Whether you are pregnant or your child is in the NICU, learning that your little one has a heart defect can feel overwhelming. There are so many questions and what if’s that you may not know where to begin. This feeling is totally normal. My hope is to give you some tips on how to prepare for a baby with CHD, so you can feel confident in caring and advocating for your child!
We had no idea that our daughter had a heart defect until 3 days after birth. I had a healthy pregnancy and an amazing unmedicated birth, so we were shocked to find out that our baby girl had CHD.
Part of me was incredibly grateful that we didn’t know ahead of time, but I also felt completely unprepared. Within an hour of arriving at the hospital we had a diagnosis, but now what?
I began Googling things (which I highly recommend you don’t do) about CHD, so I knew what to expect on our journey ahead. Needless to say, I could barely find anything. That’s why I decided to write this post. I hope it helps you to navigate the path ahead with a little more confidence!
13 Ways to Prepare for a Baby with CHD
Some of these tips will be more geared toward a diagnosis in utero simply because most families find out about heart defects during the 20-week ultrasound. But regardless of when your baby is diagnosed these tips will help you prepare for having a baby with CHD.
1. Get a Notebook with a Pocket/Folder
Right after our daughter was admitted into the cardiac unit of the PICU, I purchased myself a notebook. You will want this to be something small enough to fit in your bag, so you can keep it with you at all times.
I had a lot of thoughts and questions racing through my mind, so this was a great way to jot them down.
I was also surprised by how many different people were calling me on a daily basis….. cardiologist, financial advisor, home oxygen rep, etc.
There will be a lot of information coming at you, so this is a great way to keep it all in one place.
2. Don’t Google It
My husband did this….. and it was not a good idea. It gave us a ton of (not true) scary information. The doctors reassured us that Google had outdated information and that we should never do that again.
Anyhow, we learned our lesson the hard way. You probably have already done this, so just don’t do it anymore.
3. Add Yourself to Facebook Groups
I’m going to advise you to do this with caution. Facebook groups can be an awesome way to connect with other heart moms. But, I found that there were some stories of kids with my daughter’s condition that made me worry.
I know this can be an incredibly helpful resource for many parents. For me, it was very triggering to see the different issues babies were struggling with.
4. Get Familiar with the Diagnosis
Knowledge is power. This is going to help you advocate for your little one. As I mentioned previously, I don’t recommend Googling your child’s defect because it can cause a lot of unnecessary worry.
A good resource to look at is the foundation for your child’s defect. This is a safe and reliable place to get informed.
I actually found a couple of ladies who have my daughter’s condition on Instagram and I’ve reached out to them several times to get answers. This is a safe way to get to know all the ins and outs of their diagnosis.
The more you know and understand about the defect the easier it will be for you to advocate for them. It also will help ease anxiety because you know more about it.
5. Prepare for the NICU
If you know your baby will be admitted into the NICU after birth, you will want to prepare for this stay – both physically and mentally. Unexpected stays are really difficult to navigate because you haven’t had time to accept it.
The nice part about knowing ahead of time is that you can begin to prepare for it, so it won’t feel so shocking and overwhelming. It’s nice to have things ready, so you are more comfortable too. You will want to read my post on what to bring to the NICU, so you have everything you will need!
Depending on the level of care your baby will need, bonding with your little one may be difficult. Make sure you read my post about things to do with your baby in the NICU, so you have a connection from day one!
Pin this Image to Your Pinterest Board, so you don’t lose it!
6. Get Familiar with Feeding
When my daughter was finally able to start enjoying breastmilk, they needed to fortify (up the calories) for each feed. This meant breastfeeding was out of the question for most of her feedings. Since this was my second baby, I was embarrassed to admit that I had no idea how to bottle feed
Needless to say, I was watching Youtube videos on how to feed a baby with a bottle.
Obviously, we weren’t prepared for this, but if I’d known that she had a heart defect I would have familiarized myself with both bottle feeding and breastfeeding. Although you will have a lactation specialist assisting you, it’s nice to learn ahead of time. This makes the whole feeding process a lot easier.
7. Learn about Pumping
Since this was my second NICU baby, I knew a thing or two about pumping. But, I had no idea what it meant to pump with the unknowns of WHEN she could nurse again.
I had an appointment with my lactation consultant right after she was admitted. This was incredibly helpful and helped me build a really awesome freezer stash. BUT, I wish I knew more about this before getting there.
This was one of my FAVORITE videos that helped with pumping:
I also recommend you download a pumping app. I just used Mandelas, since that’s the brand the hospital supplies.
If you can’t stay at the hospital for whatever reason, I highly recommend renting a hospital-grade pump. It was so much more efficient than my Spectra!
8. Plan out Meals
Whether you are planning a NICU stay or know that it’s a possibility, plan out meals. Truthfully, hospital meals aren’t nutritious and don’t taste that great.
I brought snacks and meals to the hospital, so I didn’t need to leave our daughter too often. Although we weren’t allowed to eat in the room, it just make the whole leaving process a lot shorter.
9. Look into Your Insurance Policy
Call your insurance company and get all the details. Since we didn’t know that our daughter would have a defect, we have been facing a LOT of bills because our insurance company doesn’t cover a lot with CHD.
There is a small potential that your child could be eligible for Medicaid. For our daughter, her defect was considered cyanotic which meant we could apply for it. After 2 months of anxiously waiting, we found out that they accepted her. This was a HUGE blessing.
If you are able to apply for medicaid, be sure to give them a call after you apply online and ask for them to back date it 90 days. This ensures all your bills will be covered.
10. GET FLIGHT INSURANCE
This one is in all caps because I didn’t want you to miss it. We had no idea that emergency flights were not covered under most insurance policies. So we currently have a $40k helicopter ride we need to pay for.
The financial advisor we met with informed us that there is such a thing as flight insurance. This plan is $385 a year for your entire family. It’s absolutely worth the peace of mind.
Our daughter needed to be transferred from one hospital to another with Nitric Oxide. Apparently, you can only be airlifted with this. Anyhow, we wish we knew this ahead of time!
11. Infant Toddler Program
Ask if your child will be eligible for the Infant Toddler Program in your state. This is a state-funded group of therapists that will come to your home and ensure that your child is meeting their milestones.
If surgery is a possibility, you will want to take advantage of this program. It’s important that your baby is getting all the help they need to ensure that they don’t fall too far behind.
12. Be Mindful of Germs
Many babies with heart defects may struggle if they get sick. The last thing you want is to have a longer NICU stay or get re-admitted. In the weeks leading up to delivery, just take some extra precautions to keep yourself safe!
Since I wasn’t able to be at the hospital for 10 days (read why here), the only thing I could do was pray. Even if this diagnosis came as a shock for you, God is not surprised by it. This was part of His plan for your family.
Cover your sweet baby in prayer and ask God to heal their precious body.
After learning about our daughter’s heart defect, I felt really overwhelmed with all the moving parts. I hope these tips on how to prepare for a baby with a heart defect help you to feel more confident as a parent. I’m praying for you and your child’s journey!
Below is a Pinterest friendly photo… so you don’t lose this post!
Other Posts You Might Enjoy….