Stoma Pics

I tried so hard to get a good pic of Aidan's stoma (trach incision) but he would not cooperate. This was the best I could get. From what he let me see today it looks like it's healing nicely. I had initially covered it with gauze but found that it was locking in moisture rather than keeping it dry. He seems a lot happier since the trach removal. I think he really appreciates just being a kid and not having to be held down for trach and g-tube care.

As far as learning to breath through his nose, it's still a struggle. Practice makes perfect. He gets better and better each day and got up to drinking 5 oz from the bottle in one sitting. That's a big leap from 2 oz yesterday. I'm so proud of him. He is such a trooper.

Trach Free!

FINALLY! The trach is gone! What an ordeal it was but it is finally all over. Everything went smoothly. No complications at all. The day of the surgery and the day after were rough days. I don't know why it always works out this way but Rich had a final during the surgery and one the morning after the surgery so he wasn't with me hardly at all. It was nuts. This is Aidan on our way to the hospital.



Rich dropped us off at the hospital at 7am and Aidan went into surgery at 9am. At around 9:45 he came out of surgery and he was not a happy camper. I've heard that coming out of the anesthesia is pretty rough so that would explain why he is always so angry.
Right before they took him back for the surgery.

In the pre-op waiting room we met this sweet little girl named Ellie. She had a trach too and came right up to us to meet Aidan. It's so rare to see another child with a trach so I instantly bonded with her mom. We had a lot to talk about. It made me sad because she started to cry when she found out that we were there for a trach removal. I can understand how she was feeling. The good news is that I spoke with her after Ellie's surgery and found out that after waiting for 6 years Ellie is ready to get the trach out too! Hooray for Ellie!!

After the anesthesia wore off completely Aidan was up and ready to play. He was back to his old self in less than 2 hours...breathing on his own!

Life without the trach has been AMAZING! There are so many things that parents take for granted that I will forever be grateful for. Last night, our first night home, I asked Rich to put Aidan to bed. He sighed... Then he got up and a light bulb went on. Wait a minute...That's right! No long process of suctioning with saline. Put him to bed. Go back and suction again. Wait until he falls asleep and then sneak in and put a "nose" on the trach. He just took him to his room, sang him a song and put him to bed. That was it! We are very happy and Aidan is doing fantastic. He is enjoying his voice a lot. Thank you so much to all of you that have kept our family in your prayers.

Day before the BIG DAY!

Can't believe that it is actually going to happen! The trach comes out tomorrow!!! We are beyond ecstatic. All day today when I would suction him or change the gauze or lug around the suction machine I kept saying to myself, "LAST DAY!" It's really hard to even imagine what it's going to be like to not have to worry about the things that we've been constantly worried about for the past 15 1/2 months. Just so happy. Anyway, this was our last day with the trach and it was a fun and busy one. First thing this morning we went to the doctor for a pre-op appointment. Just had to get Aidan checked to make sure he is healthy for the surgery. Then we went to the park for a play date.

Aidan with his pals. They are all within 2 months of each other.


Last pic of the day, taken right before I put him to bed tonight. Our appointment is at 6:45am so I got him dressed and ready to go so we can just wake him up and go. He should be in the operation room at around 10-10:30am so please keep him in your prayers. The next pictures you see of him will be trach free ones. What an exciting time. How blessed we are.

pH Probe...blah

Fhew! Thank goodness for the end of a tough day! Today Aidan had to get the pH probe put in. I explained in an earlier post that the last pH probe didn't work the first time it was done so we had to do it all over again. For those of you who missed that post a pH probe is a wire that is put in through the nose, goes down the throat and into the stomach. The other end is connected to a monitor that records the pH in his stomach so that we can know if he has any acid reflux. He has to have it in for 24 hours. This is a requirement before he can get the trach out on THURSDAY!! We are so crazy excited. It stinks that he's had to go through so much to get to this point but it is almost over. I just want to warn you that there are a lot of pictures coming up...

Right after the probe was put in :(

It was really sad to watch.

After all of that he still wanted to give me kisses. Sweet boy.

Since the monitor wasn't designed for him to be able to carry it around I had to put the pack-n-play in the living room. He was going to have to stay in it most of the day :(

I thought maybe it wouldn't be so bad if I gave him toys and put on some cartoons but after about 30 minutes I decided there was no way I was going make him stay in the pack-n-play.

