Xyler

On October 24, 2011 our 4th child, Xyler, was born.  We held him in our arms and made plans for when his siblings would come see him and when we would take him home.  He seemed so perfect and precious.  A few hours later our life was forever changed.  Little Xyler had a heart defect.

Everything, after hearing that something was wrong with his heart just seems like a big blurr. He was life flighted to Primary Children's Medical Center 7 hours after he was born. My husband and I gathered my stuff and left to go down to be with our new baby. It's hard to describe just how horrific that ride was. It is about a 90 minute drive to get to Primary Children's from where we live, but it felt like forever.

We later found out that Xyler has Tetralogy of Fallot. http://en.wikipedia.org/wiki/Tetralogy_of_Fallot I felt like I was dreaming and I just wanted to wake up! The thought of my son having to have heart surgeries the rest of his life was so hard for me. Don't get me wrong, I am so grateful for our technology and these wonderful doctors who work miracles and that they could save my sons life, but it's hard to think of your child having to go through it again, and again, and again.

Xyler had his first surgery when he was 3 days old. It was so hard to just sit and wait during it. It took about 5 hours for everything. This surgery they put in a BT Shunt and put a patch in his pulmonary arteries to widen them where they were narrow. They do the shunt so that his heart and him can get bigger before they fix the problems in his heart. We are guessing he will have his second surgery in a couple of months.

Xyler was truly amazing after his surgery! He was so strong and did so well that we were able to take him home 6 days after his surgery. He had a feeding tube and was on oxygen when we brought him home. I was able to take the feeding tube out a week later. He is still on oxygen and we figure he will be until after his next surgery, but I figure that is better than other problems he could have.

I keep him at home and away from people except for when he goes to his doctor's appointments, which was a lot at first but has slowed down now. We don't want him to catch anything and so we take these precautions. He has had 3 synagis shots (for rsv) and will have another one next week. He has had a little cold for a couple of weeks that I hope will go away soon! It is always hard and scary when your baby gets sick but I feel like it is 10 times more stressful when your baby has something wrong with them.

I go a little crazy sometimes from being home all the time and from all the stress.  I'm hoping blogging is just the outlet I need.  :)  I have 3 other kids who help keep me busy. They are Xander who is 8 almost 9, Nika who is 7, and Xavian who is 18 months. They have done really well with everything that has happened since Xyler was born. It was a bit hard for my 18 month old when we were at the hospital with Xyler, but it's amazing how fast kids adapt. They love their baby brother and always pray for him to get better.  I am truly amazed and proud of their strength and love.

We feel so blessed to have Xyler in our family. We have had many blessings happen to us since he was born. He is such a happy, strong baby who is growing so fast. If it wasn't for his oxygen and scar you would never know that he has gone through as much as he has.  He has taught us so much about life and love and miracles.