CHD Clothing Do's and Dont's? Expecting a daughter with HLHS in Feb.

tami2272

Hi,

I am having a baby girl due Feb. 5th with Hypoplastic Left Heart Syndrome.  Her name is Alaina Rose   I was wondering if any other CHD parents out there have suggestions on baby clothes that will be comfortable for her after surgery? Do's and Dont's?

Thanks so much!

Tami

Amy and Jay

Love your name choice! My DD is Elaina (Lainey) :-) She mostly wore button down pajamas for the first few weeks but I don't remember her clothes being that much of an issue with her scar. She was very well healed by the time we left the hospital.

Good luck with the rest of your pregnancy and keep us posted on little Alaina :-)

tami2272

Thanks so much!  We're already calling her Lainy too   I feel like her clothing should be the least of my worries but it's one thing I can control and it's too fun to buy her lots of pink.  I just want her a comfy as possible.

Thanks for rhe advice and I will keep you posted.

Tami

gremaud07

Sleep sacks that have sleeves, and kimono style tops are great if your real worried

 Our son had surgery at three weeks old and they kept him naked for the first few days. Once he was off the pacemaker the we put him in sleep sacks or snap pjs.  

Jcrab

Clothes that snap up the front instead of going over the head are easier. Buttons or snaps are also better than zippers, just in case she has IV's or a feeding tube. You might be able to dress her in headbands and socks before she is ready for clothes, just make sure they have been washed. You should also be able to bring your own blankets for her to use in the hospital if you want, you will likely have to take them home and wash them yourself between uses. Anything you use in the hospital might get stained or lost though, but a lot of families like to contribute this way and make things look a little more normal. If you want to visit the NICU before baby is born and get a feel for the unit it might be helpful to have a little more information on what to expect.

I don't have a baby with CHD, but work as a NICU RN. Best of luck to you and your sweet baby.

goldenleaves

Congratulations!

After Lauren's open heart surgery I like things that snapped or zipped rather than going over her head. I was super nervous about moving her around too much, probably more nervous than I needed to be! Lauren didn't come home with any monitors so we didn't worry about cords. Just the NG tube!

jlh123

goldenleaves:

Congratulations! After Lauren's open heart surgery I like things that snapped or zipped rather than going over her head. I was super nervous about moving her around too much, probably more nervous than I needed to be! Lauren didn't come home with any monitors so we didn't worry about cords. Just the NG tube!

My nephew was born with hypoplastic left heart symdrome.  He'll be turning 13 years old this year and doing great.  In fact, has been on his baseball All Star team which is nominated by peers the past three years.

Ok, I'm done bragging!  I was one of the caregivers for him when he came home.  Everything was snapped and zipped as well, nothing over his head.  He never left the house except for dr. appts until his second surgery a few months later so everything was just comfy for him.  He only came home with the ng tube, no monitors.

Best wishes to your little one!

Isalupup

Hi, my son had surgery at three months old, although it was not heart surgery so my advice may not be as relevant.  Once we brought him home after surgery we used this to keep him comfortable at times:

boppy lounger 

https://www.toysrus.com/product/index.jsp?productId=3812962 

 Also your daughter's name is beautiful. 

tami2272

Thanks so much everyone. It's such a relief to have people out there that know what we will be going through. We're staying very positive and Im really focused on enjoying the rest of my pregnancy and staying strong for our baby girl. These forums definitely help with that. Thanks again for the kind words and much appreciated advice. We will keep all posted!
Tami

imeltice

Big Hugs, when DS had OHS, the hospital told us absolutely no zippers. So like the others I'd stick with snap sleepers, and kimono style shirts. Good luck with everything!

Msanchez1125

We used the button down/snaps after my daughters open heart surgeries..... we are a CHD Family too. Its a bumpy road.... but so worth it