Ayden

Hello!

2010-09-02T02:52:00.000-07:00

Hi I haven't posted for a while but I am doing great. I am keeping my parents busy and walking up a storm. Had a few rough times at the end of May beginning on June. I ended up getting pneumonia and having to stay at Mercy for almost 4 days. I did okay for about a week then I got a double ear infection and pink eye. Like I haven't been through enough already :) I went on my first camping trip this summer and I love throwing rocks in the river. I kept everyone very busy chasing after me, and the doctors said I wouldn't have a lot of energy HA HA tell that to my very tired parents. I am doing so great I am now at 22lbs and still gaining I have been able to reduce the amount of times a week I have to be plugged into my feeding machine. Yay me I like food!! I have an appointment in October maybe I will find out when I have to have my next surgery? I hope everyone is doing well and I will try and post some recent pictures so you can see how big I am getting. Talk to you soon Love Ayden.

Happy New Year!!! Oops my bad.

2010-01-26T14:56:00.000-08:00

Well as you can see, I am still alive. I had a rough but good half of last year. I now weigh over 18 pounds, and I am just about to walk. I am a talking machine though. My favorite word is yes. I seem to have gotten over my phobia of other people. I ended up getting H1N1 in October but luckily Mommy and Daddy are on the ball. They kept me out of the hospital, hydrated and I was feeling better in no time. Big Brother and Mommy also got that crud too. Daddy lucked out. I had a great Halloween. I dressed up like a duck and I was adorable. Thanksgiving was good, I got to spend that at home and at my great grandma's house. Christmas was the best. I have never seen so much loot in my life. I went to my great grandmas on Christmas Day and then went back home, where I spent it with my Mommy, Daddy, Big Brother, gamma, nanna, papa, aunt tissie and uncle g. So far this year, I have gotten sick once with a fever for a few days, but otherwise I am doing good. I have a appointment with the Feeding Clinic in Eugene next Tuesday and a sedated Echo on the 31st of March in Portland. Other than those, no doctors unless all is not well. Well got to get back to terrorizing my parents and brother and getting into everything I can get my hands on. Love you all, Ayden.

I'm still here !!

2009-07-08T06:58:00.000-07:00

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

2009-04-26T22:00:00.000-07:00

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

2009-04-09T23:18:00.000-07:00

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!

2009-04-07T18:13:00.000-07:00

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!!!

2009-03-31T01:11:00.000-07:00

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!!!

2009-03-18T07:15:00.000-07:00

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!

2009-02-25T23:37:00.000-08:00

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

2009-01-22T21:46:00.000-08:00

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

2009-01-12T16:21:00.000-08:00

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 :(

2009-01-08T12:21:00.000-08:00

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

2009-01-01T13:05:00.000-08:00

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.

Pretty Happy Boy

2008-12-23T22:00:00.000-08:00

I am such a big boy!

Hard to believe there is a
car under that, isn't it!

Hi, did somebody order a Christmas Ham?

Peek-A-Boo

Well as you can see, I had a pretty good day. Unfortunately, Mommy had to go home today, to go back to work. It took her all afternoon to get there, cause of the weather. But she will be back on Saturday, weather permitting. Speaking of the weather, while we have been here, Portland has had more snow in the last week or so than it has seen at any other time in the last 40 years. Crazy! So, moving on, Mommy and big brother will get to see each other on Christmas Eve after Mommy gets off work and Daddy and I get to hang out in the dumb old hospital. But at least Santa is supposed to make a pit stop here Christmas Day, so big brother and I will get some good stuff. Hopefully, this weekend, I will get to see big brother, Grandma Penny, Grandpa Ron, Uncle Garrett, Grandma Sam and of course, Mommy! :) Well as far as my health goes, it's running it's course. I am on a slew of meds, including IV fluids. They have me on that, so the problem I keep having will heal and hopefully stop being a problem. I don't have any idea when I will be going home yet, but maybe by next year. :) Well, I am pretty worn out from being so darn cute. I want to wish everyone a Merry Christmas and that I miss them and love them. Love Ayden.

P.S. Check out my links for the Elf Dance. It may take a minute to load, so be patient. It is worth it to see my family "dorking out".

Back on 9, Unknown Direction

2008-12-17T17:39:00.000-08:00

Well, we got moved back up to the 9th floor this morning. Last night was rough for a while at one point. My chest tube clogged up and wouldn't drain. Mommy fiddled with it and got it to start draining. Then we had the nurse come in because it stopped again. She changed the connector on the tube because it had a clot in it and lo and behold, immediately 35 mls drained out in like 10 or 15 minutes time. After this, I started to do alot better. I am still having good wet diapers when they give me the diuretics. I have also been doing quite a bit better as far as being awake and happy. Today, Santa Claus was at the hospital and I got to see him. I also picked out a present for big brother. I know he will like it. Well, we are just going to play it by ear for the next few days and hopefully we will get to go home soon. Wish me luck. Love Ayden.

This sucks!

2008-12-13T13:12:00.000-08:00

So, On Tuesday I was moved upstairs to the 9th floor. I was doing ok, but my urine output has slowed up considerably, which is not good. I was switched to all oral medications except the Ativan. Apparently, messing with changing them and also changing from one drug to another did a number on my system, because Thursday morning, I was having problems with getting rid of the fluid and also I had lots of phlegm that I would swallow and then cough it back up, which was not good. This made me really upset and cranky. So Friday night, I started breathing heavier and at 1:30, they did a X-ray. They also gave me a IV dose of Lasiks and that helped me pee, and get some of the fluid off. I was still having problems with breathing and my x-ray showed a build up of fluid on the right side. Guess what happened next, yup a trip to the ICU and a new chest tube. Well it is now Monday and things have gotten even worse. I lost my Picc line which is the only IV that I had and it took them a very long time to even get that. They are trying to get a new line in lets hope it works. I have had a fever off and on for the last day or so and now they started me on antibiotics, to catch it before it gets bad hopefully. And to add insult to injury, big brother is sick with strep throat. This week has been great so far and it is only a day and a half into it. Well I gotta go. Love Ayden

Ho Ho Ho Merry Christmas Ayden Clause

2008-12-08T04:53:00.000-08:00

So I've had a great last couple of days. On Saturday, I got to see my Grandma Penny, Grandpa Gary and Carolyn. I was in a great mood all day, smiling and playing and laughing. I was still on the SiPap machine, but the docs wanted to start weaning me off of it, so they started doing that periodically. They would put me on the high flow nasal canula for a hour or two, then put me back on the SiPap. Every time they did that, I got really angry. But, by Sunday, I was off of it completely and I have been doing great. My chest tube is not putting out barely any fluid and my last X-ray looked great. They have got me on IV feeds only and some oral meds, but that is all that goes into my tummy besides water. Sunday, I got to see Grandma Sam and she brought me a little Santa oufit. I only got to wear the hat, but even then, I looked pretty darn cute. Well, the docs were talking about possibly moving me upstairs on Monday. Hopefully that will happen, because that means that I am closer to going home. Keep your fingers crossed for me. Love, Ayden.

A little bit better, but not out of the woods yet!

