CHD, GUIDE** for new parents

As promised, I'm coming to you as one heart mom, to another, with every single resource I can find to help you along on your journey!

Let's face the facts, this. is. hard. I promise you though, you are not alone! Heart moms stick together, and I promise you will find this list to be useful along the way.




Gracie's Gowns - Charlie received an adorable gown, with his name embroidered on the front, from Gracie's Gowns free of charge. These return a sense of normalcy to the hospital life, and I appreciated it so much.

 

 Sisters By Heart - Specifically for parents of children with Hypoplastic Left Heart Syndrome, or HLHS. The link I provided is the direct link for their form to nominate a family or your own to receive a care package for newly diagnosed infants. They also provide packages for kids that are Fontanning. 

TinySuperHeroes -  Donates capes to children with illnesses. Charlie received one similar, but I believe from a different organization. Again, link takes you straight to the nomination page. 

Tubie Friends - My Charlie received an amazing Build a Bear, with a chest scar, gtube, and nasal cannula. It is superman print and we cherish it so much. Many children with congenital heart disease have feeding tubes and other forms of medical equipment. 

When a parent is told that his or her child needs a feeding tube other medical equipment, it can be a very scary time for the entire family. To make this process less frightening, we have created a product called Tubie Friends™ .

For children receiving a feeding tube, a stuffed friend with medical equipment mirroring the child's can make the entire process less frightening. As much as possible, we mirror the child's medical interventions to the animal by placing a similar feeding tube, as well as additional medical interventions such as central IV lines, tracheostomy tubes or oxygen cannulas if possible. Additionally, each Tubie Friend comes with a parent letter providing information and listing support groups for feeding tubes. 

Ronald Mcdonald House -  We have stayed at our local Ronald Mcdonald House numerous times, and it is our home away from home. If you feel intimidated by this for any reasons, many times areas have youtube tours of local RMH's. They are usually very close to the childrens hospital. If you do not have one, check to see if your hospital has a list of discounted hotels near by.

Scribbles&Crumbs Blog - All around in general a very uplifting, and beautifully composed place on the internet to work through your feelings with others. Lexi's son Charlie passed away from Chd, and she took her grief and created something so beautiful. I highly recommend checking out her blog, as it helped me when my own Charlie was born.

Heart Mamas Facebook group, along with many other Facebook groups are without a doubt one of the BIGGEST forms of help I found during this entire journey!!!! You can message me personally, and I will help you get into Heart Mamas, because it is a private group. Feel free to comment if you need help getting into the group. Of course, I will check you out to make sure you are legitiment and not someone trying to steal our kiddos information.

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Extra things you may need to hear or know.

1. Finances are going to take a hit, plain and simple. Make a Gofundme or CaringBridge account and don't be afraid to ask for donations! Make T-shirt fundraisers, ask your independent distributor friends to run a campaign for your family.
- ALSO, there are a few things available online to work, even if its not alot. Amazon mechanical turk could give you something to do while in the hospital, and be a little extra money for you. Look up Appen Global, I worked for them a few months.

2. Do not be afraid to be open about your concerns. My son has a gtube and we had a lot of issues with it not being taken seriously. He had a tongue tie inhibiting his ability to eat, that was looked over for 2 years. You are your childs biggest advocate. The doctors job is to take care of your childs health, and they cannot do that to the best of their abilities without YOU. You know your child.

3. Don't be afraid to seek second opinions. Your childs health is top priority. Research hospitals. Research everything. Bring your printouts. Keep a binder. Ask for a transfer or second opinion if you feel your baby is not getting quality care. Do it.

4. See if you child is eligible for SSI and/or medicaid. Talk to your hospitals social worker from day one, they will help you.

5. If your child has a sibling, and need help with them coping, ask to speak to your hospital child life team. They specialize in this.

6. TAKE CARE OF YOURSELF. I went into post-partum heart failure after my son was born. I had a c-section, and we don't know the exact reason, but I'm positive how hard I pushed myself after he was born didn't help anything. Rest, please. Your child needs you, and mind almost lost me.

7. Get depression or anxiety medication if you feel you need it. Do not allow fear, sadness or depression to consume you. It will come. Do not feel embarrassed or like a failure. The strongest people know when to ask for help.

8. Remember to feed your body what it needs. It can be rough. I mean, our hospital had a McDonald's in it, and a very expensive cafeteria. You do the math. Still, I made my life that much worse by letting my weight and health get our of control. Please, please don't forget to care for yourself.

PLEASE COMMENT, IF YOU KNOW OF ANY OTHER RESOURCES TO ADD** THIS POST WILL BE UPDATED REGULARLY AS I REMEMBER THINGS AND STUMBLE UPON THEM SO BOOKMARK THIS AND SHARE IT TO YOUR PAGE.