Landon's Heart

Landon's Update 4/10/09

2009-04-11T17:09:00.000-07:00

Landon's echo was scheduled for 8am, so we decided to just drive out to Phoenix on Thursday night, stay in a hotel, and then go to his appointment from there... that was a bad idea number one! Bad idea number two was to bring Ashlynne... both kids stayed up until almost 4am! They can not sleep in the same room, they kept eachother up all night. Well after a frustrating night, we woke up at 7am to make it to his appointment by 8am. After his echo, we drove a block down to the CRS clinic to see his doctor. While we were checking in, the Phoenix local news was there with the Easter bunny, they were handing out baskets, it was cute! Landon was terrified of the bunny by the way! Well now for the good stuff, Landon is doing great! Our prayers are definately being answered! His gradient is still at the same spot, so his doctor said since his condition has been at a hault, and he's old enough to be out of that critical point, he may stand a chance at not needing surgery for 5 years! He said it's about a 40% chance, but things can always change, his condition isn't always predictable. So keep on praying because God is definately watching over him!

Just arrived, and they were mad the car stopped!

Landon got in trouble for ripping out the tissue from the dispenser!

Landon in the waiting room!

They were so glad to be on our way home!

My poor little guy!

2009-03-31T14:09:00.000-07:00

Landon saw his pediatrician today, he's doing ok, he could be better! Landon wouldn't eat for 2 days, but thankfully he's eating a little more now. He weighs 27 pounds which isn't that big for a 15 month old. He was always in the 95th percentile for his height and weight and now he's in the 75th percentile, so hopefully he doesn't keep decreasing. He has some congestion in his chest, so the doctor gave me a prescription just in case he spikes a fever, he said if his cough gets worse and he does have a fever, then it turned into bronchitis, so I'll have to watch for that. His doctor is also watching him for asthma, he asked if it ran in the family, and it does, so he put it in his chart but said nothing else, so I don't know if he's too concerned yet. But other than that, Landon took his shots like a champ, and tried rolling his eyes at the lady, he's so silly! Oh and to top it all off, he's getting his molar teeth in, he's been miserable. That's probably why he doesn't feel like eating, but anyone who has seen Landon eat, knows that kid doesn't pass up food, so it's a little worrisome!

This is our chance, help spread it!!

2009-03-19T12:33:00.000-07:00

Please help Landon and the many other children affected by Congenital Heart Defects! All you have to do is fill in the [ ] with the correct wording below (if relation is unknown please put friend), then highlight the letter, and then copy it. Look up your state's Senator's contact form by going to http://www.senate.gov/ After you located the contact form, paste the letter and send! If you would like to write your Congressman as well, you may do so by visiting http://www.house.gov/ It's so easy and you can be apart of a big impact for many children! Please send this along to all your friends and encourage them to send it along to theirs, and so on! Thank you!!

Dear Senator [Your state Senator],

I am writing as a [relation to Landon] of the congenital heart defect community to ask for your help in making a brighter future for all those born with heart defects. On March 17, 2009 the Congenital Heart Futures Act, legislation calling for research, surveillance, and education in congenital heart disease, was introduced in the Senate by Senators Durbin and Cochran and in the House by Representatives Bilirakis and Space. I am writing to ask you to co-sponsor these bills (S. 621 and H.R. 1570) and help all those born with heart defects live longer, healthier lives.

Congenital heart disease is this country’s number one birth defect and kills twice as many children as childhood cancer. Although many children now undergo successful heart repair, most will require special life-long care and face high risks of developing additional heart problems. But up until now there has been virtually no federal investment to address the research and education needs of the 1.8 million Americans now living with congenital heart disease.

My [Landon's relation to you] was born with a very serious heart condition. He will need routine visits to his cardiologist, as well as multiple surgeries throughout his life. I want to be hopeful for his future, but right now I know there is a severe lack of research, awareness, and resources available to help us help him do well as he gets older. Please help me help my [Landon's relation to you] survive to become a healthy, productive adult.

