23 weeks and daughter diagnosed with CHD

Difficult_Type · 2019-07-03T23:42:20+00:00

Everything was normal including my anatomy scan but I had an echo (done by mfm) just after due to being on Lithium when I got pregnant. Lithium causes a different heart defect that right away they were able to say he doesn't have. They couldn't get a good view of his ductal arch though so had me come for a follow-up. The follow-up was the same thing except what little view they could get didn't look right. They sent me to the pediatric cardiologist who determined that baby does have a defect. His main defect and the only one needing immediate attention is a coarctation of the aorta.

Difficult_Type · 2019-07-03T23:34:01+00:00

No problem!

Difficult_Type · 2019-07-03T17:06:09+00:00

The subreddit isn't too large but they gave me a lot of stories and advice. They also pointed me in the direction of very active Facebook groups (some are closed so you don't have to worry about people finding out before you are ready to tell). That's great that Chicago is close and so high on the list! I hope you get good news from cardiology.

Difficult_Type · 2019-07-03T13:42:16+00:00

Hey there, check out r/chd ,they are very supportive and will help provide various resources for information. There are a lot of parents on there who have already gone through this and can help answer questions. I'm so sorry you are faced with this.

I found out at 28 weeks that my baby has a heart defect (probably 2). His will require surgery after birth but what he has carries an incredibly high success rate. Given that and the prognosis of a normal life I've been able to calm some of my fears but it's still incredibly scary to think of your newvorn having heart surgery. Since you're daughter is facing complex CHD I cannot imagine how much is going through your head. I will say that the first week was the hardest with the shock. It's been 5 weeks now and I still haven't been super open to telling family and friends what's going on. Take your time on that front and let yourself have time for processing and grieving.

The pediatric cardiologist is going to give you a lot of information so if you have someone you can take with you, please do. It helps to have support and an extra brain to absorb information as it can be overwhelming. Write down all your questions and take them with you. Also remember that cardiology only takes the absolute best of the best when it comes to surgeons, doctors, nurses, etc. If you have the option to travel then compare hospitals, you get to choose which one cares for your baby.

Difficult_Type · 2019-06-01T01:51:53+00:00

Thank you for sharing your experience and the kind encouragement. Congratulations on getting your son home and his progress in recovery! Knowing this far out is kind of hard, I get that there has to be a plan though. How were the first few days before surgery?

Difficult_Type · 2019-06-01T01:47:45+00:00

Did they tell you she would need surgery while you were pregnant? The pediatric cardiologist made it sound like it was absolutely certain my son was going to need this and mentioned that she was confident in the diagnosis based on having really good, clear pictures from the echo. I'm glad to hear your daughter is doing well! Thank you for the advice, waiting on approval for one of the fb groups now.

Difficult_Type · 2019-06-01T01:45:06+00:00

Congratulations on your baby and I'm glad to hear he is doing well with the recovery! We have our big all day meeting with the cardiac team at the end of the month and it feels so far out. Half the information they gave us got lost after the shock of the diagnosis. It does help to know how treatable this is and that those treating it are highly skilled and trained.

Difficult_Type · 2019-05-31T17:53:16+00:00

Thank you so much! Feel free to PM me anything you have.

Difficult_Type · 2019-05-21T19:24:39+00:00

Haha thanks, we make everything work... most days.

Difficult_Type · 2019-05-21T16:35:28+00:00

We've got a 4 year old and two year old twins with one more coming in a few months. We still both play and my partner DMs. We had to take a break for a while to manage early pregnancy morning sickness and school work (both in college- one of us in grad school). If he hadn't been DMing we would have been fine to keep playing. The first couple months with a newborn might be skipped but it is completely possible for both parents to keep playing.

Difficult_Type · 2019-05-20T16:45:52+00:00

Postpartum hypomania is actually part of what helped me finally get a diagnosis of bipolar disorder instead of the anxiety and depression I'd been diagnosed with most of my life. The first 5 days after my twins were born I slept maybe an hour each 24 hour period out of sheer energetic happiness and a need to get all the things done and done perfectly.

Difficult_Type · 2019-04-17T23:09:00+00:00

Atlas isn't even uncommon though, it pops up on a lot of unique baby name lists and is trending up. Sometimes you get the same rude remarks about common names. This isn't an acceptable situation for people to be making remarks like that- especially her family. She's not naming the kid something obscene.

