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.