2008-12-05T23:11:00.000-08:00

So, I haven't written in a while and thats because the nurses and docs have been keeping me hopping. They've given me several types of diuretics, including diarill which works wonders on me. Since I have been getting that, I have been getting rid of fluid like it was nobody's business (except mine). After having a X-ray and a ultrasound done yesterday, Doctor Langley decided to put a chest tube in my left side because of a large effusion I had. They did it this morning and so far, I have had about 90 mls come out of it. Also I finally got to see big brother today for the first time since Friday of last week. Man I missed him. He was being his usual goofy self. I have been getting Ativan when I get cranky and that does wonders for my attitude. I was playing and kicking and smiling at Momma and Papa and Aunt Tricia tonight after getting that. I am looking forward to getting to see my grandmas this weekend. Overall I am better but not even close to going home. Well gotta go, Love Ayden

Doing ok, but more stuff to be done

2008-12-02T15:23:00.000-08:00

Well, Monday night, Mom and the nurse gave me a bath, which made me feel better afterwards. I was the most active I had been since I was at home on Thursday. I was smiling and laughing at my goofball dad and kicking my feet and playing with my toys. They put me on a high flow nasal canula, which provides humidity to my nasal passages as well as O2. I was able to breathe easier after this and not have to work as hard, so I was less tired. This morning, they had to get blood, so I think between that and trying to get a IV started because the other one I had blew, I got poked at least 5 or 6 times. Then they tried to get a line in through my groin, which was a sterile procedure, but all that ended up being was a arterial line through my femoral artery. So it is good for blood draws, but no meds or other fluids through it. I was still in a good mood this morning because I got some much needed sleep last night. I also had another Cardiac Catheter done this afternoon. They were going in because I still have some narrowing in my Aortic arch and also what they call collateral blood vessels in my lungs. To fix these, they put tiny coils on them. I went in for this at 2:30 and did not get back from this until 11:00 last night. The first few hours was them getting a PICC IV started and giving me the drugs to put me under, so they could this. When I got back, the nurses gave me Morphine for the pain. Well I really need some sleep, so I will talk to later. Love Ayden.

Good mood, weird day.

2008-11-30T19:50:00.001-08:00

So this morning, they did a X-ray like they always do. Well the results showed that the effusion on the left side was almost gone and that the right side had just a little bit. They decided to put a chest tube in anyways to get rid of the right effusion. Most of the liquid was gone due to them giving me extra Lasiks and a dose of another diuretic. My lungs still kind of looked patchy with fluid. They put in the tube and I was very unhappy for a while, but they gave me a little Morphine to calm me down. After that, I did ok most of the day. Later on, it looked like I was breathing pretty hard still. They had done a ultrasound and haven't got the results on that yet. They also did another X-ray and that looked great, just the stuff on my lungs. So I just need to get rid of the goo in my lungs and then I should be feeling alot better. Oh yeah and once they get rid of the tube too. Anyhow, time to get some more sleep. Love, Ayden.

Totally not wanting to be tubular!

2008-11-30T07:06:00.000-08:00

So, they did an X-ray on Friday when we got here, and then did another one Saturday morning. The docs said they looked pretty much the same with only minor differences. Then I had a bad episode of respitory distress in the afternoon. It took me awhile to calm down and Mom and Dad were very scared. The docs did another X-ray and said that the effusion on my left side had gotten bigger, therefore they would have to ship us down to the PICU and have a chest tube put in. They were going to call in Dr. Langley but decided that I was not in dire need of the tube right away and that I was for the most part stable as far as my vital signs go. So they decided to wait till Sunday morning. If this works out, we should get moved back upstairs today, I think. Anyways, just thought I would let everyone know what was up. Love to everyone. Oh yeah and GO DUCKS!! (that was for Uncle Gary and Grandma Sam)

So much for a good Thanksgiving

2008-11-28T22:45:00.000-08:00

Well, on Wednesday I started having breathing issues and so Mom and Dad were watching me carefully. On Thursday, Happy Thanksgiving, I did not get better. So Dad called Doernbecher's and talked to a doctor. We tried giving me a extra dose of Lasiks, which did not work. So then Mom and Dad and I took a trip to Mercy's ER and got a X-Ray. They also got a IV started and gave me Lasiks through that. They let us go home with the intent on us going to the Doctors in the morning. So this morning, Dad took me and the doc examined me and talked to the doctors at Doernbecher's. They decided that the best plan of action involved Mom and Dad and I hopping in the car and driving back to Portland, again!!!

So here I am, sitting a hospital room, with a IV in my right leg, and another pleural effusion (that's doctor talk for build up of fluid in my chest cavity) on my left side now. They are giving me IV Lasiks, and saline through the IV and also giving me Aldactone (another diuretic) and potassium orally, along with my acid reflux med and methadone. They hope that giving me the extra diuretics will get rid of the extra fluid in my chest and hopefully will prevent me from having to get a chest tube put in. If this works out, keep your fingers crossed that it does, I hope I won't be here for very long, but if history repeats itself, I will be sending pictures of me wearing a Santa hat to everyone. NOT!!! Anyways, once again, Mom and Dad have had to drop everything, like work, to deal with this. I want to thank both Grandma's for taking care of big brother and also being there for Mom and Dad! Anyhow, wish me luck and I will be home before you know it. Love, Ayden.

Home Sweet Home

2008-11-23T00:44:00.001-08:00

Finally, after what seemed like forever, Mommy and I got home on Friday evening. So far, I have been doing really good with everything. I stay awake alot more, I am smiling and talking and playing with my toys alot, finally just getting to be somewhat of a normal little guy. The only cruddy thing is that everyone who wants to come see me has to get a flu shot on doctor's orders. I can't get sick at all. It would not be good. Anyhow, I am really tired and I am gonna hit the crib. Love ya all, Ayden

Droppin this place like a bad habit!!!

2008-11-21T10:25:00.000-08:00

In the words of Jar-Jar Binks, "Weesa goin home!" Mommy and I are finally getting to go home. Did you know, by law, Mommy should have changed her address on her Driver's License because if you reside in one place for one month or more and it's different than whats on the license, you have to change it. But it is okay cause she knows a few cops. ;) Anyways, I am in the best mood that I have been in in a long time. I am on less meds than I was after my surgery and also after I got discharged on Friday. Anyways, I also have more tests and two doc appointments scheduled in the upcoming months, so I will be very busy. Well got to finish packing. Love you all and thanks for your help. Love Ayden

This is getting really old!

2008-11-18T10:58:00.000-08:00

So, I got discharged like my last blog said. Dad and Big Brother show up on Friday night and I thought things would get better, but my body said otherwise. I was very grumpy and pukey all night, just ask Dad. He slept with me in one bed, so Mom could have a break. Saturday, I was pretty much the same. Nothing really made me happy, and Sunday, the same. I was somewhat better that night, due to getting some Pedialyte that Grandma Sam brought me. So Monday rolls around and we go in for the tests. My X-ray looked great, my blood work looked great, but the ECG worried them. Not anything to do with my heart or anything, but more with my blood vessels. So that along with my grumpiness over the weekend made them decide to admit me back in the hospital. At first, it was hopefully going to be for a 24 hour observation period, but now it sounds like it will be for a few days. They are taking me off all the diuretics, because they think I was getting to dehydrated and they also thought they were trying to ween me off of the Methadone to quickly. So once they have these problems figured out, hopefully that will be the ticket out of Portland. I think they should make a new Snake movie starring me, "Escape from Portland" I have the scars for the role already. Anyhow, wish me luck and thanks for all of your support. My whole family really appreciates it. Love Ayden.

