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Nolan Makes the Big Time

In a much earlier post, when Nolan was first moved up to Progressive Care after his Norwood Procedure, I mentioned a group called the Cuddle Crew.  These were volunteers who would come and hold babies when their parents were unavailable, or they would hold the baby to give the parents a bit of a break.  It was a wonderful program and those volunteers gave me such a peace of mind, because I knew someone would be there with him…and they would hold him for HOURS.  They loved that kid.

Well one day we were contacted by one of the Nurse Practitioners on Nolan’s heart team.  She said the media was interested in doing a story about the Cuddle Crew and they also wanted to highlight some families.  She told me that when she asked the volunteers who they wanted in the story, they overwhelmingly said Nolan.  WOW.  Look who’s Mr. Popular.  I remember the nurses telling me that the Cuddle Crew would fight over who would get to hold Nolan…and I thought she was joking.  Apparently, she wasn’t!  So we definitely agreed to the interview and brought both twins to Levine Children’s Hospital. 

There, I got to meet some of these cuddle crew volunteers – Earl and Pam – for the first time ever.  I couldn’t thank them enough…and I told them how much their volunteering meant to me.  After a few minutes I realized Earl & Pam looked reeeeeally familiar.  As we got to talking, I figured it out: I met Earl & Pam just the week before at a Chamber of Commerce event that I was participating in for work.  SMALL WORLD. 

Anyhow, the reporter asked me some questions about the program and what it meant to me and then interviewed Earl and Pam while they wrestled with our crazy twins, who were about as squirmy as could be.  I appreciated the opportunity to thank those volunteers.  The Cuddle Crew began just before Nolan was moved up to Progressive Care, and it was started by that Nurse Practitioner and a Cardiologist, because they realized  that heart babies need more care than the typical child on that floor.  We are so thankful for that!  And it would also prove to be a great opportunity to promote CHD awareness in the community. 

Check out the story and video here:–cuddle-crew–helping-take-care-of-infants


The start to Nolan’s Progressive Care stay was pretty frustrating for us.  The day after he went to that floor, I was preoccupied with the thought that he was completely alone when Bekah or I weren’t there with him.  Here he was, almost 2 months old: he couldn’t press a call button when he was in pain…all he could do was cry, and I couldn’t help but think there was no one around to hear him.  God, that made me such a wreck.  It was all I could think about at work that day, I was pretty much useless. 

I continued being the Incredible Sulk for much of the day until I was able to hop in the car and haul down the hospital.  I was like a man possessed: I just wanted to get there and spend every second holding him and loving on him, just to make up for every moment he was alone.  When I got to the hospital, I checked in with his nurse and asked how his day went.  She said, “Oh Mr. Nolan had a very good day: we started this program called the Cuddle Crew today and volunteers held him for hours.”  I wanted to fall over right there.  The stress, the worry, it all left me like air out of a balloon.  Then suddenly I was happy and hopeful again.  I thanked the nurse and went right in to spend time with my little man. 

I can’t express how much thanks we owe to the volunteers on the Cuddle Crew.  They gave their free time to invest in Nolan…and other kids too.  Sadly there are some kids on the Progressive Care floor who have zero parents around…ever.  They’re there alone because there is no one there for them.  And these volunteers make a REAL difference.  I had the peace of mind of knowing someone was there to love on my Nolan…and it meant the world to me.  Thank you, Cuddle Crew, from the bottom of my heart!

And I can’t say enough wonderful things about Levine Children’s Hospital Volunteers as a whole.  I remember one Saturday getting a knock on Nolan’s door: it was a teenage volunteer, who brought a cart of goodies and asked if I needed anything.  She had toothpaste, deodorant, books, candy, snacks, you name it.  All the things to make our stay comfortable.  When you spend a ton of time in the hospital with a sick child, you often forget to take care of yourself too.  That’s where the volunteers come in.  They would come and bring toys for Nolan and were always asking if we needed anything.  They were awesome.  Thank you all!