In hindsight, we really didn't spend a lot of time in the NICU with Elijah. It felt like forever, when it was actually 21 days. Each hour, minute, and day in the NICU feels as if weeks and months have gone by. The sweet relief of discharge day approached at last and we nearly ran out the hospital doors with Elijah in tow. I thought we would never have to see the Children's Hospital again. I loved every single one of those doctors and nurses and I am eternally grateful for them saving my son's life...but I didn't want to see that hospital ever again. In my mind, the entire nightmare was over and once we got home with our little boy, our lives would return to normal.
Imagine my surprise when we were called back.
"Mrs. Mertes, we have to do a follow-up appointment for your son. Then you can determine if you want to participate in our CDH Clinics".
I had no idea what a CDH clinic was, but if it meant returning to that hospital, I was extremely against it. I thought.
During the initial follow-up, everything went well and it was only a few hours long. It was tolerable. Then we were asked if we want to proceed with CDH clinics. "Sure," I muttered, not exactly knowing what I was signing us up for. I didn't bother asking because I think - to a small extent - I didn't want to know what I was signing us up for. I just knew that this cheerful nurse was asking if we wanted to make sure that Elijah was okay for the next few years of his life, and how could I say no to that? Even if it meant returning to the hospital monthly, every 3 months, every 6 months...
That was back in 2015, By now he has had several CDH clinics. He goes to the children's hospital for an entire day where he has x-rays, ultrasounds, and then we discuss the results with a parade of doctors. He has had an ECHO, an upper GI, and a Lung Perfusion Scan. He is scheduled to have a sleep study and a Spirometry breathing test in the near future. His doctors include a neurologist, cardiologist, pulmonologist, pediatric surgeon, and nutritionist.
Not everyone is given the opportunity to make sure that their little one maintains health. All of these tests help to ensure that the Gor-tex patch used to repair his diaphragm hasn't come apart, that he doesn't have any further anomalies, that his diet is what it needs to be to healthy and that he doesn't have Failure To Thrive that is common among CDH patients, that his heart is back in place and working well, and that his lungs are working. Every test has not provided perfect results, but in comparison to so many others, he is doing TERRIFIC. I'm very grateful for agreeing to CDH Clinics. They aren't available at every children's hospital.
For a lot of CDH families, this is what you can expect after discharge day. There will still be a lot of appointments and close monitoring of your child. It's going to be exhausting and stressful, but so very helpful and vital to catching and preventing major issues.
For CDH families who don't have this available currently, we certainly hope that in the future it becomes an opportunity for you. After discharge day, you may have many appointments at your local pediatric office. You may be terrified of finally getting your child home and not hearing the beeping and whirring of monitors that told you that your child is safe. You may be scared to death that you couldn't take a NICU nurse home with you because you don't trust your own abilities to raise a child with such a major illness.
We know you'll be just fine. You'll adapt as you've adapted to many major changes in your life. We are there for you every step of the way.
Reach out to us if you have any questions @ bmertes@cdhstarsandangels.org.
