With a typical pregnancy there are things you would never think about when holding your infant. When you are a parent of a CDH'er when you hold your little one you are concerned with things like: are the tubes or wires pulling on your child? Or is the way you are holding her is making it harder for her to breath? You also get to know their heart rates and how they soar when your baby gets upset and calm when they are in a deep sleep.
When you are a parent of a CDH child you learn quickly that things that would have once scared the snot out of you are now part of the routine daily roller coaster to recovery. Now please don't take this blog post the wrong way our little Sophia is still doing well and is still a CDH Super Star. I am just simply stating that there are a lot of little things on a daily basis that is different from a typical pregnancy. While I might not be up right now every two hours to feed our little Sophia, I have learned that the everyday roller coaster and the stresses induced by that can wear a person out almost as much as the feeding schedule.
You may notice in the picture that the tape and tube is pulling a little on the skin by Sophia's eye, Just after I took the picture I showed the nurse and she fixed the tape so it did not pull.
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