demeter's intermittently runny nose, but it's been like that since the beginning of January, so I don't think it'll change anytime soon.) Suddenly, I'm really scared.

Now all we have to do is clean the house (my dad is coming up to help with Artemis) and get ourselves ready - I don't think we'll ever be ready, though...

While I'm writing this Demeter is "talking" to Artemis, all sorts of coos and chuckles; Artemis never made that many sounds like this when she was Demeter's age - since she talks non-stop now I'm afraid I'll have two constant monologues going on around me from here on out!

Cough, Cough, Sneeze

We had cardiology and pre-assessment appointments today; Demeter's only gained 17g a day since the last visit, but we all think its because she has had a cold, and anyway 17g isn't horrible. It looks like we might get through this without having to use the breastmilk fortifier, which for some reason makes me feel good. She'll have enough foreign substances pumped into her soon!

Demeter will have to have more bloodwork done on Monday to make sure her white blood cell count is down before they'll proceed with the surgery. I think she'll make it; it doesn't seem like a very serious cold. If not, they'll just postpone it a week, because there aren't a whole lot of other cases right now (maybe this is the benefit of doing this at a "small" children's hospital, rather than, say, Sick Kids in Toronto).

It turns out Chris is a match for Demeter's blood type and will be able to donate 2 units of blood for the surgery. This won't statistically affect her chance of getting a blood-borne infection, but it will make us feel better, and it's two units of blood they can save for someone else (I can't donate since I'm breastfeeding). Fortunately, Chris hasn't been in a malaria zone in the past year (Just missed it by a couple months - he's usually all about the malaria zones!), and doesn't have cytomegalovirus, a kind of herpes virus that the majority of us have and is dangerous for people with weak immune systems.

I am a complete moron

Yesterday morning, instead of putting Demeter's medicine in the fridge where it's supposed to go, I put it in the freezer (who knows why) and it stayed there frozen solid for 12 hours. I called Telehealth and a random pharmacy, but no one could tell me if it was still ok after being frozen, so I had to get it refilled today (an almost impossible task), and she missed a dose.

Also, both of the girls are sick with a cold/runny nose. I hope it gets better before Demeter's cardiology appointment Wednesday or it might threaten the surgery schedule. Demeter sometimes vomits up an entire meal when she coughs, so I'm constantly on edge.

So far, a completely crappy day.

The only good news? I seem to have perfected the Lact-Aid overnight.

Pre-op Appointment

We had an amazing pre-operative meeting yesterday. First, our surgery was bumped up to February 22nd, which provides a nice cushion in case Demeter comes down with a cold (the surgery will be postponed if she is at all sick). That's only a week and a half away! Also, we got to meet the surgical team and spent over an hour going over the risks, benefits, and technical details regarding the surgery. The benefit is obvious; without the surgery, Demeter simply would die of one or more of the effects of the hole on her heart. The risks are minimal (less than 1%) but serious: death (obviously), stroke, heart attack, infection from the blood transfusion. We discussed the possibility of stroke alot, since they may not even know that she's had one until long after the surgery (since she's such a little baby, and doesn't walk or talk yet). Because she's so young, though, her brain could find a "work-around" if a certain part of it is injured; babies recover much better from strokes than you or I could.

As for the surgery, they basically crack open the sternum, remove a gland that is in the way (one that the body doesn't need), open the pericardium (the sac that holds the heart), stop the heart, put her on the heart-lung machine, open the heart, patch up the hole with Gore-Tex, start the heart again, and close everything back up. This takes about 4-6 hours. Then Demeter is in the ICU for a few days, and when all is well she's moved into the surgery ward until she's nursing and gaining weight well. If there's a bed available I'll stay in a room near the ICU while she's there, but when she's in the ward I'll be by her bedside. Usually this all takes 5-10 days.

After the meeting, we got Demeter's bloodwork done (it took 45 minutes to get 5ml because of the medication she's on), and she had a chest X-ray. Chris had bloodwork done as well to see if he could donate some of the blood she'll need.

I'm feeling really good about the moved-up surgery date, since the sooner this is all over the better. I keep on freaking out about Demeter's weight gain, and the scale is my nemesis.

It's a roller coaster ride

This is a completely different post from what I would have posted yesterday. The Lact-Aid was being really difficult, I weighed Demeter when I shouldn't have, and the number wasn't great, and I was thinking that this all was becoming too much.

