Sunday, June 26, 2011

You know you’re a parent of a tube fed child when...

I simply had to share these. These are some answers from parents on the feeding tube awareness facebook page.

- When you can convert ounces to mililiters in your sleep. lol ~Amanda

- When you ask your other oral fed child if they need a "feed" and then catch yourself

- When overnight feeds feed the bed more than the child.

- when your house looks more like a pharmacy than a home

- When you talk about weight in kilograms instead of pounds

- When you hear that stinkin beep anywhere you go!

- When your two year old says "I bolus mommy"

- When your two year old knows what bolus means.

- When you know what "belly puke" means...

- When you know the mess that can be made by a stupid med port being open.

- When you always have two extra sets of sheets and two extra sets of jammies by the bed for the inevitable 4am leaks.

- When your friend hands you her 11 month old and says you can give her a drink of water if you want and you realize you don't know how

- When you have your own stock of hospital grade receiving blankets for 'catching vomit'

- When you hold another child and freak out for a minute cause you cant feel the button( and then realize,wait..).

- When used stomach contents don't faze you even a little.

- When you see a child slide down a slide on their tummy and you have a panic attack because you're worried about their button, then realize not all kids have them.

- When you hold other babies and try not to "hit" that area when lifting them up...or just be careful not to pull it out...

- When you plan your life around feeding times.

- When u pick up other babies you turn their "tube side" away from you so u won't snag it..then realize they don't have a!!

- When every piece of furniture you own is covered with "splatter" from tubey food.

- When your child’s favorite toy is a 60 mil!!!

- When lunch boxes are for storing storing syringes and water flushes not sandwiches and snacks.

- When your 2 year old goes to feed their baby doll by lifting its top and putting the bottle to its belly!! I didn't know whether to laugh or cry when I saw that my girl thinks this is how everyone is fed!

- When you have a new baby and every time you dress them or put them in the car seat you are careful on their left side where the tube should be.. Or you have to give oral meds...

- When you talk about a "mickey" and don’t mean a Disney character

- When you only shop for snap up outfits to avoid cutting holes. . .

- When your child knows every body part except when you ask “where's your belly button?” and they point to the tube.

- When you carry a backpack with extensions, syringes, gauze, tape and and extra amt mini button.

- When you have barf cups, bowls all over your house just in case

- When your child is 7 years old and you still carry a diaper bag.

- When your child's first discernable word was "backpack"

- When you plan your day around feeds and medicine time. You also have syringes, extensions, and multiple outfits on hand! Plus you never leave the house without a flush!

- When vomiting and stomach contents don't bother you! And you get excited over new tubes and syringes!

- When all your build a bear stuffed animals have buttons in them

- When you hear 'uh oh oh' from the back seat of the car while driving, and you look in the rear view mirror to see milk shooting all over the car because someone busted open their med port (again) on purpose, just for kicks and giggles

- People look at you strangely when out dining, and your child is the only one not "eating"

- When you enjoy looking at medical catalogs more than the parenting magazines.

- You get excited when your child has a BM.

- When you see another child's diaper being changed and think, "Weird, they don't have a tube."

- When your orally fed child needs to take medicine and does everything in her power to spit it out and you realize how much EASIER it is to give meds through a tube.

- When you get splattered while out in public with feeding or even smellier stomach contents and you just wipe it off with a baby wipe and go on about the day. Even if you are wearing white :)

- When you keep a hospital bag in the car, including a can of formula and change of clothes, because you never know when you will find yourself there and the er automatically admits.

- When you are excited about your kid moving from the NG to the G because you will finally be able to kiss both cheeks without kissing tape/tube! Plus, no more crusty tube coming out of the nose when they have a cold! ♥

- When you can convert ounces to calories without a blink.

- When you go to lift up or tickle your non tube fed child but you still be careful not to touch the tube

- When you get the weirdest looks when you are feeding your child.

- When you measure vomit in terms of quantity AND distance

- When leaving the house for an hour it looks like your leaving for good with all the bags and equipment you have to cart around!

- When you think in mililiters instead of ounces and you can draw 1.5 ml of Zantac without even looking.

- When you recognize a tubie kid in public by the familiar bump under their shirt. Finally it wasn't just me thinking every child has a tube.

- vWhen there is no bodily fluid on earth that can make you cringe.

- When you know more about the button then the doctors office that put it in.

- When you get good at aiming vomit on the wooden floor rather than rug as it's much easier to clean

- When you have to explain to the ER nurses the difference between his ND and a regular NG and no you can't tell if it's in by a popping noise he DOES in fact NEED an X-ray...

- When you can't find a pen in your backpack but you can find the top of a syringe....

- When you have ever told another mom, "Its just puke!" As if to say whoopitidoo, get over it

- When you don't know how to give medication orally!!

- When all of the adorable zipper sleepers that you were super excited about when you were pregnant because they were so much easier then buttons are sitting in a box in the closet with the tags still on them.

- When there are all the unopened baby bottles you received at your baby shower at the bottom of their closet.

- When you struggle to find a place in your diaper bag to actually put diapers, because pump, formula, syringes, and extra button have already taken up all of the room.

- When at a restaurant and it is time for your baby to eat so you lay him across your lap and pull down his pants and start unbuttoning his onsie to get access to his tube and a waiter runs up to your table and says "mam you cannot change your Childs diaper in the dining area!"

- When your other kids want to do science experiments involving the bile you drained out of their baby sister's stomach.

