The Heart Badge of Honor

By Taryn Lagonigro

“We are detecting a hole in the heart. It’s an AV Canal defect, so it’s not the type of hole that would close. The baby will require open heart surgery when she’s less than 6 months old.”

This, which came when I was 16 weeks pregnant, felt like a bigger gut punch than the Down syndrome diagnosis. It felt like the “really?!” on top of all the feelings I had worked through in the four weeks since her diagnosis.

The first couple months of Rhea's life, before she had her surgery, almost feel like a blur. But to the mama's who have cared for a baby with a heart defect, I'm sure you know the drill. Pumping around the clock, fortifying bottles, hanging on every ounce of weight gain and balancing medications are just some of the parts of those early days. In some ways, I couldn't wait for the surgery date, because it meant we could get through it, put it behind us and move on. It felt like the rest of Rhea's life would begin that day.

But now, on the other side one year later, I can say that we didn’t just get through it. We earned our badge and we will wear it proudly. Open Heart Surgery isn’t something you put behind you and move on from. It’s something you keep with you, reminding you of just how strong a person can be…both this amazing little human, but also us as parents. And my Rhea…I already knew she was an amazing little girl, but I am in complete and utter awe of what she has accomplished. Each time I think of the fight she had in her, it brings fresh tears to my eyes…tears of joy and tears of pride.

I never thought I would be a heart mama, but it has added a level to motherhood that brought more love, joy and celebration than I could have ever imagined.

While it was still fresh in my mind last year, I wrote down my thoughts on what helped me prepare for this moment, to help the mammas I know who will step into these shoes next.

Before

My biggest piece of advice, inspired by the advice of another mamma, is to prepare now so that you can have total faith later. Once you hand your baby off for surgery, you will know you did everything you could to safely get them to that point and now it’s out of your hands. As someone who is guilty of needing to control everything, this really helped me to have the perspective that I DID control everything I possibly could. It will help you find more peace in that moment. Here’s how I got there:

Build your cardiac team – do your research and make sure you pick a team that you wholeheartedly trust. Make sure you feel good about your cardiologist – that doesn’t have to mean the first person you meet if it doesn’t feel right. If you have a choice of hospitals, research your decision and if you have a choice of surgeons, research that too! I think many people think they have to take what is assigned to them, but if something or someone doesn’t feel right, figure out how to fix that.

Talk to other heart mammas – find people who have been on the other side of OHS and talk to them. Part of me struggled with this a bit because I was afraid of what I might hear, but I am overwhelmingly glad that I listened. It helped me to see the light at the end of the tunnel.

Mentally prepare for the hard parts – for me, the two things I knew for sure would be the hardest moments were handing her off for surgery and then seeing her post-op connected to all the tubes and wires. Anything else was an unknown, but I KNEW those two moments would, with certainty, both happen and be hard. In regards to handing her off, there was nothing I could do to prepare other than visualizing that moment. I let myself feel how hard that would be and I also didn’t try to talk myself out of it. I told myself that whatever reaction I had in that moment would be OK. And yes, it was hard, but we got through it. As far as seeing her post-op, when you go in for your pre-op testing and meetings, ask about it. Ask them to explain the tubes and wires and what to expect. This was HUGE for me. I knew what would be there, and why it would be there, so quite honestly, that moment was less scary that I had anticipated.

Let people help – your friends and family are likely going to feel helpless watching you go through this. Accept their help. If you’re unsure of how they can help, a great idea is to suggest gift cards to Uber Eats or Doordash. You can use these while you’re at the hospital for coffee, meals or snacks, or you can use them once you get home.

Pack smartly – outside of the obvious things (clothes, toiletries, chargers), here is a list of things that really helped during our stay:

• Blanket for you – hospital blankets are scratchy and thin. Bring a throw blanket from home so you’re much more comfortable for sleeping. If you can fit your own pillow, great.

• Reusable water bottle – the floor should have a water station and you want to make sure you stay hydrated!

• Baby bottles – bring two of your own baby bottles, so you don’t have to worry about baby not taking the hospital nipples.

