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.
Wednesday, December 16, 2009
NICU and the "plan"
I can't believe we have been at this for only a little only 24 hours. So much has happened. Just a few minutes ago Jeff and I went over to the NICU and had the chance to hold our baby girl for the first time. It was so nice to be able to cuddle and comfort her. The drug that she is on is not kind to her poor little body. You can tell by her face in the pictures, she just can't get comfortable. We can rub her face, but if you rub her body it really upsets her. When she gets upset she turns purple. She just wants to be held tight and she stays content. I had a hard time leaving her and putting her down. I really just want to hold her. It has been a little awkward going nine months carrying this little baby and then delivering her, but to lay in our empty room without a little baby by us. We recently spoke with one of the cardiologists who gave us the "plan." They spent several hours doing an echo on her heart this morning and have decided that Friday afternoon they are going to take her to the cath lab and attempt a procedure that they will enter a line through her leg and up through her heart. First they will burn a whole through the pulmonary valve, which is fused shut, and then they will enter a balloon that they will expand. Besides and absolute miracle, this is the best thing that we could have hoped for. If it works I believe we could have her home by Christmas. They would need to get her stable, off of the drug that she is on and teach her how to eat/swallow before she could leave. If it didn't work they would have to go with the original plan of doing open heart and inserting a shut and her stay would be quite a bit longer. I feel guilty asking Heavenly Father for more that what he has already given us, but tonight my dad and Jeff will give her a blessing and we are pleading with Heavenly Father to bless this little baby that she will be ok. We believe that all will be ok, but ask for prayers on her behalf. She is already going through so much as she fights this mean, but lifesaving drug they have put her on. She is also going to be having a pic line put in soon as they need another reliable spot to give her her medications. We are grateful for the calls and emails expressing your love and concern. We will keep you updated.
Andee and Jeff, CONGRATULATIONS!! She is absolutely gorgeous!! I'm so glad delivery went well and Jeff was able to cut the cord. Thanks for doing this blog so we can stay updated. You guys are in my thoughts and prayers! It sounds like she was born a fighter just like Heston!! You guys are amazing I love you all so much!! Please let me know if you need anything I love you! Love, Tiffannie and Heston.
Congrats! She is beautiful. It is so good to hear that everything with the delivery went well. We are thinking and praying for Grace. She is a wonderful addition to the family! Good luck.
What a beautiful baby girl! I am sure that Mr. C is going to take wonderful care of his baby sister. Your family is in my thoughts and prayers. (Andee, you look great.) Love, Rachel
Congratulations! Gracelyn is beautiful. I told Heather that her friend had been born and she smiled. How fun it will be for our little girls to play one day. Hope all goes well with the procedure tomorrow. Lots of love, Cathy
".....Heaven's kindness will never depart from you, regardless of what happens......Bad days come to an end, faith always triumphs, and heavenly promises are always kept."
--Jeffrey R. Holland--
"Life is hard, but life is simple. Get on the path and never, ever give up. You never give up. You just keep on going. You don’t quit, and you will make it."-Lawrence E. Corbridge
"A pessimist sees the difficulty in every opportunity; an optimist sees the opportunity in every difficulty." -Winston Churchill
She is absolutely gorgeous and Andee you look amazing! You will all be in our thoughts and prayers.
ReplyDeleteLove, The Blakeleys
Andee and Jeff, CONGRATULATIONS!! She is absolutely gorgeous!! I'm so glad delivery went well and Jeff was able to cut the cord. Thanks for doing this blog so we can stay updated. You guys are in my thoughts and prayers! It sounds like she was born a fighter just like Heston!! You guys are amazing I love you all so much!! Please let me know if you need anything I love you!
ReplyDeleteLove, Tiffannie and Heston.
Congrats! She is beautiful. It is so good to hear that everything with the delivery went well. We are thinking and praying for Grace. She is a wonderful addition to the family! Good luck.
ReplyDeleteWhat a beautiful baby girl! I am sure that Mr. C is going to take wonderful care of his baby sister. Your family is in my thoughts and prayers. (Andee, you look great.)
ReplyDeleteLove,
Rachel
Congratulations, she is beautiful. You are all in our prayers. Love the Barnes family.
ReplyDeleteCongratulations! Gracelyn is beautiful. I told Heather that her friend had been born and she smiled. How fun it will be for our little girls to play one day. Hope all goes well with the procedure tomorrow. Lots of love, Cathy
ReplyDeleteAndee~ Congrats on your beautiful baby girl!!! Good luck and best wishes to you and your family tomorrow. You guys will be in my prayers.
ReplyDelete