- When you run out of bed on those mornings when no alarms are beeping and you can’t smell the neocate on the floor and thinking what has happened - is this heaven?????? x

- When you giggle hysterically at parenting books

- When you always carry a ziplock in your bag to catch random vomit and having to explain to everyone "NO HE IS NOT SICK"!

- When your child would rather play with a 60-ml syringe than her toys. Especially in public. Oh the stares. Lol

- When you just lift there shirt to administer meds without thinking who's around

- When you have more syringes than cutlery in the sink

- When your child has two school bags - one just for tubes, pump, formula, bottles, etc,etc and the other one for normal school stuff

- When your home smells of sweet milk, poo and disinfectant.

- When you empty the dishwasher and the utensil caddy has more syringes than silverware.

- When you unwittingly say "will you turn him on?" when you really mean "start the pump". Ya, that got a few wisecracks!

- When you have to expalin to the nurses at the hospital how to feed, burp, medicate your child.

- When all your friends call you for answers about anything medical about their typical children.

- when you check your child's pump when you here the beeping of the fryers while walkign through the food court in the mall.

- When your having a dinner party and you have to tell your guests it is time to refeed the bile before you serve dessert.

- When Your kids vomits and you clean it up without even missing a step!!! lol

- When you take your child to the ER, Hosp, or new dr and you are sitting there reading a magazine, looking bored or like you don't care, and the 13 yr old is giving the entire history and meds list by himself without skipping a beat

- When you ask your child where is button is and points to it and then looks to see if anyone else has one. Then gets excited that his stuffy has a tube just like him.

- when all the jammies have holes cut out in them.

- when your baby's favorite toy is a blood pressure cuff and you can't remember the last time you left the house with fewer than two diaper bags

- When you open the tube to let air out of there stomach and the baby laughs or yells and vomit comes shooting out and you just wipe it up like it's nothing and your friends n family look disgusted lol

- When you give the student nurses tips on using the pump and/or rinsing the extension when in the hospital with your little one.

Elmo with his g-tube!

Saturday, June 18, 2011

Swim Lessons

Although Owen is currently in the hospital, I wanted to share what we were doing this past week . . . swimming lessons!
Owen got out of the hospital in early June and was doing great. So, we decided that it would be super great to sign the boys up for a parent and child swim lesson. Although I taught this class for many years, we do not have a pool and I wanted to be able to be with the boys in the pool without having to fight the public crowds during the day. It was so worth the money to be able to play with our boys with only about 10 people in the pool. The class is a 2 week class, each morning for a half an hour. I am hoping to get some sort of refund for Owen since he will obviously be unable to attend the second week.
Anyway, the boys have been great in the water! They just love the pool!! I knew Isaiah would love it because he LOVES his bath and splashes and plays in the water. Owen doesn't really like baths so I was a little worried he would be uncomfortable in the pool. That wasn't the case at all. He really liked the water. I had so much fun trying to teach them to kick, move their arms, blow bubbles, and go under water.
Here are a few pictures of the fun filled week!
Isaiah holding on to the side . . . all by himself!

 Mommy teaching Owen how to kick

Owen is just soo excited!

 Isaiah is having so much fun

Even Grandma had to joing in on the fun!
Isaiah, Kassidy, Carson, Kathleen, and Owen

Family in the pool!

Thursday, June 9, 2011

Doctor Meeting!

We had a doctor meeting for Owen on Tuesday the 7th in Oakland. It was originally supposed to be a doctor meeting with Heath and I, the GI team and the Surgery team to discuss possible TPN or even the STEP procedure for Owen. However, when we got there, only our GI doctor came into the room where we were waiting. She said that she tried to get everyone else there but they were all unable to make it. She told me that they would have rescheduled but after talking to the 2 teams, there was really no reason for the meeting unless I needed to clarify with everyone.

She told me that the Surgery team all agreed that there would be no reason to put Owen through the STEP procedure at this point, even though he qualified, because he hasn't even been on TPN since he left the NICU. The surgeon said that he knew Owen's history with surgery, and since Owen takes an extra long time to recover from anything, Owen might not do very well and the surgery could do more harm than good. They would like to keep watching him and keep the STEP procedure in the back of their mind. Yay! Such great news!

The GI team reviewed Owen's growth chart when considering TPN for him. At this point, they realized that Owen has not plateaued in his weight gain at all. He has had many set-backs (the biggest of which was his mic-key, g-tube surgery where he lost over 3lbs in just 3weeks) and still seems to begin gaining weight when he is well and at home. He DOES gain weight, even though it is hard to see. Looking at the chart you can tell, he gets sick, looses weight, and then gets better, goes home, and starts to gain again. It is slowly but surely. He is not on the chart for his age group in weight but he is not too far under it.

These past couple weeks I have been getting my mind set on Owen being in the hospital one more time, getting him set on TPN, and coming home with a whole new set of things for me to care for. I have made plans for where the sterile equipment would be in kept in our house, I have thought about dressing changesnd worrying about a central line and not getting an infection. I am so glad that, at this point in his life, we will not have to worry about all these things anymore! We are so blessed to have such a fighter for a son.
So, for now, Owen will be continuing his schedule as usual. We will be working on getting his formula to a higher calorie per ounce and we will be working on condensing his feeding rate. yay!

The most wonderful thing about Owen - even after all he has gone through, he is such a happy baby and even . . . wants to eat orally!! lol

pictures of Owen enjoying some watermelon!