We are so blessed to have the BEST nurse coordinator, Katherine Reeves at Levine Children's Hospital. She makes sure we are 100% in the loop, meeting all the people that will calm our nerves, giving us a tour of every floor and hospital room that we will encounter during our stay at the hospital in January 2017, willing to connect us with families in our area with similar stories as ours, and making sure we know 100% what our options are for community support and other services that the hospital has available to families and patients, BUT all of this ONLY when we are READY to proceed at our comfort. SHE. IS. THE. BEST. When I mention to others that work at Levine or have gone through a similar CHD (congenital heart defect) experience, they always ask if we are working with Katherine, she's a super star.
(Katherine in the white top)
Okay back to Baby Luck...
Levine has MANY non profit organizations, the one that we have heard tons about within the heart community has been Camp Luck. This is a 6 day Summer camp for children ages 7-14, of course Baby Degan would qualify and then a sibling can attend too. I am so excited about that because I have been having some thoughts about how Olivia might feel left out with all the extra attention and "services" that the baby is going to receive. Speaking of feeling left out, it was so the OPPOSITE when Katherine invited us to Baby Luck, a great service that brings families of the youngest, under 7 years old, heart patients together. I met the family, Sara and William (heart patient) pictured on the Baby Luck web header, at the Baby Luck Event (what a true breath of sunshine and positivity. Seriously she was so nice and of course we have a few contacts in common, it sure is a small world!). We had a fantastic time, Olivia had a ball playing with the other kids. It's pretty amazing that you cannot even tell that many of these children have been through one or two or more heart surgeries. They live a full, often unrestricted life, so again we are super hopeful that this will be the same story for Baby Degan.
Mark and I met multiple families that were in our shoes just a few short months/years ago. They shared stories and advice with us. It is nice to hear other peoples experiences, but one definite similar point that was made was that the staff at Levine, from the RNs to the doctors and sugeons, were out of this world and so WONDERFUL. That is always very reassuring to hear! I had asked Katherine at the event if any other families had a similar diagnosis as we did and she didn't think that any of the families that were attending with heart kiddos did. But then I met Jessica! Her and I have the SAME STORY! She is currently pregnant, due January 2017 with their second baby (who has the heart defect Tetrology of Fallot) and their first is 2 1/2 years old, sweet Charlie. Olivia and Charlie hit it off at the party, I have a feeling they will be seeing each other again! Pictured below is me and Jessica and Olivia and Charlie, so sweet! I had a great time chatting with Jessica and learning more about her story and she about mine. It's nice to have someone with an instant connection when attending these events, because you can walk in feeling a bit isolated.
The staff that was present at the party was wonderful. Each of them introduced themselves to us and one of them even shared that she was a heart patient herself, being born with a heart defect that they watched for years which she then had heart surgery as a teenager and she was able to enjoy her teenage years as a competitive gymnast. It is so comforting to know that our baby has the possibility to live a "normal" minimally restricted life, so many shared with us that their kiddos do and it's possible!
We are so happy that we took the time out of our hectic schedules this holiday season to drive down to Charlotte for a mid-morning holiday gathering! I look forward to going back and attending the bi-monthly "play groups" to meet more families and hopefully I can help ease another new moms scary transition into this world of CHD.
The party was hosted at The Ronald McDonald House in Charlotte, just a short 5 minute walk from the hospital. It is very possible Mark and I may be taking advantage of those accomodations (considering our drive is about 30 minutes **in normal traffic**, rush hour could set us back 1-1.5 hours... eeek). It sure is hard to say and plan exactly what we can expect, but for now, we have our mind at ease with family, friends and tons of community support. We will just continue to pray that God provides us with peace over this situation and Mark and I both continue with a heart FULL of Faith and Hope!
xoxo, Dana
