I Have A CHD

I have never really talked about this much, probably because Natalie's CHD is so severe.  

I was born with a ventricular septal defect (VSD).  My mother said when I breathed, my chest would sink in and then come back up.  She said it was horrible to watch.  I was luckily though, the doctors gave me a shot of medicine that was able to close the hole about 90% or so.  I live a normal life.  I played sports growing up and have had two amazing children.  

I do remember going to a cardiologist when I was young for EKGs and Echos.  I also had to take antibiotics before the dentist up until a couple of years ago, when new research showed I did not even need that any more.  

Most recently, I went to a cardiologist a few years ago before I ran my half marathon to be sure I was okay. He said I was doing amazing and did not even need to come back for another 10 years.  

I never really talk about myself and honestly, it was not until recently did I realize that I actually had a CHD.  When I was a kid, I do not think they talked much about CHDs.  But time has changed and with the improvement of medicine and technology, it is much easier to diagnosis a baby born with a CHD.  CHD is still the number one birth defect though.  Let's get out there and make people aware of CHDs and new mother's aware so they can get their baby's screened before leaving the hospital.

CHD Awareness Week

It is CHD Awareness Week!  I thought I would give you a few CHD facts I got from a friend, Jamie Snyder, who also happens to run our heart group, High Plains Mended Little Hearts, here in Amarillo...

CHD Fact 1. Congenital Heart Defects (CHD) are problems with the heart's structure that are present at birth

CHD Fact 2. Common examples include holes in the inside walls of the heart and narrowed or leaky valves. In more sever forms of CHDs, blood vessels or heart chambers may be missing, poorly formed, and/or in the wrong place

CHD Fact 3. CHDs are the most common birth defects.  CHDs occur in almost 1% of births, or approximately 1 in 125 births

CHD Fact 4. CHDs are the most common cause of infant death due to birth defects.  An approximate 100-200 deaths are due to unrecognized heart disease in newborns each year.  These numbers exclude those dying before diagnosis.

CHD Fact 5. Nearly 40,000 infants in the U.S. are born each year with CHDs

CHD Fact 6. CHDs are as common as autism and about twenty-five times more common than cystic fibrosis

CHD Fact 7. Approximately two to three million individuals are thought to be living in the US with CHDs.  Because there is no US system to track CHDs beyond early childhood, more precise estimates are not available.

CHD Fact 8. Thanks to improvements in survival, the number of adults living with CHDs is increasing.  It is now believed that the number of adults living with CHDs is at least equal to, if not greater than, the number of children living with CHDs.

I bet you know someone with a CHD even if you do not realize it.  Natalie and I were asked to model as survivors this coming Tuesday in the Go Red Luncheon here in Amarillo.  Larry's administrative assistance was the one who asked us, because she is a model too.  What? I had no idea she was a CHD survivor; small world.  She had an ASD and was able to have it repaired through a heart cath when she was young.  

By telling you this, I am sure there are adults our there, that have a CHD that you never knew about it.    

Did you also know that, Shaun White, the pro snowboarder, has a CHD. He had two open heart surgeries  before the age of one.   Matt Hammitt from Sanctus Real's son has HLHS and if you ever watch Scandal, the DA, Joshua Malina's son has a CHD as well.  

People, CHD is the number one birth defect! Join me this week and spreading the CHD facts and lets make people aware.  Moms, request a pulse ox on your child before leaving the hospital.  It is non-invasive, basically the put something on the baby's toe and/or finger to check the O2 levels.  

Orange Belt

Guess who had his first belt test last week?

I know his eyes are closed, but the smile makes it worth it
He was so pumped to earn his first trophy ever and his orange belt

Carter and Master Kim

 

CHD Awareness Week

CHD Awareness Week is coming up...February 7-14th

Check out this amazing video below...

 

 

One Crazy Month

Romans 8:31

"What, then shall we say in response to this? If God is for us, who can be against us?"

 

Well, I knew I was probably jinking myself a few posts ago, when I told 2013 to bring it on.  So far, 2013 has brought highs and lows, but that is okay, because we like to take things one day at time with this family.  I can thank God for showing us that with our precious Natalie.

 

I am kind of shocked right now that there is only today and tomorrow left of January.  I am not sure where this month has gone. We have some great days this month and some difficult ones as well; that is life though.

