I'm still here !!

Well its been a few months since I last talked to everyone. Since my B-day things have been a little rocky. I went back into the hospital on May 20th with the same problems I was having back in November/December last year. I only had to stay for 11 days this time. They did another cardiac cath and put in 44 more metal coils in my chest. I don't think there is any more room in there for any more. I ended up being sent home with a chest tube, but it came out only a couple of days after being home. I got really sick that following week end and almost got sent back to the hospital. My mom and dad worked very hard to keep me hydrated, healthy and out of the hospital. After a few scary days with a fever I started getting better. The most amazing thing happened then. When I started getting better I started eating and now I am eating everything in sight. Guess what, I also am up to having 6 teeth. I have all four of my front teeth, plus 2 molars, one on my upper left and one on my lower left side. I am working on gaining weight and then maybe I can get rid of this G-Tube. I had a check-up yesterday in Eugene and although I am showing some fluid build up they are going to let us try and take care of it with medication. So no chest tube this time. Well I will try to keep everyone up to date. I appreciate all your thoughts and prayers it has helped a lot. Love Ayden

1 year old

Well, I made it. I am a whole year old. I had the best birthday. We had a big barbecue at a nice park, on a nice day. All my family showed up, plus I made some new friends. I got my own birthday cake, which I had fun with. I got lots of presents, which was nice. Thank you to everyone who came. I also got a new tooth in. My upper left front tooth is poking through the gum, so now I have 3. I still doing really good. I have a couple of doc appointments coming up, one in Eugene, and another in Portland. Nothing major, just stuff to do with my Mickey, not my heart. My heart is doing great. Mommy and Daddy will put some pictures of my party on here soon. Well, just thought I would drop you all a line. Love Ayden

Home Sweet Home

Well, Mommy, Daddy and I got out of the hospital today, after just two days. I didn't even know that was possible. I thought it was mandatory that you had to stay for a week or longer, being as how every other time but one has been that way. LOL. Big brother was happy to see us, I sure missed him. He is my best friend. Anyways, I am a very happy guy, who no longer has a garden hose growing out of my nose anymore. My cheeks are already getting better and I am just a bit sore from the surgery. The area around my MIC-KEY (G-tube) is sore, especially when it gets turned. Mommy and Daddy are being really careful picking me up and if they hurt me, trust me, I let them know. We are probably going to go get pictures done, sometime around my birthday, which will be awesome. Just gotta give my cheeks some more time. We are also going to have a bar-b-q for my birthday, starting about 1 pm. Everybody who wants to come see me is invited. If you are going to come, please call Mom or Dad at 541-860-5986 to let them know. We would love to have you. If your looking to get me something for my birthday, any clothes or pj's with button up fronts, 12-18 months will work, but no zippers. Onesies are also good or you can just get me diapers, size 2 or just wipes. Well I need to sleep to mend. Love Ayden

I look like a turkey!

Well I had my surgery today and everything went really well. The procedure took less time than it did for me in post-op and the recovery room. Like I said, this thing in my tummy looks like a cross between a water spigot and a turkey timer. It has kinda the same connection as my NG tube, but the nice thing is that it disconnects from the button that is on my tummy. I don't have to be hooked up all the time and it also needs to be washed once a week. We hopefully will be leaving on Thursday, if everything goes well. I can't have any food today but tomorrow, we are going to start working on getting back up on my feeds. So anyways, wish me luck. Love to you all. Ayden

Another Surgery. What is that, like 4!!!

Just me and my big brother hangin out, watching the Spongebob!

Well, the time has come for me to have another surgery. This one has nothing to do with my heart though, believe it or not. This surgery is to place a G-tube into my stomach to feed me, instead of using that stupid NG tube in my snoze. Once the G-tube is in, the other tube goes buh-bye. Then everyone can see how much cuter I am, without the dang tube getting in the way. Also, Mommy says we will finally be able to get proffessional pictures done. This procedure only takes about an hour. It is going to be done next Tuesday, April 7th in Portland. They could of done it at River Bend in Springfield but with my heart problems, well better to be safe than sorry. But I do not plan on being there for very long. A couple of days tops. I am drawing the line, putting my foot down, closing the door, whatever you want to call it. Can you believe it, I will be one year old next month. I still don't know what I am going to do yet, but the trip to Vegas I wanted to do I think is out now. Dang!!! Ah well, Dad's birthday is exactly one week before mine but we are not celebrating it together. I will let everyone know in the coming weeks what we are doing for my party. Well I will talk to you all later, I have been a little under the weather lately and I need more sleep. Love you all, Ayden

Hello!!!

I just wanted to say hello to every one and give an update of whats going on. I have been struggling with the eating thing. My parents and the feeding specialists decided it would be in my best interest to get rid of the tube in my nose. Instead I will have a G tube which is a feeding tube surgically implanted into my stomach. It sounds worse than it is but hopefully this will help my esophagus heal and I will be able to swallow food a lot easier. After the new tube is in they will do another test to check my swallowing techniques. I will finally be able to get rid of all that tape that irritates my face. Yeah!!! On a brighter note I have gained a lot of weight. I am 14lbs and 5ounces. The doctors are very happy with my weight gain and they even discontinued some of my medications. I am very happy. I smile and laugh all the time. I am rolling over and sitting up I even have a few teeth. I love you all and thank you all for your support.

Feeling like a million bucks!