So I started trying to think of a way to make it possible for him to carry the monitor around while he played. This was my first attempt which failed miserably. My second attempt was putting it in a boppy case, compliments of my sister-in-law Rebecca, and tying it across his shoulder. Failed. I tried like 2 other things after that. Failed.

Finally I did it! I got a pair of pajamas and put the monitor in them and buttoned it up. I tied the legs to the arms and made him a little backpack! It worked perfectly! He crawled all over the place with that thing!

He didn't mind it one bit. I'm sure there was a simpler and better way to do this but what can I say. You work with what you've got. We are learning to make lemonade when we're handed lemons. So here is the update: Tomorrow morning the pH probe comes out. We get the reflux results on Wednesday and the trach comes out on Thursday!!!!!!

Just throwing in this cute pic of Maya. This is what she did while I was trying to figure out what to do about the monitor. She is such an amazing baby.

Black Friday-N-Stuff

I'm bummed to say that we really didn't get any Thanksgiving pictures this year :( We spent Thanksgiving at my cousins house which isn't very "baby friendly" so most of our time was spent making sure Aidan didn't destroy her house or hurt himself. Pretty stressful! But we did have a pretty good time.
The collage of Maya is of pictures that I took yesterday. She gets cuter and cuter each day so I've been taking lots of pictures because I don't want to forget any of it. The good and the bad moments :)

We decided that we wanted to go shopping on Black Friday for the first time ever for either of us. It was lots of fun...for the first 2 hours, then it got kinda frustrating. We had a good time though and found some pretty good deals!

Aidan in Best Buy right before he pulled the valve off of his trach and threw it without me knowing. I noticed it was gone when we were going to check out. We had to retrace our tracks through the crowds to find it under some stuff in an aisle. Craziness!

HUGE line in front of BrandsMart. We didn't go in.Yesterday I had just set Maya down after feeding her and her bow fell out of her hair. Aidan rushed over and tried to put it back in her hair. It was so cute! He has become so observant. He has just recently learned that if he covers his trach with his chin he can make noise. He also tries to put on the passi muir valve and artificial noses. Such a funny kid. Gotta love 'em!

Fun In The Sun

Today we went to the park with some friends and had such a great time. Then we ran some errands and went home. Today is a little different than most days because Rich had to go to work. His shift starts at 9pm and should end around 2am but who knows. It's his 1st night so wish him luck! Hope everybody has an awesome Thanksgiving tomorrow.

Luckiest Girl In The World!

I had lots of laundry to do tonight so I had lots of time to think. I was thinking about Rich as I often do. I was thinking about what an amazing person he is and how lucky I am to have him as my best friend. Whoever said you can't have your cake and eat it too was lying. I thought everybody should know just how incredible Rich really is.

He is sooo much fun! He will always humor me when I want him to do silly things with me. Never to proud or macho. All of my friends out here were jealous because Rich read Twilight with me. One of them said she wanted to clone him. I love that he loves me enough to want to share my interests.

He is always willing to help anybody. He has such a good heart. I can't tell you how many movie nights we've stopped right in the middle of a movie so that he could help somebody in his family with a computer problem, research something or even just look something up. He helps people without asking or expecting anything in return. I love that about him.

For almost an entire year Rich would get home from work and make dinner while I took care of Aidan. He never once complained. He has always been great about lightening my load when I feel overwhelmed. A lot of the time he will clean the kitchen before he goes to bed so that I'm not stressed about messes in the morning. He still opens the car door for me. He calls me during his breaks at school just to see how I'm doing. He always tells me that he loves me and makes me feel beautiful. He still gets a thrill out of randomly surprising me. I love him. He's my best friend.

Happy 2 months Maya!

Maya is 2 months old today and just as adorable as ever! She is super smiley and almost always happy. She is such a good natured baby and we enjoy every single day with her.

