Our New Family July 2010

Our New Family July 2010
Our New Family

About our family...

Our family started on June 2, 2000. We have been married 10 years. We have three boys (Drake 5, Warner 4, & Henry). Michael is the Executive Director of Utah Shared Access Alliance (USA-ALL) and a state lobbyist. I am a registered nurse, and a third-year law student at BYU. Drake is starting Kindergarten in the fall, and Warner is getting ready to start pre-school in the fall. Henry arrived July 7, 2010. Henry was diagnosed with Hypoplastic Left Heart Syndrome (HLHS) and passed away, after 32 hours, on July 9, 2010. This blog provided updates on what was going on with Henry, and gives a little insight into our thoughts through the challenges we faced during his birth and death.

Be sure to read "The day we found out our baby has HLHS," under must read blogs, and if you want more info about HLHS there is a link in the right column that is a brochure from Mayo Clinic about HLHS.

Saturday, June 12, 2010

Meeting A Family Who Chose Comfort Care

We met with the Carbon’s to talk about their daughter Elizabeth born in January 2007. Elizabeth was diagnosed with Hypoplastic Left Heart Syndrome (HLHS) just like our baby. The Carbon’s chose comfort care and it was very helpful to talk to them about why they made the decision and the effects of that decision.

As we spoke to the Carbon’s the weight of their grief fell upon me. After more than two years the sadness that exists in their life is still overwhelming. This couple seems to be a very spiritually in tune couple that believes the decision they made was absolutely the correct decision for their family; even with that conviction and resolve in their decision there is much grief and sadness. Their grief and sadness felt to me like despair. I am fearful of the same fate in my household. Will the sadness of losing a child seep into my home? Will the sadness cloak and overshadow all other joy or happiness that could take place? The thought of being so sad for so long is very frightening.

The Carbon’s helped us understand details about the birth and the short life of an HLHS baby which has further prepared us for Henry’s birth. They also informed us of what to expect with hospice care. They talked about how their two older children dealt with the death, which gave us insight into what to expect and how to help Drake and Warner deal with the loss of their brother.

We are planning on Henry coming home with us from the hospital. The Carbon’s baby, Elizabeth, lived 15 days, and sadly she died on Valentine’s Day. How can something so tragic end even more tragically. Forever Valentine’s Day, at least for their family, will be a time of sadness instead of a time to express love. Today I am 90% for comfort care.


  1. Marcie, you are an Amazing Woman. I think what you are doing is remarkable and I know you will be able to get through this. I would be a non-functioning basket case right now and look at you, still researching everything that you can, preparing in every possible way. You guys are in our prayers. Please call if there's anything we can do.

  2. I hope that the time you have with your little Henry will fill you with joy and peace to help you deal with his loss. Thinking of you!