Sunday, February 28, 2010

What is Cain up to at 13 Months?

I have enjoyed going back and reading the changes Cain has made each month so I’ve decided to continue doing Cain’s monthly milestone post on my blog.

So what is Cain doing at 13 months?

-We have witnessed lots of changes in Cain over the last month. He is truly turning into a little toddler who is into everything.

-The biggest change is that he can now crawl on his hands and knees. Personally, I think it’s the cutest thing I’ve ever seen.

-He even crawled up 4 stairs over at our friend’s house. And he would have kept going up the stairs if we had let him.

-Cain no longer drinks from a bottle. He only drinks from a sippy cup now. I hated getting rid of the bottle because to me it meant my baby was growing up but I knew it was time.

-Cain now eats table food for all meals. No more baby food. Right now his favorites are pancakes for breakfast and grilled cheese sandwich for lunch. I tear both of these into pieces and he will feed himself. He will also eat chicken & turkey sticks, grilled chicken, sweet potatoes, blacked-eyed peas, applesauce and baby yogurt. I’m still working hard to decide which vegetables he likes but I certainly know he still doesn’t like peas. For the most part, he is a really good eater and will eat just about anything we are eating.

-He pulls up on everything. Last month this was still a little hard for him but if he wants to stand up now he will find a way to pull himself up.

-He has cruised the length of the couch a few times.

-Cain LOVES his books. He has so many toys and his favorite thing to do is sit in his room and flip through the pages of his books.

-Cain’s new word for the month is “Elmo”. I can ask him what my name is and he says nothing….I point to Brad and ask who that is and again Cain says nothing…I point to Elmo and ask who it is and Cain says Elmo!

-Cain now gives kisses!!! We can ask for a kiss and he will (when he wants to) lean over and give us a kiss. We absolutely love this!

-Cain LOVES to dance. If he hears music he starts dancing. We still need to work on his dance moves but for now his dance move is waving his arms up and down. It's so cute!


Look who's not toothless anymore. His first two teeth actually started coming in last month around the time of his 1st birthday. I just now got a really good picture of them so I decided to share his big smile & two front teeth with you. Who knows when any others will show up. Right now I can't feel any more trying to come through. His teeth don't seem to be in a hurry to arrive. I'm okay with that though because I think it will be funny to see him with a mouth full of teeth.

Monday, February 22, 2010

Colby's 2nd Annual Blood Drive & Bake Sale

On Saturday we attended a Blood Drive & Bake Sale that was held in honor of our "heart buddy" Colby. It turned out to be a very big event and 68 units of blood were collected. They also raised over $1500 through the bake sale. I know Becca & Jason are so excited about being able to donate this money to the CHD research efforts at Vanderbilt Children's Hospital. They did such a great job at putting this Blood Drive & Bake Sale together.

Colby and Cain were adorable crawling around and playing together. Speaking of crawling... Cain recently gave up his cute belly crawl and he is now crawling around on his hands and knees. We are SO PROUD of him.

Colby loves patting Cain on his back.

And this picture of Colby & Cain just melts my heart.

This was my first time to donate blood. I'm not going to lie...I was scared but I really wanted to give blood. Cain has received so many blood transfusions that I have now lost count of them. He's been hospitalized 4 times and I know he received blood transfusions during 3 of those hospital stays. One of the Red Cross workers working at this Blood Drive told me that all the blood donated would be used within 3 days. This will certainly not be my last time to donate blood. I encourage anyone else that may not have donated blood before to do so. I promise it it didn't hurt.

If you ever get the honor of meeting Colby you will have to ask for his autograph. A few nights before the blood drive a local news station aired a news clip about the Blood Drive. You can view the entire news story on the attached link.

Thursday, February 18, 2010

CHD Awareness Luncheon

On Tuesday we attended the annual congenital heart defect awareness day luncheon at Vanderbilt Children's. Our Governor and Mayor signed a proclamation declaring February 14, 2010 as Congenital Heart Defect Awareness Day in the state of TN. Every year at the reception, state and local proclamations for CHD Awareness Day are presented to the pediatric cardiology department.

This is the proclamation being presented to some of the Pediatric Cardiology Staff. The man in the blue shirt is Cain's heart surgeon, Dr. Bichell.

Cain's new cardiologist and his nurse were also at the luncheon.

