Gracelyn's Story: RSV Season and TWENTY POUNDS!!

Our Story

Jeff and Andee were married in 2003. We were both born and raised in Utah. We have three sweet children. During a 23 week check up with our second child, the baby was diagnosed with Pulmonary Stenosis, a heart defect. She was born on December 16, 2009 when the doctors discovered she actually had Pulmonary Atresia, Tricuspid Atresia and Atrial Ectopic Tachycardia. After she was born she stayed at Primary Children's Medical Center for three weeks. During that time she had a BT Shunt and stent placed in her heart.

On June 4, 2010, Gracelyn received her Glenn shunt. During that time they removed her BT shunt and stent. She is doing great! The next step will be the Fontan procedure some time after she turns two.

We intend for this blog to keep family and friends aware of what's going on as our story progresses. We have learned so much and found strength from the blogs and websites of those that have previously gone through this that we want to share our story for those who will unfortunately face this as well, as there is currently no cure for Congenital Heart Disease. We are grateful for all the prayers on our behalf.

UPDATE: July 2013: Gracelyn was scheduled to have her Fontan this summer. Doctors feel like she is doing so great it can be postponed until next summer. We have recently contacted the Children's Hospital of Boston for second opinion. They believe they have an alternative to the Fontan. In September we will head to Boston to see what they can do for her.

UPDATE: April 2015- Gracelyn had her Fontan surgery on April 27, 2015. She flew through the procedure and recovery. It didn't happen immediately, but by day two she was a beautiful shade of pink.

Thursday, February 3, 2011

RSV Season and TWENTY POUNDS!!

Every four weeks we take Gracelyn in for her Synagis (RSV) shot. We felt so LUCKY to be able to get it TWO seasons in a row. I was warned that it was usually only given to infants for one sick season in their life. I asked my doctor and he told me they wouldn't do it. I asked him if we could please look into it and we got it! We were approved for a second season. YEAH!! This shot is so expensive. I believe hers is up around $6000 per shot this year. We start in November and end in April. Thank goodness for insurance! I have made myself a little sick over RSV season. I am so nervous about her getting sick. My doctor told us last year that if she got it we could lose her. Everything I read says how hard RSV is on CHD and cyanotic babies. Also, as a side note: I don't particularly love sleeping on the couch at the "Mansion on the Hill." I want to be at home with my family. For this reason our we have been told that we need to be careful with her. No more church until the end of April, which is a bummer because it is so hard to enjoy and learn anything at church with a one year old, but she has been an ANGEL. I've been told several times how good she is. I hope we don't break that habit. We need to keep our house somewhere safe for her. SO, if you are sick, we will miss you, but please don't come by. :) If you are going to love and touch her, PLEASE wash your hands first. It is hard, but we are getting ourselves back into the hand-washing/hand-sanitizer mode where ever we go. I hope that isn't too harsh. We love that she is loved, but we love her being healthy even more. Back to the shots...She received her latest injection on Tuesday. Before they give it to her they weigh her so that they can give her the correct dose. On Tuesday she finally hit the big TWENTY. 20. TWO. ZERO. She is moving up! She is in the 15th percentile. She has been in the 5th percentile since birth. It must be that yummy whole milk we've switched to and all the bread, waffles and crackers she loves to eat. She is bigger than other 13 month olds I know. (Now, that big 95% head could have something to do with it, but regardless, she is 20 pounds.) I LOVE IT! With that being said we are super happy with how she is doing. Honestly, she couldn't be any better right now. Well, a whole functioning heart would be fantastic, but you get the point.