Erica Thayer   |   March 27, 2018

Your Heart Baby is Home from the Hospital…Now what?

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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 once you are home from the hospital with your heart baby:

  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. 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 Kangaroo 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? 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. Pediatric Congenital Heart Association also has local chapters across the nation. Here in middle Tennessee, PCHA-TN holds several community events every year to give parents (and children) an opportunity to connect with one another. Every June families gather together to participate in the Nashville Congenital Heart Walk. This is part of a series of Walks that occur across the nation to raise money for CHD research – but it’s completely free to register and participate. And you can follow Project Heart on our Facebook page and participate in our events throughout the year!

  3. Is my baby’s development on track? 

    Extra time in the hospital can often lead to some delay 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 a little time to catch up. A great resource is the Tennessee Early Intervention System (TEIS). This is a free program for anyone in the state of Tennessee with a child age birth to 3. They will do evaluations for Speech/PT/OT/feeding, etc. and your child can receive therapy services for free if they need them. 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.

  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 8 weeks post op. I had put his name on the waiting list for the local daycare just down the street from our house shortly after finding out I was pregnant. Many of our neighbors sent their kids there and everyone loved it but it had a long waiting list. Calvin had secured one of the coveted spots and two weeks before I went back to work I set up an appointment with the daycare director to talk about Calvin. They knew he had a heart condition and were ok with that but we were still working on oral feeds. He was taking only about 40-50% of his bottles by mouth and the rest had to be put down his NG tube. The meeting with the director went well and they were seemingly willing to help meet Calvin’s needs as we worked towards eating by mouth. The next week I took Calvin to his class for 3 hours each morning and stayed with him to train his teacher on using his NG tube and make sure they were comfortable with him. Everything went great, or so I thought. At the end of the week I received a voicemail from the director after hours saying that they could not accept Calvin at the school because his needs would cause the other children in his class to not receive enough attention. I was shocked. And angry to be perfectly honest. How could they reject my baby?? Now here I was starting back to work in 1 week with no care for my child. I called 10 daycare centers the next day – only 1 had an immediate opening. It was a corporate daycare with centers all over the country. Not exactly what I had in mind, but I was desperate and explained the situation. Surprisingly, they were more than willing to accommodate Calvin and his NG tube. It ended up being a great experience. The teacher was kind and attentive. She called me any time she had questions and always noted how much Calvin at by mouth and by tube down to the milliliter. The right place makes all the difference! He rocked it at daycare and now, nearly 3 years later, he looks forward to going to school with such joy.

  5. How do I deal with the anxiety?

    This is a tough one. When you have a child with complex medical condition the whole family is affected. PTSD is a reality in some 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. Don’t be afraid to mention your anxiety to your doctor if you feel like it is starting to negatively affect your life.

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!

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