5/22/2019 1 Comment
A Matter of the Heart
A couple weeks ago, I had the pleasure of speaking at a lactation support group. In a room filled with a dozen or so mothers and their babies, I gave a talk on mindfulness. The irony of this topic in this setting (picture babies everywhere--sleeping, nursing, rolling around on blankets, crying, gurgling) was not lost on me. The room was loud and full of distractions. Most of the women were first time mothers, and many of them were tired and overwhelmed. Still, I got through the information and passed on some strategies that I hope they can use at home. We even basked in a few moments of quiet. It was lovely.
I did not love the infant phase. I loved my infants, of course, but I struggled. When I had just one infant, I remember when she would go down for a nap, I knew my time was limited (20, maybe 30 minutes) and I would be paralyzed realizing that I desperately needed to shower, eat, sleep, clean, exercise, and call people, but that I probably didn’t have time to do any of it. When I had my 2 year old and 2nd infant, I was a full time stay at home mom. I remember telling my husband that I was stuck in a full time job that I hated. As my daughters got older and more independent, I started to enjoy motherhood more consistently. Now, with two girls who just finished 2nd and 4th grade, I feel like I am in my element. This is the sweet spot. I do not miss the baby phase, but I know I will miss the school-age phase.
So I was completely caught off guard when I walked into that room full of moms and babies and almost immediately got emotional. I was taken back to those days when my oldest was tiny and my body was not mine. I remember the anxiety...if the baby was making weird noises when sleeping, I worried about every gurgle and hiccup. But when she would go silent...well, that was even more terrifying.
And perhaps I had more reason to be anxious than some. When Aleida was born, she came a full month early. To say we weren’t quite prepared is an understatement, but we were relieved when she came out small but fully cooked. She didn’t need time in the ICU and she was absolutely precious. We were basking in her loveliness on day 2 in the hospital, when the pediatrician came in to check my perfect daughter. She told me she heard a heart murmur, but I didn't despair. "Lots of babies are born with murmurs that go away in a day or so, so I'll be back to check her tomorrow," she'd said.
My husband, Dave, was a resident in Emergency Medicine at the time. He listened to her heart, heard the murmur, but didn't seem worked up, so I calmly waited for the next check up.
On day 3, the pediatrician still heard the murmur, so she ordered an echocardiogram. The technician came in with a big machine and ran a wand over my baby as she lay sleeping on my chest. Dave was watching intently; he had some training in these mysterious images, after all. I just watched my daughter and occasionally glanced at the screen or my husband to see if I could make sense of anything. I couldn't.
The technician, knowing Dave was a doctor, said, "I can't really tell you what I'm seeing. You'll have to wait until the doc looks at the images," but he proceeded to point out major landmarks anyway. Words were tossed around between the tech and my husband that made little sense to me, but piqued just enough worry to raise my own heart rate. When the procedure was over, I asked Dave what he knew.
"Nothing really," he said. "It could be *insert gibberish words* and it could not be. We'll have to wait and see what the doctor says." I know now, he was protecting me. He knew that our little baby had a hole in her heart.
Those gibberish words were actually "tetralogy of Fallot." For a while, I thought they were saying "tetralogy of flow" which made sense since we're talking about the heart. But no, Fallot is the guy who defined the condition. Tetralogy refers to 4 key anatomical features of the condition, but my understanding is that only 2 of them matter. 1. A hole between the left and right ventricles. 2. A narrowing of the pulmonary valve. In a nutshell, oxygenated blood can mix with deoxygenated blood, meaning that not enough oxygen gets taken throughout the system. In an even smaller nutshell, this means babies can turn blue.
Our baby was not blue. She wasn't even purplish. She was pink and rosy and beautiful. The doctors called her "mildly affected." She had the same oxygen levels in her blood as any other baby. You looked at her and you had no idea that she had a congenital heart defect.
But she needed surgery. Open heart surgery. Some babies with this condition come out blue and have to rush into the operating room. We were "lucky" because we had time to let her grow. We started by going to the cardiologist every 3 weeks to check her stats. We watched for "blue spells." We waited and let get strong. We enjoyed her and forgot that there was anything wrong. Truly, as far as heart conditions go, this was a best-case scenario. She was otherwise perfectly healthy. We discovered the condition via the murmur- not a "blue spell" (can you imagine how scary THAT would be if you weren't expecting it?). We were a family with the means and resources and attitude necessary to get her the required care. We had good health insurance. Once she had the surgery, she'd be fine. Other than regular follow up appointments with the cardiologist throughout life, she’d have no limitation to her activities. Shaun White- the Olympic snowboarder- had this condition. So Aleida can be an Olympian if she wants to.
Still...open-heart surgery? On a baby? My baby. It took awhile for me to come to terms with the idea. But I had to. And I had to accept a few truths to get there. First, there is no known cause of this. It is congenital, but not hereditary. Secondly, this didn't define her. She was beautiful and healthy. Her heart needed fixing, but until then, she's just a normal (well...exceptionally adorable and smart and perfect) baby.
Of course I cried when I realized what had to happen to fix my baby's heart. I remember saying to Dave, "Now that I've met her, I wouldn't exchange her for a baby without this problem. I mean, she's pretty perfect, except for this hole in her heart."
I remember his exact response: “She’s pretty perfect with it.”
* * * * * *
Obviously, there’s a lot more to this story. Aleida had surgery at 3.5 months. The doctor, a British doc who specialized in pediatric cardiac surgery, assured us that he did this exact procedure on walnut-sized hearts on a daily basis. The scariest day of my life was just another day at the office for him.
And honestly, now that my heart-defect baby is a tall-for-her-age 10 year old who has a black belt and can fit into my shoes, it all seems like a long-gone bad dream, another life, almost like something that happened to somebody else.
Every once in a while, though, like when I’m surrounded by tired mothers and adorable babies, I am reminded of that time in my life. I’m taken back to the uncertainty, the fear and the agony of handing my 3 month old over to the nurse who would prep her for open-heart surgery. I’m taken back to that place and I am overcome with emotion and gratitude for my healthy, imaginative, sensitive, active child who was once a baby with a faulty heart.
Why tell this story? I’m telling you this story because it is a good reminder that all things pass. In that room full of moms, some were overwhelmed, many exhausted, but all of them clearly loving their babies despite the challenges. They reflected an earlier version of me, and the passage of time hit me harder than expected.
Remember this: The story line you are living right now, whether good or bad, will eventually be a closed chapter in your book of life. So if it’s good, enjoy it. Be grateful. Be present and savor it. If it’s not so good, honor that. Feel the feels and look for support and positivity where you can find it. Be present and know that all the ups and downs are a normal part of the human experience. No matter what is going on in your life right now, you will eventually look back as a wiser version of yourself.
11/1/2019 11:03:27 am
great content! I found your blog on google and loved reading it greatly. It is a great post indeed. Much obliged to you and good. keep it up..
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