If your delivery day is approaching for your CDH baby, you are probably wondering what to pack. For the most part, the hospital will likely provide everything you need. However, it is always nice to have some of your own personal items as well. As you begin to create your list, here are some items we’ve found helpful.

The Ronald McDonald House is a wonderful charity that allows families to relocate near the hospital in times of need at little or no cost. You will find that the RMH is similar to a hotel and will already provide much of all you need. However, parents have found that bringing a few extra things allows for a more comfortable stay. Here are popular items of your own to bring!

While it might not come as naturally in a hospital setting, it is definitely possible to have a beautiful relationship with your CDH baby while they are in the NICU.

We knew we would be looking at an extended NICU stay with our CDH baby. What we didn’t know is that we would spend 323 days in a hospital 623 miles away from our home. While this time was unexpected and quite possibly the hardest thing we’ve been through, we found ways each day to make the best of a tough situation.

It’s important to stay connected to your partner during these challenging moments. By doing the small and simple things, you both can come closer together and combat the struggles that come with a CDH diagnosis as a united front.

Oral aversions and weaning from a g-tube while maintaining adequate nutrition can be one of the most challenging and frustrating parts of the entire CDH rollercoaster.

When you have a CDH child, mealtime can often be the most dreaded and frustrating time of the day. We’ve been there! Here are some fun and creative tips and tricks to bring laughter back to the kitchen table!  

No matter which way you go, the important thing is to make sure the papers are all in one place, easy to access, and that the system is sustainable.

Once your baby with CDH is finally ready to go home, you will have a big decision to make before leaving the hospital. That decision is: Who will continue providing their medical care locally? Who will be their pediatrician? Here are some tips to help you make that important decision.

RSV is a highly contagious respiratory virus. In most healthy individuals it presents as a common cold and isn’t usually a big deal. However, in babies with compromised lungs, like CDH babies, it can be much more serious.

I still see the world as a giant germ. I still cringe when I see her lick ice cream off a table, touch the bottom of her shoes, or put her fingers in her mouth, but because she was so well protected early on, I know she will be okay.

Together with his mother, Tijmen told his class about all about his disease - CDH. When he and his friends told them about the mountain bike event, his classmates were speechless. “They really thought it was a great action, and the teacher was very proud.”

Long lines, Florida heat, and big crowds can be scary for CDH kids that have been sheltered for so long, but with some research, thought, and planning, you can make it a magical trip they will never forget!

I love that we use these beads to teach her all about her journey and what she overcame. To show her how much courage she has, how strong she is, and remind her that she can do hard things no matter what she is faced with in life.

I was so worried that I was ruining my kids’ lives by moving them so far from everything they knew, and it turns out I had nothing to worry about. My children were positively spoiled by the love and attention from everyone out there, they made lifelong friends, and got amazing experiences they would not have been able to experience otherwise.

Once you are given a CDH diagnosis, several things generally come to mind, one of which may be, “How Will I afford a CDH baby?” The idea of medical bills, time off work, and expenses related to relocating may make everything seem impossible. However, there are several things you can do to begin saving and help offset the cost.

I know the thought of going through the CDH journey, miles away from family, is very overwhelming. It is important to remember that ultimately this sacrifice gives your CDH baby a greater chance of coming home faster and in much better health, which could ultimately save money and allow your family to find a new normal, at home, more quickly.

If you aren’t given hope, if the doctors do not believe in your babies ability to survive, get a second or third opinion. Seek out a quality CDH surgeon at a hospital that has a top-notch CDH program. Find someone that believes in your baby’s ability to survive and thrive. Find someone that will fight for them every step of the way and has the skills to redefine impossible.