Raising a child with CHD

My guest blogger this month is a beautiful lady who had a beautiful son with HLHS Hypoplastic left heart syndrome). Here’s her story:

Mending Wesley’s Heart

Tell us a little bit about you and your family
Hi! We are a family of 5. We live in the panhandle of Texas. My husband, Gerald, is a firefighter and I stay at home with our 3 kids. Brandon is 8, Makenna is 6, and Wesley is 5.

How far along did you find out Wesley had HLHS

I was 38 weeks and 5 days pregnant when I found out about Wesley’s heart defect. It was 6 days before our scheduled C-section before we knew things were about to get crazy.

What went through your mind when the doctors told you about it?

I was scared and confused when the doctors told me about Wesley’s heart. I tried to keep calm but It was overwhelming because as soon as we found out, things started to move very quickly since I was already so far along.

What advice did they give you?

I was scared and confused when the doctors told me about Wesley’s heart. I tried to keep calm but It was overwhelming because as soon as we found out, things started to move very quickly since I was already so far along.

Can you tell us a bit about his birth was it natural or c-section and what happened soon after he was born

Wesley was born via C-section since my previous 2 were also born that way. The NICU team were in the room and as soon as he was born, they took him to check his oxygen saturations. I got to hold him for about 30 seconds to get pictures but they had to take him and get him prepped to be transported to the Children’s hospital a mile away. After I was stitched up, they took me back to my room. About 30 minutes later, the transport team came by with Wes in a little medical box (for the ambulance ride). They let us look at him and then they were on their way.

How many surgeries has he had and will he need more?

He has had 3 open heart surgeries. The Norwood at 6 days old, the Glenn at almost 7 months old, and the Fontan at 3.5 years old. He has had 2 heart caths. He should be done with open heart surgeries but there is no definite answer as he grows.

I know it’s not a question any mother wants to hear but what have the doctors said about his future?

My husband had the hard question for the doctors before Wes was born. He asked about he prognosis. The doctors said Wesley should be able to be a normal kid. He won’t ever be the fastest or greatest at sports but he should be able to do most things that any other kid can. He just turns blue after a while :). Not every story is the same and so far we have been grateful that Wesley is a “normal” toddler.

Does he have any restrictions to what he can do as a child ie play sport etc?

So far, they haven’t limited Wesley to much. He turns blue after rough play but he is honestly unstoppable. We believe that’s the fighter in him. He never gives up and we actually have to stop him and force him to take a break from rough play haha.

Has this journey had any emotional or financial strain to you and your family? How have you dealt with it?

The journey has definitely been hard financially with traveling back and forth. We never know how long we will be away from home since it’s up to his body and how he heals. My husband and I have had to live separately for 3 months while I was in Dallas with wes and he was back home with the other kids. The stay apart can be 2-3 days or can be weeks or even months. He has had to miss work for things as well. It has all been an emotional roller coaster. It’s not always easy. Being away from home is very hard too. The hardest party is giving your child to a team of surgeons not knowing what will happen. It’s never easy seeing your child in pain and it’s hard being away from family.

What sort of support do you get ie health funds, government, family and friends?

When we were on government funded insurance, we would get some travel money to help with expenses while away. It wasn’t a lot but it did help. We have support from friends and family. I seek support from other heart groups because they understand more of what We are going through. Family has helped with watching our other kids when my husband and I both had stuff going on. A lot of friends have sent things to us and have overall just been emotionally supportive.

Did/do you have to travel far for his treatments?

Wesley gets all his care at Children Medical Center of Dallas. It’s about 6 hours away from home. We don’t mind the drive because it’s the absolute best place for Wesley to receive care.

What have been your best moments ?

Our best moments are just watching Wesley achieve even the smallest things! We celebrate everything from his 1st time drinking his whole bottle, to the big things like birthdays. We couldn’t be more grateful to have the privilege to watch him grow and become his own little person. He’s truly our little superhero and he has taught us to not take life for granted!

What have been your worst moments?

Our worst moments is probably before and after the surgeries. The worry and fear of handing over your child is terrible. After surgery comes the road to recovery. It’s not always easy and he has had several set backs, but he overcomes then. It’s an emotional rollercoaster. Also knowing that nothing is ever promised and that even a cold could land him in the hospital is a hard reality check. The fear of something happening never goes away but we don’t let his heart defect define him.

What have you done to keep yourself sane during it all?

We really just have to take it one day at a time, especially with hospital stays. Wesley could be doing fine one day and may be looking at discharge soon and then a curveball is thrown and the stay is extended.
I have had my moments of break downs since he’s been born but taking it one day at a time and being flexible to changes has helped.

What advice would you give to a mother caring a child with CHD ?

My biggest advice to other heart mamas is to never be afraid to ask questions! Before Wesley, I was kind of shy about asking doctors questions in general. I quickly learned that if I had questions, I need to ask either his nurses caring for him or his doctors. You are your child’s biggest advocate! And you know your child better than anybody else. If you feel like something is wrong, don’t be afraid to speak up. No question is silly. There have been times that I have spoken up about things and I have proven a nurse wrong concerning Wesley’s.
Also, never be afraid to reach out for support. Having a heart kiddo is no easy task and having other people who “get it” will help a lot.

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