Hopefully Home on Monday

2008-11-13T09:39:00.001-08:00

Well the doctor came in today and told Mom that my X-ray looked good, and that I would be discharged. But because we live so far away, he wanted us to stick around through the weekend and re-evaluate me on Monday. So, when we do get discharged, Mom and I will stay in a hotel and Dad and Big Bro will come see us after he gets out of school. I am so looking forward to this, as is everyone else. I really miss being home. Well just thought I would let everyone know. I gotta go pack. Love Ayden

Good news!!!!

2008-11-11T13:26:00.001-08:00

Well the last week has been stressful. There has been a lot of fine tuning going on and I think it has paid off. Today the doctors have removed the chest tube. This is a very big step. If there aren't any problems within the next couple of days I might be able to go home!!!!!! I am going to keep this update very short and not bore you with the painful details of this past week. I just wanted to share the good news. Love Ayden.

More good things than bad things

2008-11-05T23:41:00.000-08:00

So they did the usual daily x-ray and my chest looked worse than yesterday. I had fairly good vitals all day, aside from the pesky annoyances. My absentee father showed up before noon and I treated him to my handsome face smiling within 5 minutes of him being here. I sure do miss him and big bro. They did a ultrasound of my chest today because of how my x-ray looked and on it there was a small pocket of fluid, so we thought that might mean another chest tube. After review, the ruling on the field was overturned and Dr. Langley said, "Read my lips-- No New Tube!" Now to the bad things. My central IV line is gone kaput and is also leaking. This is not good. Dr. Woodward came in and tried to get a periphal IV line twice, with no luck. Usually he is on the up and up. The PANDA team came in and was able to get one in my right arm. They even had good flowback from it and got the labs they needed from it. The docs are worried that I might have a blood infection, so they are doing a culture to find out and as a precaution, started me on two antibiotics. But for the most part, today was fairly good. I was in a fairly good mood, I smiled lots for Daddy, Mommy and Aunt Tricia, plus stuck my tongue out for her too. She likes it when I do that. I was awake for quite awhile today and now I am really tired, so I think I will hit the hay. Love Ayden

My first Halloween!

2008-11-02T20:15:00.000-08:00

I am the most adorable pumpkin ever. Check out my fantastic pumpkin hat!!!! My Grandma Penny made me the hat and I am so adorable. I didn't get any candy this year but that's only cause I'm saving up for next year. All the nurses visited me and told me I was the best pumpkin they had ever seen. I wish I could have seen my big brother in his costume. He was a Clone Trooper from Star Wars. As you can tell I am a Star Wars fan. Well I wish that Halloween could have been fun. Unfortunately that night at 6pm they did a procedure called a cardiac catheter. It is a surgical procedure where they put cameras in major arteries and get a video of your heart and surrounding areas. They put whats called coils around two arteries in my lungs to hopefully relieve some pressure off that duct that seems to be leaking. It also will help create even better flow in my lungs. They're was a bit of a scare when I came back after the procedure (whats a good Halloween without a few scares) I developed a blood clot in my left leg and when my mom saw that my leg was purple she freaked out. It was okay though they gave me a blood thinner and things worked out. My leg looks fine and no clot. Well still working on the chest tube issue hope it gets better soon I really want to go home. Hope to see you all soon Love Ayden.

Can't Get A Break.

2008-10-30T21:21:00.000-07:00

I was doing a lot better Tuesday when they changed my chest tube. Things were looking good the rest of that day. Wednesday morning rolled around and my chest tube was not producing anything yet again. Mom did not get excited this time instead she thought there was probably another clog. Well my breathing got worse through out the day and it felt like a bad case of deja vu. They checked my chest tube and said that I didn't have a clog. My x-ray showed a build up of fluid still on the right side but in a different location where the tube wasn't reaching. Apparently I developed a pocket and all the fluid was now building up in there. On Wednesday evening my breathing had got increasingly bad. At about 3am Thursday they finally moved us to the intensive care unit with a plan to put in a new chest tube. The surgeons were so busy today that I didn't get a new tube until 4pm. By that time I was pooped. Luckily I am a fighter and the only breathing assistance I needed was a high flow nasal cannula with some warm air and a little moisture. I have been doing better since they drained it. They removed 230ml from my chest. that is a lot of fluid for such a small guy. On a brighter note I did get to see my daddy. I missed him so much. He even got to hold me. I was a bit cranky but who can blame me. Well I'm a bit tired so I am going back to bed. I'll keep everyone posted. Love Ayden

I hate chest tubes :(

2008-10-28T20:41:00.000-07:00

Well I had a really rough day today. It all started last night, my chest tube hadn't drained all day Monday. My mom was optomistic that maybe the IV meds were working and they might take the chest tube out and we could go home. Unfortunately late last night I started having trouble breathing. The doctors waited a long time before they got an x-ray it felt like forever. Finally after about twelve hours of very heavy breathing, which the doctors describe as equivalent to running a marathon,they replaced my chest tube. It had developed a huge clog. The doctors drained 150ml's from my chest. I started to breath a lot easier after that. Imagine running a marathon for twelve hours. I was very tired afterwards. I have been sleeping all day. This brings me to some more bad news. The IV meds have not worked therefor I am going to get a cardiac cath done and they are going to try and figure out if there is anything they can do inside to help me out. I am no longer aloud to eat anything they are stopping all traffic in my tummy. I am getting all my nutrition through the IV in my femoral artery. That was almost a problem today too. My IV, the only one I have, clotted and they couldnt get any blood from it. Luckely some very skilled nurses rethreaded it and got it functioning properly. Wow that was a lot of stress for my whole family. Speaking of family every one saw my super cute video taken by my beautifull aunt Tricia she is always very nice to me. I got a lot of visitors this last week it was great. I got to see my Grandma's and Grandpa's and my uncles and big brother too!!! I really miss daddy. He is comming to see me tommorrow that makes me very happy. I love my family so much...Hugs and Kisses. Love Ayden

Busy little Bee

2008-10-25T17:24:00.001-07:00

Well I have been extremely busy this last week. I am still in the hospital and they are still trying to find a way to make me better again. When I got here last week they put a tube in my chest to drain off the fluid collecting around my right lung. I still have the tube in my chest and it is still draining fluid. Apparently during my last Open Heart Surgery there was a duct that was cut. This particular duct is attached to the stomach and all the fat that you eat gets sorted out, sent through this duct, then the fat gets dumped into your heart. Well the fat is the liquid that is pooling its self around my lungs. I am on my very first non-fat diet and guess what? It tastes gross. I still am having a lot of drainage so they have me on a medication that is going to restrict the flow through that duct. I hope it works. I had a few bad days they have had a really hard time getting an IV started and they ended up poking me over 23 times in a span of only 2 days. After that I had enough so they started whats called a central line. Its basically an IV in a major artery. They gave me some really good sedatives that day. Well its going to be a few more days until I find out if this stuff is working. I will have an echo cardiogram done on Monday and hopefully all is in good working order. If it is I get to go home. If not they are talking about doing an angioplasty and seeing if that relieves pressure off of that duct. I am so glad that every one is helping my mommy and daddy they look very stressed. I know that with all your thoughts and prayers that I am going to be out of here very soon. Thank you so much for everything. Love Ayden

Back in the Hospital!!!

