Surgery is around the corner...

It has been a long time since we have updated you all on Jayden. It has been a fun and exciting year watching Jayden grow in his own little person. He keeps us entertained and on our toes at the same time! He is quite the loving little guy who has become a big fan of all his grandparents.

If you would like to see some pictures of Jayden over the past several months, check out our Picasa website: http://picasaweb.google.com/brettskilbred.

On May 6th, Jayden had a cath lab done at Riley. The results are helping his cardiologist and surgeon make their final plans. Jayden is scheduled for the second half of the Fontan Procedure on June 4th. He will undergo an open-heart surgery that will complete the rerouting of his heart anatomy. The recovery for this procedure usually takes anywhere from 1 to 2 weeks. We will be using Jayden's Caring Bridge website for updates throughout surgery and recovery. Here is his Caring Bridge website: http://www.caringbridge.org/visit/jaydenskilbred

We hope that this finds you all healthy, happy, and enjoying the spring!

With love,

Christie, Brett, & Jayden

Along awaited Riley check-up

After our longest stretch without going to Riley, we visited for a check-up at the beginning of June. During the check-up, Jayden had an EKG, an echocardiogram, and a visit with his cardiologist (Dr. Cortes). During the last check-up his cardiologist noticed a heart murmur, which was confirmed during this visit via the echo to be narrowing (stenosis) of his aortic valve. This is not completely uncommon given the structure of his heart, but is something that will require treatment. They changed his old medication, which was an ACE inhibitor that kept his left ventricle from working too hard & becoming overgrown (hypertrophic). His new medication is a Beta blocker, which is meant to relax the heart and keep the narrowing from increasing. We will go back to Riley at the end of September for another echo to see the progress of the valve. If the valve has continued to narrow, then most likely surgery will be bumped up to late fall. If the narrowing has stopped or reversed (keeping our fingers crossed), then they will proceed with surgery next spring. Either way, surgery will be necessary to fix the narrowed valve and they don't want to open him up twice if at all possible (we like that). His next open heart surgery will consist not only of the second part of the Fontan, but also valve tissue removal to widen the aortic valve. We will be sure to update you all in September!

A happier note, Jayden is doing wonderful. He is into everything that he can find while jabbering up a storm. He has had an eventful summer so far with swimming lessons, boat rides, and playing with friends. Everyday he is learning something new, not always something we are wishing for him to learn, but something new!!! Today he learned to take his diaper off and hide it...it ended up being in the trunk of his car!!! If you want to see some recent pics of Jayden, you can check out picasa: http://picasaweb.google.com/brettskilbred

We hope this finds you all healthy & happy! Enjoy the summer!

With love,

Christie, Brett, & Jayden

Riley Check-Up

Jayden had his first check-up with his cardiologist post-surgery on Monday, November 10th. He had a thorough physical exam and passed with flying colors! His cardiologist couldn't believe how few days Jayden spent in Riley after the surgery. He was very happy with Jayden's recovery and felt that Jayden was overall healthy! We spoke about his next surgery and found that it will most likely not be until the spring of 2010. We had been planning on next fall as the expected time frame, so we were excited that Jayden could grow & become stronger for his next surgery! His next check-up at Riley will be in 6 months at which time they will do several routine tests.

Jayden has a big first birthday coming up! It is hard to believe that a year has passed already. We are starting to understand the common phrase "they grow up too fast" as it is happening in front of our eyes! Jayden has currently mastered the art of rolling though is showing a lot of frustration in his attempts to get his knees underneath him. He is now starting to get into everything and keeping us on our toes! We only wonder what it will be like once he is running around here as we are already learning that teaching him no is not that easy. He loves to shake his head no at us and go ahead with whatever it is that he is not supposed to do! He is working on his 8th tooth these days so he is chomping down on whatever you give him or he finds! You simply would not know that he had open heart surgery less than 3 months ago...he is doing wonderful!

We have added a lot of pictures to the picasa web album including several Halloween pictures of our little monkey! For those interested in seeing them, here is the link: http://picasaweb.google.com/brettskilbred

Thank you again for all of your support! We hope that this finds you all happy and healthy. We wish you all a wonderful Thanksgiving! Take care.

With love,

Christie, Brett, & Jayden

Doing well!

Jayden had his follow-up at Riley with his surgeon last Wednesday. As you can see from the picture, Jayden was not very happy about the check-up! During the check-up, we had an X-ray done along with the routine physical exam. Dr. Turrentine informed us that Jayden's X-ray looked wonderful as he didn't see any excess fluid around the heart. He was also happy with the healing of Jayden's chest incision. Dr. Turrentine also cut back on the million medications that Jayden had been on since surgery. We will have a follow-up with his cardiologist on November 10 where he will most likely have an echocardiogram done to check on Jayden's blood flow and pressure.

