How to Prepare for Open Heart Surgery (from a mom who has been there)

How to prepare for open heart surgery, from a mom who has been there.

Around 60 % of the children born with Down Syndrome also have congenital heart defects.  Some of these will close/heal on their own and others will require surgery, either heart catheterization or open heart surgery.  A scary situation for any mama to face and one that all to many mamas of babes with Down Syndrome do have to go through.  Jess has a beautiful little girl, BerkLee, who is thriving, but that was because she was able to have a heart condition repaired when little Berk was a much smaller gal.  Here’s Jess & Berk’s story:

As a mom with a child who has Down Syndrome and heart issues. I get asked about open heart surgery A LOT! I want to bring the mama’s that ask me about it to my home and let them meet and play with my daughter, BerkLee, while I show them pictures, pictures that are really hard to look at, and explain all of the tubes and give them details about her surgery and my experience.

 

There are a few things you should know if you are reading this…

 

You cannot ever adequately prepare

 

There is no way to get completely ready or be prepared for your baby to have Down Syndrome and Open Heart Surgery (OHS)  you will see your angel in a way that no mom ever wants to see their angel.

 

However, your baby is going to be way more tough than you are, and by far, way more tough than you ever expected them to be!

 

Do take a look…read and really look

 

I would suggest researching infant open heart surgery and checking out the images. This will help you to be ready for the first time you see your baby after surgery. It is a hard sight to see for a person, it’s gut wrenching for a mom.

 

While I was getting ready for BerkLee’s surgery…I found myself lost in worry and thought constantly, to the point I would fill my body with anxiety all the while my baby girl was right in front of me looking to me for time together, to bond, for me to teach her, for me to connect with her. I went through the motions of doing those things, but what I wouldn’t give to go back and just live in the moment with her during those months.

 

Live in the Here and Now

 

Always keep in mind that even though you know your baby’s heart isn’t working like it should, they don’t know that. What is happening at that time is all they know.

 

Celebrate their strength, celebrate their willingness to work…STAY IN THE MOMENT because that’s where they are.

 

I was so nervous and worried about every little thing for no reason! This is their life and it’s all they know. Follow their example, fight with them, because they only know to fight, and fight they will. I had so much anxiety the night before surgery that I made BerkLee upset.  When you get to a point that you just need to cry to let it out, LET IT OUT! You won’t get past that worry if you don’t get it out of your system.

 

Go hide in the bathroom and cry until your little heart is full again.

 

When the worry creeps in, acknowledge that it’s a worry, it’s a thought then replace it with a positive thought about how great things are going to be once this surgery is behind you.

On the days leading up to her surgery when I found myself getting consumed by the worry I would do something totally opposite than what I normally did. For example when I get dressed every day, I have an order that I get dressed in. Right leg goes in first etc. I would force myself to put my left leg in my pants first, or put my socks on first. Sounds silly, I know, but what it did was take me out of robot mode and make me put effort into what I was doing at the time, therefore making my brain work and taking the focus off worrying about the surgery.

 

I remember asking every mom I knew that had to go through what I was going through about their experience. Every single mom that I talked to would tell me that they only spent 6 days in the hospital, 5 days, 1 week. I thought to myself that’s crazy! I will plan on a 2 week stay. We spent a little over 72 hours in the hospital!! Your baby is going to surprise you with how quickly they recover.

 

Finally,  PRAY, PRAY, PRAY!!!

 

Someone else has control of the situation unfortunately, as mom’s we are used to being that person so it’s extremely hard for us to accept that, which makes us worry even more. Your baby was sent to you for a reason, for myself I can think of a million reasons that BerkLee was sent to me. One of the biggest reasons, was to teach me patience, to show me that my need to be in control is simply overbearing and out of control.

 

As I handed my sweet girl over to the surgeon at the doors of her operating room I remember telling Berk, that I loved her more than she will ever understand and I told her to come back to me. As he walked away with my baby in his arms I started to pray, begging God to make sure she came back to me. It was at that moment that I realized this was all out of my hands, all I could do was pray and wait.

 

All my stress, my anxiety, my sleepless nights didn’t have to be. I was gifted this angel, and she had already taught me so much and shown me how to love fearlessly, how to live like every minute counts, and how to fight like tomorrow is not a given.

 

I felt a wave of emotion come over me and I cried, tears of joy, tears of happiness, and I felt so thankful for the baby I was given. At that moment I grabbed a hold of the belief that BerkLee was in God’s hands and I held on tight to the belief that she was going to be just fine, she was in the best hands. I let go of the worry and I let God take the worry. All I had now was to fearlessly believe that He would do what was best for her, what was best for me.

 

Fast forward and I now have a 15 month old that can tear apart my entire house in 10 seconds or less and has enough personality for 6 lifetimes!!

 

 

 

Jessica is mama to a 15 month old BerkLee, a copper top who rocks an extra chromosome, something her mama absolutely loves about her. BerkLee’s playmates include Moki and Meeka, the family’s English Mastiffs (who incidentally outweigh mama by 90 lbs!)  When not rocking matching “lady Mohawks” with Berk, Jessica can be found camping, swimming, playing softball and helping others.  Jessica chronicles the hilarious expressions of baby Berk on instagram where you can find her @berks.life.with_3.21

 

Are you going crazy trying to figure out how to organize all the medical information you need as a special needs mama?  Read this post: Organizing a Medical Binder and then sign up for my email list to get a freebie- A set of downloadable printables to start your own binder. (when you sign up for the email list you will receive a welcome letter with a link that says “Freebie” this is what you click to download all your free copies.