• Dish soap – for washing yours and baby’s bottles (and pump if you’re nursing).

• Pictures from home – remind yourself (and the doctors!) what your baby looked like without the wires

• Snacks – sometimes its hard to run out, so throw some dry snacks in your bag for in between meals

• A LOT of baby blankets – Rhea was most comfortable when I used her own blankets. The smell and softness will be familiar to them, in a room of lots of unfamiliar things!

• Flip flops and slippers – chances are you will have to shower in a shared restroom, so flip flops were a must for me! And make sure you have slippers for the other 90% of the time when you want to be comfortable.

• Books/kindle/paperwork – it will be busy, but there’s a good chance baby will do a lot of sleeping, especially the first couple of days. Boredom, for me, leads to anxiety, so I made sure I had plenty to do.

During

Even the simplest of surgeries mean baby will be away from you for quite a while in surgery. For those of us going through this during the COVID-19 pandemic, that may also mean sitting alone in a waiting room if the hospital has a one parent rule. Here’s what helped me pass those hours:

Rally your team – let your friends and family know the hours of the surgery. Let them help distract you. Talk to people…ask your funny friend to send you memes…ask your most positive friend to give you a pep talk! Everyone will be happy to help, they just might not know how.

Get your distractions together – books, meditations, television, journals. Have many things because you won’t know until you’re there what might work. I was too anxious to focus on a book, but some of the other things I had with me did help pass the time.

Create positivity – find some way to make this time as positive and as peaceful as possible. A week before surgery, I asked all of our friends and family to wear yellow to support our “Rhea sunshine.” I felt a little silly asking that, but I wanted to rally all of this positive energy at once, in addition to all the prayers I knew everyone was praying. Some of them told other people and suddenly I was sent or tagged in more than 70 pictures of people and families wearing yellow for my girl. It made me smile every single time I got one and was a HUGE distraction for what was going on in the OR. That thing I felt silly asking for was I think just what everyone needed to feel like they could do something for us in that moment…it’s what I would jump to do if anyone I knew was going through something. So go ahead – create a mini movement and bring some joy into an otherwise super stressful moment.

After

This part is likely so varied for people, so it’s probably the hardest part to prepare for. These are some of my big takeaways:

Understand, ask questions and advocate – you are now a part of your baby’s medical team and don’t sell yourself short. Trust the advice of the medical professionals of course, but if a decision hangs in the balance, don’t be afraid to input your opinion. You know your baby best. Ask questions so that you can understand the who, what, where, when, why of what’s going on.

Know the goals – each day, take time to understand both the day’s plan and also what the next milestones are…especially ones that pertain to feeding and other things that you can help work on.

Be patient and fluid – this is an important one. The first few days after surgery can feel very up and down. One moment you’re taking two steps forward and the next it’s one step back. Try not to get all your hopes up on each milestone because sometimes they shift. Be mindful that each change can be a lot for the baby, so slow and steady might be the best way to go. Trust the process.

Take care of yourself – I’m definitely a “you can’t pour from an empty cup” kinda gal, and your cup gets empty real quick when you’re in the hospital 24x7. Once Rhea was settled each morning, I took a quick walk to the Starbucks two blocks down and grabbed a coffee. The whole trip took me 10 minutes, but the fresh air (and coffee!) did wonders for me. The nurses are there and they were always happy to see me get out and take a quick moment to myself.

Make the best of it – befriend your nurses and talk with other families. Its easy to feel isolated, so try to find some little releases where possible.

Going home is a transition – something I didn’t know! Hospital stays completely mess up a baby’s sleeping pattern! Sleeping, eating and digestion can be a little off as baby recovers. Obviously discuss any changes with your doctor, but I do think its important to know that things can take a little while to get back to normal.

I’ve watched other people go through things like this and thought “I don’t know how they did it.” But when it’s your own child, you just find the strength within you. If you have to go through this, just know that you can handle it. You’ve got this, mama.

You’ve always had the power my dear, you just had to learn it for yourself.

-The Wizard of Oz