May 31, 2008 at 9:25 pm (Uncategorized)
All is well. I went and enjoyed some spa treatments today (my gift for mother’s day) and Merv hung out with Marek. Ben went to his usual Saturday gymnastics. There’s really nothing to report. Isn’t that great?!?
Check this out. This is Marek after his surgery, then just before he came home and now. What a difference! And where did his hair go???
PS Happy Birthday Auntie Odile!!
May 28, 2008 at 8:50 am (Uncategorized)
Ok, it looks like we’re on track for Marek’s baptism. It’s now going to be on Saturday June 14 (it was originally going to be on the Sunday, but that didn’t work out). He has his sedated echo appointment on the 12th, but hopefully he’ll be fine and at home the same day, or on the 13th at the latest. Hopefully the whole Friday the 13th thing doesn’t get us! That weekend is Father’s Day and my birthday, so it’s going to be quite the weekend!
And since pictures are my most requested item… new pics of my boys…
May 23, 2008 at 7:59 am (Uncategorized)
You know, right now, just for today, things are normal. Or almost normal anyway. Marek takes a few medications, definitely more than an infant should, but other than that things are “normal”. We have no doctor’s appointments for at least the next week, not even a visit by the home care nurse. Marek is eating well, just like any other 3 month old (can you believe he’s almost 3 months now????) and as long as he’s clothed you can’t even tell by looking at him that there’s anything wrong (his scars are healing really well though). His colour is even good these days (although if he’s really upset he turns blue very quickly). When we go out, no one can tell that his heart doesn’t work quite right and that his organs are all messed up inside. Right now, he’s a happy, smiling baby. I couldn’t ask for more. I can’t tell you how much these “normal” days mean to me because I know more craziness is coming with more procedures and operations. But today all is well. The sun is even shining…
Hmmm… that was kind of sappy… I hope I didn’t jynx it now! Oh well, I’ll take the calm while it’s here….
May 20, 2008 at 2:11 pm (Uncategorized)
Woohoo! Marek behaved. His sats were 70-71, his heart rate was good and strong and he totally impressed the nurse. And get this- his weight is now 9 lbs (4.1 kg)!!! Yay! He’s growing like a weed. He did so well, in fact, that the nurse isn’t going to come next week. She’ll wait until the first week of June. Here’s to good days!!
May 20, 2008 at 8:47 am (Uncategorized)
Ok, Peachy – Here’s a picture from this morning for you… (make sure you click the picture so you can read the logo…)
May 19, 2008 at 7:22 pm (Uncategorized)
Another nice, uneventful weekend. The home care nurse comes tomorrow. I’m a little nervous about that. Things always seem to go kind of funny when she comes over. Hopefully, Marek behaves himself!
Marek is starting to be a lot more fun to dress now. He fits into 0-3 month clothes (as opposed to newborn) and without the tube it’s a lot easier to get shirts on. I’m hoping that when he gets weighed tomorrow, he actually hits 9 lbs! Stay tuned!
May 15, 2008 at 7:14 pm (home)
I can’t believe how beautiful it is here right now. It was really windy, but sunny and hot. Ben, Marek and I went for a walk today (to get coffee, of course!) and it was so nice to be out enjoying the weather. Ben had a great time examining every rock between here and the Starbucks and I think Marek slept through the entire outing. It just seemed peaceful somehow being out in the sunshine.
I finally got a good picture of Ben and Marek together where you can really tell that they’re brothers. They totally have the same look, as if to say “huh?”. The other two pictures are just a couple of new ones that I really liked…
May 13, 2008 at 6:58 pm (home)
We have a celebrity in our midst! Actually, it was Ben. His picture was in the paper today. I didn’t know which one and we probably wouldn’t have known at all if it weren’t for Tyler, but he phoned and left a message saying Benny was in the paper (Thanks Tyler!!). So I packed up Ben and Marek and we went for a walk down to the grocery store and bought one of each paper. Once I got home, I was able to go through them and find Ben. His picture is in there from the pre-schooler picnic that he went to yesterday. He looks so cute! (Don’t worry, Ma – I’ll save it so you can see it when you get home from Europe!)
Marek’s doing well. I’m constantly worried because I have the sniffles and I REALLY don’t want him to get sick, but so far he seems ok. My hands are raw from washing them constantly (I think I need a better moisturizer, but where do I find a really good one that has no fragrances?). It’s actually kind of weird that we have no appointments this week. It’s kind of scary, because there’s no doctors to say he’s doing ok. I kind of miss the reassurance. But Marek’s been happy and smiling and generally in a good mood, so I’m taking that as a great sign. He seems to be trying really hard to laugh out loud, he just can’t seem to get the sound out yet. I think it’s coming though. I’ll definitely post when that happens!
May 11, 2008 at 8:20 pm (Uncategorized)
What a nice mother’s day. Marek slept through the night, and Merv and Ben let me sleep in this morning and made me eggs benedict this morning for breakfast. Yummo!
I also wanted to say I think we’ve solved the medication issue. I was totally worried about making sure Marek was getting all his meds now that he has to take them orally. He has a tendency to drool them out. But I found this great little invention that’s basically a teeny tiny baby bottle, specifically for medications. It uses the same nipple as his bottles. And it works great! He drinks them down, just like he does his milk! Yay!
Here’s a picture of Marek “laughing” and one of Ben showing off his scratch:
May 10, 2008 at 5:51 pm (home)
I think I heard Marek laugh today! It was kind of a giggle, but it was definitely there. He’s definitely a very chatty guy, with coos, gurgles and squeaks. I’m guessing he gets that from me… Hopefully, my squeaks are a bit more understandable though…
Merv hasn’t been feeling well the last couple of days and I can sort of feel a bit of a sore throat coming on. I really hope we don’t get sick. We really can’t afford it. Ben seems fine so far, although he had a spill yesterday and cut his head on a piece of plywood. He has a nasty gash on his forehead. He didn’t need stiches or anything, but it does look pretty bad. He looks very cute with a big Blues Clues bandaid on his head.
I’ve been asked about Marek’s diagnosis. It’s incredibly complex, but I’ll do my best to sum it up. He has complex congenital heart disease (CHD) and heterotaxy. The CHD consists of a whole host of heart defects including holes in his heart and plumbing that doesn’t hook up properly to his lungs. His first surgery was to put in a shunt so that he’s connected from his heart to his lungs and also to remove an obstruction. He also has right atrial isomerism, which means that his heart kind of has two right sides instead of a right and a left, if that makes any sense. The heterotaxy, or situs inversus, basically means that his organs are mostly on the opposite side that they should be on. For example, his heart is on his right, rather than on his left. Also associated with heterotaxy and right isomerism is asplenia, which means he has no spleen. On top of all that, his bowel is malrotated, which means it’s placement is a bit weird and could potential twist – which would be a huge problem. I guess to sum it up, his organs are all mixed up inside. Hopefully that helps, it’s kind of a crazy diagnosis. We should know more about his heart defects before his next surgery. I’ll keep posting as I know more. Feel free to ask questions and I’ll do my best to post answers.
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