2008-10-16T11:04:00.001-07:00

Well, since Sunday, I have been really fussy and Mom and Dad have been very stressed out. Monday I was in a good mood all day and Tuesday I was so-so. Wednesday I was right back at the fussy stage again and I was having trouble breathing. Daddy decided to call Doernbechers and the doc there told him to take me to the emergency room in Roseburg and have them check my vitals and get a chest x-ray done. We did that and I had fluid in the right plural cavity behind my lung. Mercy called Doernbechers and told them and they wanted me up there ASAP. So I got to go in a another ambulance doing about 85-90 all the way to Portland. Dad and big brother were behind us most of the way. After they examined me, they decided to put in a chest tube to drain the fluid out. They did this and shortly after doing so, I had like a 130-140 ml come out. They said the stuff is basically just really thick breast milk, and this is actually pretty commom after the surgery I just had. As of right now, I am doing okay. They are starting me on a different formula, one that will not cause what happened to happen again. Anyways, so we are back up here again, hopefully only till Sunday. Well wish me luck and I will keep you updated. Love Ayden.

Such a big boy!

2008-10-14T12:02:00.000-07:00

These accommodations are so spacious!This is way bigger than my last pad!
My first night in my new crib!

Well, I spent my first night in my crib last night and I did all right. I was fussy a couple of times, but the crib is at the foot of Mommy and Daddy's bed, so I am not that far away. I had a doctor's appointment today and I weighed almost 13 pounds. Mom and Dad don't have to weight me everyday like they used to, so we were curious as to how chunky I was. The doctor was very happy with how I was looking and doing though. I also have eaten from a bottle a few times now. I have not been doing this since earlier this summer. Mommy and Daddy are happy that I am trying again. Anyways, I gotta go watch the new Indy flick. Love you all, Ayden

Home at last!

2008-10-10T23:49:00.000-07:00

Well I got to go home on Thursday. Boy were we glad. After being in Portland for 10 days, I wanted out of there. I got home, safe and sound, but with a slew of medicines to take. I also have a couple of doctor's appointments soon. When we got home, we had no heat, which sucked. Mom probably won't like me using that word, but oh well. Mom and I slept in Papa's recliner all night and Dad and big brother slept in Mom and Dad's bed because big brother's room was colder than the freezer. They got the heat fixed this morning so all is well. I probably won't leave the house for a few days, don't want to get sick and the weather has been really cold down here. Well I gotta go to bed. Love Ayden

Busy last 2 days

2008-10-08T19:21:00.000-07:00

Well, Tuesday morning, I yanked out my NJ tube. The NJ stands for Naso-Jejunal or small bowel. I did have a NG tube which a Naso-Gastric or stomach. They reinserted another tube into my stomach and left it there. They also took me off the continuous feeds, which has helped big time with my uncomfortableness. I am back on the feeds I had before I had surgery and I am not having hardly any problems with gas and I have not spit up once, knock on wood. I am not hooked up to any monitors and I don't have any IV's. All my meds are through my tube, and I have been in a great mood. Yesterday, they did 2 X-rays, 2 ECG's and an EKG. I am going to be on some new meds for a little while, but other than that I feel good. Best of all, I may get to go home tomorrow. This makes everyone happy. I already have two doctor's appointments scheduled for after we get out of here. I have been smiling, laughing and cooing quite a bit and nowhere near as fussy. Mommy and Daddy are very happy with my condition. Well, gotta go, gotta get back to watching Iron Man. Love Ayden

Good and Bad Day

2008-10-06T18:54:00.000-07:00

Well we'll start with the good news. I have been upgraded from the ecomony to the luxury suite i.e. from the PICU to the Inter. CU. I have a IV, my feed tube and the sensors for my heart rate and my Pulse Ox. That's it. Now the bad news, I had some fluid coming out of my right ear on Saturday, which filled my ear canal. The ear doc came and checked it and got me a prescription for ear drops. Today he cleaned out my ear and said that my ear drum is perforated near the bottom. He took a culture and hopefully I will get a antibiotic for it tomorrow or Wed. As of now, I am very grouchy and gassy and overall very unhappy. Mom and Dad don't know why, but are trying to help as best they can. Anyways, gotta go to bed, they got me scheduled for a diaper's load of tests tomorrow. Write me back if you read this and are thinking about me, I would love to hear from you. Love Ayden

Teeter-Totter Day

2008-10-05T21:11:00.000-07:00

Well today kind of started out like Thursday did. I was really fidgety and could not get comfortable. It did not matter what they gave me, I would not sleep well. I was back on the nasal canula and they decided to put me on the CPAP machine. Well they were finally able to figure out what was wrong. I have a NJ tube, which instead of going to my stomach, it goes through it and into my intestine. They had me on 35ml feeds/hour and my body could not hold that in the intestinal tract. If it had been in my stomach, I would have been fine. So they got me back to 25ml/hour and I was fine after that. I had my chest tubes taken out today and also I am on room air, no canula or CPAP. They are also planning on taking out my Central line in my neck and just using an IV for me. Mommy got to hold me, for a while cause I got gas and then I felt better. I did finally go number 2, I haven't since Tuesday. That felt better. Anyways I will talk to you all later, Love Ayden.

Another good day!

2008-10-04T18:48:00.000-07:00

I had another good day today. I am not taking too many medications for pain, just a little morphine. I had my catheter taken out, as well as one IV and one arterial line. I had my eyes open alot today and got to see some of my family. I sure do miss big brother. As of right now, I am off the CPAP machine and just on a O2 canula. They are talking about possibly taking out my chest tubes tomorrow. A bit of bad news though, I might have a middle ear infection. The doctor looked in my ear but could not see the ear drum, so they put me on drops and will check it on Monday. I also have been getting food, right now I am at 20ml per hour and the goal is 35mls. Well I am going to take a nap. Talk to you tomorrow. Love Ayden.

Much better day today

2008-10-03T18:31:00.000-07:00

Today was much better. I was doing really good earlier this morning after they were able to calm me down. I was on the Ativan and Tylenol to calm me and the CPAP was at a 100%. As of now, I have not had any Ativan since this morning, Morphine since earlier this afternoon and my CPAP is at 45%. The nurse is still giving me Tylenol, but the main thing has been checking my lungs and sucking out all the stuff that is in them. I have only been irratible when she messes with me, other than that, I have slept all day peacefully, which I needed cause I was beat. This was good for Mom and Dad cause Mom did not sleep that good the first night and Dad has been up since 2:30 this morning. They did take naps later on which is good. Anyways not much else to report except that I am not on any other medicines, which is good. The doctors are happy with how I look and they should start my feeds back up soon. Well talk to you all later. Love Ayden

Hard First Day

2008-10-03T04:45:00.001-07:00

Well, the first day after the surgery was a rough one. I was doing very good overnight and about 3:30am on Thursday, they decided to extubate me. This was good, because I was not happy with the tube shoved down my throat and being awake. After this, I did ok for a while, but then I got really restless and inconsolable. The staff told Mom and Dad that I would be this way but Mom was convinced that there was more to is than just that. They tried giving me Morphine and Tylenol, which did not calm me down. One time, I opened my eyes and was looking at Mommy and Daddy, for a good half a minute and then I just started crying. They tried alot of different things to calm me down. They tried to up the dosage of the Morphine, they rewrote the order so they could give it to me once an hour. They also tried Oxycodone, with no luck. They gave me another Diuretic, which was supposed to help get rid of the fluids in my abdomen, but that did not seem to be the problem. They also gave me Activan, which I had been on before when I left the hospital in May. This is not so much a pain killer as it is a relaxing medicine. This seemed to work. They also gave me hydro-chloride, which also is a pain killer too. The day nurse did not seem to think that anything was really wrong, which had Mommy pulling her hair out, but fortunately the night nurse is on her game. She agreed with Mommy that it looked like I was having trouble breathing, so they put the CPAP machine on me. They were possibly going to reintubate me but they gave me some time to see how I did on the CPAP and so far so good. I am doing fairly good right now. Well I have to go back to bed. If they ever found out I was out here typing away and not in bed, I'd be in big trouble. Love Ayden

