Where We Find Ourselves

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It seems odd to me to be casually sitting by the side of a hospital crib, listening to a Harry Potter book for the 8 millionth time, writing a blog post. But, that is where I am. In my life I have spent very little time in hospitals. In fact, before going into labor, hospitals kind of freaked me out. Now, this hospital has become a bit of a haven. I know when I am here that my baby will be okay. The have the tools to give her the fluids and nutrition she needs. At home, all I had were bottles and boobs.  She refuses to breastfeed and bottle feeding has become a frustrating experience (yes, we have tried MANY types of bottles with multiple types of nipples). Even though she has trouble with the bottle feeding here, they make up for it with a tube going from her nose into her tiny stomach (NG tube). When I am here, I can actually sleep.  I don’t spend hours wondering if she will eat better at the next feeding. I don’t spend hours online looking for yet another type of bottle/nipple to try. Also, when she is here, we can find answers.

So, what exactly is going on?

My little one has moderate to severe laryngomalacia (links below). Basically, her larynx is “floppy” making it more challenging to eat and breath.  The condition is not all that uncommon, but it’s normally not as severe as hers is.  According to the ENT doctors, 9 times out of 10, kids just grow out of it. Her problem is, it takes so much energy for her to eat that she just gives up and the amount she is getting is not enough to keep her growing and hydrated. We are caught in a catch 22. To complicate issues, she also has reflux. So, not only is it hard to eat, but sometimes it is painful. At this stage she has an NG tube so that she can get the additional nutrition she can not drink from the bottle. We are working with the ENTs to determine the best road forward. Right now she is just getting stronger under the watchful eyes of those at Children’s Hospital.

  1.  Cincinnati Children’s Hospital – Laryngolmalacia
  2. Children’s Hospital of Philadelphia 
  3. Johns Hopkins

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