Our BBCH Story
Our Barbara Bush Children’s Hospital story started back on July 20, 2008, when our daughter Addison was born. We quickly knew that things were going to be difficult. When Addison was 5 days old she was diagnosed with a genetic condition called Smith Lemli Opitz, which at the root of the condition means that Addison could not produce her own cholesterol. For that reason she had many severe complications which included a failure to thrive, difficulties with swallowing and eating which ultimately led to a feeding tube inserted surgically. Addison also had numerous developmental delays and a weak immune system to top it off. Despite all of those challenges, she was the sweetest little girl ever with a smile that brightened every room!
When she was about 2 weeks old she had her first surgery for placement of her feeding tube. Unfortunately, she developed a complication a few days later and was rushed to the pediatric intensive care unit later that night. The ICU can be a scary place, so when we woke that morning to see that Addison’s ICU nurse colored a beautiful sign for above Addison’s bed it brought comfort when we needed it most.
Addison was in the ICU for a couple very long weeks with countless tests and procedures. Finally, one day when my husband and I were driving in I said to him, “We just need to take Addison home today”. It is incredibly challenging having a child in the hospital for many reasons. We had been driving back and forth to the hospital for about a month, waking up early and staying late. When we got to the hospital that morning, the doctors let us know that Addison was not improving and that she was unlikely to get better. It was the worst thing a parent could ever hear.
At that point we decided enough was enough and we asked the doctors to help us get ready to take her home. We were determined to take Addison to the beach, and feel the sun on her face and dip her toes in the ocean water. We were beyond grateful that our team of doctors were able to help us and quickly got all of our discharge work in order. One of the doctors warned us that Addison was unlikely to survive the car ride home.
Well, not only did she make the car ride home, we went to the beach and experienced many other amazing memories for almost 11 years that were not guaranteed.
Among her happy memories there are plenty of not so good ones too. She has spent at least 200 days and nights in the hospital, 5 surgeries, and too many procedures to try and count. The amazing doctors and nurses were always so welcoming and compassionate. The Barbara Bush Children’s Hospital became a second home for us filled with familiar and friendly faces. We remain close with many of them still today and we’re proud to call them friends.
When Addison was in the hospital with the Flu in February 2019 it became clear to me that we needed to find a way to give back to such a special place close to our hearts. During that stay we had the pleasure of meeting Cara, the Child Life Specialist at BBCH and she was truly amazing. This was Addison first visit to the ICU since our son Owen was born. Cara was so wonderful with Owen and explained the medical terms on his level so he wouldn’t be scared when he walked into his big sister’s room. She even supplied him with a basket of toys to keep in Addison’s room to make him feel more comfortable.
After we were discharged I teamed up with Cara to put in place a closet for the parents of children staying in the hospital. It is filled with essentials from home, comfy pants, phone chargers parents may have forgotten to pack, a yummy snack, blankets, journals and more. It is currently supporting the PICU and will hopefully be rolled out to the NICU very soon. The Parent’s Closet is a privately funded support system for parents provided by the Babygirl Foundation. There is an Amazon wish list available to purchase parents closet as well.
Sadly Addison did not get to see the closet that was inspired by our many hospital stays and the experiences we had over those almost 11 years. She passed away June 23, 2019 but her legacy will live on.