Hi Sharon I 'm not good with the picture thing either I think you have to shrink it down to put it on here .  John has some really good web sites there . Hopefully you will be able to get Jamie in that RAK Hospital sounds like a good one for you . Like Bubbles said maybe family or friends could send supplies to you . Sorry I can't be of much help . Moral support is about all I can do .

Hi Bubbles, those are 2 very good suggestions !!!!!!

Oh The boat we ride in and I feel like I was the only one with one ore in the water with this--I have company! YAAAAAAA

Hi  JamiesMom, 

How are things going over these past few weeks? I'd love to have an update to make sure things are ok.

YEs, Jamies mom, I also was  thinking of you and your son..  I am sure that he is getting active now-- Between changing the diaper and a pouch must be an amazing attempt..  Hope he is doing well.  And Yourself too!! Always a thought and well wishes  your way-- Marcie..

Dear JamieMom, 

As a grandfather of many,  and an ostomate too,  you have my attention. 

Rule #1 is DON'T PANIC! If you panic,  you're useless. 

#2 is Think! You're the adult in the situation. 

#3 is be patient with your learning curve. Trail and error requires error. Your child is resilient. 

The next step is to educate yourself.  We aren't talking about book learning. You learn by asking questions from people who are likely to have the answers.

Your greengrocer may mean well, but doesn't know what the hell he is talking about. BUT,  he is a good source of sympathy and cucumbers. So don't alienate him. The same goes for your In-laws.

Methods of self education include, ( but are not limited to ), asking for help from professional people, asking ostomates,  discussion with our  group,  etc.

Don't worry about getting it wrong. Babies poop all the time. Invest in a big washing machine. Manure Happens! 

Rather,  take careful notes of what works and what doesn't. 

Advice given so far was to keep peristoma as dry as possible.  Don't use lotion,  especially oil based.  The adhesive will not work.  Dry peristoma with stoma powder, and remove any excess.  Pat dry with tissue. DO NOT RUB!.  Apply eakin ring and wafer per manufacturer's instructions.  

Let me add to not let the bag get more than 1/2 full. This causes the most problems.  

Now, he is a little kid.  May you ģrow to appreciate that he has a unique contribution to make in this world. And that the world will be a better place because of him. 

When one of my babies had colic, the doctor prescribed Peragoric. My wife rubbed it on his gums, etc. But nothing helped.  She went back to the doctor and cried that the  baby is suffering so much! Doc asked " what are you doing with the peragoric solution? She said that she tried to rub it on the baby's gums.  Doc said, you're to drink 1 oz. Every 4 hours.  My wife said," me?" 

Doc said " yup, until you calm down,  the colic won't get better. "

Good advice. 

Wonderful Mr. "  Z "  Well put !!! Much Love went into this structure to her. 

Yes, This Child will be amaizing in the near future.. Not as an Ostomate, but his courage to be one of the strongest person ever !! 

Enjoy his smiles Mom........ you are loved..........   Marcie.. 

Hello Jamies Mom, Yes it would be great to hear how the wee guy and yourselfs are getting on. Please note the post from Zvitusk!! theirs one thing about that guy when he posts it heartfelt and to the point. people on here care and want to help. Best wishes.

JamiesMom.  I am adding my own heartfelt AMEN. Please let us know how things are going. You have landed smack in the middle of one of the very best places to get ostomy help.  There are enough of us here that at least one of us has experienced darn near anything that you may run into. AND we all want to help. We know what it is like to be wandering around in the dark.  Eric really knows his stuff. He was the first person i found that really helped me get going.  His suggestions and videos corrected all the bad information that i got from the hospital and taught me how to live life happily as an ostomate!!  Wishing you the best ... Barbara 

I have a call into the Children's hospital and waiting for a call- Looking for other moms with young babies with your struggles..  I am claiming that I am "auntie" of one.. :-) Hopefully I can get into touch with a Mom and /or Dad.. And will send them to this blog... I will let u know of any results though private mail.. May take time--But never know--- Also, I am looking into my support group for you-even tho different countries, etc. Being an ostomate of any age-is hard to adjust--but your in a different success area and story-that can help you and you can help them.. Hang in there... Being a mom myself-just want to let you know that I am always with you in daily thoughts and prayers..  Please try to relax, and enjoy these holidays. You have a issue here, and the acceptance and the feelings of what did I do wrong? YOU did not do anything wrong.. Neither did we........ as adults........ (we sometimes wonder what did I do wrong?) -some of us anyways- But there is help in the future for your Jamie-The things that they can do even now to re-direct by-pass's etc.  What a positive out look for his future.. 

