Alyssa Bracelets

As a way to honor our daughter's memory and give back in her name, we decided to sell these bracelets in order to raise money for causes / needs close to our hearts.  We have been selling them for $4 a piece and all the profits are being given away.  More on that below:

On the late morning of October 9th when we walked into the ECMO procedure room to see our baby girl and meet with the doctors, we noticed that there were two little stuffed animals placed under Alyssa's arms.  We knew at that point that we were going to have to let go of Alyssa that day, it was just a matter of when.  So when I saw the stuffed animals, I knew just where they would end up.  One for big sister Addison and one for big brother Connor.  It was the only physical gift that Alyssa will ever be able to give to her siblings.  The emotional gifts she gave them are much more, but they wouldn't come to realize just how much she effected our lives and made such a difference until a little later.  Alyssa was given a red beanie baby bear named Mistletoe, which we gave to Addison.  And she also had a beanie squirrel, which we knew right away would belong to Connor.  When making a comment about the stuffed animals, one of the nurses made a comment that sometimes it's hard to find cute ones and they are wishing and hoping for people to bring in donations when they get down to those final few stuffed animals that aren't very cute.  That comment stuck in my head and an idea was born.  After discussing it with the kids, we decided that we'd sell the bracelets that we were ordering and we would use the profits to buy some stuffed animals to donate to other babies and toddlers that are placed on ECMO.  We have now purchased all the animals and placed them in a sealed container so they stay nice and clean.  I haven't gotten up the courage to go back to the hospital yet to deliver the stuffed animals, but we will soon.  And when we do, I'll be sure to post pictures and write a post about the experience.

Little did we know that we would sell way more bracelets than anticipated, which led us to the need to find another organization to donate money to in memory of Alyssa.  We have chosen to give most of our bracelet money to the Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome at Mayo Clinic in Rochester, MN.  Here is a link to their great program:
http://mayoresearch.mayo.edu/mayo/research/hypoplastic-left-heart-syndrome/what-is-hypoplastic-left-heart-syndrome.cfm 

Our plan is to make our donation sometime during CHD awareness week, which is February 7th - 14th. 

While I was pregnant with Alyssa, I'd made brief contact with Julia Thebiay, the HLHS research coordinator for the Mayo Clinic.  My original plan was for Alyssa to take part in a research study that would require a blood draw after birth (through her umbilical line, so no extra pokes) and also a blood draw from Chris and I.  We were hoping to take part in the Genetics research program which would hopefully someday lead to answers for the many unanswered questions surrounding HLHS.  Unfortunately, b/c Alyssa's time here on Earth was so short and in those 5 short days my mind was on other things, we never got the chance to take part in the study.  It was a little over a month after Alyssa's passing that I finally contacted Julia again to let her know of Alyssa's passing and that we would no longer be able to take part in the research study.  I also shared with her some of the additional heart defects that Alyssa was found to have (Right aortic arch with aberrant left subclavian artery and a complete vascular ring) and my concern for information that I had heard in regards to family members of patients with HLHS also having mild heart defects and not knowing.  Julia kindly asked if it would be okay to share Alyssa's story with Dr Nelson and Dr Olsen, both cardiologists that are part of the HLHS research program.  This was Thursday or Friday and she told me that she would be meeting with them on the following Monday morning and would love to share our story with them.  I gave her permission and didn't think much more about it.  Until Monday morning came around and I got a phone call from Julia (all previous contact had been through email).  I was overjoyed to know that despite Alyssa's early departure from this life, she was still going to make a difference in the lives of others.  Julia said that after talking with the cardiologists, they would like to ask us to be a part of a different research study that would allow our entire family to have echos done on our hearts free of charge.  Up until that point, they only had families in this particular research study that the HLHS child was still living.  But because of the uniqueness of Alyssa's heart, they accepted us into the study because they thought she could still make a difference and they could still learn from her.  I had all of Alyssa's medical records sent to Mayo Clinic so that they could get as much information as possible on her heart to use for their research.  And on January 20th, we made the trip to Rochester, MN so that the following day myself, my husband and our two oldest kiddos could have echos done on our hearts to rule out any underlying heart defects that may be linked to Alyssa's HLHS diagnosis.  I'm happy to report that we came home with 4 healthy hearts.  We also came home with a sense of belonging.  We got to finally meet Julia Thebiay and she really is an amazing person.  She made us feel welcome.  There is one comment that she made that I will always hold dear.  I pulled out a picture of Alyssa from my purse to show her and she asked if I would mind sending her a picture of Alyssa so that she could hang it up on their Wall of Fame / Wall of Hope.  She said "I like to have pictures of all of our patients, it reminds us of what we are fighting for and gives us hope to find more answers".  Did you see the part in that sentence that grabbed me by the heart strings....?  She said "OUR patients".  I said to her, "she should have been your patient, I wish she would have been".  And she stopped me in my tracks and said "Alyssa IS our patient and she always will be.  She may not be here physically but she is making a difference and I'd be honored to have her on our wall".  This of course made the tears flow.  Both tears of joy and tears of sadness.  You see, they had never even met Alyssa, but they had already accepted her as their own, knowing that they would never get the privilege of meeting her.  I pray that they are able to do great things with their research and hopefully find some answers to the many unknowns with HLHS.  But like everything, it takes money to find answers and sadly CHD (congenital heart disease or defect) research is one of the most underfunded groups.  So heartbreaking for the families of those 1 in 100 babies that are effected by a CHD every year.  So because of the experience we were given from Mayo Clinic, that is why we choose to donate in memory of our little peanut, Alyssa, in hopes that one day the prognosis for these innocent babies will be better. 
Here is the link to the Mayo Clinic HLHS blog:  http://hlhsblog.mayoclinic.org/
On the most recent post, the lady in white laying with her sweet heart baby is a fellow heart mom that I've become acquainted with through Facebook.  She makes hearts for other heart warriors and heart angels to place in a scrapbook to share with her little heart warrior when she is older.  It is her way of showing her daughter when she gets older that she is not alone and she is not so different and many other children have walked in her difficult shoes.  She is already forming a heart community connection for her daughter which I think is truly amazing and inspiring.  Here is the heart she made for our sweet Alyssa.  Here is her Facebook page: https://www.facebook.com/CeciliaVinjeAndFriends

And now I leave you with pictures that friends and family have shared with me of them wearing their Alyssa bracelets.