To sign on as a co-sponsor of the bill, House Members should contact Dan Farmer with Rep. Space at (202) 225-6265 to discuss support of H.R. 1570. Senators should contact Sara Singleton with Senator Durbin at (202) 224-2152 re: S. 621.

Thank you in advance for your help in securing a future for all those living with congenital heart disease.

Sincerely,
[Name]
[Mailing address]
[Email address]

Landon's next Appt.

2009-03-11T12:33:00.000-07:00

Landon's next appointment is scheduled for April 10th. After an all day event, I'll be home to update! Just wanted to let you all know! :)

Landon is doing great!

2009-02-19T23:11:00.000-08:00

Landon got his stitches taken out today, woo hoo! I also asked about his blue lips, and finally someone explains it to me, instead of just saying oh he's fine. His pediatrician said his blue lips mean his oxygen is getting down into the 80's, which is ok as long as it goes away, which it does. He said that if his tongue is blue then his oxygen is down in the 70's which is not ok, so I've been keeping a look out, and so far so good!

Coffee Table: 1, Landon: 0...

2009-02-14T18:24:00.000-08:00

Last night Landon decided to fight the coffee table, and well, the coffee table won! The corner of the table got him good, it went to his skull. He had to get 4 internal stitches and 6 external stitches. He's doing fine now, he's such a boy!

Landon, Landon, Landon...

2009-02-12T11:03:00.000-08:00

Why do you wake up every morning with blue lips?

Yep, he's at it again! Well I know his heart condition isn't the main contributor, so I guess I'll call his pediatrician again! I'll call during his nap time so I'm not interrupted, and then I'll update if necessary!

And just because he's so darn cute...

Why?

2009-02-06T22:46:00.000-08:00

Why have we never heard of Congenital Heart Defects before being faced with one? Why have we never seen commercials about Congenital Heart Defects? Why have we never seen a grocery store raising awareness and taking donations for Congenital Heart Defects? Why?

Even though Congenital Heart Defects affect 1 in every 100 babies, that's 40,000 a year in the United States alone. Congenital heart defects are the leading cause of all infant deaths in the United States. Each year over 1,000,000 babies are born worldwide with a congenital heart defect. 100,000 of them will not live to see their first birthday and thousands more die before they reach adulthood. In the United States, twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD. Congenital heart defects are common and deadly, yet CHD research is grossly under-funded relative to the prevalence of the disease. Only one penny of every dollar donated to the American Heart Association goes towards congenital heart defect research. Of every dollar the government spends on medical funding only a fraction of a penny is directed toward congenital heart defect research.

(Source: Children's Heart Foundation)

Our babies depend on awareness, which will raise funding, which through research, will save so many lives!

CHD Awareness Week

2009-02-05T15:00:00.000-08:00

February 7-14th is CHD Awareness week. I decided to make a yard sign to help spread awareness. It's not perfect, but I tried! :)

Landon's Update 1/27/09

2009-02-03T15:24:00.000-08:00

Landon had a new echo tech today and I did not like him, he was so rude!

Anyway, Landon is still doing fine, they don't know why his lips were turning blue. They told me to watch for his tongue, if that's blue then I need to call 911. His gradient hasn't changed much since last month, so his next appointment will be in April.

Landon Gives us a Scare!

2009-02-03T15:20:00.000-08:00

Landon had been waking up in the morning with blue lips, I just assumed he was cold. I brought it up to his Pediatrician and she was very concerned. She tested his oxygen, which was fine, she was still worried and had me call his Cardiologist. So they scheduled him a sooner appointment.

Landon's Update 12/12/08

2009-02-03T15:09:00.000-08:00

Landon had a wonderful echo, he fell asleep through most of it! Gary, the echo tech, was hilarious as usual, i love him! Anyway, after having the echo he had to go to the CRS clinic (State funded health care only for special conditions) where he saw his Cardiologist.