 

Natalie is doing great!  She started ballet/tap at the beginning of the month and loves it.  She has so much energy now.  Larry and I joke sometimes, that maybe Dr. Forbess fixed her heart a little too good.  Of course, we are just so excited with how good she is doing.  I still have not started her back in school or any type of nursery yet.  The flu and rsv season here has been horrible. I went to Walgreens the other day to pick up one of her normal prescriptions and they had filled over 200+ prescriptions that day alone; yikes!

 

Carter has been keeping us busy.  I did not think my child was in that many extra sports and he really is not compared to a lot of other kids.  But, we have either basketball practice, basketball games or Tae Kwon Do 6 nights a week! 

 

Watching Carter play basketball has to be one of the funniest and cutest things ever.  Luckily, we are in a great organization, YMCA.  I am so impressed with the staff and how the handle the kids.  It is all about them learning the sport and everyone, including parents being positive and supportive.  

 

Larry is busier than ever, but what is new.  He started back to school this month after a semester off.  Getting back into the swing of things with balancing that, work and family has been challenging, but it always is until we get on a good schedule, which I think we have. 

 

My life continues to be nuts, however that seems to be my new normal these last few years.  The beginning of the month, I had a little surgery.  No, I did not have plastic surgery, so please do not stare at me next time you see me.  I had an endometrial ablation done.  The surgery itself was in-office and lasted about 45 minutes, all of which I am happy to say I do not remember a thing.  I did however spend the rest of the day in bed recovering.  I do not handle anaesthesia well, if you know what I mean.

 

The following week, my sweet grandmother passed away.  She has not been in great health for a while now, but everything happened really fast.  I was able to spend a few moments with  her on a Sunday afternoon, when she was still pretty coherent.  I then stood by her side on Tuesday as Heaven welcomed her.  

 

I then met a two of my friends in Georgia several days later to go visit my friend, Amelia.  I believe I spoke about her in early December.  She was in a horrible car wreck and has a severe brain injury.  I was not sure what to expect, but she looked good, just still in a coma.  Amelia did get accepted into a brain trauma center this past week in Atlanta and is being transferred today.  Please keep her and her family in your prayers.

 

I am hoping that is all my excitement for the next two days of January.  However, if God has other plans for me, that is okay, because I will let Him deal with it as it comes.

 

I will try to post more frequently now.  January as you can see has been a little crazy.  

 

FYI...February is Heart Awareness month!  I will be posting throughout the month, so check back for updates and facts on CHD.  Friday, kicks off the month, so wear read in honor of Natalie or another little CHD kiddo!

My Little Ballerina

Natalie started ballet/tap last Monday.  I am really not sure who is more excited me or her.  I can not lie, I did shed a tear or two.  I mean how can you not, look at this picture and tell me she is not the cutest thing you have ever seen?

She was so excited!  We bought her tights, leotard and ballet shoes the Friday before.  She wore them every single day since.  She even worn them out to get pizza one night.  Larry looked at me like, "Really you are going to let her wear that out?"  I looked back and said, "Yes, I am, because she is too cute and is so happy, why not?"

She was jumping up in and down when we bought her stuff.  Plus, I have been telling her Ballerinas use the potty and not diapers.  So she is on board! Next week, here we go...please say lots of prayers it works this time!

We did go to see Dr. Scott our pediatrician before class for a check up.  I am so excited to say her oxygen was 87!  Can you believe it!  I am so happy and thrilled she is doing better every day.  Her voice is still an issue, but I am praying that one day it will go back to normal.  However, I will take 87 for now and not complain on bit!  She also weighs 25.2lbs, so we are getting there. 

I am just so proud of her.  You can definitely see a change in her personality and energy level since surgery.  In fact, we are starting to cut naps out completely!  Thank again for all that have been praying for us and to all the help us get Natalie where she is today!

Happy 2013

I can not believe it is already 2013! Not sure about yours, but Christmas break flew by at our house.  We had a wonderful holiday season filled with lots of fun, family and good times!

Carter of  course got the flu 2 days before Christmas.  I mean really, the child just had it not even 2 months ago.  Never again will I do the flu mist.

I think we got it early this time, because he never really felt that bad expect for 3 hours on night.  I am taking that as a good sign and another learning lesson for him.  He came home from school today and told me how he used hand sanitizer before lunch; this is one proud mama right now.  Not to mention, Santa brought both kids hand sanitizer for their stockins.