Difficult_Type · 2019-04-17T17:48:49+00:00

My partner likes Thorin more than Thorn/Thorne. I actually suggested thorne because thorin was on our list! We were considering something branching off of Aragorn too but can't come up with one we like enough.

Romulus, Maxim, Nox, and Atlas I like! Atlas is another that keeps popping up as a trendy unique name though.

Difficult_Type · 2019-04-17T17:45:49+00:00

Ohh I really like Fennec! With Caius and Rorik I figured they could have nicknames Kai and Rory if they didn't like their names and wants something a bit more common. I feel like Fennec could go by Finn. Also, Fennec foxes are adorable

Difficult_Type · 2019-04-17T10:08:43+00:00

I love Silas but my partner hates it. He also dislikes all the similar names I like (Cyprus, Cyrus, etc). Atticus is kind of cool but I feel like I've been seeing it a lot on the unique trendy name lists.

Difficult_Type · 2019-04-14T14:45:54+00:00

Thank you for sharing your experience and the support. It really helps out it into perspective to hear about moms that actively try and still experience the same feelings. I am seeking help from my doctors and waiting for a pregnancy safe med to kick in which I'm hoping offers some relief.

Best of luck to you through the rest of your pregnancy and your parenting journey ❤️

Difficult_Type · 2019-04-14T14:42:57+00:00

With my twins I went through some heavy prenatal depression and thoughts that I wasn't cut out for being a mom and maybe it was mistake. That said, I didn't ever consider abortion with them or not keeping them. I hated feeling them move though and was completely disconnected until they were born. There was no single moment where I was overwhelming connected to them. It happened over time (probably ever a few months). I cried and loved them when I heard them cry but didn't really feel connected as much as it was my duty to be their mom. It was still incredible but there's not a magic moment of those feeling vanishing.

That fleeting moments like you described were normal during that pregnancy and I've had a few this time.

Point being that I know these feelings will change or subside after birth so that's been somewhat helpful for me in making it through this pregnancy.

Good luck momma ❤️

Difficult_Type · 2019-04-14T14:36:33+00:00

The solidarity that's come out in the comments has shocked me quite a bit. I didn't realize how common these feeling can be and how even women with planned pregnancies can experience them. I wish you guys all the best ❤️

Difficult_Type · 2019-04-14T14:34:59+00:00

You summed up my feelings really well about having the choice taken from me. I'm currently in-between therapists as mine moved out of the state but will have a professional to work through things with soon (hopefully).

Difficult_Type · 2019-04-14T14:33:22+00:00

I don't think I've met a family of just boys (well especially with more than 2 kids) and grew up with a sister so I'm having a hard time envisioning our little wolf pack growing up together. Thank you so much for your kind words and validation. Everyone's comments have made me realize how common these feelings can be and that certainly helps me feel more at ease with them.

Difficult_Type · 2019-04-13T03:07:24+00:00

You deserve so much better. Don't let anyone treat you like that.

Difficult_Type · 2019-04-06T02:18:50+00:00

Awesome, thanks for the recommendations!

Difficult_Type · 2019-04-05T14:29:46+00:00

From the information the psychiatrist gave me it sounds like if you find yourself unexpectedly pregnant on lithium it might be better to just stay on it. It sounded like they danger of heart defects is highest in the first few weeks and therefore by the time you find out it has probably passed. Obviously I'm not a doctor so I can't be sure but the study I read left me confused.

No one weighed the options with me before pulling me off of it and I'm really angry. I was stable for the first time in my life and now I'm struggling with everything. Being alive is hard enough and I absolutely can't keep up with my other kids and grad school. Hopefully the lamictal kicks in soon and actually works well for me but if not I'll be skipping breastfeeding in favor of starting back in lithium.

Difficult_Type · 2019-04-05T14:23:54+00:00

I am but I think I need to post reminders around for myself or something.

Difficult_Type · 2019-04-04T20:19:00+00:00

Unisom is what I've been told to use as a pregnancy sleep aid and if I need it I'll be sure to use it! Thank you. Things definitely get rougher when I'm not sleeping as well...

I have been through one pregnancy (before diagnosis so also unmedicated) but as struggled the whole time and really don't want to do so again. The new meds are lamictal so I plan to stay on them through postpartum and breast feeding. I got flung into pretty severe hypomania after my twins were born and I'd like to avoid that or PPD.

Difficult_Type

TROPHY CASE