Tuesday, July 3, 2012

Enterocolitis... Hmm.... What??? Not another issue?

Ok.... first, we had to deal with your tummy issue, apparently you have Hirschsprungs, we had the surgery and we thought we were done with it.

Then... they said you have CCHS, ok... mama took it in as well and now... what? Enterocolitis associated with Hirschsprungs?  Apparently it's common with pull throughs?

Ok... I thought it was an interesting day already since we had a trach change by ENT, trach care by mama and now your tummy is extended?  It was up to 41 and some rashes started too.

Mama is beginning to get really worried about you because the surgeon said that some infants can die from Enterocolitis.  Sigh... it's really a roller coaster ride, we thought that we are on track, on the way home and now again another issue?

I just checked your temp and it reads 99.9, which means you have low grade fever :(  They did a blood couture, blood gas and getting a urine sample from you, which you haven't had any in several hours, I guess you didn't have liquid till later this evening, so, not much pee pee?  Poor baby.  This is what they had you in.

And here you go, the Irrigation that was ordered for every 4 hours and NPO, just with clear liquids until they think your tummy is better.

There you are, Dada telling you to feel better and get well soon.

Here is my little hero, the FIGHTER... still going strong... I love you sweet baby boy!

The doctors were still very concern with your big belly, so, the X-ray team were called every 2 hours to check on you. 

Here you go, the X-ray team taking pictures of you, they said you like it on your side, it was so cute, it seems like you were looking at mama and dada waving at you.

And dada managed to snap a picture of you before they lay you on your back again... yes.. your belly was HUGE!!!

We left at about 12.30am because we wanted to make sure that you are ok.  Not happy with the measurements, it was 41.  Good night sweet baby.


  1. I'm so sorry to hear there is another issue. Stay strong Laura and CJ! And keep on fighting sweet Laynson! We are all rooting for you and cannot wait for the day that you get to go home. :)

    Lots of Love,
    Helen, Ken, Lucas & Logan