Last year my life was so hectic that I did not celebrate or even know there was a day dedicated to parents of preemies. The first 18 months of Evan’s life were some of the hardest days I have ever experienced. But nothing compares to the hardship of loosing someone close to you. And unfortunately in the beginning of 2012 we lost an amazing woman who played a vital role in saving Evan’s life. Barb was a clinical expert at Yale’s New Born Special Care Unit and had experience with Ichthyosis. Today is 'Parents of Preemies Day' and a memorial was held at Yale where many of Barb's friends and colleagues spoke, as well as myself, in her honor.
When Evan was born I had mixed emotions about the intensity of having a 31 week old baby, with a severe genetic skin disorder. It is such a rare skin disorder that many doctors and nurses have never seen or will never experienced cases like Evan’s. But fortunately for our precious baby, Barb was there to save him.
Barb was awaiting Evan’s arrival on that Wednesday afternoon almost 2 years ago. Not only was she was prepared, she help the other nurses and doctors by giving them information, such as identifying specific precautions and care instructions for a baby born with severe Ichthyosis. Barb had cared for another baby in the NBSCU about 18 years prior with a similar condition. Having Barb there for Evan’s birth was a blessing for us.
The first few days I was at Yale, after Evan was born, are a blur to me. I cannot remember the very first time that I met Barb. But I do know that before I was even discharged from the hospital, I felt like I had known Barb my entire life. She was such a warm and friendly person. Days after Evan was born, I remember walking into the NBSCU and talking to Barb about all the progress Evan had been making in the very short time he had been alive. She made me feel so comforted and gave my husband and I so much hope for Evan’s survival.
Even though I could not wait for Evan to be discharged from the NBSCU, I enjoyed going there and being with Barb and all of the other nurses that cared for Evan. We had such a loving NICU team. Almost everyday when I went in to see Evan, Barb had pictures printed out for me of Evan’s progression. Pictures taken only days apart looked like progress that you would think would have taken weeks! Barb was always so happy and excited when she had a new picture to share. And she LOVED when I emailed pictures of Evan that were taken on the weekends while she was not working.
Once Evan was discharged it was a wonderful feeling. It made me a little sad in the fact that I would not get to see Barb or the other nurses everyday. We had developled such a strong bond over the 58 days Evan was in the NBSCU. Pictures emails were our main source of communication. With Evan’s condition, time made such a big difference in regards to his appearance and I felt like it always made Barb’s day when I sent her pictures. And from what I have been told, Barb only had two pictures in her office; one picture of her mother and one picture of my precious little boy. We still saw Barb every time we had an appointment at Yale. And I never thought I would EVER be so excited to go to the 4th floor of the Children’s Hospital!
A few months after Evan was born he had to stay overnight at Yale for a minor surgery. And again Barb came to our rescue!! She made sure the proper precautions were made for Evan when he got out of recovery. She printed out information about Evan’s condition and went to educate the nurses who would be taking care of him to be sure he was in the best hands. She even brought up an Isolette to Evan’s room to make sure he had a humid place to sleep to help protect his skin. I remember it was a Friday and Evan’s surgery was delayed a few hours. We did not get out of recovery until 7 or 8 at night and when we went upstairs to his room there was Barb waiting for him to make sure we got settled. I was so touched by the care and dedication she had for my child. She really was Evan’s angel on Earth.
One memory I will never forget, is when Barb came to Evan’s first birthday party. It was such a milestone for us and I am so glad she was able to share it with our family. We even got a group picture of my husband, Evan, Barb and I that I will forever cherish.
We will miss Barb dearly. She led an amazing nursing team who she educated about Evan’s condition, which is why he is here today. She was such a kind and loving woman and brought so much happiness into our lives. I wish Evan could have grown up with this amazing woman in his life. But even though Evan may not remember Barb, he will definitely know her for what a dedicated, loving, and caring nurse, friend and angel she was to him and how she helped save his life. She was Evan’s angel on Earth and now she is an angel looking over him. We love you Barb and will NEVER forget you.
Evan's 1st Birthday Party
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