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!
Sunday, February 25, 2007
Monday, February 19, 2007
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!
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!
Wednesday, February 14, 2007
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.
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.
Sunday, February 11, 2007
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.
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.
Saturday, February 10, 2007
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.
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.
Wednesday, February 7, 2007
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.
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.
Saturday, February 3, 2007
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.
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.
Friday, February 2, 2007
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.
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.
Thursday, February 1, 2007
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.
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.
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