Since our last post, Jayden's energy level has continued to increase. He has since shown a lot of interest in moving around. He is a rolling, spinning, and scooting machine! Jayden has also learned how to let us know exactly how he feels whether it be by laughing, hugging/kissing, or screaming. In doing so, he has informed us that he is no longer very interested in eating off a spoon. He wants to do it all himself, which we are finding is a VERY messy situation. The 3 of us are having a lot of fun as we continue to learn something new everyday!

We hope this finds you all happy and healthy! We will continue to keep you updated.

With Love,

Christie, Brett, & Jayden

Strong little sucker!!!

Jayden had his 2nd check-up with his pediatrician this Tuesday (9/9). He was given the big thumbs up as he is doing so well! He gained 12 ounces in only 7 days, so the doc has decreased the fortification to cut back some of the extra calories Jayden needed in the past. He is healing well and has lots of energy these days. Though he has had a little set back, his developmental progress is right on track. He is quite the talker these days and is very good with his hands. He loves to throw a ball back and forth to anyone who will play with him! He has shown zero interest in wanting to move, but we figure the days of chasing him around are just around the corner. Jayden will go back to Riley to see his surgeon at the end of this month and his cardiologist in early November. We will keep you updated! Thank you all again for your support as it got us through one more BIG scary step in our lives. To see some recent pictures, inlcuding ones from Riley, click here: http://picasaweb.google.com/brettskilbred

We also want to thank all of you who have sent us your thoughts and condolences. Jayden’s Grandpa, Richard, is and will always be truly missed. Our job now is to make sure Jayden knows how amazing his Grandpa was and all the good in this world that he stood for. We have put a video on Google Video that Brett made in honor of my dad for those of you interested in seeing it. Brett did a wonderful job in making this and would have made Richard very proud. Here is the link for those interested: http://video.google.com/videoplay?docid=4808474989056813620&ei=UhLLSNinFoGo-gGiiLnEAg&q=brett+skilbred

This year has taught us how important it is to let those you love know how you feel and not to take anyone or anything for granted. Sometimes that is much easier said than done. We hope that this finds you all healthy and happy. Take care.

With love,
Christie, Brett, & Jayden

Update & Schedules

Monday, May 5th, Jayden met with his cardiologist for a routine check-up and EKG. He weighed in at 12 pounds 9 ounces. Dr. Cortes was excited to see the "chunk" on his thighs as that is not always the case with heart patients. We went over what was in the future for Jayden when it comes to his labs and surgeries.

In order to understand Jayden's anatomy to its fullest, he will have to undergo a 'cath' lab on July 17th. During this procedure, a catheter will be inserted into a large artery. Various wires and devices will be inserted through the body via the catheter to get a better understanding of how Jayden's heart is operating. This will allow them to prepare for his surgery.

The first of his two-part heart surgery (the hemi-fontan) is to take place on August 14th. At that time, he will spend approximately 10 days at Riley and then require 4 to 6 weeks of recovery time at home. The second and final surgery will not be scheduled until he is around 2 years of age.

We are looking forward to a great summer of allowing Jayden to experience nature at its finest!!! We will keep you updated as we undergo each procedure. Thank you again for all of your support!

Love always,

Christie, Brett, & Jayden

Riley Update...

Last week, Jayden had a check-up at Riley where he had an EKG and an echo done. We met with his Cardiologists, Dr. Cortes, to get the details on how things are looking. Dr. Cortes was happy with what he saw at this point. The band on his pulminary artery is tightening as expected with Jayden's growth. We will go back at the beginning of May for another check-up at which time Dr. Cortes wants to schedule a cath lab. The cath lab involves injecting a dye into his artery to get a more detailed look at how the blood is flowing through his heart. If all looks good, we will then schedule his first open-heart surgery (the hemi-fontan). Dr. Cortes predicts this surgery will be scheduled for July though it may happen as early as June and as late as August. We were informed that the hemi-fontan will most likely require Jayden to be at Riley for about 10 days followed by about 4 weeks of recovery at home with nurse mommy!

Jayden is already 3 & 1/2 months old and continuing to grow. We are officially out of newborn (most) and into 0-3 month clothes!!! He has started reaching for things and putting stuff in his mouth! He is sitting up with help from the bumbo. Jayden has also learned to yell at us as opposed to cry when things are not going his way! Yes, he is quite the talker these days...we are trying to figure out where he gets that!!!

We hope that this finds you well! We will continue to keep you posted.

Love to you all,

Christie, Brett, & Jayden