June 2012

6/1/12 By: Amy Pitts, Mother

Trip to MUSC today. Ultrasound of Jonah's spinal cord (to ensure he doesn't have Spina Bifida), x-ray of lungs to check for fluid and cardiologist appointment. Please pray! 

MUSC was only a 5 hour trip today. I am happy that it wasn't the usual 8 hour tour. The ultrasound tech sounded positive...I think we do not need to worry about Spina Bifida...but we find out on the 6th for sure. We also got to visit with a neighbor for awhile when we were down there. Her daughter Lily just had heart surgery 2 days ago. Please pray for this darling 6 month old.

6/7/12 By: Amy Pitts, Mother
Praise God! The geneticist has found no abnormalities thus far and feels he looks fine "physically". We will follow up in 6 months to ensure he isn't showing any signs of developmental delays.


6/10/12 By: Amy Pitts, Mother
Jonah is now 10 lbs and 1 ounce! It feels so good to know that he is progressing at a normal rate. God is holding my hand throughout this whole journey!


6/13/12 By: Amy Pitts, Mother
Finding out that your son has a heart defect...scarry
27 day hospital stay at MUSC Children's Hospital....overwhelming
$102,419 paid by BCBS...amazing
Knowing that God will be with you the whole time....priceless!


6/18/12 By: Amy Pitts, Mother
Cardiologist appointment went well today. He is 3 months old now!!!! Increasing his feeds to 27 calories per hour so we will get longer breaks. Hope his stomach can take it! We were given a tx for physical therapy....he's behind on tummy time. We also have to start putting him on his side at night to help his head shape. Heart catheterization in one month....will help determine when surgery will be. Next doctor appointment is Tuesday with the nephrologist to figure out why he throws up when he uses the bathroom :(

Exciting news! For those of you who haven't heard....my new profession is "stay at home mom" next year. Although it did not come about the way I would have liked to (ie medical conditions with Jonah), I feel it is a blessing in disguise. In church on Sunday, Stan restated that God does not call the equipped; He equips the called. I feel that he has prepared me for some of what Jonah will go through. My background in special education will assist me in ensuring my son has the best medical/therapy available to him!

While we are on the subject.....we start speech therapy on Thursday! They will be working with him on "feeding". The goal is to encourage bottle feeding.....so when his heart is strong enough, his mouth will be too! We also were approved for physical therapy and will be receiving a call in a day or two. They will assist in helping Jonah gain upper body strength.....therefore we can get back on track to "tummy time".

PS--my little chipmunk is now 10 pounds 9 ounces!!!

6/19/12 By: Amy Pitts, Mother

Nephrologist doesn't know why it hurts Jonah so much to use the restroom :( did a urine culture and bloodwork....will see