Well here comes the ugly truth. Having 2 babies is hard! Especially when the oldest is 15 months old! I try not to complain too much because I truly am blessed with incredible kids but boy do they keep me running! Tonight I was running around like crazy trying to get the kids fed and ready for bed. In my haste I left the bag of cheese out on the table. Aidan loves cheese. So while I was getting Maya dressed he reached up on the table and grabbed the cheese. I saw him before he made too big of a mess but decided it was just too cute to interupt so I grabbed the camera instead :)

Just thought I'd throw this one in. G-tube is gone! Now he has 2 belly buttons!

What the big kids have been up to...

This week Rich has been working every night from 6:30pm-12:30am. That's right, working. We are super excited that Rich got a job working for Delta. This means that we get FREE FLIGHTS! This week was training so he had to go in every night but starting next week he will only have to work 5 hours a week on Tuesdays. I'm excited that I will be able to fly right into Springfield to go visit my family in Branson whenever I want. We are both REALLY excited to be able to travel the world for the next 4 years! Rich doesn't have school during the summer so we have already been talking about all of the places we want to visit. Florida has truly been a dream. Everything has worked out so perfectly for us in every way. It's one of the best decisions we've made. We love it out here.

And then there's TWILIGHT! We've both been reading it and loving it. We are looking forward to Aidan getting the trach out so that we can get a sitter and go on a date to watch the movie. Awesome book.

Maya's Paci

I'm convinced that I have the cutest kids in the world. Maya is such a happy baby and Aidan seems to love her more and more each day. I can't believe that even though he is so young he is very aware of her and wants to make her happy. Yesterday I was eating breakfast and looked over to find Aidan trying to give Maya her pacifier! Of course I had to get a picture and I am so glad I did. Then later that day he was putting his face right up to her face and laughing each time she would turn her head. He was playing with her! I just can't wait until she gets a little older and they can play together. I am so happy that they are so close in age. As you can see in the picture he has a suction catheter in his hand. He is obsessed with them and always seems to find them when I'm not looking. Anyway, a couple days ago I caught him holding the catheter up to Maya's chest. He was obviously trying to suction her. Made me smile at his innocence in thinking that everybody has a trach. Children are so special and I'm grateful for my two little angels.

G-tube Removal!

Yep, back in the hospital for another surgery. The doctors visits and surgeries seem never ending sometimes but this one we had been looking forward to for a very long time. On Monday the 17th we went in at 7:30am to prep Aidan for surgery at 9:00. Well, things were rough from the very beginning. Apparently there weren't enough recovery rooms so we had to wait until 10:30. You can imagine how hard it is to entertain a 1 year old for 3 hours in a hospital room.

Getting bored...

Good news is that we wore him out with all of our playing around that he fell asleep so I was able to carry him right into the operating room and lie him on the table and watch as the anesthesiologist put him into an even deeper sleep.
We took one final picture of the g-tube to remind us of the things we so often take for granted. Many tears were shed during the process of teaching Aidan to eat. I was so happy to see it go.
Aidan, once again, was furious when he came out of surgery. I couldn't blame him though. He had these casts on his arms to keep him from bending his elbows so that he wouldn't pull out the probe that they put in his nose, down his throat and into his stomach.

The pH probe was connected to this little monitor to check for reflux. Because of the chance that he might pull the probe out I had to spend the night at the hospital with both kids. What a nightmare that was! I only got 2 hours of sleep because I had to stay awake if Aidan was awake to make sure he didn't pull the probe out.

He did not sleep well in the hospital at all.

Maya, on the other hand, slept like an angel most of the night. It almost seem like she knows that she need to be low maintenance when we are at the hospital for Aidan because for the most part she sleeps through everything. She is so funny. Anytime she gets a little startled when she is sleeping, she tenses her arms and spreads out her fingers. She cracks us up.

So, we survived the night and were discharged the following morning. I was soooo ready to go home and soooo happy to be done with that...so I thought!! The next day we got horrible news. The monitor was defective! It didn't record ANYTHING!! Yes, this does mean that we have to do it again and yes I did cry.

Maya wasn't too happy about it either. The good news is that the g-tube is gone. Only one more surgery to go. The trach removal is scheduled for December 4th.

Update: 6-18-11 ~ I've noticed that several people have been led to this blog post by googling "g-tube removal". Since this post Aidan's trach was removed and I had another baby that also had a trach. If you have any questions or just need support, please leave a comment with your e-mail address. I would love to be a source of support and help in any way:)