The Marek Times

Well, we survived the immunizations.  So far, anyway – we survived the appointment, at least.  It was a little bit harder than I thought it would be to take Marek by myself.  There’s so much gear to carry!  Especially since it snowed today so we had to dress warmly on top of everything else.  But he was a trouper, considering.  I was pretty worried because he’s had a bit of a tummy ache all day and has been cranky so I fully expected him to be totally ticked off the whole time we were there, but thankfully, he was calm and happy (other than for the actual needles part).  His tummy ache seems to be gone now and I’m pretty sure it was a side effect of yesterday’s vaccine.  I hope he doesn’t react to any of these ones, but he got 4 today, so we’ll see. 

Marek woke up during the night, really for the first time, last night.  I’m not sure if he was genuinely hungry or it was the aforementioned tummy ache, but he did eat quite a bit at 4 am.  Here’s hoping for a quiet evening and a good sleep tonight.  I really need it!

Oh, and I forgot to mention yesterday that Marek’s weight was 7 lbs, 4.5 oz at the pediatrician’s.  It was 7 lbs, 8 oz today at the clinic, but I don’t really trust that one.  Especially since they thought he was 18.5 inches.  That’s half an inch shorter than at birth!  I really don’t think he shrank.  So, I’m going with yesterday’s measurements of 7 lbs, 4.5 oz and 20 inches.  He’s growing like a weed now!

We had our first appointment with Marek’s new pediatrician today.  Dr. S is really nice – I like him.  All in all, it was an ok visit.  He wasn’t happy that Marek wasn’t going to get his immunizations until the end of May, so he made a call and got him bumped up to this week.  I’m much happier about that.  As an asplenic kid, he really needs his immunizations on time.  We had a bit of a weird mix up with the appointment conflicting with diet clinic, but it’s all sorted out now.  Immunizations are tomorrow, I see Dr. H (my doc) on Thursday, we see Dr. R (the cardiologist) on Monday and then we have diet clinic on Tuesday.  And I really hope that seeing Dr R on Monday goes well.  I really don’t want to have to get re-admitted again.  I’m praying that his oxygen sats are good when we get there.  They’ve been really good at home!

Marek got a new vaccine today for rotovirus and Dr S changed his antibiotics, but other than that it was a fairly non-eventful appointment.  If only they were all like that! 

We actually ventured out this weekend.  I just couldn’t stand being housebound anymore.  I know we have to be super vigilant about what we expose Marek to, but I think he was happy to get out too.  It was just nice to get out and see something different.  Plus it was fun to go shopping as a family.  It was a little stressful, managing all the feeds, meds, diaper changes and whatnot, but it was fun.  And I think Ben enjoyed going out as a family too.  I still can’t believe what a big boy he’s become.  I’m so proud.  Here’s a picture of Ben at law day with his auntie and uncle (he had so much fun! but he definitely doesn’t want to be on the wrong side of the bars)  and of Marek with his dad (we have an almost identical picture of Merv with Ben.  I’ll post it if I can ever find it).

Oh, I’m also very excited to announce that Marek is offically 2 months old and has actually outgrown some clothes.  He’s outgrown his 7 lbs clothes and is now into 10 lbs (1 mth) clothes!  woohoo!  I don’t think he’s quite 7 lbs yet, but he’s close.  He’s almost the size of an average newborn, now! 

So far so good.  It’s been quiet since we got home.  Marek is bottle feeding really well and generally behaving himself.  His oxygen sats have been holding steady in the 70’s (when I check them anyway).  Here’s hoping that this continues! 

Phew.  We came home late this afternoon.  Marek was a bit of a troublemaker today, but thankfully, they did send us home.  For the most part he kept his oxygen saturations in the 70s where they belong, sometimes as high as 85, but every now and then he’d drop right down.  Mostly it seemed to happen when he was really wiggly, which makes me think the machine probably wasn’t reading well.  He also dropped down just before he pooed, which I guess makes sense.  He doesn’t breathe well when he’s straining.  So the plan now is to monitor him at home to see how he does.  We’ll see his new pediatrician next week (they managed to get us in early) and then back to the cardiologist the week after for another echo.  Craziness, but I’m glad they’re monitoring him closely.  And I’m really hoping for a quiet rest of the week!

I did get to talk to the cardiologist about what Marek’s next surgery will entail.  I guess it depends on what the MRI shows.  It depends what the hole between his ventricles is like.  It will either be repairable (which is obviously the best case scenario) or not.  If it is, then they’ll fix him up completely.  If it’s not repairable, then they’ll do something called the Glenn procedure and then when he’s at least 18 months they’ll do a procedure called the Fontan.  Those surgeries will make his heart work as a single ventricle heart.  His prognosis is still good either way, but he’s much better off if they can repair the ventricular septal defect.  Please pray for him that the MRI (which is scheduled for July 3) shows that his ventricles can be repaired.  I’m soooooo hoping!

He’s sleeping well now and he seems happy to be home.  Here’s hoping for no more surprises!

