Gracelyn's Story: 15 Months...

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.

Monday, April 18, 2011

15 Months...

My little lady is getting so big! She has me wrapped around her finger more than ever. She is such an amazing little baby. I told her doctor the other day that if she had a whole heart she would be pretty near perfect. She has really changed a lot recently. She has become friendly with others, even strangers. She is always waving to people and telling them " Hi!" She is so happy. We usually find her walking around the house dancing. She is a tease, just like the rest of them in the house. She will walk up to her brothers toys, grab one and put it behind her back until he notices. She'll sit on her binki and ask me where it went. I wouldn't expect anything different with Jeff as her father. A while back she started telling me when she needed to go to the bathroom or that she had in her diaper. My parents got her a little toilet and she has gone in it ever since. (She is no where near potty trained, but it's a start. It would be great to not have two in diapers) She only really signs two signs anymore, please and bath. She says anything she wants to and usually repeats the last word of my sentence. She sleeps through the night, almost 12 hours every night. If we don't have her in her bed by 8:30 she is standing at her crib begging to get in. She eats anything and everything. She LOVES to bathe. If someone in the house is getting in the shower or bath she'll cry until she gets in, even if she has already been in for the day. As far as her health she is doing well. Her oxygen levels have been low, making for some purple lips, but she has been congested for a while. Now that she has started to walk we find that she will play for a while and then she lays on the ground, get up and play for while and then crash again. It makes me sad to see, but at the same time I'm happy she can do what she does. She has recently gained a lot of weight, moving all the way up to the 50 percentile. Her doctor was shocked by the number. I give credit to the whole milk and all the bread she loves to eat.

Weight: 22lbs. 3 oz. 50%
Length: 30" 30%
Head Circumference: 49 cm 100%+ (I've never seen that % on any of my kids before. :) )