Benji and finally got the tree decorated last sunday. The tree had been up for a couple weeks but there was nothing on it yet. I like that Benji and I could decorate it together.

This is Kaiya's First Christmas Ornament! I saw it and had to get it. I love getting ornaments for the kiddos. That is something that my parents did for me and I still have them. It is neat to look back at all of them.

Benji's is a train, what better than a train for that little guy. He loves them and anything else with wheels. I had to put it towards the top of the tree so that it would stay on the tree. He would have had it down in one minute, pushing it around on the floor.

Oh So Thankful!

Happy Thanksgiving (a day late)!! I feel so very thankful this year, just too many blessings to count. First of all...I know Jesus and he has saved me, he loves me and wants a relationship with me. Then, there is my husband. I feel so blessed to have a good man in my life. One who helps me and respects me. We are in love and I am so thankful for that. Then there are my children. Benji is so smart and fun, however, he is two and so there are trials and tests but all in all, I can't get enough of him. And then there is Kaiya. I m so thankful to be her mother. She truly a little blessing from God. Life will never be perfect for us but we have our little miracle at home with us and we love her so much. We are so happy to report that she is talking a lot and she is now rolling over. We really thought that this would never happen. I think we you have a sick child you focus so much on "today" that you forget of all of the things that will happen so when she does something new we are overjoyed. Also, very thankful for our family and friends.

We do have one prayer request for Kaiya. She has been spitting up every morning for three weeks. Now she is not like a normal baby spitting up. She does not eat she is fed through a feeding tube and has had a Fundoplication which should keep her from refluxing. In the mornings during or after her first feeding she gags on the mucus that is draining down her throat. The problem is that most often she is unable to clear it herself and I have get the bulb syringe and help her so that she can breathe. A little scary but so far God has taken care of us. We are praying that her runny nose clears up and that she stops spitting up and ask you to do the same. God has taken such good care of our daughter so far and I know that he answer prayers in his own time and we will just be patient. Thank you all who have prayed for our daughter and continue to do so. We are truly in debt to you. We are thankful for you too!!

A night out!

We had the best night! The whole family got out of the house tonight to have dinner with friends. One of the hardest thing about having a baby like Kaiya is that she is not able to get out of the house much. We have to be very careful with her because of her weak immune system so no crowds. Of course there are crowds everywhere we want to go including church. We will get through this and things should be better this spring, after cold and flu season is over. The Dr's told us that Kaiya T-cells are only "mildly depressed" which means that by her first birthday she will probably have pretty normal t-cells. We will not take her much this winter except to see family and friends when everyone in the house is well and that they wash their hands before the hold her. I was not careful about any of this with Benji but I am glad for that, he is as healthy as a horse and rarely gets sick. Our night out, well it was really a night in at a friends house but it was so fun. Benji was able to play with their boys and all of their super fun toys! He had a blast. It was so nice to visit with people and just not have to worry about anything. The meal was really good, pork chops, potato casserole and green beans!! Kaiya even had fun. She slept for awhile but spent some time looking at the Christmas tree and just watching all of the boys play with the train set.

We are so thankful for our friends. I have seen how your real friends let you be who you are and not judge. I love that I don't have to be fake around true friends.

Thank you Frazee family for the awesome night. Hope you had fun too!! Have to have you guys over soon. Love you.

Just want to share this photo of my kiddos. They are pretty sweet. This photo is about a month old already so Kaiya has grown quite a bit since but wanted to share anyway.

*Blessed*

There are days when I feel that I will never make it through. It is not easy having a baby who is not well and there are so many things that we will have to learn along the way with baby Kaiya. However, when I think back, it was the same with Benji. He was our first child and it was hard because we didn't know what we were doing. We were new...we are still new. We are new because we have never sailed these waters of having a baby with a heart defect, DiGeorge syndrome and a weak immune system. I love being a mom, it is one of the biggest blessings of my life but that doesn't make it easy. I am a selfish person. I forget that there are people who have it so much worst than we.

We made a few friends in KC this past summer. One couple stands out to us. Their son has Downs and a heart defect. He has already had two open heart surgeries and is awaiting another in the spring. He has a third surgery to put in a trach and a G-tube. He will be coming home but will have a in-home nurse to help care for him. I think about this couple and how strong and positive they are. I have been a mother longer than they have but they have taught me so much about how to love your children. I also think of the parents that have lost their children. When Kaiya was in the PICU after surgery there was a baby boy in the room next to us who lost his life. Chris just happened to walk through and saw MANY Drs in his room and they were pumping his chest. Another couple, the Stones, lost their little Hadley after open heart surgery. Do I have the right to complain about how hard my life is? Where do I get off thinking that I am more important than the next person.

I guess I have tunnel vision. I think of myself and I take care of myself...forgetting that there are others out there who DO have it bad, worse than me and my problems. I am learning to be grateful for the blessings in my life. I have my sweet baby to hold in my arms, she is home and it growing and doing well. I have a family who loves me and needs me and takes care of me. I am truly blessed by my great Lord and I am learning to just let go and let him work where he will and trust that he will do HIS will in my life.

Home Sweet Home

I never knew how much I could miss home until I spent the majority of the summer away. On June 17 we were blessed with a beautiful baby girl. Her name is Kaiya and she is our little fighter!

Our daughter was born with a congenital heart defect called truncus arteriosus. Pretty much she had a whole between her ventricles and she had one large valve pumping blood to both the lungs and to the rest of the body. This would cause her blood saturation levels to bounce all over the place because the body was getting blood that was not oxygenated. We later found out that her heart condition was caused by a syndrome called Di George syndrome. It is similar to Downs in that it effects many areas of the body and development. We spent most of the few two months of her life in Children's Mercy Hospital in downtown KC.

One July 12 Kaiya had her first surgery to correct her heart defect. The surgeon patched the whole, disconnected the large valve form the aorta and put in a new valve for the aorta. It was a scary day but we had people there who loved us and Kaiya and it made the day seem so much better. Kaiya was in the PICU after surgery and seemed to be doing really well and week out form surgery and she got a serious bacterial infection. We were not aware of this that evening but we were very close to losing her that night. The nurse that we had the next day told us that her lactic acid level was 24. Most people have a lactic acid number of 2. When you exercise for instance, your body does not get as much oxygen and to the number goes up. So when you think about it, Kaiya's little body was shunting all of her body away from her limbs and using it for her major organs. It is still a little frightening to think about but we know that God's hand was on Kaiya that night and we just thank Him for our special gift.

After recovering from surgery and from her infection Kaiya moved upstairs for 4 Sutherland, the heart floor. She was doing great but she had started to vomit almost every time she ate. The Dr's figured out that it was reflux and that it was pretty severe so they suggested another surgery where they go in and wrap the top of the stomach around the bottom of the esophagus. It was called a fundoplication and we also had to put a feeding tube into her stomach. We will have that for awhile but we are working with therapists to help her suck. She is not able to take ANYTHING by mouth until she passes a swallow study. She will have another one around 8 months. We are also working on head control and strength. She was in the hospital for so long and not able to get out much so she is not where she should be but she is getting stronger everyday and we are looking forward to her getting around soon.

While we were gone at the hospital our son, Benji, spent a lot of time with Grandparents, Aunt and Uncles. He did pretty good considering but we are just now getting back to normal at our house. We are very proud of Benji, he is very smart...smarter than his parents. He is great with Kaiya too. He sits down beside her and talks to her. His name for her is Sweet Pea Kaiya Marie. It is pretty sweet!

I am out of words for now. I will post again soon and hopefully more often.