Sunday, January 12, 2014

Our HD baby

After my shortest labor and easiest delivery Lawrence and I sat in the hospital adoring our newest addition.  He had the same red hair as his older siblings, and outweighed them both by over a pound.  He was also very mild and took right to nursing.  Doctors and nurses came in and out to do their jobs and make sure I was recovering properly and that our little man was doing the things he was supposed to.

Our wonderful pediatrician stopped by on Friday to have a look at baby J and to ask some questions about him.  This was a little later in the day and she asked the inevitable questions about wet and messy diapers.  When we told her he had yet to have a messy diaper she nodded and told me that we could not be discharged until he had pooped, just something they have to watch for.  Dr. N was off on Saturday, but left us in the capable hands of Dr. B (another pediatrician) who, after Baby J was 48 hours old and still had not had a messy diaper, ordered an x-ray of his tummy to see what the problem was.  What we saw was distended bowel loops full of gas that wasn't escaping.  So it was up to Primary Children's for us.

A transport team arrived and stuck my new baby what seemed like 100 times trying to get an IV into him, then we were off.  I rode in the ambulance, Lawrence drove.  Up in the NICU we met more doctors and nurses and were given a vague plan of action.  Before we had even been there an hour they were taking Baby J for a test called a barium enema, where they inject barium contrast into his bowels and then x-ray to try and see what the problem might be.  The hope was that this would just clean him out and he would start doing what normal babies do on his own, but this was not to be.  Lawrence accompanied him for this test and I was forced to eat.

When the enema didn't get things moving and the x-ray was somewhat inconclusive another test was ordered.  They came a few days later and took biopsies of cells in his lower intestines to look for specific nerve cells that make his colon and bowels do their job.  After two agonizing days the results came back negative for the cells, our baby was officially diagnosed with Hirschprung's Disease.

According to wikipedia:  "Hirschsprung's disease (HD) is a disorder of the abdomen that occurs when part or all of the large intestine or antecedent parts of the gastrointestinal tract have no nerves and therefore cannot function."  This occurs in about 1 in 5,000 babies born every year and is treatable, with surgery.

So the next day, at a week old, Baby J went in for surgery.  The way the surgery works is this: they go in laproscopically (with a camera and tiny knife) and take a biopsy of cells in his intestine every few centimeters then send them for testing for the nerve cells, moving up until they find the cells.  Once they find the nerve cells they make a hole in the side of Baby J's tummy and pulled a little bit of his colon out into what is called a colostomy so that he can do his duty (it empties into a bag).  In a few months, when he is a little bigger, they will perform another surgery where they will remove the non-functioning part of his colon and pull down the functioning part to attach it so he will be "normal."  People who have these surgeries often suffer no lingering effects from this disease and go on to live normal lives.

We spent another week in the NICU recovering from the surgery, relearning how to eat, and trying to gain weight.  Then we came home, on Baby J's 2 week birthday.


3 comments:

Debbie Freeman said...

Yay to coming home! We love every picture of your sweet boy!

shaileyyy said...

Wow! The technology we have these days is amazing. I'm happy they found the trouble and can fix it. You are such a good strong mama. & your newest addition is just beautiful. Congratulations

Mom and Dad said...

Thank you for sharing so much with us so well. We're so happy you are all at home together now. Thank you for all the sweet pictures.

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