It’s your first day home from the hospital…now what?

You made it. Your sweet, precious bundle survived open-heart surgery and you’re home from the hospital. Home. The place you’ve dreamed of being for days, weeks, months (years?). You’ve settled into your new “normal” and though it may not feel like it, you ARE super mom. You’re pushing meds like a seasoned pro, you’ve mastered tube feedings down to an art form, you can check O2 stats in your sleep and troubleshoot the machine like it’s your JOB –ok, maybe it’s not going quite that well. Sure, you’re mopping up spit up from nearly every one of those tube feedings and you can’t remember the last time you showered, but you’re making it.

Now that you’re home from the hospital many questions are sure to surface. Are his lips bluer than normal? Has she been sleeping for too long? Shouldn’t he be crawling by now? These are important questions! Here’s 5 top questions that may arise.

5 Questions you may have:

1. Am I calling the cardiologist, pediatrician, on-call physician, etc. too much?

No. Just flat no. You know your child better than anyone and if you are concerned take it seriously. The fabled “momma instincts” are real. I’ve never been a really insightful person by way of instincts. I was 100% convinced my son was a girl before his 20 week ultrasound. If my husband misses a phone call my gut immediately tells me he has probably suffered some horrible tragedy at work. The list goes on. BUT, if my baby so much as coughs funny or breathes a little labored, I’m on it.

It took me a little while to really take myself seriously in this department. I would call cardiology praying they wouldn’t think I’d lost my mind when reporting odd symptoms. Every single time they either reassured me or requested we come to the ER. We were probably sent to the ER about 10 times between my son’s Norwood and his Glenn surgeries. Each time we were kept several nights as they evaluated and treated the problem. After a while I learned it was always the right choice to call.

2. Is my baby’s development on track?

Extra time in the hospital can often lead to delays in reaching developmental milestones (with good reason!) and that’s ok. This one took me a little while to relax about. How is my child going going to get into an Ivy League school and become a world renown Cardiologist if he’s DELAYED?! After major interventions, like open-heart surgery, it’s ok to take some time to catch up once you are home from the hospital. A great resource is your state’s early intervention program. This is a free program for anyone with a child age birth to 2 or 3, depending on your state’s laws.

Baby boy home from the hospital laying on a playmat.
Calvin practicing his head lift skills during the 8 seconds of tummy time he would tolerate 😉

In the state of Tennessee where I am, this program is called the Tennessee Early Intervention System or TEIS. Early intervention will do evaluations for Speech/PT/OT/feeding, etc. and your child can receive therapy services for free if they need them. They will even come to your house. Wonderful service! If you have any concerns about your child’s development, tell your pediatrician and keep in mind you can make a self-referral to TEIS online.

3. Where can I meet other heart parents?

This is so important! Some days you may feel like no one else understands why you can’t take your baby out of the house right now, why everyone needs to take their shoes off and wash their hands, and why you literally ran from that old lady in the grocery store who sneezed funny and then made eye contact with your baby. Other heart parents get it. They can help you find the right little backpack to keep your feeding pump in for outings, they won’t bring their kids within a mile of your neighborhood if they had a low-grade fever the day before yesterday, and many may pray for you for weeks on end whether they know you well or not.

So, where can you plug in once you are home from the hospital? Social media is a great place to start these days. Many cities have their own heart parent community pages. I’ve benefited greatly from the Nashville Area Heart Parents group – it’s a great resource for parents all across the state of Tennessee or for anyone receiving care at Vanderbilt. Heart Moms, CHD Community, and the new Heart Savvy Momma Community page are all great places to ask questions and connect with others. You can also follow Project Heart and participate in their events throughout the year.

4. Who can care for my child if I need to go back to work?

Before our son’s diagnosis I had no doubts about taking 10 weeks off for maternity leave and then returning to work 4 days per week while my son went to daycare. I had a blissfully perfect plan in my head (it also included losing all the baby weight before going back to work…but let’s just say that didn’t exactly go as planned either!). 89 days in the hospital and two surgeries later, I was terrified to go back to work. No one knew him like I did. How could I ever trust someone else to take care of him?

Despite his complex diagnosis, his cardiologist gave us the “all clear” for daycare just 6 weeks post-op. Not long after, he started at a great program near my office. We live 30 minutes away from where I work so it was definitely better to have him in a school closer to my office rather than close to our house. I was easily able to run over to the school if they had questions or visit him on my lunch break if I wanted to.

Baby boy in car seat going to school 7 weeks after coming home from the hospital.
Calvin all strapped in and ready to go to his first day of school! He’s 7 months old and 7 weeks post-Glenn.

Let others help you

I think sometimes moms feel stuck in this area – you obviously want the very best for your child, but may need (or even want – that’s ok too!) to go back to work. I want to encourage you that it’s ok to let someone else care for your child. Get the clearance from you doctor, find someone you trust, and jump in. For us, it was great for Calvin’s development and for my mental health. If you are a stay at home mom that is a great choice too. But even you need a break from time to time. Find someone who you can train to help you. It’s ok to leave your child with a friend for an hour to go to the doctor by yourself. It’s ok to have a babysitter come occasionally so you can go on a date with your husband. You need a break too! Don’t try to do it all by yourself.

5. How do I deal with the stress?

This is a tough one. When you have a child with complex medical condition the whole family is affected. PTSD is a reality in many cases – for both the child and the parents. Find someone to share your thoughts with openly. This may be your spouse, a parent, friend, or even a counselor or therapist. Fear, anxiety, exhaustion, and depression are all 100% warranted in the world of CHD, but don’t let it rule your life once you are home from the hospital.

Mention your symptoms to your doctor if you feel like it is starting to negatively affect you. Some degree of sadness and stress is normal but don’t keep it all bottled up inside. Depression symptoms can often be brushed aside as just the exhaustion of parenthood, or worse, something that you shouldn’t talk about and just “get happy.”

So, there’s 5 thoughts you may be having now that you are home from the hospital with your heart baby. You are not alone! And, more importantly, you’re NOT crazy! Navigating life at home with a new baby can be challenging, bringing home a child with complex health needs is a wild ride.

What thoughts did you have when first home from the hospital? Let us know in the comments!