Sickness Has Come and Hopefully Gone

I use to love winter and still kind of do, but I hate the sickness season that goes along with it. I know it is only January, but I am ready for summer. Not the swimsuit part of summer, but the kids being well part. I am sure by the end of June I will be wishing for school to start back and for the fall to come, because it is too hot. I guess that is just life.

Things have been going great since my last post until last Friday. Carter woke up from nap with 103 fever. I was starting to think how lucky we were, that we had not been sick in almost a month...I spoke to soon.

Carter does this deal were he runs a fever for about 12 to 24 hours and then is totally fine. Last year this happened every few weeks. We would take him to the doctor, they would run all the standard tests and everything always came back fine. The one thing I learned last year and will never forget, when Carter has fever and you put him in the car for more than a few minutes, he will puke. Unfortunately, I was not the only one who learned this; Larry and his parents have as well.

By the time he woke up from his nap, it was too late to call the doctor and get him and I was not about to take him to Urgent Care; been there done that, left 5 hours later with puke all over me and yes, I was pregnant with Natalie. I decided to hold off and see how he was the next day. Would you not guess, he was acting like nothing had ever happened, hyper as ever and wanting to go ninety to nothing.

Sunday, Carter was back to 100%. However, when one kid gets sick normally another child will follow in some sense. Natalie decided she needed to get the stomach bug. Now, her stomach bug was different then I have experienced. She really only threw up 4 times and had one 2 diarrhea diapers. She would not eat hardly at all. I started making bottles with pedialyte versus water to help replenish her. She did not have a wet diaper in 12 hours, I started kind of freaking out. By this time though, it was 1:30am and I was not about to take her to the ER. She was showing no signs of dehydration, so I thought I would give it until the morning. Good thing, because she woke up with a soppy wet diaper. Later that day, she was even eating cheerios again.

Kids, I wish I could have fever or the stomach bug and less then 24 hours be totally back to normal. I would be down for at least two days, but as most moms to still fulfilling her mom duties, of washing clothes, picking up toys and taking care of the kids. Men on the other, not all, but most would be out for days laying in bed doing absolutely nothing. Life is so funny!

Natalie had a check up here in town with Dr. Luckstead, our pediatric cardiologist in town. He said she looked great! Natalie is in the 9% percentile on weight, she has slowly increased since the first time we saw him back in February of last year.

I have been having this fear lately that something will go wrong with her heart. I do not know why, because she just seems to be doing so good and everyone says we will have signs. If you did not know she had a heart condition, you would not be able to tell until you saw the scar on her chest. She is so amazing! I feel so blessed each day she wakes up, she is so happy 90% of the time. I know I do not need to worry, but I just get overwhelmed sometimes with her future. I know God will only give us what we can handle and we have the best doctors around watching her. I guess, this is just how a heart mom feels.

I am involved in a group here in town, High Plains Mended Little Hearts. I am sure I have mentioned them before. There is about 5 families now and they have been such a blessing to me. I actually called one of the moms the other night having a little freak out moment. Jamie was wonderful and helped calm me down and talk to me about things. I feel so lucky to have these moms and their heart babies in my life to talk to.

I guess I have just realized this is my life now. Even after Natalie's next surgery, she will be fine as fine, as one can be functioning on half a heart. I have had several people ask me, "once this next surgery is done, you are done, right?" Sadly no, she will always have maintenance work done or even, possibly need a transplant in the future. Now a transplant could be at age 12 or at age 40 or never, who knows. Medical improvements are happening all the time, so Natalie will be fine, it is just a long road that we are on. I know I can handle whatever comes our way, I just wish she did not have to handle it. I hate not being able to protect her from the surgeries or not being able to fix her as parent (that is my job). I guess, I just have a lot of emotions that I go through daily. People tell me I am strong, I do not feel strong. I just take life one day at a time and there is no way I could do it without our Lord Jesus Christ. For now, I just continue to put my faith in the Lord and know he will guide our path no matter what that path looks like.

"For I know the plans I have for you, declares the Lord, "plans to prosper you an not to harm you, plans to give you a hope and a future"

Jeremiah 29:11

To close on a happy note...We have almost been back in Amarillo a full year! February 14th will be one year, kind of ironic since is is heart day and she has such a special heart.

