I changed the format for the blog and added Marek’s 24 week ultrasound picture to the title bar. Let me know what you think…
Birth plan
January 31, 2008 at 9:04 am (prologue)
I’ve had a couple of people ask what our birth plan is for Marek. It’s totally subject to change at this point (obviously), but this is the plan as we know it today: We’re going to have him the totally regular way, no c-section or anything like that. The reasons are: there’s more risk for me if we have a c-section, and we want him to bake as long as possible before he comes out. If he is a candidate for surgery, they want him to be as big and strong as possible. My actual due date is March 5, and we’re kind of hoping he’ll stay in there until at least the last week of February (maybe a leap year baby?). We are pre-registered to give birth at the Royal Alex hospital and once he’s able, Marek will be transported to the U of A. I’m totally horrified that they’re going to take my baby away from me and take him so far away, but hopefully I’ll be able to follow him soon after.
So that’s the plan. The birth itself will hopefully be uneventful cuz things will get really crazy shortly afterwards when they try to keep Marek stable and get him totally evaluated. At this point, I just want him to stay inside where it’s warm, cozy and safe.
Appointment – Jan 30
January 30, 2008 at 5:53 pm (appointments)
I had another appointment with Dr. H today. Overall, not too exciting, except that my blood pressure was a little obscene again. I think I just got worked up though because I knew it would be an issue there, so it was basically a self-fulfilling prophecy. My BP was totally normal last night and I told her that, so the new plan is to have a nurse come to my house every day to check on me and take my BP. Hopefully, it’ll be decent at home and I won’t get nervous or worked up about it. I guess I need to relax more, but honestly, who wouldn’t be a little stressed in my position? Maybe I should start scheduling these appointments right after my massages…
Other than that, Marek seems to be growing just fine and his heart rate is normal. My next appointment is at the perinatal center on Friday. They should be able to give me an idea of how big he is and stuff. I don’t really enjoy those appointments, but it is nice to see Marek on the ultrasound. It gives me comfort to know that at least for the time being, he’s ok.
contact
January 28, 2008 at 1:07 pm (Uncategorized)
I actually made contact with a mom in the US who’s baby has a similar diagnosis to Marek’s. Her little guy is now 5 months old and just had his second surgery. He’s quite the little trouper and soooo cute. His heart condition is a little different than Marek’s but still, it gives me hope. I’m also absolutely amazed at how strong they are. I hope I’m as tough. She’s been really great at answering my questions and stuff. I hope and pray for the best for their baby and family.
Other than that, not much is new. It’s freakishly cold and I kind of wish I could just stay in my nice warm house until Spring. -47 degrees with the windchill is just too much for me. You should have seen me trying to find a parka that I could actually do up. Having my belly stick out of my coat just isn’t an option when frostbite is a distinct possibility. Oh, well. It’s not a fashion show.
I’m going for a massage this afternoon (provided I don’t freeze on the way there). That should be good. I’m a little sore from playing the Wii all weekend. I guess we kind of overdid it – my arm actually hurts. So does my knee, but I’m going to blame that on the weather. I did figure out how to bowl while sitting on the couch. Again, it’s not graceful, but I’m getting pretty good. And Merv and I are just sooooo addicted to this thing. I guess it’s good to have a distraction.
Wii had fun
January 26, 2008 at 5:18 pm (Uncategorized)
Ok, so picture me, 8 months pregnant, bowling in my living room at 11:30 at night. Well, actually, maybe don’t picture it – I probably looked like a beached whale flailing around trying to get back in the ocean. But my point was that we actually found a Wii! They’ve been sold out for months now but we stumbled on one at the WalMart near my work. And the thing is soooooo cool! I can’t believe how much I like virtual bowling. Who’d have guessed? But it’s definitely a ton of fun. And it’s something I can actually do even if I look and feel like a manatee.
Lots of people have asked about Marek’s name. Basically, we were looking for a strong name – something that could help him fight the good fight. Marek means “war-like” so that definitely qualified and plus we like the sound of it. We had asked for Ben’s opinion, but he’s still stuck on “Guido” or “Luigi”. I told him what name we picked, but he just said that that was what we could call him – he’s going to stick with Guido/Luigi. I suppose it could be worse, he could have chosen another name from the Cars movie – like “Snotrod”, “LeakLess” or “Wingo”.
Appointment – Jan 24
January 24, 2008 at 1:14 pm (appointments)
My appointment this morning was pretty uneventful. That’s a good thing I guess. I’m a bit sad that I won’t be seeing Dr. B until after Marek is born now – I’ve been officially transferred to Dr. H’s care. Dr. B is an awesome doctor and I’m a bit bummed he won’t be assisting in my care for a while, but that’s the way it goes, I guess. The team looking after me seems very capable. I will definitely miss Dr. B though. On the plus side – my weight was WAY more reasonable at this office, so hopefully whatever happened yesterday was just an off measurement. My blood pressure was still a little high though… We did listen to Marek’s heartbeat and once again Dr. B commented that if it hadn’t been for that second ultrasound, we would never have known. Marek’s growth is right on target and he has a healthy sounding heartbeat. It’s really hard to make sense of all this.
