Surgery {5.10.12}

As I mentioned in one of my previous posts, Emmaline has Hirschspung's Disease.

The only treatment is surgery.

Surgery? On my 2 week old?

I had panic attacks. I cried. I prayed.

But it absolutely had to be done.

Thankfully, we went home for 2 weeks so she could grow a little (still awful sounding, but surgery on my one month old had a slightly less gut wrenching tone to it). During that time we had to irrigate her 3 times a day (her intestines weren't working properly and she couldn't poop but by irrigating her we bought ourselves sometime).

With HD there is a section of the intestines that is absent of some very important nerve cells. That section must be removed. Since the nerves migrate downward the section is often very small and located at the very end of the large intestine (colon).

A biopsy is done just inside the colon to confirm the absence of the nerve cells and more biopsies are done during surgery to see how much of the intestines is effected.

So we couldn't even know before the surgery how much of her colon she would lose.

{Stressed}

Then our surgery day came and I was praying (along with many) that it would just be a very small section.

Hours passed as we (nearly my ENTIRE family) sat nervously in the waiting room until Dr. Brandt came to deliver the news.

"I'm sorry but Emmaline's entire colon and 20% of her small intestines is absent of the nerve cells."

{Heartbreak}

My poor one month old. I don't think I have ever been so sad or so scared.

Dr. Brandt said that she would be fine. He life will be different but she said that she had plenty of intestines left. She said that she would have an ileostomy (small intestines  brought out to the surface of the abdomen and a stoma, opening,  created for waste to leave the body) and we would discuss her pull through (reconnecting the remaining intestines to the rectum) at a later date.

{Wow}

Can we say...overwhelmed?

As if that even covered it.

Seeing my baby after surgery was hard.

Of course, I wanted to...couldn't wait.

I was scared of how I would react to the hole in her belly.

Mom of the year...I know. 

 But it didn't have any effect in me at all. I was so thankful that she was alive and that she could keep living.
 She recovered well and we learned to cover her ostomy and soon it started to work (after gut surgery the bowels need time to wake up and start working).

 My baby could poop! You may find this funny...but we seriously celebrated poop in a bag. Like, my entire family was standing around looking at the poop.

 It. Was. Awesome.

Our sweet girl after surgery...poor baby. 

 Anyway, that is that.
 Very rare disease.
 Even more uncommon to have the entire large intestine affected.
 And the small intestine is almost never involved...
oh and Hirschsprung's is more common in boys.
 Emmaline is quite literally a rare gem...
One in a million (seriously, her aunt did the math)!