Saturday, November 9, 2013

Hoden's Health Update

I had the full intention of sitting down and catching up on blogging about our cruise, halloween and other fun things but just can seem to do it. My mind keeps drifting off to the adorable Hoden and everything we have gone through with him. He is growing like a weed and is ahead in every physical milestone and according to Dr.'s he is incredibly healthy. For all that we are indescribably thankful. Our stint in the NICU and the one time we had to take him up to Primary Children's hospital certainly helped us be fully aware of just how bad things could actually be.

However, for Hoden "healthy" is a little different than most kiddos. At birth he was deemed perfectly healthy. Nothing was amiss that any doctor could see. He nursed like a champ right after birth then fell asleep and cuddled like the perfect newborn should. Quickly he went from perfect to needing emergency surgery to attach his colon to his bowels, which failed and he ended up with a colostomy. Once again he was back to "healthy" and aside from the super scary aspect of needing the colostomy sight redone because the stoma (where the poop comes out) had died, we were in clear.  We changed his colostomy bags instead of diapers but Hoden was happy and healthy and we couldn't ask for more. The only time is stressed us out was when we didn't know how to put them on, when he had the flu (although any kid having the stomach flu at 4 months is scary, and when the bags stopped working.  But other than that we were golden. Nobody believed us when we told them how well every thing was going they though we must just be putting on a face.

Even when he had his take down surgery to get him pooping like normal we handled it with grace. The surgery went well and he went home in a miraculous 4 days. Hoden also never experienced any of the dangerous complications like infections or bowel blockage. He simply pooped all the time but we had been warned and we were prepared. We changed his diaper all the time, kept it slathered in creams and ointments and kept on going never letting it get us down.

That was in early March of this year and since then Hoden appeared to be close to a normal kiddo only have a few bowel movements a day. We adjusted to this "new normal" and it was such a relief not to have to change diapers 24/7 and deal with bleeding rashes. But it didn't last. . . As always Hoden is healthy but not quite normal even by medical standards.  Just like his Atresia (where his colon stopped connecting to anything) was in an incredibly rare location, his intestines don't have enough nerve cells to be considered normal but don't such a lack of them to be considered as having Hirsprungs disease (a condition affecting the functioning of nerve cells in the intestines).

So Hoden is somewhere between normal and having a complex medical condition and its getting frustrating. While we are so happy that he isn't actually "sick" nobody knows why our little boy is still POOPING UP TO 20 TIMES A DAY sometimes for days at a time. But he doesn't act sick and is gaining weight well and so the Dr's are not concerned and really have not reason to be. While we are happy that nothing is dangerously wrong it is still really really annoying to CHANGE 20 FREAKING DIAPERS on some days :(

I feel like my happy face I have worn since his birth is wearing off and I find myself crying about it from time to time. I am so tired of wiping bleeding rashes while my son screams in pain at the top of his lungs. My heart breaks for him. I want to know if he really is just taking forever to heal from surgery or if something else really is wrong with him long term. I wish that I could just magically make him normal or heck I sometimes just wish that he had a clear diagnosis of something wrong just so we could blame everything on it or better know what to do. In the meantime we are stuck in limbo and I need to remind myself that being in limbo with a kid that is happy and "healthy" is still something to be thankful for, and we are. We are so unbelievably thankful for our beautiful, smart, funny, adventurous, silly and adorable baby Hoden.


  1. Oh Charlene! I am so sorry you are going through this. It sounds really hard! I think you are amazing and I'll pray for your cute little guy!

  2. 20 diapers is a nightmare. And I complain when my kid poops twice in one day. :(

    He's really really super cute.

  3. I'm not sure how I found your blog but my son was born with multiple atresias. He wasn't as lucky though and ended up with 2 ostomies and lost 85% of his intestines. His ostomies have been reversed (thank heavens) but he still deals with a chronic medical condition. He has sbs. Don't know if that is a possibility of what they may think is wrong. But if you'd ever like to chat feel free to email me. We are also seen at primary children's and my son also poops, a lot. We have some magic potions for butt cream if you ever need advice(you may have tried them all!) best of luck