All of Me...Matt Hammitt

I was driving home several months ago from the gym at 6am and I was listen to KLove, which I normally do. They asked if everyone would keep the Hammitt family in their prayers today as their son, Bowen, was about to have his first of several open heart surgeries. Bowen Hammitt is the son of Matt Hammitt, the lead singer of Sanctus Real (a Christian Group). Of course, this touches my heart deeply after all we have and continue to go through daily. By the time I got home, I could not remember the blog, go figure that is my brain for you. A few weeks later they talked about it again and this time, I pulled over to write it down. I had been trying to find the blog since the first time I heard about it, but for some reason could not. I guess, God knew how much I had been praying for them and how greatly Bowen had already touched my heart.

Bowen has Hypoplastic Left Heart Syndrome (HLHS). HLHS is when the left ventricle is hypoplastic, meaning it is underdeveloped or not functioning. The prodecures to help correct this are very similar to what Natalie is going and has gone through, just on the oppositve side of the heart.

Matt Hammitt wrote this song for his son Bowen. It is not our yet, but will be on the next album...

All of Me...

Afraid to love something that could break

Could I move on if you were torn away?

I'm so close to what I can't control

Can't give you half my heart and pray He makes you whole

You're gonna have all of me

You're gonna have all of me

You're worth every falling tear

You're worth facing any fear

You're gonna know all my love

Even if it's not enough

Enough to mend our broken hearts

But giving you all of me is where I'll start

I won't let sadness steal you from my arms

I won't let pain keep you from my heart

I'll trade the fear of all that I could lose

For every moment I'll share with you

You're gonna have all of me

You're gonna have all of me

You're worth every falling tear

You're worth facing my fear

You're gonna know all my love

Even if it's not enough

Enough to mend our broken hearts

But giving you all of me is where I'll start

Heaven brought you to this moment

It's too wonderful to speak

You're worth all of me

You're worth all of me

Let me recklessly love you

Even if I bleed

You're worth all of me

You're worth all of me

World News interview the Hammitts around Thanksgiving. I have posted the link to the page, which also has a link to Matt singing his song. What a testimate to faith!

www.bowensheart.com/2010/11/25/happy-thanksgiving/

I ask you all to say a prayer for all the congential heart defect children and their families and for all the children and the families of the children who have gone to Heaven to be with our Lord and Savior...

Living with CHD...What does it mean to you?

Natalie on Christmas Eve

I was trying to find something to write about today when I came across a friends blog. The Synder family has been a huge source of information for us and an inspiration. Kaston, their son is 8 years old and lives in Amarillo. He has the same heart condition as Natalie. They had different surgeons but have the same doctor in Dallas at Children's, Dr. Zellers. Jamie, Kaston's mother has been amazing, because I have asked her all sorts of questions about things happening now or even things to look out for in Natalie's future. Thank you Synder Family for all your help.

Jamie posted this on her blog a while back. The post is written by another CHD (Congential Heart Defect) Warrior and Heart Mom. This gives you some sort of perspective of what it is like to live with CHD from an adult standpoint.

From their prespective:

It's always wondering "why me?"

It's looking at othes who are just like you, seeing they are worse, but still feeling bad.

It's no one ever understanding, you look good,, you look fine and healthy and when people see you they don't even know your sick.

It's them wondering why you're sitting out.

It's them wondering why you never do the normal things people your age do.

It's them thinking you are lazy.

It's them thinking you're cranky and need to get over it.

It's them knowing that you're sick and still wondering why the hell you're sitting down all day.

It's them thinking you're faking.

It's them not believing.

It's feeling so tired, and so bad, but you can't express the feeling to anyone, not even yourself sometimes.

It's worrying.

It's knowing that every day you could be getting worse.

It's never knowing when something will go wrong.

It's that feeling inside that something is wrong and fear of what now.

It's never knowing if the cough will turn into full blown pneumonia.

It's the scar, knowing you should love it, know it's there and it saved your life, and it's loving it. But wishing sometime that you could have just one picture without it.

It's the medicine you take every day.

It's the life style you have to learn because of it.

It's the side effects of the medicine, the bruises, the need to pee, and even the headaches and nausea.

It's the pain.

It's the rapid heart beats that just come out of no where.

It's the sitting still, breathing, trying to wait it out.

It's taking deep breaths that hurt.

It's the having to do breathing treatments.

It's the cost of the medicine and the cost of the doctors.

It's fear.

It's the emotions you feel watching your loved ones having to go through these emtions with you.

It's the fact that you see how hard your spouse, parents, siblings, children want to help but can't.

It's the upcoming years of knowing the long term affects from it.

It's the depression that no one understands.

It's the days you spend in bed because you're so exhausted for no reason.

