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, January 13, 2010
First follow up doctor appointment
We went to our first follow up visit to the cardiologist today. As you can tell from the picture we had a GREAT visit. Gracelyn is up 5 ounces since last Thursday. She is eating almost a full bottle (50 cc's) every feeding. We tried giving her her medications by mouth and she did great. They tested her saturation with and without her oxygen on, she was at 100% when calm and at 88% when she was crying. They want her between 75-85%, she is a lot higher than they want her. So, needless to say, we have lost the oxygen and the feeding tube!! YEAH! We are so happy! Jeff couldn't wait to get them off. The minute the doctor walked out of the room he began removing things.She has also been taken off of half of her medications. She is still on the beta blocker and aspirin. Both of which she could be on for the rest of her life and we didn't expect the doctors to take her off of them. They did chest x-rays today and it showed that her heart was larger than it was when we left a week ago. The doctor told us that the x-rays aren't exact and that any movement could affect the picture. He told us he wanted to do and echo on her right then and that we would know what was going on before we left. Fortunately, he was right, nothing was wrong. The x-ray didn't show her heart exactly as it is. The sonographer that did her echo kept saying how great her heart function was. The doctor told us that he is sure she will have to have the next procedure, but miracles do happen. We pray for those miracles to heal her heart. We won't know for a while what is going to happen. We learned today that though her right ventricle is really small, thick and firm, everyone's right ventricle is when they are born. Sometimes is takes 1-3 months to loosen and with her probably 6 months, but the chance for it to grow IS there. We won't know exactly what it is going to do for a while, but fortunately with the third surgery taking place in 2-3 years we have the time for it to change and improve. We have hope that it can grow and begin to work. It is really difficult to sit back and know that things can change, but have no control or power to help her chance of improvement. Right now our only power is our greatest power and that is the power of prayer. We are so grateful to those that continue to offer prayers on her behalf.
YIPPEE!!!!! I am so excited that she has all of her tubes out! When Emma was able to have all of hers off, we upgraded her to a "wireless" status. I hope you enjoy your new wireless version of Gracelyn. I hope she continues to amaze us.
".....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
We went to our first follow up visit to the cardiologist today. As you can tell from the picture we had a GREAT visit. Gracelyn is up 5 ounces since last Thursday. She is eating almost a full bottle (50 cc's) every feeding. We tried giving her her medications by mouth and she did great. They tested her saturation with and without her oxygen on, she was at 100% when calm and at 88% when she was crying. They want her between 75-85%, she is a lot higher than they want her. So, needless to say, we have lost the oxygen and the feeding tube!! YEAH! We are so happy! Jeff couldn't wait to get them off. The minute the doctor walked out of the room he began removing things.
She has also been taken off of half of her medications. She is still on the beta blocker and aspirin. Both of which she could be on for the rest of her life and we didn't expect the doctors to take her off of them. They did chest x-rays today and it showed that her heart was larger than it was when we left a week ago. The doctor told us that the x-rays aren't exact and that any movement could affect the picture. He told us he wanted to do and echo on her right then and that we would know what was going on before we left. Fortunately, he was right, nothing was wrong. The x-ray didn't show her heart exactly as it is. The sonographer that did her echo kept saying how great her heart function was. The doctor told us that he is sure she will have to have the next procedure, but miracles do happen. We pray for those miracles to heal her heart. We won't know for a while what is going to happen. We learned today that though her right ventricle is really small, thick and firm, everyone's right ventricle is when they are born. Sometimes is takes 1-3 months to loosen and with her probably 6 months, but the chance for it to grow IS there. We won't know exactly what it is going to do for a while, but fortunately with the third surgery taking place in 2-3 years we have the time for it to change and improve. We have hope that it can grow and begin to work. It is really difficult to sit back and know that things can change, but have no control or power to help her chance of improvement. Right now our only power is our greatest power and that is the power of prayer. We are so grateful to those that continue to offer prayers on her behalf.
She is so darling! Glad to hear her appt went well! -Jen
ReplyDeleteYIPPEE!!!!! I am so excited that she has all of her tubes out! When Emma was able to have all of hers off, we upgraded her to a "wireless" status. I hope you enjoy your new wireless version of Gracelyn. I hope she continues to amaze us.
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