My hugs to you and Husband and your little one -- Auntie Marcie----------- :-) 

Wow,

Aunt Marcie is Fantastic.  What a great idea. 

Guys,  let's imitate her and spread out. See what we can dig up for JamieMom. 

Go, Go, Go!

Thank you everyone for your feedback and concerns. Jamie is already 11 weeks old (how time flies) and we got great news from his surgeon that he will be going for his pull thru in early Jan! But at the meantime we are still struggling with leaks and lesions. We recently started using a barrier film on Jamies skin unfortunately it backfired. After only a few hours of changing his bag, he started screeching! When we opened to see what had happened, we noticed his skin was red and raw! We then realized it  was because of dear sons natural reflex of constantly kicking his legs up which forced the film and base to be ripped off from his skin! Sob sob..  That’s when we realize the root cause of all his leaks. Because the base sits right on his hip bone and leg joint,  it just would not allow the base to sit flat. Anyhow, all is not all dark and gloomy on our end.. Jamie is growing well and is a happy baby.

We do have a few tricks up our sleeved which has given us a slightly better hold. We would warm the base between 2 heat pads until it is nice and warm to the touch which makes it soft and extra sticky. Some would use a hairdryer but I found the heat pads works best. We also put a tampon in the bag to absorb all the liquid 😊 and change them as often and conveniently as possible. Sudocrem has helped with the rawness. We also swaddle our little bub so that doesn’t give him that much leg movement for about 30 mins or throughout the night if we change him at night time. Just to allow the base to stick and cool before he “break dances” again as hubby calls it. Depending on our luck, we could get up to 3 days without any leaks..

Thank you Aunty Marcie – that would be so helpful! And hopefully we too can help others with what we know and have learned through this experience.

Love Jamie and Jamies Mom 

tried uploading Jamies picture to my profile but it doesnt want to stay vertical?? lol

Jamie says thank you to you all. hugs and wet kisses .

Hi JamiesMom, that's fantastic news, cracking lookin wee lad. for the liquid out put why not give some of the gelling agents ago if available. you will see an example on Erics blogs. plus some base plates/wafers are not as ridged as others. God Bless.

Ahhhhhh Our tiny member.......... EVER!!!!!  HE is a cute little fellow-- Gladly take turns holding him for sure!!! YEs, the tampon-- Funny thing is when I was in the hopsital last year Christmas week, with my VERY high out put etc. Dr.'s were asking me all these stupid  questions. I told them let me opt it this way!! "I am about ready to swollow a tampon" !!  That is how bad it is!!!!!! get it now Doctors"  ??????????  Great idea mom !! Only a woman would have thought of that for a baby.. You rock mom!! 

Now this pull through-what does this do or will do for Jamie? 

Best of luck-- January is not that far off!! And most of all- hugs and kiss's from Auntie Marcie... :-()      ***Well, got to add a hug for mom and dad too ! 

Thanks for the update and I'm happy to read about the various tricks you've been trying. You'll continue to get better at this!

I'll rotate that avatar for you - sometimes if the image size isn't perfect, the software will decide how to rotate the it. 

Hi JamiesMom

What a hansom young man he is ! You seem to be doing good with finding out little tricks to do . Like the tampon trick what a good idea ! Like John said maybe you could try the gel packs . I use them from time to time and they do take the liquid and turn it to gel making it a little easier to manage and maybe helps prevent leaks at least they wouldn't be liquid leaks . Glad to see our little ostomate is doing well . Hope Mom n Dad are doing as well too . But I have to ask what is the pull thru that he will be getting in January ?

Jamie is a beautiful baby.

One day,  you will tell him about all of his aunties and uncles and surrogate grands.

Till then , keep on kissing and hugging him (for us,  of course. )

Mom, How about a cut up "ladies (the olden day's pads?) Maybe cut it up in 1/4th? or 1/8 inches?  Or, tuck those around the wafer so his (other output) doesn't sting to that area and these may keep things in place while he is busy with his   *break dancing? *

There goes mom down to the store.................  

JamiesMom, oh wow he is such a cutie not looking at his picture gives me baby fever. Not a good thing when you're 68 years old. Haha. But he is a little doll I'm glad to know that some things are starting to work for you and that you're getting a handle on things. We're always here for you anything we can come up with everybody's got an idea or two. I too would like to know what this pull through is in January so if you let us know we'd sure appreciate it. Keep up the good Lovin work Mom you're great. Barbara