WOW

OK, you can stop the add me emails, because I have received well over 100 emails today!!!!!!!!!! After talking with more people Adam and I have decided to keep the blog public. I know after only one day of the private post we have had such a huge response. Everyone was supportive of us going private. But then I didn't realize that you can only add up to 100 people to your private blog. (My bad, I should have investigated this more before writing a post, I got ahead of myself) Which would be really hard for me to say yes or no to who can and cant read this blog. Also today I have realized how many people Gavin has encouraged. One email in particular brought me to tears and I have never met the woman before. I won't share her name or her whole story but she had a baby about 4 months ago that was preterm and had HLHS, she went on to be with Jesus after being in the NICU for 8 weeks. But for her mom to tell me that Gavin's blog helped her cope with her loss really hit me hard. I realize that if this blog goes private then it will not be able to reach those who are hurting. With that said, this blog won't go into much detail anymore about what we feel is private. Anyway, I would love to hear from more of you and your stories, so feel free to email me ANYTIME! I just didn't imagine that we would get this big of a response. The majority of the emails I received today were from people I had never met or spoken to before. Sorry for the inconvenience of it all and stay tuned for a Gavin post with pictures!

Going Private...

I have been wanting to make this blog private for awhile now. I know there are so many good people out there who read this blog and are praying for Gavin daily, however there are also those who I do not want reading this blog. Now that more of our friends blogs have gone private because of weird comments, I feel it is time for ours to go private too! Please email me at adamandfaithkuykendall@hotmail.com to get added to our private blog. You will have to start signing in with your email address and a password to read...

This if for the Ladies....

Between a cry and a smile
"Hey Girl, how you doin"
Serious GQ pose
"You crack me up!"
The "I am so sweet and innocent look" ;)

Since Gavin didn't have time to send out Valentines to all his special blogger ladies he thought he would give them a shout out (and some special pictures of himself).... Grace, Adalie, Bronwyn, Abby.... Will you Be Mine? Gavin also wants to tell all the other special ladies in his life (family and friends) Happy Valentines Day, I love you all!

I thought I would do a 16 month post and a Valentine post all in one! Gavin turned 16 months yesterday (2-13-08)... He is officially walking and saying more words.

Favorites:

Anything Elmo

Bath time

Books

Riding in his wagon (especially with mommy in there too, and daddy pulling!)

Remotes

Cell phones

Closing the dishwasher after it is loaded

Attempting to help fold clothes (actually he unfolds them, but he thinks he is helping)

Dancing

Favorite Foods (for the moment, it will change next week):

Beans!!

Pears

Milk

Strawberries

Canteloupe

Watermelon

Avocados

Chick-fil-a Chicken Nuggets

Yogurt

Apple Cinnamon Cherrios with milk!

Steamed Broccoli

And of course anything sweet!

Words:

Ba- Ball

Barbara

Nana (with a strong hick accent)

Me-Mimi

Pa- PaPa, PePa

Mm-pa- Grandpa

Ta-Ta- Aunt Tara

Kiiii (with lots of spitting)- Aunt Kristen

Yawn- Uncle Jon

Mama

Dada

Mmmm- milk or more

Bubba-Kyle

Yun-Yin-Londyn (little girl at church, he has grown fond of)

We are working on all the other family member names, however they are a little bit harder!

On the last post, there was a poem left under the comments. Thought it was very cute and thoughtful. It needed to be a part of the Valentines Day post. Thanks 3-Pa!

[To Adam & Faith & the Baby Makes 3> a Valentine's card]

(Rocky My Hero)

I used to think this day was lame

Then months ago along came

This thing that made me hide my shame

Now my life can never be the same

Tis a boy, that's for sure

Everybody prayin for a cure

Valentine hearts

They're the symbol

Of the need

That makes this family tremble

With God's love, it's for sure

Adam and Faith will endure

It's by their witness, we all enjoy

The strength that's shown

By their little boy

If you were weak or lame

Rocky is not what I'd name

So, I'll not stand and whine

Will you humble me and be my Valentine

XOXOXOXOXOXOXOXOXOXOXXOXOXOX

3-Pa

Sammy and Cardiologist Appt.

Tomorrow (Thursday), Sammy (HLHS_see link on right of blog) is having his Pre-Fontan heart cath. Sammys mom Erika is the very first mom who contacted me after reading my old blog when I was pregnant and found out about Gavin's condition. She was also one of the first people I talked to right after giving birth to Gavin. She has prepared me for a lot of what we would experience. Sammy is about 10 months older than Gavin and so he is always a step ahead of Gavin in surgeries/caths. Please keep this family in your prayers!

Friday, Gavin had his cardio appt in OKC. The cardiologist said to prepare for Gavin's heart cath to be a year from now, and the heart surgery should follow shortly after. We have mixed feelings, we want it over but we are also excited that we have another full year without long term trips to OKC. So here is to a year of health for Gavin!

A Year Ago Today...

I can't believe that it has been a year since Gavin's second open heart surgery! It was a tough surgery and a never ending two weeks, he has come a long way since then...

Heart Walk 2008

Dear Family and Friends:

Some of you have already read this through the email I sent out, but for those that I do not have an email for, please read below!

OKC HEART WALK 2008
Saturday, April 19, 2008 @ Bricktown Ballpark

That's right, it's that time of year again! We are gearing up for the 2008 OKC Heart Walk. We had a great time last year, we had a lot of family/friends turn out to walk as 'Team Gavin'. Gavin's heart surgeon, cardiologists, nurses and other medical staff attended the heart walk. It was an amazing experience and we are pumped to walk again this next year.

