Scary News (Trigger Warning for Complications)

[bexincanada]

Hey everyone.  I didn't know where to post this.  I didn't want to just put it in the pregnancy update thread, because of trigger worries.  

I think I mentioned we were going for an ultrasound last Friday because I was measuring large.  I'm really glad that they ordered the ultrasound, the growth is fine, but they found heart issues and sent us to a children's hospital last Tuesday where we got a fetal echocardiogram and a confirmed diagnosis of hypoplastic left heart syndrome.  As far as I know it exists on a spectrum - in our case the left ventricle is not as small as in some cases, but the aorta and aortic valve are narrow/small.  

We have another echo and consults at Sick Kids on Monday, so far we know the plan is now to deliver in Toronto and the baby will have heart surgery at Sick Kids 1-2 weeks after birth.  We'll find out more about all this on Monday.

Lots of feels and not a lot of sleep.  Trying to take care of myself as best I can, knowing that stress isn't good for the baby... but it's tricky.  Anyhow, that's where we're at.

[karlamo]

I'm so so sorry to hear this. If there was ever a time to feel stressed out, it's now! Please, feel and process whatever you need while getting your head and heart wrapped around this. I'm glad they caught it and are monitoring and preparing for it.

Is it a straightforward surgery? One time thing, or will baby need multiple surgeries?

[wittyandwaiting]

bexincanada, I am sorry to hear this news but happy that you're connected with Sick Kids, they are a really great hospital. DS was there for a while as an infant.

Definitely let yourself have all the feels, I found that when I was stressed out was a great time for me to write out a list of questions and thoughts that I had since it was already on my mind.

I also found it helpful to start a notebook and the top of each page and write the date and who I spoke to and what happened that day so that if I needed to reference back for any reason or if there was something I wasn't clear on I could reread, I found this really reduced my stress levels.

Try to be kind to yourself and let us know if we can be helpful or useful in any way.

[bexincanada]

karlamo, it depends on the case. Standard is three surgeries, but so far the message we got is one step at a time, starting with the first surgery and then see. There is no cure, the goal of the surgeries is to create workarounds to get the heart functioning as well as it can. We'll learn more on Monday. The long-term outcomes of the surgeries aren't well known as this form of treatment is still relatively new. I'm learning more about hearts than I ever thought I would. The baby should be O.K. in utero because there's an extra valve that closes after the baby is born.

Thanks for the tips wittyandwaiting. I know Sick Kids is the best place to be.

It's like being in a weird limbo right now. We found out about it last Friday, an hour before my mom and step-dad came for a visit, and then the next day we had several of my aunts over. This weekend is pre-natal class and the next two weekends are showers. These are the things I'll find most difficult as it's hard for me to be in a celebratory mood when there's a chance the baby won't make it.

[JustJudy]

Thinking of you and baby! It sounds like your doctors are on it and you have a good plan in place. Hugs.

[mahler5]

I'm so sorry to hear this. I'm glad they caught it now and you all have a good plan and are at a great hospital.

I can't imagine how scary this is for you and your family. I will keep you all in my thoughts and prayers.

I don't know a lot about pediatric heart conditions but I do know there's so much more they can do now. I second what witty said about writing all your questions down etc. I know when I am stressed it helps, especially when a lot of docs are so busy. That way you ask absolutely everything you want to.

Don't feel bad if you are stressed because you are worried about being stressed pregnant. You have taken great care of yourself so far. A little stress isn't going to hurt anything. Like you said, the baby has the extra valve open now, so your baby's heart is working great right now. I don't know how you couldn't be stressed. Hope you get sleep the best you can and get everyone else to take care of you.

[cetcar]

We're thinking of you too. Sounds like you are in great hands but I imagine you're feeling overwhelmed. Take care of yourself as best you can and feel free to use this space for support.

[kh826]

I am also so very sorry to hear that you are dealing with this. I cannot imagine how scary and stressful this must be. I will be thinking of you and your family often. Please keep us updated when you can. Remind me, you are due in June, right? Sending big internet hugs and lots of support your way!

[bexincanada]

Thanks everyone.

Due June 1st, kh826.

[dannigirl]

Oh no!! All I can say is take it day by day. Sick Kids is one of the top children's hospitals and they will take amazing care of your little one.
I was born with a heart defect. It wasn't found until I was 24, but I had a hole the size of a silver dollar which had to be repaired at Toronto General.
A friend of mine had heart surgeries when she was a child and she bounced back pretty fast. Kids are resilient little things.
I really hope all goes smoothly and only one surgery is needed.
I am so sorry you are going through this. Just try and stay positive, as hard as that will be some days.
*hugs*

[sdfonz619]

Wow, that is a lot for you to have to take in. Sending lots of positivity your way. Like dannigirl, I also have a close friend that had heart surgeries as an infant and she has done amazing. Positive thinking and FX whatever is necessary in terms of treatment will offer the same results for your LO.

[wittyandwaiting]

bexincanada - Thinking about you and your family today!! Hope your day at SK gives you more answers.

[keba]

So scary and overwhelming, especially when it sounds like there's just a lot going on all around - no time to really even digest. Sounds like a solid plan with good care and support, can only take it a little at a time. Sending you the best wishes and comfort!

[healz413]

I'm so very very sorry to hear this. What upsetting news to receive. I'm going to send lots of good vibes out into the world for you.
If you need any support in The city either now or after your baby is born, please don't hesitate to let me know.

[bexincanada]

So Monday was a marathon day at Sick Kids and Mt. Sinai. Another fetal echo, a 2 hour full u/s, and meeting with cardiologist, nurses, social worker, and ob. We learned about the Norwood procedure which is the surgery that will happen at 1 week - it was a lot to take in, and trying to see 75% survival rate for the procedure as a positive instead of being freaked out about it. That's the first hurdle, then there would be additional surgeries at 5 and 3 months, with the goal of being able to "reroute the plumbing" to make the right ventricle do the work of both the left and right.

The delivery will be pretty typical. Right after birth they will start a continuous medication prostaglandin to keep the deart duct open that usually closes after birth, until they can do the surgery. Pretty quickly the baby will be taken over to Sick Kids to the critical care unit for tests and before/after surgery. Then would spend time on the cardiac unit. We were told to expect to live downtown for at least a month, so we're busy trying to get things in order that we can.

While it's been a whirlwind, we're grateful to have support around us as we take it one step at a time.

[wittyandwaiting]

bexincanada from what I've heard Ryerson offers really affordable short-term stays during the months of May, June and July in their student residence. I stayed there with a group of friends during pride a few years ago and if I remember correctly the rooms had decent cooking facilities which might help you keep your cost/stress levels down.

I'm really happy that you left with a lot of information. I'm keeping you and your family in my thoughts and sending you all kinds of good vibes.

[mahler5]

I've been thinking of you and your family. Again, I'm so sorry you all are going through this. Glad to hear you have support during this and are taking it one step at a time. Will be thinking and praying for you and your family.

[kh826]

bexincanada - sending you and your family tons of support and positive thoughts. You seem to be handling this amazingly well. I will be thinking of you. Please keep us updated when you can. Hugs!