There is some meaning to the title. Every insurance policy has a lifetime cap for each person on the policy. On Daddy's, it's a million bucks and yup, I have hit it. Anyways, I am doing really good. I have only had two problems since the last time I wrote everyone. I had a head cold for a while, no fever or other symptoms, just real congested. But I am over that. The other thing is kinda embarassing. I had really bad diarrhea for a few days, but I think I am over that too. This did cause me to loose a little weight, but I am hoping that I can put that back on quickly. I have not been doing the bottle, Mommy and Daddy gave up, but I have been eating toddler food like a champ. I think this has helped me, because I got my first tooth Sunday. It is on the bottom, on my left side. It's just barely poking thru, but it's there. I love the Gerber finger foods, especially the cheese and other flavor puffs. I would eat those all day if they would let me. I have also discovered that I like pears, avocados, ranch dressing, and some Gerber baby foods like ham in ham gravy and chicken in chicken gravy. I am barely throwing up anymore and I am also taking 27 calorie formula thru my tube feedings. I am not on breastmilk, it's just water and powder. I also love to drink stuff like cran-ras juice, pop (not too much though) and other juice. I will get Daddy to post some pics of me on here in the next few days. He has some of me that he says I look like big brother. Anyways, I love you all and I am sorry it has been so long since you heard from me. I hope you all have not forgotten about me, because I have not forgotten all of you. Love Ayden

So far, so good

Well I made it a whole week without any real problems. The only problems I am having is that I am spitting up a bit more because Mom and Dad increased my calories in my formula from 24 to 27, and they are also trying to get me to drink from a bottle, which I don't like. But can you blame me, back when I was first hospitalized, the nurses would give me a pacifier every time they were going to poke me with a needle. So now, I want nothing to do with any kind of rubber nipple. But Mom and Dad are trying to get me to try all kinds of different baby foods, drinks and even a sippee cup. I have a bunch of doctor's appointments coming up and I also have some specialists who are trying help me with bottling and eating, so I am going to be busy. Well here are some pics of me being my cute self. Enjoy them. Love Ayden

Light at the end of a really long tunnel

Well here it is, the news everyone has been waiting for. I am finally going to get discharged, on Tuesday. This has been a slow, slow process and I am finally getting to leave. Dad has been here with me the entire time and Mom, on her days off from work. There is alot of stuff that has to be done, so bear with Mom and Dad about coming to see us. I am still on a slew of meds, I am on a new, strict feeding regiment and I will also be getting help from outside specialists to get me to start drinking from a bottle and even maybe eating some baby food. On a bright note, I rolled over today for the first time. Mommy and Daddy and brother are so proud of me. I am getting to be such a big boy. Here are a few numbers to throw at you.

Total number of hospital days since birth: 127 days (IF I get out tomorrow!)
Total number of days I've been alive: 263 days (Including tomorrow)

That is almost half of my life in the dang hospital. That is 4 holidays, and both of my grandpas birthdays, and two aunts and an uncle's birthdays. Anyways, just thought I would let everyone know how this has affected my life and what was going on. Wish me luck. Love Ayden

I will get home someday :(

So it looks like I have kicked the kylothorax and plural effusion problem (build up of fluid in chest cavity). I should be home sitting in the recliner and watching cartoons with big brother but, obviously I'm not. What is keeping me in the hospital now is my dietary issues. I keep puking up my formula and I'm not gaining weight. The doctors are not comfortable letting me go until I can gain weight. The worst part is daddy got really sick and couldn't take care of me. He was so sick he couldn't keep anything down. Thankfully Aunt Tricia came to my dads rescue and even stayed the night on Tuesday night until mommy could drive up and take care of me. Mommy got here at about 9am on Wednesday morning and sent daddy to Aunt Tricias to get better. In the mean time I have a fever but I don't think its anything serious. I also had whats called a Barium Swallow test they put some stuff in my tummy to watch how it works and they also got me to drink some of the stuff from the bottle. I liked the taste of that stuff it tasted better than my formula. The good news is the test showed that my tummy and intestines are doing great. My esophagus(throat) on the other hand isn't passing the liquid through very quickly it is hanging out in there. This could be a reflux issue so they are increasing my acid reflux medication. They also think I might have a hard time digesting milk protein. I am on yet again a new formula that smells really nasty but I think it might do the trick. Well that's a lot of stuff but we are moving in the right direction. I hope to be home really soon maybe early next week. I miss everyone so much. I will talk to you soon love Ayden.

Slow and Steady... Sort Of

Well, I haven't had anything to really write about for about a week. Christmas was pretty uneventful. Santa came by and I got some cool presents, then after that, it got back to the usual drab. Friday, Grandma and Grandpa and Uncle Garrett and big brother showed up. I was pretty happy to see them. Saturday, Dad took brother and Garrett to the movies and Grandma and Grandpa watched me for a few hours. Later, after they left to go home, Mommy showed up, so I was happy again. Then on Sunday, Aunt Tricia came and saw me. I played with her for while. On Monday, Grandma Sam came up and saw me, and to hang out. She brought more presents for brother and I. On Tuesday, they started me on feeds at 20 ml/hour. Over the course of the day, they increased the feeds up to 25, then 29, and finally 32. I was on that overnight and did fine, but then the next day, I started puking up. This is not abnormal for me, but to be doing it on such a small amount is not necessarily good. The docs have been toying with my feeds and the amount. As far as my vitals go, they look great. If they did not, I would probably be having a relapse of my fluid in the chest. So for now, we just keep at this pace and hope for the best. Happy New Year everyone. Love, Ayden.