Its the sadness you feel when you see others doing all the things you want to do, but are told no from your Dr.

It's the love you get from strangers.

It's the stares, the looks the ignorance from people who see you scar and try to figure out what the heck??

From a parent's prespective:

It's the "always there in the back of your mind."

It's celebrating the small victories and letting things go that don't really matter in the end.

It's the constant test of strenght mentally and emotionally.

It's trying to balance being overly catious with not catious enough.

It's the constant Praises to God for giving us a chance to love a little girl, He allowed us to keep on Earth.

It's the "I'm so sorry" look from strangers that see the scar and having to put it all in in a positive light, always.

It's the out of nowhere blood pressure drops that cuase your little one to fall to the floor.

It's the fear of the unknown future, yet rejoicing in the present.

Its the biggest challenge we have ever faced.

Its the biggest blessing we have ever received.

Welcome to 2011

I can't believe it is already 2011! Where does all the time go?

We had a great Christmas, but I am glad it is not for another year. I finished putting up the last of the lights outside the house today. We finally had some warm weather and thought I would take advantage of it, before the cold comes back next week.

Our Christmas was great! We went to my aunt and uncles on Christmas Eve, which is a tradition unless we are with Larry's family. When we got home Carter thought he saw Santa in the sky (bright star), he was freaking out. He was so excited and screaming, "Ho Ho Ho." We ended up not getting him in bed until 10:30 that night. My mom also stayed the night with us and she slept in Carter's bed while he slept on the floor in his new Lighting McQueen sleeping bag.

Luckily, no one woke up until 8am Christmas morning. Carter was a bit upset that Santa did not come to his room and wake him up and that Santa left a few cookies (will learn for next year). Carter got a Leapster 2 and Natalie got a new outfit and a plastic horse that she can sit on, but all she does is carry it around the house.

The following week was slow in some ways and fast in others. Do not get me wrong, I love my kiddos, but Christmas break is a little long, especially when it is cold and you are stuck inside all day with kids that are still wired from the excitement of Christmas. We made it threw however, with lots of patients on every one's part.

Natalie got another RSV shot, so that was good. She is also getting in the last of her teeth, her canines. She woke up New Year's Day at 4am with fever, but has not had any since. I finally was able to look in her mouth and they are breaking through the gums now. I hate teething! Carter was never really cranky or feverish with his teething, but Natalie, well she is a different child.

It has been 2 weeks since her ear tubes were put in so she got a normal bath last night. We actually have tubes where she can get her ears wet; nice. So far so good, with no illnesses...Knock on Wood! Natalie does seem to be talking a lot more since her tubes. I am not sure if it is that she can hear better now and/or that we are taking her pacifier out more. Either way, it seems to be working. I am excited to see how her hearing has changed when we go back for her follow-up in February.

Carter started school back this week and we are getting back in routine. I have also decided to play catch up on my last year's resolutions:

1. Photo Books caught up and ordered - all done for 2010, except December which I need a few more pictures from Christmas

2. Natalie's 1st Year Book - all done except for 2 pictures, townhouse in Dallas and the current one we are in (yes, she lived in 4 different homes her first year)

3. Make the Blog into a book we can keep - found a site and have played with it, but now I need to get to work

4. Update our Wills and Medical Documents - I know, but this is really important to me for us to update them. We made our wills when Carter was 4 months old. I have done all I can and now it is up to Larry (with me on his case)

5. New Resolution - Get Natalie off the bottle (she just won't take a sippy cup at all) and to sleep through the night (will once or twice a week, I need this to work sooner than later)

I also finally caught up on my bible study. I did 6 weeks worth in 1 day. I know, that is bad to be that far behind and I can promise I will never do it again. I love my study and hate I got that far behind. We are doing the old kings; 1 and 2 Kings.

I think that is all for the New Year so far, minus the Razorback loss last night in the Sugar Bowl. I am still proud of my Hogs though.

I will keep you posted on my New Year's Resolutions. The first 4 are no problem, then 5, please pray for me. I need Natalie to sleep through the night and get off the bottle so bad. Our bottles are starting to get nasty from the amount of use and I am not going to buy new ones, so whether she wants to or not, she is coming off the bottle...it is time.

I hope everyone had a Merry Christmas and a great start to 2001! I have the cutest picture of the kids from Christmas Eve I will post later. I need to get it from my uncle. I took a bunch with my camera only to realize I did not have the memory stick and to be honest, I have no clue where the memory stick is; priceless.