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I am a Heart Mom: What it's Like to be the Parent of a Baby with Heart Anomaly

“I believe your baby has a heart defect” those are the words no parent is prepared to hear. When we heard those words we thought our world was crashing down, however it was quite the opposite.

On March 16th, 2021, we got that news. We had no idea what was in store for our little family but that news was going to change our life and the way we look at the world for the better. Leighton was our first baby and we were terrified. We didn’t know exactly what to expect. The doctors asked if we wanted to “continue the pregnancy?” That was our baby; God handpicked her for us and us for her. It never once crossed our mind not to continue in this journey.

We didn’t know anything about her heart defect or what our future was going to hold. All we knew was that our baby would need multiple open heart surgeries in her lifetime. The first of which being at only 4 days old. This is her story:

We were induced at midnight at 39 weeks, I only got to hold her for five minutes before she was whisked away by her incredible team of nurses and doctors to the NICU. This was all during the COVID-19 pandemic which unfortunately meant we could only have one parent in the NICU at a time with our baby. My sweet husband spent just about every minute of every day there with her while I stayed in our hospital room recovering. We couldn’t hold her at first which just wrecked me especially as a new mom. Now when we tell you we have never met a stronger person than our daughter we mean it wholeheartedly.

She went in for her surgery July 5th, 2021 at 7:00 am. Did we have faith? Yes. Did we have an entire army praying for her? Yes. Did we have the best team of surgeons and nurses? Yes. Did that make it any easier? No. It was a 7 hour surgery, which honestly felt like an eternity. I have never been so nervous every time I felt that pager buzz or our phone ring. It would send chills, worries, and fears.

Once we got that call that her surgery was completed. We were told that unfortunately she had to be put on an ECMO machine which was not ideal but it needed to be done. This single machine did all the work of her tiny heart and lungs so that her little body could take a much needed rest.

Another big heart break was that they weren’t able to close her chest due to all of her swelling from fluids they had to give during her surgery which sadly meant we could not hold her for two weeks while she was lay with her chest open in a hospital bed. Those two weeks truly felt like months.

We thought we were prepared for this. And we were, however we were only prepared for the surgery. The one thing we weren’t prepared for was the recovery...

The two steps forward one step back, all the beeps, all the machines, all the madness of the PICU. The team of 9 doctors, nurses, and specialists who sat outside her hospital room for a week straight monitoring those beeps, those machines, and that madness. Having to navigate an entire sea of people just to get to our child’s hospital bed and sit next to her for hours on end, just staring, and praying. Truly puts life into perspective.

When you aren’t able to hold your baby for weeks you appreciate that little hand holding your finger and seeing those little closed eyes flutter.

When you see them on a ventilator for weeks and they can not cry (the silent cry is the worst thing in the world, no one should have to go through that) once you do hear them cry for the first time it is truly music to your ears. We vowed right then and there to never take that cry for granted.

When those pounds of fluid on her little body from surgery are still there after weeks and her eyes are still closed from the swelling, her ears still folded over from the swelling and her entire little body just swollen. Then you hear she needs to be put on dialysis and they start talking about a possible kidney transplant due to a kidney injury as if this little sweet soul hadn’t been through enough. You appreciate seeing all of that melt away, with the help of that one machine, one amazing woman running that machine and many answered prayers.

When you can’t even change a diaper because there are too many lines and cords in the way, you appreciate every single diaper you get to change after that.

When your baby has to wean off heavy narcotics and truly having withdrawal, it puts the biggest hole in your stomach as a parent and just a human being.

We prayed more than we have ever prayed in the two months we were in the hospital. We cried more than we have ever cried and we leaned on each other as husband and wife more than we ever have before. We needed each other, we needed her, and we needed all of those prayers.

We had the most incredible support from our family, our friends, and our friend's friends. Even our nurses were incredibly helpful during this time. They were someone to talk to, someone to hold your hand, and someone to hug. It truly takes a special person to be a PICU worker. We owe them quite literally our sweet little daughters life.

Then finally after so, so, soooo many prayers, her kidneys decided one night to just start working! Praise the Lord!! She started peeing all on her own. Her chest got closer, and closer to being closed; and her fluids kept going down.

They were finally able to put a wound-vac on which meant after that lengthy two weeks we were finally able to hold our sweet little baby!!!

Did that make it easier? Unfortunately, no. This just meant one giant hurdle was over and we needed to move on to the next one.

This was the hardest, weening her off fentanyl and other hard narcotics. Watching her go through those withdrawals, watching her puke, and watching her struggle to move forward.

All this had to be done before we could even talk about going to the pediatric floor. Which then would mean we could start thinking and talking about going home..

Then one day it happened! I still remember the day we got to move to that floor. Our nurse came and said, “You’re going to the Peds floor”. To say I had so many emotions would be an understatement. I was so happy because that meant we were one step closer to coming home. However, that meant we were going to be leaving our team that had become family. Our nurses, our doctors, all of our specialists that had known and cared for our daughter since the very moment she was born. It meant we were going to have to do everything on our own. We were truly going to be parents now.

We loaded up that little red wagon with all of our things from our home for the last month and a half and we moved to the Peds floor. Nine days later we got to come home!! This little heart warrior was ready to go and prayers were answered!

She came home on oxygen, a feeding tube, shots for two blood clots in her neck, and multiple medications.

I look back and I am so thankful for what we went through. It might sound bizarre to some but my husband and I grew so much closer in those two months. We watched our little fighter fight for us and us fight for her. She overcame incredible obstacles that most adults do not even go through. We grew closer to God, we grew closer to our family and our friends. We made new forever friends and new “family”. We have the best team at Doernbechers Children’s Hospital and will forever feel indebted to them. Hug your loved ones extra tight and always remember to fight the good fight for our kiddos. When they don’t have their own voice, we are their only advocates.

Psalms 139 : 13-14


One Heart Mom

Click here to read more of our blogs written by real moms like you. Real moms that have praised God through tough journeys with their children in the NICU and PICU. Real moms that have experienced the loss of a baby and still kept the faith. This blog was written by Deshea Smyth in Junction City, Oregon. Deshea has been married to her husband Logan for four years. She is a stay at home mom to heart warrior, Leighton and, also, runs Leighton's Journey on Instagram.

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