Divide and Conquer for our CDH Baby
As soon as I found out my daughter had CDH, I was immediately left to make all of these big, life-impacting decisions. I had never even heard of CDH before, and now here I was, having a CDH baby, and my first role as her mom was to save and fight for her life. To do that, one of the most significant decisions we had to make was where to deliver. Sometimes families live near a large children’s hospital capable of treating CDH, but we didn’t. Our children’s hospital is really good, but not for CDH. In these situations families like ours need to relocate. For many reasons, it sometimes makes the most financial or practical sense to divide and conquer— Mom relocates to the CDH hospital. The other parent stays home working and/or taking care of the other children (usually visiting the hospital periodically). Or in some situations, both parents decide to relocate and opt to leave the other kids at home with a relative.
I know the thought of going through the CDH journey, miles away from family, is very overwhelming. However, families that aren’t near top CDH hospitals usually find comfort in the fact that their baby will be in much better hands than if they stayed local. 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! It’s difficult in the short term but can pay off exponentially long term.
If you have decided to relocate without your spouse and/or kids or wondering how you could possibly make such a decision work, not to worry, I have some ideas for you!
Plan Communication Ahead of Time: Life can be busy, but planning out times to call and creating a typical routine for communication can really help. It gives you and your family something to look forward to and ensures everyone is available to talk when you call home.
FaceTime: FaceTime is such a great tool for staying connected. It also doesn’t have to be limited to just FaceTime calls. You can use it as a way to play games together, read bedtime stories, participate in meaningful conversations or attend events/conferences for your other children, and even enjoy a meal together!
Plan Family Time: Many families will have the other parent and/or kids visit right before induction day and stay until their baby is out of the very critical stage. Sometimes that is until they are off ECMO and other times until they have had surgery. This allows them to be there for the big stuff and head home to continue working once their baby is in the recovery/learning to eat stage. Then, they may plan to come back towards the end to travel home together. Having these visits planned out gives you something to look forward to.
Relative Goes With Mom: Sometimes, if your significant other isn’t able to relocate with you the entire time, you can have one of your parents, a sibling, or a good friend go in their place. Even if they can’t be there for the whole stay, you may be able to have several people each come down for a few days or a week at a time. This is especially helpful if you are relocating alone with your other children while your spouse stays home to work!
Texting: Texting back and forth is a great way to stay connected during the days and keep each other informed on everything going on in both locations!
Reach Out To The Community: If you are relocating to a top CDH hospital, chances are you will have 10-15 other families there with you. It’s a great idea to reach out to them, create friendships, and find support in them! They will quickly become like family and be there for a hug or chat on a hard day or eat ice cream and celebrate on the good days!
Journal of Rounds: Keeping a journal of everything can be really helpful! Each day the doctors will round and bring everyone up to speed on what has been going on. During rounds is a great time to write notes in a journal and keep track of what is said so that it can be accurately relayed to Dad/Mom later. Having a journal will also allow you to write down the other person’s questions so that you don’t forget to ask the doctors later. It helps everyone feel involved and know what is going on.
Snail Mail: If you have children that aren’t relocating with you, sending snail mail or care packages can be incredibly fun. It gives them something to look forward to and makes them feel special when they get a letter from the parent miles away!
Special Toy or Book: For younger kids, before relocating, it is really fun to pick out a special stuffed animal or Build-a-Bear that the other children can sleep with in your absence. There are also books you can record your voice in; or buy a special book to remind them of you.
The main thing to remember is that the time apart will be temporary! Stay positive and keep your eyes on the prize! Together you and your family can divide and conquer CDH!
Thanks to Ashley Smith, Ally Sanchez, and Olivia Cason for contributing to Divide and Conquer CDH!
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