Tyler continues to recover.

Yesterday, Tyler was moved from the cardiac ICU to the "floor." He still has his drainage tubes and can get uncomfortable when his pain medication wears off, but overall he is doing quite well. This evening, especially he was giggling and playing - huge progress. We are hopeful he will have his drainage tubes removed soon so we can get that much closer to bringing him home.

Fortunately and unfortunately, his brothers and sisters won't be around when he comes home. His grandparents are taking them to California to stay for a couple of weeks. While we will miss them immensely, it will really help Tyler to have Jamie be able to focus on him during his recovery.

Again, we are immensely blessed that he is recovering so quickly. It hasn't all been perfect. There have certainly been some scares, but his overall progress has been so much greater than what we expected prior to the surgery. We give much credit to all you that have fasted and prayed for our little guy. Heavenly Father has listened to and answered those prayers. Thank you so much for your support.

UPDATE

Sunday morning and we learned that Tyler will have his chest tubes and pacer lines out tomorrow morning. Although it's probably not going to happen, there is a chance he could go home tomorrow night. That would be awesome!

Way too long between posts!

It's been well over a year since our last post. Most (if not all) of you follow Jamie and/or me on Facebook, so it was easy to fall in the habit of letting "status updates" suffice. It's a lot harder to share all of your thoughts and feelings that way. We need to get back to blogging to provide the kind of detail that the important moments in life deserve.

As many of you know, our youngest son Tyler just went through heart surgery once again. This was the third of three surgeries to provide a palliative "fix" to his heart defect Hypoplastic Left Heart Syndrome. This surgery was the Fontan procedure. I don't have all the medical and anatomical terminology down pat to explain it. Essentially, they built a wall to keep the red and blue blood from mixing, and they put in a larger shunt to allow better blood flow as he grows. Hopefully, this allow his heart to last into adulthood.

Tyler is recovering well and is even a little ahead of schedule, We are so grateful for all your prayers on his behalf. We know our Father in Heaven is looking out for this special boy. We have truly seen miracles from above.

I hope to update more frequently. I apologize for not having any pictures, but the wi-fi spot isn't great where we're at now.

KAYLIN

After a four month sabbatical we are finally updating our blog again. Instead of trying to catch up on what's been going on, we decided to continue with our "spotlight" series. Next on the list is our wonderful four-year old Kaylin.

Born in March 2006, Kaylin has filled our lives with lots of laughs. She never ceases to amaze us with the things she learns. For instance, today I found out she wants "to be a billionaire so freakin' bad." Other than Steven's spontaneous bursts of opera singing, Kaylin is easily the most vocally apt of the children. She loves to sing church songs and to sing along to the radio. It's always fun to catch her when she doesn't realize anyone is listening.

Jamie really appreciates Kaylin for all the help she gives around the house and taking care of Tyler while the kids are in school. Jamie has loved the alone time she gets with Kaylin. Although she's still over a year away, Kaylin is looking forward to the day she starts kindergarten.

Now that summer vacation is back in session, Kaylin has started gymnastics (or "tenastics," as she likes to call it). Today was her first day and she thoroughly enjoyed it. She is very excited to go back next week.

Kaylin is the ultimate girl. She loves dressing up, painting her nails, putting on make up and all those other things that girls like to do. She is definitely "mommy's little girl." Fortunately, she does like to play catch with dad, too.

We are very excited to see Kaylin continue to grow up. She is a blessing to our lives with her wonderful and happy personality.

Celebrate Life

Jamie and I went to the Paul Cardall "Celebrate Life" concert in Salt Lake City for V-day this year. Paul is a local musician with a congenital heart defect. After a year+ on the waiting list, he had a heart transplant in September last year ( His surgeon is the same one that performed both of Tyler's surgeries.). This was his first public performance since the transplant. He is an excellent pianist and Jamie and I had a great time.


We doubled with some friends in our ward who recently found out that their baby is going to have HLHS, like Tyler. It's amazing how many people CHD's affect, but it's even more amazing that medicine has progressed so far that these conditions are treatable. Now if my brother Mike, who is a biomedical engineer, would just invent a cure for Tyler's condition :)

Only negative from the evening - We went to Texas Roadhouse for dinner beforehand and then topped the evening off with cheesecake from Cheesecake Factory afterward. It was great in the moment, but I ate way too much and had horrible indigestion throughout the night and the next day. I guess it's another sign I'm starting to get old.

CHD Awareness Week!

This week is congenital heart defect awareness week. I still can not believe that my family has been affected by this terrible disease. Every day I have hope for my sweet little Tyler who was born with a severe heart defect. Just to give you a better idea of how many kids are affected by heart defects here are some statistics:

*Every fifteen minutes a baby is born with a CHD.

*Congenital heart defects are America’s #1 birth defect. Nearly one of every 125 babies is born with a CHD (almost 1% of all children born each year!).

*Congenital heart defects are the #1 cause of birth defect related deaths. 1 in 3 children who die from a birth defect have a congenital heart defect.

*This year almost 40,000 babies will be born with a congenital heart defect.

*In the U.S. twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined. Yet funding for research of pediatric cancer is 5 times greater.

*From 1993 to 2003 death rates for congenital heart defects have declined by 31% due to advances made through research!

*There is not yet a preventative cure for any type of congenital heart defect.

*Of every dollar the government spends on medical funding, only a fraction of a penny is directed toward congenital heart defect research.

Hopefully by helping to bring awareness we might be able to find cures and give new hope to all of the sweet babies who have to fight and struggle so hard to live.

Here are a few pics of our heart baby over the last 11 months of his precious life!! We love you!

Tyler - March 6 ,2009, just a couple of hours after he was born.

March 9, 2009 - First open heart surgery, the Norwood Procedure

Recovering from the Norwood in the ICU

Our little blueberry - post Norwood. Feeling good!!


July 29, 2009 Tyler had his Glenn Procedure. Poor little guy - trying to recover.


Happy to be back home with no surgeries for a while.

Our sweet little Tyler at 10 months - happy as can be!!

Just a little update

Everything has been going so good here in the moffitt household! By good, I mean that we have been staying away from the germs! All of the kids have been pretty healthy so far this winter season. Steven had some asthma trouble and a weird infection in his neck, but other than that we have all been well. I keep my fingers crossed every day that we don't bring anything horrible in this house so that we can keep our little Tyler as healthy as possible. I think a few prayers and some blessings have helped as well! The kids still love school and are doing great! kaylin loves going to the library for "story time", they also do singing and some activities and give homework. I do this once a week and try to keep Tyler away from the kids. I think it has been going well so far. Tyler has been doing so much better since our last post. He is eating better, but still hasn't gained any weight, over all he is doing so good!! I am so grateful every day, grateful for all that I have and thankful for all that we have been blessed with!!

The latest on Tyler

As some of you already know, Tyler went to the UCLA Hospital while we were on vacation in California. He has been having problems with periodically throwing up over the last week or so. In conjunction, he also hasn't been eating well. It started the Saturday after Christmas, but Tuesday was the worst day for him - he drank only a four oz. bottle in the morning and nothing else. Obviously, that was quite concerning to us. Oddly, except for him not eating as well, he seems fine between his episodes of vomiting. There are no other symptoms of an illness. If any other "heart moms" are reading this and have experienced something similar, please share any thoughts on this with us.

Tyler seems like he is doing better now, but he still doesn't quite have his normal appetite. We will definitely be in touch with his docs this week. Other than these recent concerns, he has been doing very well overall and keeping us very busy.