A lot of factors go into the choice of relocating for CDH care, but here are a few things you may want to consider as you make that decision.

Being in a hospital room loaded down with so many machines that it becomes nearly impossible to find the baby is a parent’s worst nightmare. Hospital equipment can be daunting, but knowing what each piece does helps make a stressful situation a more understanding situation.

It is common for a feeding tube to be recommended until your Tiny Hero can figure things out on their own. In hopes of making this decision seem less scary or foreign, we have compiled many of the most commonly asked G-tube questions for you!

Some of our Tiny Heroes may struggle with speech and language development, and that’s okay! There are many things you can do to help prevent or overcome challenges with speech or language. Here are a few tips and tricks to help your little one learn to understand and use words at various ages.

Sensory play doesn’t have to be hard or complicated. It can be easily accomplished through play using basic items in your home or your backyard! Remember to have fun with it too!

When a baby spends a great deal of time in the hospital early on with many altered sensory experiences, it may lead to delays in oral and fine motor skills. It is essential to give your CDH baby a lot of sensory experiences and work on building up strength in their hands to combat any potential delays they may have.

There are lots of things you can do at home with your CDH child to help develop their fine motor skills in combination with the directions from your doctor and OT. Try out some of these at home to help with any delays your child may be experiencing.

Upon diagnosis, one of the first things mothers often ask is, “Will I be able to breastfeed?” This is such a tricky question to answer because there are so many factors to consider; however, it is important to know that just because your baby has CDH, it doesn’t automatically mean that nursing will not be an option.

Keep it fun, sneak in calories as you can, give lots of rewards, and trust that it will be okay.

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.