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.
Friday, September 25, 2009
Visit to the Perinatologist- September 15, 2009
On the Sept.15 we had our first visit with Dr. Andres our Perinatologist. Since they hadn't seen the baby before, they took us in and did an indepth ultrasound as if no one had ever looked at the baby. We spent a good 45 minutes looking at every part of her. Apparently when something is discovered to be wrong with the fetus they first send them to a Perinatologist. They usually thoroughly look the fetus over and then send them to Primary Children's so that all problems can be looked at. For some reason we were sent straight there and skipped the Perinatologist step, I do remember our technician at the Women's Center telling us everything else look great about her and that she wanted a Cardiologist to see her right away. When they looked her over on Tuesday they said that everything else about her looked great! That was such good news, considering the way they started the appointment was, "These babies with heart defects typically have something else wrong along with their heart problem." All body parts measured to be growing at the same rate. She showed that I was due about a week later than we thought, but Mr. C was 6 lb. 13 oz. when he was born, so we don't expect she will be big. She didn't have a cleft pallet and her brain looked perfect. However, the first question the doctor asked when he met with us was, "How old are you?" He again told us that there is a good chance something could be wrong with her and wanted to know if we wanted to test her for downs. I didn't do this test with Mr. C and I had already decided I didn't want to do it this time. He wanted us to do it just so that we were "prepared." It wouldn't change ANYTHING for me. We know we have a sick baby and are already preparing ourselves. We do, however, have to accept the fact that when she is delivered we could find more that is wrong. I feel confident that she will be okay. The doctors at Primary's gave me the impression that they felt the same way. Dr. Andres spoke with us for another 45 minutes. I don't know if we appeared to be too okay and confident, but he stressed to us that though we have accepted the news of her being sick now, feelings and emotions will come back 10 fold when she is born and we see her with tubes coming out from everywhere. We have actually talked about this and have realized that we are getting prepared in every way we can now, but know it will be very difficult when we actually have to see her with the incision in her chest, feeding tubes and IVs. I don't know if you can prepare for that. Overall it was a good appointment, I really liked Doctor Andres. We will go back and see him every 4 weeks to check her. They told us they want me to go 39 weeks, but if she starts measuring and growing at a different rate they may have to take her early. We meet with the Cardiologist on September 30 and will update you again then. Thank you for all the love and support! Jeff and I appreciate you all!
".....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
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