And so were many other heart kiddo's. I just love being able to see the older heart kids run around just like normal kids.

We were very lucky to have Mark O'Shea & his wife Jay sing some songs for us at the reception. They performed their "Look at Me Now" song for us. I couldn't help but cry as they sang this song. I'm sure many of the other 'heart moms' had tears in their eyes too. He actually has a great video to go along with the song. The video was shot at Vandy and some of the kids that were at this reception are in the video. Click on "Look at Me Now" to see it.

Cain with Mark & Jay O'Shea. Mark is also a CHD survivor. He was born with Tetralogy of Fallot.

While we were at the hospital Brad & I dropped off gift baskets/bags that will be given to some of the heart families who have children in the hospital. We know firsthand how difficult the hospital stay can be and how sometimes the little things (such as a small gift basket) can provide comfort. I included a letter with Cain's birthday invitation and asked that people bring gift cards and/or food items that could go in gift baskets rather than gifts for Cain. Thanks to the generosity of our family and friends we were able to put together several gift baskets and bags.

Cain with the gift baskets that will be given out in honor of his first birthday.

This is Cain with Carolyn Orr. She is one of the social workers that will help make sure the gift baskets/bags get to families on the cardiac floors.

We owe a HUGE 'thank-you' to our family and friends who helped us be able to give this gift in honor of Cain's birthday. We would not have been able to do this without your help and generosity. Thanks to you we were able to donate 7 gift baskets that each included 5 gift cards along with tons of snacks and 10 gift bags that each included subway gift cards and more snacks. And this week my mom mailed me more gift cards that were given to her so we will be able to donate a few more gift baskets next week!

Thanks again to everyone who helped us make this possible!!!!

Wednesday, February 17, 2010

Cain's 1st Birthday Pictures & YouTube Video

Wow!! I thought I would never finish this post. I've been trying to put Cain's birthday photos into a video but had a very hard time getting it to show up on our blog. I finally created a video that I uploaded to YouTube. (YouTube Video-Cain's 1st Birthday) Here are a few of my favorite pictures from the party.

Take a look at the YouTube video (Cain's 1st Birthday) if you want to see all the pictures from his party. I'll warn's a 5 minute video so I hope you aren't rushed for time if you decide to view it! The music is a little choppy. I'm not sure why it's doing that and I finally got tired of trying to figure out how to make it better.

We will never be able to thank our family & friends enough for helping us make Cain's 1st birthday such a memorable event. So many of you traveled in just for his party and that really means the world to us. There is no way we could have made it through this year without all of your love, support, and prayers. We love you all so very much!!!! Cain is a very lucky 1 year old to have so many people love him the way they do.

Sunday, February 14, 2010

Cain's heart

Cain’s surgeries and procedures
Norwood on February 4, 2009 (6 days old)
Pre-Glenn Heart cath on April 3rd, 2009
Glenn on June 5, 2009 (4 months old)
Pre-Fontan Heart Cath on March 3, 2011
Fontan May 23rd, 2011 (2 years old)

I scheduled my 20 week ultrasound on my 30th birthday.  I thought finding out the sex of our baby would be the best birthday present ever.  However, we ended up finding out very devastating news that day.  We found out that our unborn son had several severe congenital heart defects.  We learned that he had Hypoplastic Right Heart, Tricuspid Atresia, Transposition of the Great Arteries, ASD, VSD, and a small aortic valve.  We also learned that he would need a series of three heart surgeries to survive.  I can not explain how sad we were that day.  We told our parents but it was weeks before we had the strength to talk to other friends and family.  It was more than we thought we could handle. 

On January 29th, 2009 our perfect little angel entered this world.  Since we had many months to prepare for his birth I knew I probably wouldn’t get to hold him and that he would be rushed away to the NICU.  What I wasn’t prepared for was for Cain to not be breathing at birth.  There are no words to explain how sad it is to not hear your baby cry and to learn that your baby wasn’t breathing. The NICU team intubated our son and rushed him to the NICU.  They briefly held him up just long enough for me to get a look at him before taking him away.  It is a moment I will never forget.

When Cain was 6 days old he underwent his 1st open heart surgery which was called the Norwood operation.  It is still so amazing to me that they are able to operate on such a tiny heart (basically the size of a strawberry).  Thankfully they can and thankfully our son was given a chance of survival.

