Friday, February 12, 2010

And finally some Answers.....

***Sorry for the long post, but I needed to get this out and many of you are aware of this story so this might be of interest to you***

Hirschprungs Disease?!?!?! Yes, this quite possibly could be the answer to one of the biggest stress points of my life over the past few months.....(and years?!?!)

Let me back up. April 2006 brought a wonderful blessing to our family in the birth of Samuel Stephen. His delivery went great, but the next few days, weeks and months were some of the roughest for me.
First off, he wouldn't eat, didn't want to. Then he wasn't pooping the maconium poop that most babies do. Then after 12 hours or so he started spitting up this green mucous like bile. (gross right?--well more alarming than gross). Our pediatrician didn't wait and immediately got a neo-natologist involved and Sam was wisked off to the N-ICU to monitor him. We quickly got him a blessing (which forced us to decide on a name because we were torn between 2) and off he went. Stephen didn't leave his side as they hooked him up to an IV, a tube to pump his stomach and a few other things. Compared to the other babies in the N-ICU he looked great, but to us it was scary. I wasn't allowed to feed him and they began x-raying his digestive system every few hours looking to see what the problem was.After about a day in the N-ICU he finally showed signs of movement in his digestive tract, we gave him a bunch of stool softeners and he cleaned out his system. He was jaundiced but keeping down what we were feeding him by this point and they let me bring him home within the next day (3 days after he was born)But things were still not over, he was miserable! He would just scream and pull his legs up into a ball, we had a hard time teaching him to nurse and he seemed to prefer the bottle but was still very uncomfortable.

The first few months were LONG, he cried A LOT, seeming to be in so much pain, he'd only sleep if I held him so the baby carrier became a constant accessory. And he wasn't gaining too much weight. He didn't look healthy!
(Sam on his blessing day--2 months old)

Then there was the projectile vomiting. It seemed to happen a bit too frequently so we went into the doctor. He went on some medicine which seemed to help a bit at first. He was finally able to keep his food down better BUT he wasn't pooping. He would go days without pooping and just cry from being uncomfortable. So we began giving him suppositories every 2-3 days to help him clean his system out. An assumed side effect from the medicine.

This was my life for the first year of Sam's life. He just had one issue after another! By about 9 months his reflux had seemed to subside and he was never a great nurser so we weaned him. When I finally gave up nursing (and immediately got pregnant with Lindz--surprise!) his tummy didn't like regular milk and we assumed lactose intolerance and changed his diet yet again.

But for the most part we'd figured out the digestive issues, or so it seems.

FAST FORWARD TO AGE 3!!
A few months after turning 3 we attempted potty training. He took a couple weeks to pee but since June or July of last year he's been peeing like a champ!! Even dry through the night really quick into the process.

BUT SAM has NEVER had a successful BM in the TOILET. Can I stress NEVER enough?!?! We've tried everything: teaching him about the process, making him sit for long periods of time on both the regular potty and the training potty, reward charts with stickers, going comando, just taking a break and letting it happen when it should. We've fasted, prayed and he himself has even prayed in his personal night-time prayers
"PLEASE HEAVENLY FATHER HELP ME LEARN HOW TO POOP" (doesn't that just break your heart?) We've tried to be really patient and not make this a punishable behavior. Pooping had just been his "thing" since birth, why should we be surprised that it was taking him a bit longer than most? But was it just that?

At this point it was becoming a social issue with Sam. He's been made fun of at a play date when he'd had an accident. He's ready for pre-school and I can't send him until he's mastered these life skills. And lets remember that I'm about to have a baby, and having 3 children who need help in this area is enough to make any mom a bit crazy--we were desperate!!

So last month (January--8 LONG months of no pooping success) I pull out all the stops and begin using suppositories again when I knew he needed to have a BM and letting him sit on a training potty all relaxed in front of the TV. He HATED having it put in and when I told him that he could push it out, he couldn't. (BELLS GOING OFF IN MY HEAD!!!) He can't control these muscles,
he CAN'T do what we're asking him to do.

Off to the doctors. Last week Stephen and I went in together and let Sam wait in the waiting room with my mom so that we could talk openly with the doctor. He listened!! And agreed that there seemed to be a bigger problem going on. We were referred to a Pediatric Gastro-intenologist. Sam had another blessing and we enlisted the prayers of many friends and family.

I was worried at first that he wasn't going to believe me and just think I was a mom not giving my kid enough time to figure out the pooping part of potty training but that's not what happened at all. I started with Sam's history of being impacted when he was born. Dr. Brown was VERY interested. He asked what was done and I told him. Then I continued on with his history.....

His assessment: it sounds like
Hirshcprungs Disease. A condition where the nerves don't form at the end of your rectum and you therefore have no sensation. Usually tests are done on infants that don't poop for 36-48 hours after birth but Sam was able to poop before that (with some help of course) and so the tests were never done. A very specific biopsy test (will be done Monday) to confirm if he indeed has this, but if he does then a simple surgery will be done to reach up and pull part of his colon down and cover the affected area to let it have nerves that work and WHA-LA he should be able to poop like a normal kid.

We don't know if this is indeed what is going on but it feels like the missing piece to the puzzle that we've been searching for for MONTHS and years.

Part of me feels REALLY guilty that I didn't follow my gut more when he was so little and it didn't seem that the reflux treatment was working and I had that nagging feeling that something more was at play. But I was frazzled, exhausted, and had a "difficult and colicky baby". The pediatrician was willing to send me to a GI specialist but I was told nothing would be done because at that point he was a healthy weight and keeping things down. I just keep thinking of all the pain he would have been spared, about all the bouts of crying when he was trying to tell me something was wrong and I didn't listen. AND all the hassle our family would have been spared had we known then and treated it then.

Let's hope this is the ANSWER WE'VE BEEN WAITING FOR!! Keeping our fingers crossed for Monday.

5 comments:

Leslie said...

Wow! That is amazing! Hopefully everything will continue to workout...thank goodness for modern medicine. Good Luck!

Hilarie said...

We'll keep you guys in our prayers! Hope the doctors get this thing figured out ASAP :)

HILL HESS said...

Wow. I'm so glad you took him in! You scared me with that first photo though! I about jumped out of my skin with you with the new baby! Let me know if you need anything.

Oh, PS. I haven't been by with your gift because they kids have the stomach flu.

Marcy in TX said...

praying for you all! We miss you guys every Sunday still...

michelle said...

Oh Melissa this breaks my heart! I hope you figure out what's wrong and poor Sam can POOP!

p.s. I totally thought you had your baby when I saw the first photo. =)