I sent my notice to HR today regarding my mat leave. I really hate dealing with HR, but hopefully they won’t give me too much of a hassle. They want certainties, but I don’t have any. My notice says I’ll be away for the full year, but I doubt I’ll be gone that long. I’ll just have to let them know later when I’m ready to come back. Hopefully they can deal with that – it’s the best that I can do at this point.
Thanks to everyone that’s been checking out my blog. I’ve heard from a few of you and it’s nice to know that there’s people thinking of us. And it’s kind of neat to check in and see how many people have stopped by.
More background
January 23, 2008 at 8:34 pm (prologue)
I thought I’d write a little more background on how we got to this point. The first 20 weeks of pregnancy were pretty much uneventful – a little (ok, a lot) of nausea, but that’s about it. We went for the first, and what was supposed to be our only, ultrasound right at 20 weeks. Nothing showed up as out of the ordinary. The tech seemed a little frustrated though that she couldn’t get any good pictures and actually complained that there were a couple of measurements she couldn’t get. But everything looked ok, she said. For some reason, I was really bothered by the whole experience. I can’t put my finger on what exactly.
At my next Dr’s appointment, I mentioned to the doc that I wasn’t really happy with the ultrasound. He said that they missed a measurement, so if it would make me feel better, he’d send me for another one – at a different lab. I said great. And off I went. The second ultrasound took a lot longer, but I just figured that they were more thorough. I got a really great picture of the baby – I totally think he looks like Ben! It turns out that the measurement that they missed was his head circumfrence and they were able to get it no problem. She showed us his heart – everything looked great to us. We went home happy.
A couple of days later my doctor’s office phoned to say they’d scheduled me for a fetal echo and an appointment with the perinatal center. I was stunned. I didn’t know why. The nurse started to panic because she’d assumed that the doctor had already told me what they’d found. oooooops. She had the doctor phone me on his cell phone from wherever he was. That was when they told us about situs inversus and holes in the heart.
The fetal echo was originally planned for Christmas Eve, but the perinatal appointment came pretty quick. The doctor there didn’t want us to wait until Christmas for the echo so she had them move it up to December 5. Good thing. That would have made Christmas really awful. December 5 was a truly horrible day. We spent over 5 hours at the Children’s hospital. I was 27 weeks, and they had trouble seeing everything they wanted to because the baby was getting so big and his bones were getting less see-through as they calcified. And the left to right backwardsness made it really hard for them. In the end, they told us about his heart and the heterotaxy (which kind of means that his organs are all messed inside and he may actually have no spleen). They told us the baby probably won’t make it. We were devastated. How do you deal with that kind of news???
Slowly but surely we’re starting to understand more about this condition. Early in the new year, we met with a multi-disciplinary team (cardiologist, perinatologist, neonatologist, social worker and some other people that I don’t remember) to make a game plan. What we really want is to have Marek and then have him evaluated to really find out the extent of the damage. From there we can decide if surgery is a possiblity. So that’s the plan. We also got to visit the NICU and see where he’ll be taken for evaluation. It’s not as scary a place as I thought it would be.
So, here we are. We don’t know what’s in store for Marek, but we’ll deal with it one step at a time. Thank you, everyone, for your prayers.
Appointment – Jan 23
January 23, 2008 at 4:15 pm (appointments)
Well, my appointment was ok this morning. My blood pressure was higher than they’d like it to be, so they sent me for blood work and such. I go back again next week, and hopefully my BP will be better then. On a silly note, they said my weight went up 10 pounds in 2 weeks!!! Can you imagine? There’s gotta be something wrong with the scale… That’s my story and I’m sticking to it. I’m sure it has nothing to do with cheesecake.
The best part of my appointment this morning is that Dr. H gave me a perscription for massage. I get to go once a week for the next three months. My first one will be next Monday. So far, my appt schedule for next week is: Monday – massage, Wednesday – Dr. H, Friday – perinatal centre. Hopefully that’s it. That’s enough appointments for one week, isn’t it?
First post – January 22, 2008
January 23, 2008 at 4:00 am (prologue)
Ok, I’ve decided to officially blog our journey and obviously, this is my first post. Hopefully, this isn’t too complicated. Basically, I want to keep everyone up to date on what’s happening with our little family. It might take a couple of posts to get the whole story out, but I’ll start with a quick recap…
Back in December, we went to the Stollery Children’s Centre for a ‘fetal echo’. At that point, the doctor’s were concerned that our baby had holes in his heart and situs inversus. The situs inversus itself wasn’t much of an issue – that just means his organs are backwards (what’s supposed to be on the left is on the right). The holes in his heart didn’t scare us too much at that point since most are repairable. The fetal echo unfortunately showed that his condition was WAY worse than we expected. His new diagnosis is complex congenital heart disease and heterotaxy. They asked us if we wanted to terminate the pregnancy. We said no – and named our baby Marek.
They said his prognosis is poor. But they also said they don’t know the full extent of the damage to his heart. Basically, they think that Marek has little or no connection between his heart and his lungs. Our hope is there’s more there than they could see at the time. For now, we go to the perinatal centre every two weeks so they can keep an eye on his progress, we visit the OB/GYN every two weeks so they can keep an eye on my progress and we more or less have a plan for birth. Other than that, everything is unknown…
That’s probably enough for a first post. Tomorrow morning, I visit the OB/GYN from the hospital where I’ll deliver. Then Thursday, I visit my original OB/GYN to give him an update. I’ll definitely post more as we go along.