After Cain’s surgery he remained in the hospital for several weeks and on February 17th he was finally discharged from the hospital.  We had a wonderful first week at home only to have to return to the hospital for another two weeks due to GI bleeding Cain was experiencing. 

On April 3rd Cain had a heart cath and then on June 5th underwent his 2nd open heart surgery (the Glenn).

We had a few bumps in the road with this hospital stay and had to stay a little longer than we expected but on June 16th Cain was once again discharged from the hospital.

Currently Cain is doing very well.  I tell many people that you would never know what all Cain has been through if it weren’t for his many scars on his chest.  Honestly, it is still hard for me to even comprehend what all he has been through.  For the first several months of Cain’s life he was seen by his cardiologist every week.  Now he has appointments with his cardiologist every 6 months.  During his last appointment, we were told that Cain will more than likely undergo his 3rd open heart surgery (the Fontan) during spring/summer of 2011 around the time he is 2 years of age.  I would like to think that the Fontan surgery will be his last open heart surgery but there is no way of knowing.  We have been told that he will probably have another heart cath a year after his Fontan surgery to close a fenestration hole that will be left open during the Fontan. 

Updates since this was written:

On May 23, 2011, Cain went back to the hospital for his Fontan operation.  He flew through the surgery and the recovery and was home from the hospital in only 10 days.  We are so proud of Cain and how far he has come.  It's unbelievable to think of all he has been through in two short years.  It's truly an amazing feeling knowing we are on this side of Cain's Fontan and currently don't have another surgery lingering in our minds.

I wish I could say I knew what the future holds for Cain but his long-term prognosis is truly unknown.  So far we have seen many miracles in his life and I pray every day that we see many more.  Every heartbeat Cain has is a gift and we are so thankful for his gift of life!

I love meeting other heart families.  And I also hope that Cain can bring hope to families that may be going through what we went through when Cain was first diagnosed with his heart defects. 

Friday, February 12, 2010

7 Hearts in 7 Days

This week has been Congenital Heart Defect Awareness Week (February 7th-14th). Please go check out 7 Hearts in 7 Days. It's a series of blogs that have been spotlighting CHD moms and even a CHD survivior this week. I was asked to write about our experience and Cain's story is the featured story today on her blog. You can read what I wrote at 7 Hearts in 7 Days. Please take time to read the other families stories that have already been posted earlier this week. Each story is simply amazing and reminds me why CHD Awareness is so very important!
Also...I realize I still haven't posted Cain's 1st birthday pictures and tomorrow will be two weeks since his party. I can't believe I'm so behind. Now that Cain is constantly on the move I find I've had less time to work on my blog. Hopefully I can get caught up this weekend.

Thursday, February 4, 2010

Then & Now

A year ago today Cain's first open heart surgery (the Norwood) took place. What a difference a year can make. Around 9 o'clock this morning I was sitting with Cain in his room. We were playing away with all of his toys trying to get him good and worn out for his morning nap. In the middle of our playing it hit that same time a year ago I was sitting in the operating waiting area not knowing if I would ever hold Cain again. He was in the middle of a 6 hour open heart surgery. Like I said....what a difference a year can make. Here I was this morning watching Cain belly crawl to every toy he could get his hands on. He was all over the place oblivious to what took place a year ago.
And now

Wednesday, February 3, 2010

A year ago today

Once again I have gotten behind on my blog. I had really hoped to have a post of Cain's first birthday up by now. I think I'm still worn out from planning the party and from our 8 hour drive to and from Louisiana. Hopefully I will have his birthday post up very soon.

In the meantime, I had to share a picture of one of the happiest days of my life. A year ago today (5 days after Cain's birth) was the first time we were able to hold Cain. It was a moment I will never forget. I remember I was crying SO HARD that I started laughing because there I was finally able to hold Cain for the first time and I couldn't even see him through my tears.

Tomorrow will be the one year anniversary of Cain's first open heart surgery (the Norwood operation). It is still so hard for me to comprehend that a 6 day old baby can go through such a major open heart surgery. All of the heart babies are true miracles! I am forever grateful for the surgeon and the rest of the staff who performed many miracles on Cain.
First family photo a year ago today!!!
What a wonderful year it has been!!