Out of Surgery... So Far So Good

2008-10-01T17:29:00.000-07:00

Well I am done with surgery and I already look better then I did with the first two. Not only did they do the Glenn, Dr. Langley also did a Aortic Patch, which is when they make an incision in the Aorta to widen the diameter and then put a patch over it to keep it open. This was kind of unexpected to Mom and Dad. They also thought that my tricuspid valve was leaking, but they figured out that it was not. They are hoping to have me extubated within 12 hours, which is awesome, but I will definetly not be happy when they do it because they have to wake me up. The nurse also said that I will probably have a wicked headache due to higher pressure to the head for a few days. This will also make me grumpy. But I am moving my right foot already, which is a good sign. I just hope we can go home sooner than last time. Well, I just want to thank all of you who were hoping and praying for me and after we are home and feeling better, we will have to see you all. Thanks again, Love Ayden

Warped Ken Doll

2008-09-26T09:07:00.000-07:00

I know the title is kinda weird, but the reason is that my Mommy was putting clothes on me that were huge the other day, like she was playing dress up with me. I gotta admit, I did look dang cute though. Anyways, I just wanted to let everyone know how much it means to me and Mommy and Daddy and big brother that you all are thinking about me when my surgery is done next week. I have been staying steadily at over 12 pounds which is good and the doctors said that I will gain weight even quicker after the surgery. Before you know it, I be as big as my Uncle Garrett. ;0)Well I will talk to you later and we will keep the blog updated as much as possible next week. Love you all, Ayden

Another Surgery... Another Trip to Portland

2008-09-17T14:48:00.000-07:00

Well here it is folks. The news everyone has been waiting for. I am scheduled to be in Portland on Tuesday the 30th for a sedated echo at 8am. Then the next day, I will have my surgery, mostly likely first thing in the morning. Remember this procedure is called the bi-directional Glenn procedure. Basically, what is done, is the BT Shunt will be removed. The doctors will connect the SVC (Superior Vena Cava) to the pulmonary arteries that go to the lungs from the heart. This will send all the blue (un-oxygenated)blood from the upper part of the body to the lungs without going through the heart. This will take a lot of the extra work my heart is doing off line. Right now, my heart is sending oxygenated blood to the body, and also sending the oygenated and un-oxygenated blood to the lungs. The other surgery that I will have later on (Fontan) will connect the IVC (inferior vena cava) to the pulmonary arteries, so all my heart will have to do after that is pump blood to rest of the body, nothing else. Recovery time is unknown, so we are hoping for the shortest time possible. Anyways, also I finally hit 12 pounds yesterday. This is good. I also learned how to blow raspberries. I am so cute! Well gotta go. Love, Ayden

Rocky Road... no not the ice cream!

2008-08-26T19:48:00.000-07:00

I am doing better. Even though everything did not go the way we had hoped at the hospital, the doctor was happy with how everything looked. After I got home, I was kinda losing weight. I was still above 11 pounds but the fact that I was losing it was not a good thing. But I am doing awesome now. I have gained back the weight I lost and then some. I weigh 11 lbs, 13.5 oz. I am also not spitting up like I was before. I still do but only a little bit and it's once in a while. Usually it's because I get really snotty and congested because of the NG tube and I swallow the nasty and then hork it back up. I am also cooing alot. Mommy and Daddy call it talking. I also smile all the time and like to stick out my tongue and click it at you. Also I have to taste test everything I can get my hands on, oh yeah and those too. ;) But like I said, I feel better than I have in a while. Now we just need to get this other surgery out of the way and then I can start having more of a normal life. Well if you read this, please drop a line and say hi. Love Ayden

Well, Back in the so called saddle again!!

2008-08-22T20:18:00.000-07:00

Today was the big day. Mom, Dad, big brother and I got to OHSU at the butt of dawn. We got checked in, and then had to go to the 11th floor. This was were the Cath Lab and recovery room was. I was in the lab from about 12:30 until after 5. Dr. Armsby was very happy with how my pressure & veins looked. Unfortunately, they can't use the left side of my heart, because it still just has not grown like it needed to. SO it looks like the next step is the Glenn procedure or stage two of the Norwood. The good thing about this is that it is not open heart surgery. They go in near my shoulder and don't have to open my sternum up again. Dr. Langley most likely will do this surgery also. This will probably be sometime next month they said. As of right now, I will probably be discharged tomorrow afternoon. Anyways, I am really tired and not happy that I am back in the hospital again, hence the title. Please leave a comment if you read this, I would love to hear from you. Love to all and thank you for the support, Ayden.

The size of a small compact car... Just joking!

2008-08-09T00:52:00.000-07:00

Well as of yesterday, I hit the 11 pound mark. I still have two weeks until my procedure, so I will be well on my way to 12 pounds by then. I am just hangin out doin nothing else right now. I have a doc appointment on the 14th and I don't have to go to the docs every week anymore. There is a link to my newspaper article on Doernbecher's website. You can look at the doctor's bio on the Doernbecher website who will be doing my procedure on the 22nd. Her name is Dr. Armsby. Other than that, big brother's birthday is coming up at the end of the month. He will be the big 1-0. I love him very much and couldn't ask for a better big brother. Anyways, gotta go. I have to get my sleep on. Love you all, Ayden.

Little Michelin Man!

2008-07-23T23:35:00.000-07:00

I am getting so chunky, I got more folds than a paper crane! But I am still cute as heck!

Do I have something on my face? Perhaps a boog hangin?

Yeah, I yanked it out! You got a problem with that???!

Well, the last five days have been good and bad. On Sunday, I pulled a nice one on Daddy and yanked my NG tube right out, at 8 in the morning, no less. Nothing says good morning like something like that! Mommy came home from work and put it back in with Daddy's help. Then on Monday night, I decided to show Mommy my new trick and did it again. Only this time, I went the extra mile and did it while falling off the foot stool. I only fell about a foot or foot and a half. I am such a stinker! Mommy got it back in right away, though. But guess what, I have not been spitting up as much and consequently, I hit the 10 pound mark. Woo Hoo! Mommy and Daddy and big brother are so proud of me. At this rate, I hopefully will be 11 pounds by my procedure and maybe even well on my way to 12 pounds. Well, I best be going. Love you all very much. Ayden

Another procedure on the horizon!

2008-07-15T23:43:00.000-07:00

Me and my big brother! Just a couple of lady killers!
Daddy was making weird sounds and so I had to smile at how much of a dork he is!
He is Hans and I am Ayden and we are here to "PUMP YOU UP!"

