Mr and Mrs Bard
I'm not sure if you remember me, but I had the honor to serve as the assistant dean of students at Curry while Evan was a student there, and was given the immense privilege to speak at her on-campus memorial. I left the College last winter and am now at Emerson College, but Curry will always have a very special place in my heart, as you know - it is a special place.
I'm writing tonight from the NICU at South Shore Hospital in Weymouth, where our fourth son was born on the 21st. Shortly after his birth he developed some breathing issues and some other blood sugar concerns which got him admitted into the NICU. He is doing much better but still has a day or two in the NICU.
My wife was discharged earlier today. We were quite stressed about balancing how to be there for our boy and still be back home to help our other three boys (7 year old and 2.5 year old twin boys), and to get them to see their new brother.
That's when the nurse asked if we were familiar with Angle Eyes. It rang a bell, but in this fog of the past three days nothing really stood out. Until I looked over and saw the pink cord! And that brought a tear to my eye (good ones, great ones!). I instantly put it all together, this camera was going to help me and the family at home connect with their little brother they are so anxiously waiting to see and play with. All thanks to Evan! What a blessing, not only to have this tool but to deeply know what it really means and why it is here helping so many. My wife and I happily signed up for the feed (with those happy tears!) and both sighed a huge sigh of relief. What an awesome sign and blessing, not only did we have great NICU nurses looking after our boy, but also had Evan.
So, just wanted to share and thank you for your work and the foundations work making these amazing tools available for so many families. I've attached some pictures that made us so happy, and hope they do the same for you. As we celebrate Thanksgiving this week, we certainly will be thankful for what the EvvGirl Foundation has done.
I hope you all are well, and have a happy holiday,
Erik Muurisepp
Associate Dean of Students
Emerson College
My daughter Josie was born premature and lived just 18 hours. Her whole life was spent in the Neonatal Intensive Care Unit (NICU) and I wasn't able to see her in person. I was in isolation because days before, I came into contact with a woman in the emergency room who had a confirmed case of the measles. My childhood immunization had worn off and there was a chance I too would come down with the disease.
Josie's father, grandmothers, and an aunt were able to go to the NICU to gaze at her, but I could not. They brought back photos of my girl but as sweet as they were, they were just photos to me.
The afternoon that Josie was born the NICU told us that they would be setting up a camera so that we could check in on Josie and watch over her for an hour each day. We were set up with a user name and password to log into the web cam and see our precious, premature baby. It was amazing. From my quarantined room, I was able to see my daughter wiggle. I could see Josie's little fingers and her tiny nose. It wasn't the same as being there with her, but I saw her move, I saw Josie living.
I had no idea how precious those NICU camera moments would prove to be...
In the early hours of the next morning a NICU nurse called me to tell me that they had done all they could for Josie and that she wouldn't live much longer. Before I knew it they were wheeling a mobile crib into my room and placing my dying daughter in my arms. Hello and goodbye were said in the same breath. She was too weak to move by the time I got to meet her.
When I left the hospital without my daughter, I was given a memory box with her hospital bracelet, a gown they put her in, a handmade blanket that she was wrapped in, and a few other things. Along with some paperwork on local bereavement groups, I was also given a pamphlet on the EvvGirl Foundation, the group who funded the first cameras put into the Baystate NICU.
The NICU cam memories and her birth certificate are the only proof that I have that my daughter lived. Thank you, EvvGirl. Thank you for allowing me to see life in my daughter.
Josie Danielle Desmarais
Dear South Shore Hospital Foundation,
Mary Smith extended an invitation to Teresa to attend your reception to celebrate the installation of the webcams in the NICU and Special Care Nursery. Due to circumstances surrounding the birth, that won't be able to happen. Teresa was extremely happy to give permission to view Sylvia during your event, and we hope Sylvia is her active self during her moment in the spotlight! I'd like to take a minute however to let you know how valuable the cameras have been to the situation.
As you may be aware, there were some serious complications with Sylvia's birth. Shortly after giving birth (at 30 weeks), Teresa's condition worsened and she was transferred to a Boston hospital for more intensive treatment. Her liver and kidneys effectively shutdown, in a very acute way. In addition, a blood clot was identified. All these things caused her to remain in the ICU. After a period of time the hospital staff thought that Teresa may be nearing liver transplant status. They arranged a transfer to another Boston hospital to allow for pre-transplant evaluation and assessment. During this time, Teresa's mother arrived from out of state to be at her side. With all the things going on, the staff at the South Shore Hospital NICU have cared for Sylvia. Clearly Teresa was not in a position to visit Sylvia, and everyone involved was staying at her side. In all of this, being far from Sylvia created obvious emotional loss. In this time, Teresa had lost her mental status for an extended period. She was in a very precarious position. I offer you this information to illustrate how dark of a time it was - truly Teresa's life was in danger. It would be natural at that moment to transfer emotion to the child - except in this case Sylvia was far away.
In this context being able to see Sylvia, to watch her little hands and feet move was undescribable. To see her kicking away at a blanket or wrap. Watching her chest expanding with each breath. To see her temperature being taken. Seeing the blue tint to the image and know she was under the bilirubin lights. For Teresa's mother to be able to distract herself from the enormity of the situation with the beauty of her granddaughter was unspeakably valuable. When I was standing by Teresa's side and the walls were closing in and I was just in need of something to fortify my resolve, being able to see Sylvia at peace in her isolette was an immeasurable gift.
There will be families who will have a more conventional experience with the NICU - they will certainly enjoy being able to share a view of their child with family and friends. There is significant value in that. They will be able to supplement their visits to the NICU with some online visiting. Those people will certainly appreciate the program. For us, it was truly in every way a lifeline. It helped to keep us going when we needed a little something to do so. If I may be so bold, the investment in the cameras has already paid for itself.
I end this note with the news that Teresa is improving, miraculously so. She has awoken and is viewing the camera herself - until such time as she can be with her in person. Her liver begins it's long march to recovery. Her kidneys are to this point not responding and so the dialysis will remain necessary for the foreseeable future. She has a long few months ahead of her - and during that time she may not be able to be near the baby. The camera will continue to reassure her of the wonderful care Sylvia is in at the South Shore NICU. There are lots of things remaining for us to figure out during Teresa's recovery, but please stress to the donors that unlike the local team lately, they have hit this one out of the park.
Dewey Schramm