We had to leave our baby there, at the hospital.  I feel totally gutted, leaving him there alone, but we’re so exhausted and there’s nothing more we can do today.  He actually had a pretty good afternoon.  He slept most of it.  His oxygen is back up, but he’s still needing a little bit of oxygen through the little nose prongs every now and then.  They did a chest x-ray and an echocardiogram and both were good.  They were happy with his shunt and how his heart was working in general.  It was really scary this morning because Dr. R (the cardiologist) couldn’t hear the murmur from his shunt, so she was worried that it wasn’t working well.  But they could hear it this afternoon, so they’re a lot happier, and it looked really good on the echo.  Right now, the plan is to keep Marek overnight at the hospital and if he behaves (his oxygen stays high and no other issues) then they’ll send him home tomorrow.  Please send prayers that he’s ok and comes home tomorrow.  He definitely likes to keep us on our toes…  what a stinker!

We’re back in the hospital.  Marek was admitted this morning when his oxygen measured REALLY low at his appointment with the cardiologist.  He was really angry and upset and his oxygen just wouldn’t come up.  He’s stable now with good oxygen levels (although he’s on a tiny bit of oxygen to help him out) and we’re waiting for some tests to see what happened.   I don’t know how long we’ll be here, I guess it depends on what the tests say.  Please pray for us that this is a short visit.  I’ll post again when I have news.

Yesterday was a really good day for Marek.  He was a total star at the diet clinic.  He took the bottle like a champ, so we can now feed him by bottle for 5 minutes or so at a time and then top him up with feeds through the tube.  I’m very excited about that.  The next goal is to get him to take more and more by bottle so that he can get rid of the tube!  He really did great.  And we saw Dr. W again in the afternoon just to follow up and he’s really happy with how Marek looks.  Plus he seems really happy with how we’re coping.  It’s always nice to hear people say we’re taking good care of Marek and doing well.  Like I said earlier, it’s sometimes hard to know if you’re going crazy, so I’m glad there’s people out there checking on us.

Marek also pulled out his tube this morning, so I took a few pictures before putting it back in.  This is what our little man really looks like:

Ben’s off today with Uncle Dan (and Meme and Grandad) at Law Day to see Auntie Larissa at work.  He’s very excited to see the police cars and the court house.  I hope he has a lot of fun there, he’s been really looking forward to going.  And then tonight, Merv and I are going to go out for supper just the two of us.  I wonder if we’ll think of anything other than the kids to talk about!  

Woohoo!  Marek is growing like crazy!  His nurse came today and weighed him (and he managed NOT to pee all over the place) and he weighed in at 6 lbs, 8 oz (2.97 kg)!  That’s still way smaller than your average newborn, but still, I’m very excited.  That means he grew 9 oz in 10 days, isn’t that great?  And wouldn’t you know it, his oxygen measured low again when she first got there.  I’m starting to think it’s her.  My theory is that she stresses him out and he holds his breath a bit when he sees her, so his oxygen goes down.  She wasn’t quite ready to send me back to the hospital, but said we’d probably need to keep an eye on it for the rest of the day and go in if it didn’t go up.  But we checked it one last time before she left and it was right where it was supposed to be!  Yay! 

Tomorrow is diet clinic.  I hope he does well with the bottle!  Send us good eating thoughts!

Hmmm… what’s new…  Marek’s home care nurse rescheduled, so she’s coming tomorrow.  I’m a bit stressed about it because last week when she came, the monitor didn’t work and so she sent us to the hospital.  I just hope the monitor works this time.  He looks fine to me, so I’m pretty sure his oxygen is good.  He’s still happy, trying to smile lots (Merv finally got to see it in person last night!).  And then we’ve got the diet clinic on Friday.  I’m not sure at all how that’s going to go.  I know they’re going to try bottle feeding him.  I’m praying that that goes well.  I’m worried that his breathing is still too fast though.  I guess we’ll see.  I’m trying not to have any real expectations for that meeting.

Other than that, not much is new.  Ben’s finally getting used to us being home and he really loves being a big brother.  He’s so proud.  My mom and I went last night to what we thought was an open house for the playschool I was considering for him and it turned out that last night was registration night.  And too many parents showed up so they had a “lottery draw” to see what kids would be accepted (they have a limit of 20).  I guess I should feel fortunate that they’ve accepted Ben, but I really think the whole process was a big goofy.  Like we had to compete to get in or something.  It’s playschool, not Harvard.   But anyway, he’s in.  I think he’ll like it.  It’s the same one I went to MANY years ago and it’s french immersion, although I think Ben’s french is a lot more advanced than the other kids.  Maybe I just feel weird about the whole thing though, cuz I don’t fit in with the other moms.  They all seem to be stay at home moms and I feel sometimes like they look down on me because I work.  Whatever.  Maybe it’s all in my head and I’m just paranoid.  Or, maybe I’m just not as serious about playschool.  I mean, will this really affect the rest of his life?  Will he make it to Princeton now since he got into the “right” playschool?  Give me a break…  I just want him to play and make friends and maybe learn something along the way.  Ok, that’s my rant for the day!