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Things I've learned having a special heart baby

PostPosted: Mon Jun 14, 2010 10:38 am
by Laura C.
My little guy was diagnosed with Congenital Heart Defects (CHD) when I was pregnant. We found out at my 18 week ultrasound, thank God for a new u/s tech; she noticed something was wrong with his heart right away. We were referred to a high risk ob, that's when we learned that he many CHD. For the rest of my pregnancy I had to see a pediactric cardiologist and a new high risk ob. The cardiologist was amazing and explained everything to us, in terms that we could understand. He was delivered in February, pink and screaming. He's our little miracle fighter.

This is what I've learned so far:
It's ok to show emotions in front of strangers, they expect it.
Stay informed with what's happening with your baby, even if you've already asked the questions before.
In our state, the doctors are legally bound to mention abortions up to 23 weeks; they don't want you to give up on your baby, they just have to tell you.
Don't expect your delivery to be what you think of as normal. I had a normal delivery, but as soon as DH cut the cord; they wisked him away. I was lucky to see him right after he was delivered, he was born at 2 and I didn't get to see him until 8.
Remember no matter what, those doctors and nurses are fighting to save your baby's life.
Get friendly with the NICU nurses, they'll take the time to tell you what's going on with your LO that day.
It's ok if you aren't sitting with your baby 24/7, you and DH need rest too.
Keep an open mind about different kinds of surgery.
Don't get angry if the surgery date gets cancelled. This happened to us and a nurse said think of it as time for your baby to get stronger.
Remember that your baby has a team and they have to agree on a decision.
Alot can change in the NICU, one day DS would be fine and we'd come back the next day and he'd have a nasal cannula and be on antibiotics.
Be flexible with changes.
Call to check on your baby any time. I called every three hours during the night, right after I pumped. They might seem agitated, but it's good to hear how your baby was eating or had a bath.

PostPosted: Tue Jun 15, 2010 10:36 am
by mamalynn
all good points! coming from another mom with a special heart baby. :D

PostPosted: Thu Jun 24, 2010 1:13 pm
by AnchorsAway
I'm so glad I stumbled accross this! We recieved our diagnosis at my 20wk scan and it has been a blur of fetal echoes and crash-courses of the anatomy of the heart ever since!

More than anything, I've been worried about breastfeeding and the birth. I'm a planner and it has been really hard since nothing can be certain until he gets here and "we just see how he does".

Thank you again for your post!

PostPosted: Tue Jul 06, 2010 10:32 am
by MommyofAlex
Oh, Laura, I'm just now seeing this. :( I hope your little guy is doing better now. :) We've stopped posting in our "wee bit of luck" thread, but a few of us are on Facebook now and we keep in touch that way. PM me if you're interested in doing Facebook with us. I would love to catch up with you and see how your little ones are doing now. :) My little girl was diagnosed with VSD (ventricular septal defect) at just 4 days old. Her heart defect has closed on its own, thank goodness.

PostPosted: Thu Jul 08, 2010 12:15 pm
by Laura C.
Anchors: I wasn't able to breastfeed Remington because of his defects; these heart babies burn alot of calories and bottle feeding is just easier. Feeds really aren't at the top of their lists, more than likely your lo will have an ng tube while he's in the NICU. We were lucky to be close enough to TCH, they have an awesome NICU and milk bank/LCs.
I know you're worried about money and time off, is he going to be born at a local hospital or a children's hospital? Be sure to talk to the social worker in the NICU, even the hospital will call you to talk about financial assistance for surgeries. There is alot of help out there.
If you have any questions pm me.

PostPosted: Wed Dec 08, 2010 10:55 am
by ambien
This was a nice post Laura, thanks!

One of my twins was diagnosed with Single umbillical artery and right aortic arch today and I am uncertain if she's going to turn out fine. The doc has requested I do an amnio to rule out a DS child but I also worry for CHD, IUGR and death.

Or worse, I have to make the decision if I want to do selective reduction. :( I can't bear to think of killing my baby.

PostPosted: Sun Aug 07, 2011 10:08 am
by Kizziedee
What a good support network :) our dd was born with chd and has had 3 open heart ops all before her second birthday- in fact she's spent every birthday in hospital but this is the first year we aren't going in for surgery yay! She is an inspiration, a true resilient sweetheart! And I bet ur babies are the same!!

Re: Things I've learned having a special heart baby

PostPosted: Sat Aug 30, 2014 6:57 am
by Southerngirl419
Hey all,

I'm almost 18 weeks, I was told at our 16 week gender scan that our little guy has pleural effusion and a thicken NT, 14mm. I had an amnio that Tuesday and so far the all tests have come back negative. We went back to our OB this week and he started talking about fluid in his belly and hydrops...I stopped him mid sentence and said excuse me this is the first I've heard about fluid around his belly, he kept talking about taking things week by week and just trying to make it to viability. He also told me some more amnio tests had come back negative, i had just gotten a call from specialist office saying they were still waiting for the reminder of results to come in. We had an ultrasound after talking with him and the ultrasound lady confirmed there was no fluid in his abdomen just in his chest....this makes me so aggravated, did u even look at my scans or read the amnio results. I left there very frustrated! We go back to the specialist Thursday and I'm going to ask to see a perinatal cardiologist and relieve and echo...neither have been offered.
Thank you for the encouraging stories of your little ones, I pray our little guy keeps fighting and is a healthy, happy little boy!