My mom friends are shocked when they see my daughter climbing the playground, wearing a holter monitor. They expect us to coddle her and treat her as super-fragile, because of her heart condition.
But, we let her play hard and get some bruises. We know what life-or-death looks like and it isn’t this.
- – -
My fiancé and I hadn’t been together very long when we found out I was pregnant. I was between jobs and scraping by financially. I didn’t have one dollar of OB/Gyn coverage with my insurance plan.
Between my changing health insurance and a hospital mix-up, I only ended up having one ultrasound, my entire pregnancy. The tech spent two hours taking images, but couldn’t get clear pictures of my daughter’s heart.
After an insane delivery—complete with Pitocin, heart rate decelerations, and a bunch of other madness—my precious girl, Josephine was born.
That’s when the nightmare started.
Josephine didn’t cry right away and she gasped for air. They let me nurse her and hold her skin-to-skin, for an hour, anyway. That may be what saved breastfeeding for us…
She was still panting. The hospital diagnosed her with pneumonia, and kept her in the nursery. After a few days of antibiotics, though, her lungs still weren’t clear. I’m a nurse and this didn’t feel like pneumonia.
Then we got the call at 3AM.
Josephine’s heart was in a supraventricular tachycardia (SVT), beating at 250 beats per minute.
A transport team moved her to Chicago Children’s Hospital, which had a whole wing of neonatal cardiac specialists.
The testing was awful.
But we got answers. They found a coarctation of her aorta—a crimp in the largest artery of her body. Left alone, her organs eventually would shut down.
They also let us know that her Aortic valve only had two flaps instead of the usual three. Josephine was too small for a valve replacement, but they scheduled surgery to address her aortic coarctation.
By amazing luck, my high school friend, Alexa, worked as a pediatric neurologist at Children’s. Knowing a doctor there alleviated so much of our anxiety. Alexa visited us almost every day and swore our surgeon was great.
I was awe-struck by the team that did Josephine’s surgery—they communicated seamlessly. I’m so grateful for them.
Josephine wore an Oxygen mask for a week, but she was fine.
As for me, I’d expected that as a new mom, I’d be home nursing all the time and trying to sleep. It was a real shock, as my dreams and illusions shattered.
I had no control over my baby and our situation. I had to just trust the medical team.
I pumped my heart out though. Getting breast milk was one thing I could control.
We stayed at the Ronald McDonald House attached to the hospital, the whole time. They let us stay for free, and helped us to be the best parents possible through our really hard situation.
Josephine was hospitalized forever, and I just wanted to go home and be a family. The waiting was impossible.
They sent us home with a stethoscope and gave us an infant CPR refresher. That was scary– they gave us CPR because there was a very real chance that we would need it.
My six weeks of maternity leave was basically over, when we got home.
The Chicago daycares were a cruel joke. They were either sketchy or $2500/month with a long wait list.
We found one an hour away from home and about 30 minutes past my work. So, I commuted three hours a day, on the days I worked.
It was killing me.
I juggled Josephine’s appointments, the steady flow of medical bills, and around-the-clock meds and heart checks while trying to be a mom and a good employee. It was just too much.
I was devastated when I realized I couldn’t do it all.
I bawled my eyes out after asking my employer for a four-day work week. I was letting them down. But, being a good mom was more important.
The medical drama continued. Josephine had another procedure, with a balloon catheter to stretch her narrow Aorta. It went well.
Meanwhile, my upstairs neighbor had become a loud, crazy, strung-out drug addict. Her eviction was messy and we overheard her making threatening jokes about Josephine.
We almost moved, but our new apartment had a break-in and a domestic violence incident, right before our move-in.
We decided to get out of dodge. I accepted a job offer in North Carolina and resigned from my job.
Then we found out that Josephine had started to grow a subaortic membrane in her heart, to try to compensate for the missing flap in her aortic valve.
She needed open heart surgery.
I was nervous. But, thankfully, our doctors had prepared us, long ago, for this.
I called my new boss in North Carolina and pushed my start date back. Nice first impression…
We didn’t have enough money to pay for the surgery and our living expenses over Josephine’s six-week recovery. But, I was horrified by the idea of going back my old job right after Josephine’s surgery, leaving her when she needed me. Again.
We started a GoFundMe campaign.
I was blown away by the outpouring of support. It got us through her surgery, and I’m forever grateful.
Josephine’s open heart surgery went beautifully.
She healed quickly and we made it to North Carolina.
Today, Josephine is thriving and healthy. She’ll have a lifetime of extra appointments and care, but she’s stable and we’re safe.
My fiancé just found a job, and he’s been incredibly helpful and supportive through everything.
There’s a lot of media pressure telling us what “good parenting” is, glamorizing and idealizing parenting. I’ve learned to be real with myself and not to forego my sanity for those illusions.
Also, we have this image of ourselves as super-humans who can do everything, but sometimes we have to cut back to best care for our families. I wish I’d cut myself more slack with my decision to cut back my work hours. My employer did fine without me. But, my daughter needed me.
For parents beginning their journey with a sick child, find a health care provider you trust. Be sure you really understand your health insurance. And, when those monster bills come in, just keep track of them and pay them as you can.
When things get really hard, just hold your baby. When we were in the hospital, I hit a point where I had to visualize Josephine dying. I had to think about it, so I wasn’t in denial. Just hold your baby…
Last, don’t be afraid of your child’s health condition. Don’t let it stop you from doing things you and your child love. Don’t let it get in the way of loving your child.
Everyone wishes for a healthy child. And don’t get me wrong, the last 18 months have been incredibly hard. But, you know what? If I had a choice, I’d do it all again.
At the end of the day, I mostly feel grateful. Grateful for the incredible team who helped us. Grateful for Ronald McDonald house. Grateful for Alexa. Grateful for my beautiful daughter who plays hard like the rest of the kids.
Other parents may be shocked that Josephine plays hard, but she’s strong and independent—she’s a survivor. I would do it all again for her.
In fact, I feel like having her reaffirms all of my life decisions. If kids have to be born with heart conditions, I’m glad I got one.
Maybe I became a nurse, not so I could be a super-employee, but so I could care for Josephine. And so we could survive this.
She may not be “perfect”, but she is the perfect child for me. I love you, Josephine.
Thank you to Jordan Reed for sharing their incredible story. Jordan and her family are still underwater financially, between the move and Josephine’s care—if you want to help them, here’s a link to their GoFundMe. If you’re in a similar situation, caring for a sick child and you want to talk to her, she’s offered that you can PM her via Facebook.
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