And the Heavens will rejoice....

This is what one of Megan's Sunday School teachers said today when she told them that she accepted Jesus into her heart. The Heavens are rejoicing becuase another one will enter the Kingdom. Yes, my baby girl accepted Jesus today. She looked at me during the service and said "Mommy, I am ready." And I knew. I knew this was the moment. Shockingly I did not lose it! I walked her out into the hallway where it was just the two of us and we prayed together. What a special moment!! I will never forget it.

Jesus said "Let the children come to me, and do not hinder them, for the kingdom of heaven belongs to such has these." Matthew 19:14

Thank you to our family, friends and especially Megan's sunday school teachers for planting the seeds in her and helping them to grow. Thank you for being a part of Megan's journey with our Lord. Thank you for loving her and teaching her about the love of Jesus Christ so that this day would happen. Thank you for crying those happy tears today when she went to you and proudly proclaimed "Guess what I did today." Please pray for her as she continues to grow and learn about His love.

Megs, I love you so much. My little girl. The little girl I never knew I wanted and needed. I thought I wanted all boys until I saw your sweet little face and instantly fell in love. I am so honored and blessed that I could be a part of today. I cannot wait to see where the Lord leads you and to see the beautiful woman you will become. I love you Megs and am so proud of you.

Vision Therapy

One of the therapies that Nicholas receives is vision. He was diagnosed with CVI which is Cortical Visual Impairment. Nicholas' eyes are perfectly normal but due to his hypoxic event (lack of oxygen to his brain when he coded) his brain was severely injured. Instead of a partial injury he suffered a severe global injury meaning his whole brain and brain stems were injured. CVI can be temporary or permanent. In Nicholas' case they think it will be permanent due to the severity of the injury. So his eyes are normal but the brain stems connecting his eyes to his brain cannot function properly. Therefore his brain cannot interpret what he sees giving Nicholas his lack of vision. As well as they could with Nicholas' condition, they have diagnosed that he can distinguish light and light changes (which is a huge blessing and miracle) He also tends to favor the color red (that's my boy!!!)
Nicholas' therapist Camille has helped us figure these things out. It was pretty amazing to see Nicholas looking at the different colors and very clearly favoring the red light. She uses a light box and puts different transparency colors on it.
We have been so blessed to have wonderful therapists and nurses who have become a part of our family. They not only love Nicholas but also our other children. Camille has put Brandon in charge of the vision therapy. Below are pictures of Camille showing Brandon everything he needs to do and know to help Nicholas. Those of you who know Brandon know he never sits still long enough to teach him very much. He sat and listened to everything Camille taught him. When Stephen and Megan got home, he proudly gave them instructions but also said that HE was Nicholas' vision helper.
We are so blessed that we have a wonderful therapist who took the time to show Brandon these things and are blessed that we have a super big brother in Brandon who wants to help his little brother learn and grow.

Instructing Brandon on the light box.
Camille was showing Brandon how to gently rub Nicholas' arm to help stimulate him before the exercises.

Now why doesn't he listen to me that well!!! We love you B!

Prayers for Kaelyn

Please keep Kaelyn in your prayers. She is a "heart child" and part of Mended Little Hearts (the support group the we are a part of.)

Here is her story copied from her caring bridge page:

Kaelyn Makenzie Pack was born on August 27th, 2003 with Atrioventricular Canal Defect. Although her condition was detected by ultrasound at only four months of pregnancy, nothing could have prepared us for the future. After many routine visits to Brenners Children’s Hospital, we awaited her birth and the three life-saving surgeries that would follow. Kaelyn endured her first operation when she was six days old, her second at six months, and her third when she was three years old. Due to unexpected complications during a heart catheterization, she also had two thirds of her intestines removed one week after her last heart surgery. Since this last surgery she has had many complications and hospitalizations. In December 2008, Kaelyn was diagnosed with pneumonia. After a short stay at Brenners and a round of antibiotics, she returned home and seemed to be getting better. Much to our surprise, what we thought was pneumonia returned and continued for the next five months. At the end of May 2009, we brought her to Duke Children's Hospital and the cardiologist diagnosed her with a very rare condition known as Plastic Bronchitis, which is a complication from her third heart surgery. On June 1st, 2009, Kaelyn had another heart catheterization and once again experienced complications. This has begun our stay here at Duke. Through all of her ups and downs Kaelyn has been so strong and such a fighter. Her contagious smile and bright blue eyes continue to bless our lives everyday. Thank you for reading about her journey and joining us in the fight for our precious little girl.