Well as you may or may not have heard, I will have to have another cardiac catheter done in August. The date will be the 22nd, a Friday. The plan is to be there only overnight and be back, sound as a pound, at home on Saturday. I had a doc appointment in Eugene today and it went really well. The doctor was really happy with my weight gain and how my heart sounded and looked on the echo. We also had an appointment with a feeding specialist that gave Mom and Dad a new idea on trying to get me to take a bottle and pacifier better. Like that is going to happen! But I am 9 and a half pounds and still going. Well I should be in bed, but instead I am doing this. Gotta go before I get caught by the Warden!(Mom) (That's what Dad calls her!)

I made the newspaper!

2008-07-09T17:13:00.000-07:00

Wow, most of the time, when you make the newspaper in Roseburg, it's because you did something stupid and then you end up seeing my Mommy at her work for a long time! I am less than 3 months old, and already I have got to ride in two ambulances, an airplane and had two open heart surgeries. That is more than some people do in an entire life time. But other than that, I am doing good. I am now over 9 pounds and 21 inches in length. Well gotta run, very busy with public appearances now that I am a celebrity! LOL Love you all and here is the link to the article. Love Ayden.

http://www.nrtoday.com/article/20080709/NEWS/794523638/1026

Still an Ogre Baby!

2008-07-02T19:54:00.000-07:00

I am a pooping machine! And it is nasty! But on a cleaner note, I am still gaining weight, still have my mohawk and I am still the cutest baby on the planet. Or at least that is what everyone tells me. As it stands right now, I weigh about 8lbs, 10ozs. Dad hopes that I weigh 9 pounds by next week. I have more doctor's appointments, one tomorrow and several in Eugene on the 15th. I have been sleeping in my bassinet all night for the last 3 nights, which is good. Since Mom had to go back to work, I can't sleep on her anymore all time, like I used to. Anyways, sorry I don't have more for you, but I have been really busy. I do get to see both of my grandma's every weekend, which is very cool. Love you all, Ayden

8lbs and Counting

2008-06-20T13:18:00.000-07:00

Well, it has been awhile since I wrote everyone. I have been busy with doc appointments every week and gaining weight. Today I hit eight pounds. Mom and Dad were so proud of me. All the doctors I have seen so far have been very pleased with my progress. They want me to be around 12 pounds by my next surgery, so I got some growin still to do. I am on a formula/milk combo 5 times a day at 45ml for 45 min. and 29ml per hour for ten hours at night. Anyways love you all and if you want to see me, give Mom or Dad a call. Love Ayden

I am a Ogre Baby

2008-06-08T21:43:00.000-07:00

My first bath at home!
And I did not like it one bit!
Giving my big brother a kiss!
Just chillin with daddy!
Looking cute for the camera!

For those of you who have seen Shrek 3, I am like the babies that are on there. I throw up and fart alot. :) I have made it over a whole week since getting out of the hospital and so far I am doing pretty good. I have not had any oxygen sat problems yet and I am already off of one of my meds and getting weaned down on others. My dad has some pics to post of me since I have been home. So far, I have seen all my grandparents, uncle Garrett and Miranda and also my great grandparents. Pretty much all I have been doing is sleeping and eating. I have gained some weight but not much. Today, we went to the river and took those two big stinky puppies along. I fell asleep about two minutes from the house. Mommy carried me in a sling. But everyone else had fun. Everyone has been so busy that I will probably only update this about once a week. Please feel free to call if you want to see how I am doing or how Mommy or Daddy or big brother are doing. Love you all, Ayden

Home, Sweet Home

2008-05-30T23:28:00.000-07:00

Yeah. Finally after 5 long weeks, Mommy and I finally got to come home. We got alot of help from everybody at Doernbecher's. Everybody up there is awesome. I already have two doctor's appointments scheduled for next month. Mommy is so glad to be home. I got to see my Grandpa Ron and Uncle Garrett for a few minutes today and I got to be held by Grandma Sam. Boy I missed her. She had to wear a mask when she held me, but that is fine. I also got held by big brother which was awesome. I love him alot. I am sure in the next few days, I will probably be seeing some of you. I am going to be a hermit for a while, so bear with me. If I catch anything, it would not be pretty. Love you all, Ayden

Preparing to go home!

2008-05-28T17:33:00.000-07:00

Well I was moved to the intermediate care section and they are preparing me to go home. The doctors are hoping to send me home this weekend!! The doctors are trying to teach my mommy how to care for me while I'm at home. I will probably still be on a feeding tube. They will send stuff like oxygen and a saturation monitor home with me to help my parents keep me healthy. This is very good news. I want to go home!

Another good day

2008-05-26T23:07:00.000-07:00

Big brother, Mommy and Me!
I was not a happy camper when they took out the breathing tube!
I like looking at Mommy because she is so beautiful!

Well not a whole lot happened today. The nurse did take out my sutures and also my IV in my right arm. I did not move to the NICU today, and may not end up moving at all. The NICU is very full and the PICU is not, so for now I stay there. I did hear that I don't have very long before I might get sent home, maybe a week or two at the most. Dr. Langley came in and told Mommy and Daddy that I am probably only going to have one working ventricle, so that means that I will most likely have two more surgeries. He said the next one should be in about 4 to 5 months. Daddy took some pictures yesterday and today of me and he is going to add them in. Love you all, Ayden

Still goin strong!

2008-05-25T17:05:00.000-07:00

Today has been a great day. I am off of the Dopamine, the Heperin and also the Digoxin. I am only being given aspirin. I am also completely off of the oxygen and breathing on my own and doing a good job of it I must say. I am still being given stuff for withdrawals for being taken off of the Morphine and also to help me pee. I got to see my Mommy and Daddy, big brother, Grandma Penny and Aunt Tricia today. I hope Grandma Sam gets better soon, so I can see her and also see my Grandpa Ron and Uncle Gary and Uncle Garrett. The doctors said that I may get transferred to the NICU tomorrow, which means that I am doing so good, that I may get to go home soon. YEAH! Anyways gotta go and get my sleep, so I get stronger and get to come home and see everybody. Love you all, Ayden

Mom and Dad are proud of me!

2008-05-24T18:39:00.001-07:00

Today I got to see my dad for the first time in 9 days. I was very happy, and so was Mommy. I also had my breathing tube and my OG tube taken out today and I have been doing awesome. My respiration rate is good, my O2 saturation is great and my heart rate and pressure are good. I am not feeding right now, but I am down to 5 on my Dopamine, which is good. The only cruddy thing is that in order to give me more , they had to try to start a peripheral IV line, because they can't put in the same line as the Dopamine. I did get to see big brother today, even thought he is sick, but he is doing better. I also got to see Aunt Tricia, which was cool. Anyways, I will let you all know how I am doing tomorrow and Daddy will have some new photos of me to post when he gets home on Monday. There is one of me when they took out my ventilation tube where I am not a happy camper. Love you all, Ayden

On our way to tube freedom!!!!

2008-05-23T21:48:00.000-07:00

Well I've got good news. I am on the last setting on the ventilator. That means I could be off all that stuff as early as tomorrow afternoon!!!! This time I intend on staying off that machine. I am doing pretty good at keeping my pressure up today too. I am so excited I get to see my daddy tomorrow I haven't seen him in 9 days. Thats a very long time for me. I was told I might not get to see my big brother though because he has a cold. Well if I don't get to see him at least I know my mom will tell him that I love him very much and miss him alot. I can't wait to get out of here and meet everyone. See you guys real soon Love Ayden.

Hold 'n Steady!