Both kids were so excited about Santa coming to visit this year, but it is always a little sad the night before knowing our Elf on the Shelf, Character, will be leaving again until next year.  The kids stood in front of him and told him how much they loved him and will miss him.  Too cute, but once again I am so excited that I have one whole year (okay, a little less than a year now), before I have to remember to move him every single night.  I only forgot once this year and it was the first night he had made his appearance too.

I think Natalie's face was the best on Christmas morning this year.  Doc McStuffins was sitting right under the tree.  She could not get down the stairs fast enough.  Only to open her stocking a few minutes later and was stunned that Santa knew and brought her favorite candy, smarties.  She still talks about how he knew. 

Carter loved Christmas too!  I am not sure about Larry though.  He got to spend most of the day putting legos together.  I finally looked at him after he had been complaining off and on for 3 hours and said, "Bet you do not make the mistake of not helping me buy presents next year, huh?" 

I did not think of it at the time of buying presents, but what an awesome lesson for Larry.  I bet come next November he is right by my side at Toys R Us...Point One for this Mommy and Wife!

Larry's family came in 2 days after Christmas to celebrate in Amarillo with us.  We had a lot of fun.  The kids had a blast playing together. 

We then went on to Taos, NM to go skiing.  Larry's parents stay in Amarillo with Natalie. I do not know if she will ever be able to handle Taos.  The pass is 9300 ft!  Larry and I now monitor elevation on my car when we travel to new places.  Guess that is what happens when you have a little one with a special heart.

Carter and Larry

Caleb Harrell, Kalei Aurit, Zac Harrell and Carter

Carter and his cousins had a blast skiing!  It snowed 15 inches on New Year's Eve.  The snow and skiing were amazing.  I will have to post more pictures later of the cars that were literally buried in the snow.  That morning we parked my car to go skiing and when we got back in the car that evening, the snow was past my knees!

The mountain lost power as well and was running of the generator.  We were actually about to get on a chair lift (still thanking God that we were not on it) that shut down.  The ski patrol ended up having to get the people off the lift. I do not know how they did nor do I really want to know, but everyone was safely removed off the lift.  All I knew, was that after standing there 15 - 20 minutes waiting for them to try and get the lift back running, I decided:

A. I was not getting on that lift until it had been running fine for at least 30 mins. and

B. I was not getting on another lift until I went to the bathroom first

We all had a wonderful time skiing, however come to find out that the place we stayed had a few issues to say the least.  Luckily, Larry and I decided to stay in a smaller room in the center of the house we had rented.  The two back rooms had, just wait for it...bed bugs! Gross, Gross, Gross!

Then, the hot tube had some issue too and caused a few people to get rashes.  I am happy to say I never even stepped close to the hot tube and ever time Carter got out of it, he went straight to the shower. 

Larry and I were lucky and never had bed bug issues.  Carter has what looks like one, maybe two bites and small rash that is now gone from the hot tube.  It was like the house that keeps on giving!

We have all taken the precautions necessary to make sure we did not bring any little guys home with us and are monitoring our beds to be sure.  So far, Larry and I think we are good, but we will still be checking.  We left my car and bags outside in the freezing weather since we have been home and I have washed all of our clothes on high heat.  I am hoping what might have saved us, is this place does not have carpet or really rugs anywhere and from what I have read, bed bugs to not like slippery floors. 

I am still praying for Larry's sisters and their families.  They were not as lucky as us in terms of getting bitten and rashes, but they have all gone to the doctor, so I am hoping the are on the mends.

What an awesome start to 2013, huh?  Bet you wish you were us?  There are worse things in the world and I am just happy we had fun and no one ended up coming back to Amarillo to stay with us another night..just kidding, but not really.  His whole family was going to come stay one night with us on their way back to Austin, but decided to go another way.  I can only image what we would be doing to our house right now, all those bags, blankets and pillows with whatever, if anything on them everywhere in our home.  That almost gives me a headache to think about it. 

Natalie had a blast with Larry's parents.  She had them all to herself and enjoyed every minute of it.  They played puzzles, painted, made necklaces and Natalie learned to sew. 

Natalie after necklace making

Natalie's first sewing class

Poor Jo Anne, Larry's mom, did not have such a great time the last day.  She got the stomach bug and was in bed for a day.  Luckily, no one else got it and she feels fine now, but man, that is no way to start a new year either. 

 I am praying we got all the yucky stuff for our year over with already...could I be so lucky? Guess we will find out as the year goes. Welcome and bring it on 2013!