I guess I needed some sleep, because when I woke up I realized Demeter looked great, I thought of some new tricks to get the Lact-Aid to work better, and her weight was better. Averaged over the last few days since we've started the medication, it's actually pretty good, and I should know better than to weigh her every day and expect the weight to go up in an orderly progression.

Today, we have an appointment with the cardiologist to see how Demeter is doing with the medication (since I'm weighing her so often, I know she's doing well). They never explained to me that a really large weight gain would signify that the medication was not doing its job, and that she was retaining water again. The lactation consultant explained this to me, and I'm really glad she did, so I won't mistake the water for some kind of miraculous weight gain!

This is my first trip out of the house since we started with the supplementing/pumping, and I haven't quite figured out the logistics yet. I have a cooler, and a hand pump, but using the Lact-Aid outside the house will be some extreme kind of NIP (nursing in public).

Why am I doing all this? I asked myself this the other day. I'm not opposed to bottle-feeding, in general, and I might have tried to bottle-feed breastmilk for Demeter if I wasn't scared that, since she's having difficulty feeding anyway, she'd develop a preference for the bottle that would be hard to overcome. Three weeks of work in order to preserve the next 18 months or so of breastfeeding is what it comes down to.

We've got a golden ticket...

I was singing this all day yesterday...we got a surgery date! March 1st, and our pre-op appointment is February 9th. We've got kind of a relief mixed with terror thing going on here now, with a little sprinkle of pure exhaustion.

It's a good thing there's an end in sight to this whole hole-in-the-heart ordeal, too, cause the Lact-Aid is kind of a pain. It's a little fussy to use, and with all the washing and sterilizing of both the device itself and all the pump parts, I spent all of today either nursing, pumping, or standing over the sink/stove. I don't know whether it's the medication, or the supplementing, or both, but Demeter has really been nursing alot today, when two days ago she wouldn't spend more than a minute or two at the breast. I am now completely drained, literally and figuratively. Now, with all the nursing or pumping, my supply should be up (hopefully) tomorrow and I won't have to spend so much time tapped out. Intellectually I know this to be true, but I'm kind of afraid I've just completely run out of milk and my body just won't make any more. Of course, the complete opposite is more likely to be true, and what with all the nursing and pumping I'll probably have breasts as hard as rocks tomorrow. Nature is just too clever.

I realize that all this discussion of supplementing and weight gain and pumping makes it seem like breastfeeding is really hard. It's really not! This is a unique case, and the vast majority of people (including myself, previously) can (and do!) nurse with no problem, after a few weeks' learning curve. No funky equipment required.

More tube technology

Picked up the Lact-Aid today and learned how to use it from the LC. Demeter wasn't too keen on in at first, but took in 122ml from my breasts and the Lact-Aid together, when yesterday, she'd barely take in 15 ml in a feeding. The Lact-Aid is actually encouraging her to stay at the breast longer, so that she takes more from the breast using it, than she did without it! She does much less work, and gets more out of it, so she stays there for a full nursing session. Compare this to the supplementing advice I got from the cardiologist: giving her the breast for 10 minutes, and then top up with a bottle to see if she gets any more. That would be too much work for a baby with as little energy as she has when feeding. 10 minutes is a long time.

The device itself is kind of interesting, but I have to say that its going to take a while to learn how to use it, and cleaning it is kind of a pain as well.


Above is a picture of the pump parts being boiled (the Lact-Aid is sterilized in a vinegar and water solution).

Below is the Lact-Aid itself (I'll post a pic of it in use at some point):


So basically, I fill the system, wear it in a necklace around my neck, tape a tube to my breast, and away we go! Afterwards, I have to pump that breast to get milk for the next feed, so there's alot of stuff to clean. I need to figure out how I'm supposed to nurse her at night with this, so I have to do some internet research. I keep on thinking that this is alot of work to do, but women who are BFAR (breastfeeding after a reduction) do this for every feed until they wean. Incredible.

Want bigger muscles?

We started Demeter on the diuretic Aldactizide today. Interesting fact: if you google aldactizide, you will find that competitive bodybuilders use it to lose water in the days before a competition, so that their muscles look bigger.

Tomorrow we go to the lactation consultant again to pick up the Lact-Aid, and learn how to use it. Demeter hasn't been nursing much today; hopefully the combination of the medication and the supplementary system help her out.

Tube Technology

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.