2008-05-22T22:20:00.000-07:00

Well not a whole lot of changes today. I am still looking good and the important thing is I didn't take any steps back. The nurses and doc's told me that I get to drive this thing as fast I want and I feel like driving it like my grandma. Just kidding Grandma I love you:) Well I think I'm getting tired of this ventilator thing. Maybe I'll get it out again soon. Talk to you guys tomorrow. Love Ayden

Happy Day!

2008-05-21T21:14:00.001-07:00

Well I got to hang out in my mommys arms alot today. I had a great day and the docs are impressed with how I'm doing. They are going to start me on some new meds and hope that it will help keep my pressure up and keep my heart from getting too stressed out. I am still on the ventillator but I am not on any oxygen, this was a big step for me and I am doing great. I get to wear some clothes finally and hopefully I will have some new pictures up to show you how cute I am. All the nurses love my really cool mohawk.
I am headed in the right direction I hope I will get to share more good news with you all very soon. Thanks everyone for thinking of me. Love Ayden

Still goin strong!

2008-05-20T22:03:00.000-07:00

Well today I am doing very well. All the surgeons and cardiologists are stumped. They are not sure why some of my numbers arent matching. Right know they are giving me another antibiotic to make sure I don't get another infection. I had a CT done on my heart to make sure it was looking good. From what the surgeons say its looking great. I am having a little problem getting off some off the medication they have me on. This medication called Dopamine is a really hard one to kick. So far no more surgery is planned. Lets hope it stays that way. Well I will let you know how it goes talk to you soon.

The ongoing roller coaster.

2008-05-19T10:21:00.000-07:00

Well it's been a few days since I've posted anything Saturday was not such a good day. As you can imagine with all the different kinds of meds that I'm on and the stress I've been under other things are bound to happen. Saturday evening my stomach started to bleed and I threw up a lot of it. This could mean that I have a stomach ulcer or just that all the stuff I'm on has been wearing away my stomach lining. The bleeding has stopped and they have me on even more meds to help my stomach. I did really good on Sunday and haven't had any new problems. Today they are trying to wean me off the ventilator. If I am still not making enough progress they will have to do another surgery. I am a strong boy and will continue to fight really hard. Thank you every one for keeping in touch and reading my messages.

Two Days Forward, One Day Back

2008-05-16T08:00:00.000-07:00

Well, after having two good days where I had stuff taken out, I was bound to have a not so good day. But it's not as bad as you would think. Yesterday, I had to be re-intubated. I was working so hard at breathing that I wore myself out and was not able to do other stuff that I needed to do. So the docs did this and my O2 sats got really good after this. The docs said this would only be for a few days, and then they would let me try again without it. But on the flip side, I got held by Mommy a lot more. I sure do miss Daddy and big brother, but I will get to see big brother tonight and this weekend. Also Daddy wanted me to thank everyone at his work for their donations, him and Mommy really do appreciate it very much. Love to all who love me, Ayden

Mom and Dad get to hold me!

2008-05-14T21:51:00.000-07:00

Yesterday, Mom got to hold me for about 4 hours. Dad had to convince her to put me back on my bed, just so she would eat dinner! Today, my Dad got to hold me before he had to leave to go home. This made him very happy and again, I only got put back in my bed when Dad had to go eat lunch. Maybe this weekend, big brother will get to hold me. I sure miss him! I did all right today. I wasn't spectacular, I just had alot of crud in my lungs and nose and this made it hard for me to breathe all the oxygen from the CPAP machine. They suctioned out alot of stuff and they also stuck a tube into my stomach to suction out air that I swallowed because I do that while I breathe. My dad is going to put a few pics up on the site. One of them my dad wanted to show you all how blue my eyes are. Sorry about all the tubes. Love you all, Ayden.

Finally, less hoses than the garden center at Lowe's!

2008-05-13T20:41:00.000-07:00

Today went all right. I had my chest drain tubes taken out. I also had my hard line that was in my neck since the first surgery taken out,too. After they took that out, I bled like a stuck pig for about 45 minutes, because I am on blood thinners for my shunt not to get clotted. A couple of things that I also have wrong, but the nurses are working on, are that I have a ear infection and also a urinary tract infection. I also have a large blister on my neck and also adema, which is when all the fluid in the body pools on the side I lay on. They aren't sure how I got the ear infection, but UTI is from the catheter I had, which was taken out yesterday. I am on antibiotics for both of the infections. My SpO2 level has been up and down, but that maybe because I have some fluid in my lungs, which they are suctioning out, or I may be shunting. Shunting means that because of my ASD, some of the un-oxygenated blood is passing through that, rather than it all going to the lungs like it is supposed to. Daddy said he will post some new pics of me once he gets home. Well I am gonna go. Love you all, Ayden.

My breathing tube is gone

2008-05-12T17:04:00.001-07:00

Sunday went really well for me, much like Saturday. I had my IV in my belly button taken out, which was nice. So far for Monday, I have been taken off my Verced and Morphine. The nurse said he would be using Methadone to bring me off of withdrawals. Man I feel like the people Mom has to deal with, being on Methadone. :0) Anyways, like the title says, I am also off the ventilator, which means I am more awake and more irratible. My lungs have a lot of crud in them still, which is messing with my SpO2 levels. Everything else is good for now though. I am on what they call a CPAP machine, which goes over my nose and just assists me with my own breathing, no forced O2. If I do really well the next two days, Dad is probably going to go home and get some stuff taken care of and also go to work. He will come back up on his weekends to see Mom and I. Mom and I will miss him. Well that is all for now. Love, Ayden.

Doing better

2008-05-09T20:52:00.000-07:00

At first, during surgery, the doctors were impressed with how well I did. I was on room air and was doing well. So when I came out of surgery, I started kind of having the same problems as before, but not as bad. It took the nurses and doctors some time to get me where I needed to be. Saturday was much better. My LAP (Left Atrial Pressure) and my RAP (Right Atrial Pressure) are the same, which is what the doctors wanted to accomplish. I did have a lot of crud in my lungs that the nurses got rid of and they also have me on diaretics, to help get rid of it through my kidneys. I did awesome on Saturday and I got to see some more of my family, including my Grandma Penny and Grandpa Ron, Grandma Sam, Aunt Tricia and Uncles Gary and Garrett. My dad told me that my great grandparents are going to come see me on Sunday. I will let everyone know how Sunday goes. Bye for now, Love, Ayden

All fixed up!

2008-05-09T14:45:00.000-07:00

I am out of surgery and everything seems fine for now! The Doc didn’t have to move my shunt, he said that everything looked good. He did clean up around the end of the shunt, which is what he thought was the causing the main problem. Dr. Langley did end up putting in an ASD and just like they thought, that took care of the pressure problem that I was having also.

