Wednesday, April 24, 2013

Pop goes the g-tube...

Well Ollie decided he needed to visit his second home last night. Jason and I were just chatting away when Ollie decided it was necessary for him to wrap his little monkey toes around his g-tube and yank it out! Can you say...OUCH!!! Jason and I heard a loud pop and just knew that he pulled it out...ugh! I quickly washed up and grabbed the replacement kit, but of course the dang replacement tube wouldn't go in, so I placed a smaller temporary tube until we could make into the ER. Once we were down there, the doctor tried to place another g-tube and he was unsuccessful, which honestly made me feel better because I didn't look like an idiot when I told the doctor that the tube wouldn't go back in. They dilated Ollie's stomach to stretch it back out to put a new tube in. Once they did that we were golden! I'm sure it wasn't pleasant for Ollie, but he was a trooper as always!

Friday, April 12, 2013

Keep Calm and CHARGE on

I am learning so many new things about CHARGE syndrome! I joined a group on the Internet with other parents who have children with CHARGE syndrome! It has been a true blessing. It's like going to Kindergarten all over again...I have found my group of friends that I belong with and have the same interests (our sweet, little CHARGErs). I can only get so many answers from doctors, but these parents have been living with these children 24/7 and have the honest answers. For instance, I found out the other day that CHARGE syndrome heightens your sense of touch, which is understandable due to their lack of other senses (vision, hearing, and smell). It is difficult for them to touch a new surface such as grass or going from carpet to wood flooring. I had never even thought of this nor did doctors even mention this to us.

These parents know exactly what I am experiencing on a daily basis. They are so open and willing to support you in anyway! It is exactly what I needed to add this journey. All of children have their own stories and a wide-range of daily struggles, but they are all so amazing!

Thursday, April 11, 2013

<3

Yesterday (April 10), we had a follow up with the cardiologist. They did an echo to check on his heart issues and make sure the flow and leak haven't worsened. It was a nice, smooth appointment for a change...nothing new has come up! The only thing that would have been better is if they told us by some miracle his heart was fixed and there would be no need for open heart surgery! The doctors have well prepared us for reality though, as he grows he will only get worse, but for now he is good, so I can smile an go about my day! :) Fingers crossed and many prayers that Ollie will make it until sometime this fall for surgery! It is all up to the little bugger!

Wednesday, April 10, 2013

Gulp gulp!

On Monday (April 8), Ollie had his first swallow study. During the study, they had him drink barium so they could see him swallowing on the X-ray. He sat in a baby recliner...literally just needed a cold drink, popcorn, and a tv! He had it made! I gave him a few swigs from the bottle, but he aspirated. Then we thickened up the bottle with rice since sometimes babies swallow better if consistency of the milk is thicker. Ollie still aspirated on the thickened milk, so no oral feedings for him as of right now.

Saturday, April 6, 2013

2 months old

Ollie is already 2 months old...crazy!!! Ollie weighs 6 pounds 9 ounces right now. Considering all things, Ollie is doing quite well. He is having troubles gaining weight, but this is very common in babies with CHARGE and babies who suffer from heart defects. In the past week, he has started doing labored breathing. It totally freaks this momma out! We have an appointment with Cardiology this week to check on his heart and maybe I can get answers as to why his breathing has changed.

Tuesday, April 2, 2013

CHARGE ahead!

This past Friday (3/29) our Geneticist called and told us Ollie's CHARGE syndrome test came back positive. CHARGE syndrome basically breaks down all of Ollie's issues and labels them. I had never heard of the syndrome until they diagnosed Ollie. Normally, only 1-2 cases of it are diagnosed a year at Riley. Honestly, we knew they were going to treat him as if he had the syndrome, but we thought it would come back negative especially since it only picks up on the mutated gene 60% of the time. I have mixed feelings on this because of the unknown road ahead. Scary in many ways, but ever so hopeful! I'm grateful to know....just nervous! We will as a family CHARGE ahead!!!