Thursday, January 31, 2013

Heart Month is here!

Tomorrow kick starts Heart Month and it is also the day to GO RED! We are asking people to wear red to support awareness for congenital heart defects. 1 in 100 babies are diagnosed with a heart defect, making it the most common birth defect. Although this is so common, many people still do not know about CHDs. The goal of the heart community is to educate and empower people to make a difference  so that one day these kids won't be known as the "1 in 100".

One of the ways to make a difference is by implementing a newborn screen. This test is done in the hospital at the time of the other newborn testing and quick, easy, and painless. It involves wrapping a pulse ox probe around the baby's hand and foot. This measures the amount of oxygenated hemoglobin in the blood. For some perspective, Jensen's saturations run around 80 where mine run about 98-100.  For more info about the test click here. Many states, including North Carolina, still do not have newborn screening in place to detect heart defects.  
All of this talk about detection always brings me back to when Jensen was first born. We considered ourselves blessed to know his diagnosis before he was born. He looked so healthy and even scored a 9/9 on his APGAR. I don't even like to think about what could have happened if we had taken him home, not knowing about his broken heart. 

This was our "healthy" little man before he went into surgery.

Kissing my boy goodbye as he was wheeled to surgery was so surreal. Its hard to even put into words how painful and how lost you feel knowing what your baby will face. 

Jensen overcame so many obstacles through that surgery and recovery. Jeremy and I never expected things to go so wrong. One surgery turned into two....two turned into three...the sound of the code bell as his heart rate hit zero... I vividly remember running down the hallway behind Jensen and this team as they were taking him back to the OR to put him on ECMO.  I also remember having to sign consent forms while we were running. I have never felt so hollow or confused in my life. I was consenting to something but I had no idea what. Permission for them to save my baby again? 

Then two weeks of sleepless nights, hours by Jensen's bed, endless questions to the medical staff, and so much heartache later...came this. I got to hold him again. This journey has been insane and amazing at the same time. We went from being devastated about the massive complications he suffered to rejoicing in every single movement he made. The day I held him in my arms was unforgettable. Dr. Fuller came by to visit him of course and we both cried tears of joy =) 

My goal for this month is to spread HOPE. While there can be so much sadness in the reality we face, we want to assure everyone that there is much more happiness! We are so blessed to be parents to this awesome little dude and I'm reminded of that every single day. His smile lights up the room and he has the most hilarious personality. All of that from a sick kid with a heart defect? Yes. He's amazing. He's my hope. He's the reason that I want other parents to know that things are going to be ok. Being a heart parent is challenging beyond belief, but the reward is so, so very sweet <3

There is hope, and his name is Jensen Aaron. 

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