Please keep her in your prayers. Her site is: http://www.caringbridge.org/visit/kaelynpack

ECMO Celebration of Life

We recently went to an ECMO Celebration of Life picnic. It was a time for all of the patients, both adults and children, who had been on ECMO or life support, to come together. It was a reunion of doctors, nurses and patients. ECMO (extracorporeal membrane oxygenation) does the work for the heart and or lungs, giving them time to heal.

Below is a picture of Nicholas on ECMO. He was on it for a week-7 long, long, days. He was almost 8 months old then. May 4th, 2007-the day he "coded" and the day our lives changed forever.

Stephen and Carson-the birthday boys (May 31st) Carson is the son of Julie and Barney who both work at Brenner/Baptist Hospital. They were both there with us from day one when Nicholas had his heart surgery. Special, special people who we love very much.

Megan took this picture of Nicholas. Up close and personal.

Swiss miss cake...delicious.

Barney and Carson.

Carson giving Nicholas a kiss and hug "bye bye." Nicholas was getting excited-too cute.

Me, Mike (Dr.Hines), and Nicholas. Mike is his heart surgeon and the one who saved his life plus put him on ECMO. Could I be grinning any bigger than that??!!! Several of the Heart Moms and I have said we need to start a support group for the Moms who love Mike Hines (MLMH) You can't help but love the man who fixes your child's heart and saves his life....right, Stephen my dear, sweet, husband??

Tonsil Day

A little late doing this post because we have been slightly busy!! Megan and Brandon both had their tonsils out of May 22nd. The ENT convinced us to do both of them together so they could heal together. Great idea....for them!! It was a whole different story for mom and dad. We did not take into account that we have FOUR children and one with specials needs. It has been a busy and crazy ten days of healing. There were may moments I had Megan, Brandon and Nicholas on my lap. Megan would cry because she was hurting then Brandon would chime in and next Nicholas would start. But...we made it and are now tonsil free for three of the kids.
Below are pictures of the that day.

Brandon was SO excited to have his tonsils out which was really hard because he hurt the most.
Megan was a little excited at first. Then she came to me and said "Mommy, I am not feeling so well so maybe we should do this another day." Sad!
Brandon was so excited he started singing Jingle Bells while doing a special Brandon Booty Dance. Don't ask!!
We had to be there at 6:00 am. Daddy fell asleep while in the waiting room. He said he didn't but there is the proof.
They gave Megan and Brandon special stuffed animals. Aren't they sweet in their hospital gowns?

My silly monkeys. They are 20 months apart but act like they are twins. They were swinging on the bed bar. I know I should have stopped them but they were having fun and it distracted them.
Megan went first and yes, I did cry (so did Steve!) Once Megan left Brandon started getting nervous. He kept asking "where was Megan and when was she coming back?'' After they took Megan away it was horrible. We had to wait and wait and wait in that small room. So we put Nicholas on the bed and Brandon climbed in with him. As you can see, Nicholas was trying to sleep.
And here we wait some more. We were now in their room waiting on Brandon to come up. Steve and Stephen decided to make themselves at home.
Megan ate and ate and ate some more. She did really well!! She had three bowls of soup, 4 slushies, a glass of water, a glass of sprite and one pudding. She doesn't eat that much at home!!!
Megan and Olivia (Livy).
My poor B. He took a lot of time and was in so much pain. He came into the room crying so hard which in turn made me cry. It was horrible. We are very blessed Megan did so well because Brandon was hard. He wouldn't eat or drink because he hurt so bad.
Anyway, it is over. The Lord got us through so hopefully they will sleep better and we won't be as sick next winter. Thanks for all of the prayers and support!!! Maybe someday we will have a boring life but then I wouldn't have a blog :)