As most of you know, Gavin was born in October of 2006 with a very rare congenital heart defect, Hypoplastic Left Heart Syndrome and other heart defects. HLHS is one of the most complex cardiac defects seen in the newborn. In a child with HLHS all of the structures on the left side of the heart (the side which receives oxygen-rich blood from the lungs and pumps it out to the body) are severely underdeveloped. Treatment involves 're-plumbing' the heart to allow the right side to do the work normally done by the left. Therefore, Gavin only has one ventricle, the right, and it does all the work. This treatment is done through a series of three surgeries. There is no long-term prognosis for the series of surgeries since the oldest children who have undergone them are only in their early twenties. Some children with HLHS eventually will require a heart transplant. Gavin has been through two open heart surgeries, heart caths, suffered a minor stroke, CT's, MRI, EEGS, weekly doctor appointments, physical therapy, speech therapy, home health care and more. This little boy is an ABSOLUTE MIRACLE and we are blessed with his smile everyday! Because of the American Heart Association, Dr. Peter Pastuszko, OKC Cardiology Team, Nurses and Staff at The Children's Hospital in OKC, Gavin is able to receive the best of care and is now a healthy and happy 1 year old! Gavin has had a tough journey in his short life, but he is a true fighter. God has blessed us and used us in so many ways because of Gavin's condition!

We are supporting the Oklahoma City Heart Walk as our way of saying Thanks for all the hard work that the AHA and doctors do in order to save the lives of many others just like Gavin! This is our second year to participate in the OKC Heart Walk. There are lots of other children with Congenital Heart Defects, the NUMBER ONE birth defect! So please help us in making awareness not only about HLHS but Heart Defects in general. We are creating a team of walkers TEAM GAVIN to help us reach a goal for the American Heart Association Walk. We know that not everyone will be able to participate with us but we wanted to invite you to visit our web page by clicking the link below. If you would like you can make a donation in honor of Gavin on his personal web page or you can just join us for the walk. Please do not feel obligated---we truly just wanted to share our project, which we are doing in honor of Gavin with you. We plan to put our 'hearts' into this yearly. Any amount would be greatly appreciated...However, there is an online minimum of $25.00 amount required so please feel free to email us for home address to send other amounts. Please feel free to pass this along to your friends and family members. Thank you to all of our 'heart' supporters out there! We love all of you and God Bless.


Adam, Faith and Gavin

Slide Show of Heart Walk 2007

Heart Awareness Month

February marks CHD Awareness Month. This month means more to me then it ever has. So many people look at Gavin and never even know that there is something wrong with him. And let me tell you, I am thankful for that. I feel like it makes him more normal to look normal. But everyday is a battle for me and for Adam. Living with a child with a heart defect is an emotional challenge. I got this post from some of our heart support group, it says it all...

What does it mean to be the parent of a child with a heart defect?

What does it mean to be the parent of a child with a heart defect?
It means going into your baby's room a dozen times a night just to check to see if he's still breathing. It means standing over the crib to watch the chest rise and fall and when you don't see it move, you begin to panic and put your head down close to your baby's face to try and hear him breathe. It means that when you don't see the chest move and you don't hear him breathing (because your own heart's beating is drowning out any other sound in the room), you put your finger under the baby's nose to feel the air on your finger until you wake the baby and it stirs and you're thankful, so thankful that he's still with you.

What does it mean to be the parent of a child with a heart defect?
It means feeling a huge sense of relief when he hears you and opens his eyes and smiles. It means saying a prayer of thanks for another day.

What does it mean to be the parent of a child with a heart defect? It means measuring out his medication and panicking if he spits some of it out. How much did he spit out? One cc? Two or three? Then wondering if you should guesstimate how much more he should have and if you'd overmedicate him.

What does it mean to be the parent of a child with a heart defect? It means checking his nail beds against your own to determine how blue he is today. It means asking your husband, your mother, or your sister, "Do his lips look blue to you?" It means snuggling him in an extra blanket for fear he won't be warm enough.

What does it mean to be the parent of a child with a heart defect? It means worrying that even a sniffle could cause an infection that could harm his heart. It means taking your baby to the doctor and worrying that he will catch something in the waiting room, so you walk back and forth in the corridor until the nurse calls her name and takes you straight back to the examination room.

What does it mean to be the parent of a child with a heart defect? It means knowing that everyday is a blessing and a gift. It means knowing that you are the luckiest person in the world, just to be a parent. It means cherishing every moment, every breath with such intensity that you feel tears come to your eyes for no apparent reason.

What does it mean to be the parent of a child with a heart defect?
It means praying for a miracle to save your baby's life. It means praying your marriage is strong enough to endure the hospitalizations, separations, and grief. It means praying for the will to live, even if your baby doesn't.

What does it mean to be the parent of a child with a heart defect? It means your own heart knows a pain, no parent should know. It means feeling weak, helpless, angry, and depressed because your child's fate is out of your hands. It means feeling strong, determined, and brave because you know you have to be.

What does it mean to be the parent of a child with a heart defect? It means your love knows new unlimited boundaries. It means your pride in your child's accomplishments is unparalleled. It means your pain has taught you a deeper sense of compassion than you ever imagined.

So What Does All Of This Mean?
It means we are all united by the same feelings. It means that we all know the mixed up emotions of dealing with death, but more importantly of living with life. It means that even though we are strangers, we are more to each other than friends could ever be.


author-- unknown....


**If you can try to get out and donate blood this month, so many heart patients need blood transfusions and it's a great way to give to those in need**