Another Surgery

2008-05-08T20:18:00.000-07:00

Well as the title implies, I have to have another operation. The reason behind this one is that after my last operation, I should have been getting better, instead I am being like a yo-yo and having my vitals go back and forth. This next op will involve taking the end of my shunt and moving it to a different artery, because the one it is attached to now is narrowed. After this is done, Dr. Langley will also be removing tissue from my heart and making a small hole in the atrium wall, which is called an atrial septal defect. I already have a ventricular septal defect. The idea is that this will even the flow between the two atrium, which is something I am having problems with now. My surgery is not as risky as the first one, which is good and Dr. Langley is confident this will solve the problems I've been having lately. Anyways, Mom and Dad are really chomping at the bit for the whole stay at the hospital to be over with, so we can all go home. I am really looking forward to getting to see my bedroom and getting to see my two big, stinky puppies, Koda and Gunner. Anyways, I will update everyone with how I do tomorrow. I know my life has been a roller coaster for all of you and my family really does appreciate all your thoughts and prayers. Love, Ayden

So far, so good

2008-05-08T09:21:00.000-07:00

Hey it's Ayden again. So far, I did pretty good overnight. Right off the bat, this morning, they were going to start a PICC line on me, so they can take the hard line out of my neck. Mom bumped into Dr. Langley and he told her that I may get taken off the ventilator today or tomorrow. Yeah! Anyways, as of right now I am doing good. Talk to everyone later. Love Ayden

Wednesday

2008-05-07T10:55:00.000-07:00

Well, my parents thought, my doctors thought and I thought I would be having another operation today. I was supposed to be first on the list this morning, but another little kid got sicker than I was, so they worked on him first. When Doctor Langley looked my numbers this morning, he was somewhat happy and suprised. Everything was doing very well, except my CVP (Central Venous Pressure) and my LAP (Left Atrial Pressure). These numbers should have been the same but they were'nt. So they put off my operation for a little while, so they could look at me. This made me and MOM and DAD very happy!!! Well I will let everyone know what we find out later. Bye.

Tuesday

2008-05-06T19:14:00.000-07:00

Well this morning, the doctors did the rounds and they decided to perform a test called a cardiac catheter,where they injected a dye into my stream, so they could see where it ended up at and see how it flowed. They took me to do this at around 10:45 am and I did not get back till after 4:00 pm. Mom and Dad were pretty worried, and Uncle Gary came by to see me and I was gone. Darn! After doing the test, Dr. Langley talked to Mom and Dad and told them that I would need to have another operation. This operation is not as long and bad as the last one. Dr. Langley said that they are going to disconnect my shunt and move one end to my aorta, because where it was connected was narrowed due to when they sowed me close, the tissue kind of got pushed around and moved it a little. The only problem with this operation is that I just had one, so I might get sicker possibly because my immune system is not tip top yet. But the good news is that I will have two of the best heart doctors in the world working on me tomorrow, Dr. Stephen Langley and Dr. Ross Ungerleider. Google both of them to see how good they are. Anyways I am pretty tired, so I am going to go. I will be sure to let everyone know how I am doing tomorrow. Love to all. Ayden

Monday

2008-05-06T19:09:00.000-07:00

Well, Monday was kind of a messed up day. My heartrate was all over the place, sometimes as low as the eighties and as high as the one seventies. The doctors and nurses thought this was due to my electrolytes being low, so they tried giving them to me and for some reason, I seem to need them higher than normal. Finally my heartrate got somewhat better, but it definetely put a strain on Mom and Dad. I was doing better by the time they left to go to bed.

Saturday and Sunday

2008-05-05T10:14:00.001-07:00

After my dad published my blog on Saturday, I started feeling really bad. My pressure and O2 levels were all over the place. The nurses gave me some diaretics to help me pee more, to flush my system and that seemed to work, because by the time my Mom and Dad went to bed, I was much better. I like Ali, my nurse. She is nice and very smart. On Sunday, I was much better. My pressure and O2 were still kind of all over the place, but I felt better. I got to see my brother. I haven't seen him since I was born. That made me happy. I also got to see my Grandma's and Grandpa and my uncle Garrett. Yeah! My dad said he will post a blog on Monday after we see how everything goes.

May 3, 2008

2008-05-03T11:28:00.000-07:00

Happy Birthday to Me! I am a whole week old today. I am doing a whole lot better also! I am completely off of the Epinephrine, which helped control my pressure. The nurses are also going to start weening me off of the Dopamine, too. The nurses are also going to start feeding me some of my mommy's milk through a tube in my nose, which makes me happy. I am hooked up to a respirator which helps control my breathing, but I am also being a big boy and taking my own breaths as well. All of my vital stats have been good, including my temperature, which kinda got high yesterday. I am also on a thinner, just like my Grandpa Ron, so my shunt does not get any clots in it, being as how it is only 2.5mm in diameter. Well that is it for today, I am pretty tired. I have been moving alot more lately. Love to everyone. Ayden

My New Blog

2008-05-02T17:22:00.000-07:00

My Uncle Gary put this blog together today and showed my Dad how to post. He hopes that Mom and Dad will use this to keep the family updated. Later in the weekend Uncle Gary plans to update my first day pics, and have links to more photo’s other family members took.

The Day after my Surgery

2008-05-01T17:18:00.000-07:00

Today is Thursday, the day after my surgery. Michelle, my nurse is really nice. So far I am doing ok. I sleep a lot and I am on a lot of different medicines. Dr. Langley talked to Mom and Dad and told them that I may be able to have my chest sewn up tomorrow, if everything goes ok.

ICU

2008-04-30T23:30:00.000-07:00

It took over 4 hours in the ICU to get me stabalized before I was ready to see my parents. My Mom was in shock and my Father had to take care of her, thanks DAD!

Finally out of surgery

2008-04-30T18:30:00.000-07:00

My parents told me that while I was in surgery, a lot of my family was here giving them support. Thanks Grandma’s, Grandpa’s, Brothers, Cousins, Uncles, and Aunts who helped out my parents. I love you all very much!

Change of plans

2008-04-29T22:00:00.000-07:00

I wasn’t feeling too good so the nurses had to put a breathing tube in and call the Doctors in. They decided to do the first operation early tomorrow instead of next week. It should only take six hours but who knows.

Even more tests

2008-04-28T10:30:00.000-07:00

I am only a few days old and already hate tests. My doctors want to wait for my operation until next week as my heart issues are very rare and they don’t want to miss anything.

Update on the bad news.

2008-04-27T09:00:00.000-07:00

OHSU ran tests to figure out what is going on with my heart, turns out my heart issues are very rare forms of Aortic Atresia/Ventricular Septal Defect and they want to wait a few days so they can run some tests to make sure there is nothing else wrong and also to make a good map of my heart. My Mom and Dad were told that I was going to be up here for a whole month.

I guess there may be three operations; one soon which will take part of my lung to fix the Aortic Atresia, leaving a shunt in my lung, one in 6mos to check on the shunt, and if everything goes right I may not need the third operation in 5 years.

Bad news!

2008-04-26T18:30:00.001-07:00

I got examined by the doctor today and she said she heard a heart murmer. She said this is common for newborns but she wanted some more tests done. Good thing she is on top of her game. After examining me, they decided to have me flown by airplane to OHSU in Portland. My mom rode with me and Dad and Aunt Tricia and Grandma Penny drove up. My brother Ryan and Grandma Sam drove up too.

My dad!

2008-04-26T10:15:00.000-07:00

My Grandma Penny says I look like him, which scares me. My Mom say I should grow out of that though! My uncle has to scan and upload my Dads baby photo later so you can decide.

Mom and Me

2008-04-26T10:13:00.000-07:00

My mom was very happy to have me out, I was a kicker!

My First Day!

2008-04-26T10:01:00.000-07:00

Hello, My name is Ayden Liam Jenkins I was born on April 26, 2008 at 12:47 am. I weighed 7 pounds 2 ounces and was 19" long, the exact same length as my daddy when he was born. My Grandpa Gary took these pictures, and my Uncle Gary put them on the web for me!