Warped Ken Doll

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

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!

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!!

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!

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!

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!

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!

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!

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

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

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

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!

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

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!

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!

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!!!!

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!

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!

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!

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.

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

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!

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!

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

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

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!

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

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

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

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.