Wednesday, April 22, 2009

Queen of Hearts

Hypoplastic left heart syndrome. I heard these words for the first time ever just yesterday, and they are words that have and will change and shape our family's life. The little queen on our hearts has been diagnosed with this rare heart defect. We wanted to provide some basic information about our situation to make you all aware.

About a week and a half ago at a regular ultrasound appointment the technician indicated that she had a difficult time seeing everything that she was looking for in the baby's heart. She referred us to a specialist without much indication that anything was seriously wrong. Our appointment was scheduled for yesterday. After an extensive ultrasound the doctor told us the likely diagnosis and she arranged an appointment with a pediatric cardiologist a few hours later. After another extensive ultrasound the pediatric cardiologist confirmed the heart defect and we talked about what it meant. Essentially everything will seem relatively normal until the baby is born. Once she is born she will need to have a series of 3 surgeries that will take place immediately after birth, 3-6 months and then 2-3 years. The most risk will be up until the second surgery.

Congenital Heart Disease is common in about 1% of all newborns, and of that hypoplastic left heart syndrome is only 1%of all CHD making it very rare. We are quite fortunate, however, to now be working with the Children's Hospital of Orange County and some great doctors there. The heart surgeon has been there 13 years and has successfully completed the operations that our little one will need.

If you would like more information on HLHS we would ask that you stick to reputable sites, we particularly like the mayo clinic site.

Last night I decided on a family motto, or at least a perspective that we are trying to live by. "Come what may and love it." The message from Elder Wirthlin gives me hope and helps me to first look at the blessings we have and be truly grateful for them. Thomas and I are doing pretty well given all of this. We are staying positive and are putting our faith and trust in God. We have many blessings that are and will continue to help us through all of the eventual struggles. We appreciate your love and prayers in our and our baby's behalf.

9 comments:

Amanda and Steve said...

Adrienne and Thomas, we surely are thinking and praying for you and your sweet baby. You are great examples of faith.

Jackie said...

What difficult news to face, but I'm so glad to hear she'll be in good hands.

We're praying for you.

The Mathews Four said...

Oh my goodness. Your faith is inspiring. We will definitely keep your family in our prayers. I'm grateful that we live in a day and age where things like this don't go undetected. Thank you for the update and hang in there. We love you!
-Jessica

jlbunting.com said...

So sorry to hear this news. I am glad the doctors are prepared to help her right away. We will be praying for you guys.

The Standrings said...

adrienne, you can be sure we will be thinking of you and praying for you! i admire your attitude!

Janae Walker said...

good luck with all of this! it is nice to be close to good doctors. we will pray for you and your cute little baby!

AJ said...

You two are very admirable. I respect your strength and think your new family moto is perfect. Love you guys so much!!

m.dahl said...

Your little girl will be so blessed to have you as parents. You all will be in our prayers.

shay said...

david and i will keep your family in our prayers. enjoy every kick in that belly!