Oh and before going into the room he had to get blood pressure and stuff done, well a nurse peeks in and says, "I see it's his birthday coming up, there's a present in the room for him!" I'm thinking like silly hospital ball or hat, nope, we walk in and there's this huge box on the table. Landon opens it and it's a huge firetruck ball pit!!! I was so surprised, they're awesome!

Well his Dr. was like wow, his numbers went down (I'm not sure what he meant because his last one was 30-something), BUT that doesn't happen so his last echo was wrong, which it probably was cause he screamed the whole time. So Landon's gradient is now at a 43, and 50 is surgery time.

Oh and something else for me to be scared about, with his condition he can get an enlarged heart, since the heart is a muscle and his is working double time, it can begin to get bigger just like any other muscle! :/

Landon's Update 8/27/08

2009-02-03T14:59:00.000-08:00

Landon was switched back to Phoenix, Flagstaff was a terrible hospital, no one in that office knew up from down.

Landon's condition is still getting worse, but slowly! His gradient is now at a 35 and surgery time isn't until it reaches about 50. His next appointment is in 4 months and he'll get another echo.

Oh and he does have a bicuspid valve, which means only two of the leaflets are open, the other one is fused together. They told me he had it, then said no, but now it's for sure that he does. So thank God he's still doing good!

Landon's Update 4/10/08

2009-02-03T14:51:00.000-08:00

Landon was switched from Phoenix to Flagstaff, so he missed his February appointment. Today his echo showed that his gradient (the pressure from the narrowness, the higher it goes the worse it is) has doubled since his last appointment, his condition is still only moderate, so no surgery yet! Woo hoo!

Landon's Update 1/15/08

2009-02-03T14:41:00.000-08:00

Landon had his appointment in Phoenix today and I thought it would assure me everything would be fine, but it just made me scared! His condition has progressed from mild to moderate, so it has gotten worse. He will have the balloon surgery (they'll put a balloon through his groin and up to his aortic valve and open it up). The cardiologist said he'll need the surgery anytime from 4-7 months. He said about 50% need the surgery done again in about 5 years. The balloon surgery can't be repeated very much because they can cause the valve to become too leaky. So keep praying for him please! I'm really scared about his condition now, it's way more serious than I thought. His next appointment is February 26th so they'll do another echo and see if he needs the surgery sooner or not. On a good note, his aortic valve is the size it should be, so that's really good, he said in most cases the valve is an abnormal size and doesn't grow properly which can cause a whole number of extra problems.

His first Smile!

Landon's Here!

2009-02-03T12:05:00.000-08:00

Landon Robert Ferguson was born December 21, 2007 at 5:10am. He weighed 7 lbs. 14 oz. and was 20.5 in. He appeared to be a happy, healthy little guy.

After a few hours of being passed around, I tried to feed him, but he would not eat. After trying for countless hours to feed him, the nurses decided to check him out. His oxygen was low so they put him under an oxygen hood.

They soon realized that his heart murmur wasn't a normal newborn heart murmur, so to be completely safe they flew him to Phoenix, AZ.

Imagine your baby leaving in this, without you!!

There was no room on the plane for me, I had to drive down to Phoenix the next day.

Landon went straight to the NICU at St. Joseph's Children Hospital. The nurses loved him, they couldn't believe how healthy he looked.

Since Landon was doing fine, they moved him to the Annex. Once he was in the Annex, he had an echo done. The next day it was confirmed that Landon was born with a CHD; Aortic Stenosis, Aortic Regurgitation, and a Bicuspid Aortic Valve. Though his condition was only mild, it will soon worsen, that's what it does.

After staying at the Ronald McDonald house for what seemed like forever, I was ready to go home. I was ready to bring my baby boy home, and I missed Ashlynne! He had to stay until they were completely confident he wouldn't need oxygen anymore. On Christmas Eve morning, we got the best news ever... we could go home!! My Mother-in-law, Ann, was with me, and we couldn't shovel Landon's things into her car fast enough! It was such a relief to finally be on our way home!