12.01.2011

Baby News

Please forgive me for all of the e-mails, texts and phone calls that I have yet to return.  Emotions are very raw at this time and we are just plain exhausted.  So, here is our news...

Two days ago I received a phone call from my Obstetrician that no expecting parent wants to receive... an abnormality was found on my 20 week ultrasound and he thought that the baby's heart might be too small.  He said it was urgent for me to see a Perinatologist for a closer look.

I spent the last two days crying, praying and crying more and more.  Today was the day, Andrew and I headed to the NW Perinatology Center where our 4 hour long appointment began.  We started with another ultrasound, where it was confirmed that something was seriously wrong with our baby's heart.  Dr. King, a very experienced Pediatric Cardiologist came in and diagnosed that our baby has Hypoplastic Left Heart Syndrome.  This rare congenital heart defect is where the left side of the heart doesn't grow properly.  After birth, the left side of the heart isn't able to pump enough blood to the lungs and rest of the body.  Without surgery, this condition is fatal.

The Cardiologist gave us two different options that need to take place within the first week of birth.  The first option is a heart transplant, which is not offered in the state of Oregon and the availability for infant hearts is rare, not to mention it would be very risky to transport our newborn baby in such a fragile state of life.  Our second option is a Three-stage surgery to reconstruct the heart.  The first surgery would be within a few days of birth, the second surgery would be between 4 and 12 months old and the last surgery would be between 18 months and 3 years of age.  The Cardiologist also explained that following these surgeries, our child may suffer from some learning disabilities and will have a difficult time with athletics as he/she will become easily fatigued.  He also explained that this does not take away from the fact that our child can be very successful and live a full and relatively normal life.

After receiving all of this overwhelming information, they performed an amniocentesis to find out if their was any genetic connection with this defect.  If this is the case, their might not be any options for our baby at all.  The Cardiologist said that it is very rare, but must be done- just in case.  We will receive the results in about 9-14 days.

This is has been such an emotional time for both Andrew and I.  At first, I was devastated and could barely hear all of the information that was being thrown at us.  It was exhausting... mentally, physically and emotionally.  After the appointment, Andrew and I finally had a chance to talk about everything.  We started thinking about all of the positives in this situation and there really are so many.  We are very thankful to have such an amazing team of caring specialists that know what their doing.  We are blessed that our baby even has options for a successful quality of life and that the means to do so are right in front of us.  We received news yesterday that Londyn, baby and I are all covered under the Oregon Health Plan- so now we will have insurance for the extensive medical care in our baby's future.  We are so fortunate to have lots of family around for all of the love and support that we will need over these next few trying years.

Heavenly Father has really blessed our family thus far and the unknown that we are entering is just another test of our faith.  In the last few days, I have found myself really wondering if my prayers were being heard.  After being overcome with a sense of peace and hope for our baby and family, I know that He is listening and watching over us.

We are so thankful for all of your prayers, meals, visits, texts and e-mails - showing your love for our family.  

5 comments:

The Leiths said...

Kacie I am so so sorry, I wish I could comfort you, but I will definitely be praying for you and your family. You are so strong I know you can make it through this. Let me know if there is anything I can do, I know I'm far away but call me anytime! I love you!

Lindsey Smith said...

Kacie, I'm sorry! This must be so hard for you! I will keep you in my prayers my dear. . . I'm sending my love from the east coast! I hope you can feel it soon :)

Laura said...

We will be praying for you and your sweet baby!! I'm sure everything will go well!!

alittleyard said...

Kacie, I'm so sorry to hear this...I'll be thinking of you and your little one and hoping for the very best. Also, know that HLHS can be manageable...I don't know if you are familiar with the blog Sew Liberated, but the mama of that blog just had a little boy this spring with HLHS. Her blog posts about it have been inspiring to read...you might find some solace and understanding in them as you embark on your own journey.

(http://sewliberated.typepad.com/sew_liberated/2010/11/getting-to-the-heart-of-it-all.html)

Rochelle said...

Oh, I'm so sorry that you have this to worry about! I am glad you will have insurance now though, and and it sounds like there are lots of people who are going to be praying for you and your sweet baby- add us to the list!