We pulled up in front of Crouse at 3:40. At the front desk we waited for a woman by the name of Janet to meet us. While there, we had the 7th floor notified to send someone down to meet us to pick up the diapers and baby wraps for the Teeny Tears Bereavement Diaper group that we started for families of stillborn babies. While waiting, Janet showed up and we cancelled the call as our meeting time was near. She cheerfully escorted us, Drew, my sister Ana and myself, to meet with Nancy, the woman whom I had been conversing with on the telephone. Nancy then took us aside and warmly thanked us for coming there and sharing ours, Ella's, story. She stated how much of an impact Ella has had on them and how the 2nd anniversary of her birth and our visit was very timely. She warmed us up to what we were about to walk into, a room full of Drs, nurses, staff and leadership of the hospital. To call it intimidating is an understatement. We followed her down the hall and thru the wooden double doors that led into the conference room where we were greeted by a dozen or so staff members who all stood as we walked in. Nancy introduced us and then one by one we were introduced to them. My heart skipped a beat when we got towards the end and I saw the one and only nurse I mentioned in my letter! It was Helen, and she looked very distressed. We were motioned to sit front and center at the huge tables and were given water. Many deep breaths were taken at this point. Derrick, the man leading the meeting, then also noted how it was exactly two years ago that we were there last. He gestured me to start. I pulled out three picture frames from my bag, one of myself warmly embracing Ella while kissing her forehead, one of Ella wrapped in her pink and brown blanket that she wore basically her whole life, and a frame with three pictures in it. The first was one of Drew holding Ella with Nadia and Ivy around her from Cortland hospital, the middle was of her in her "tank" while she was in Crouse, and the last of her sisters holding on to her while she was home. I started by introducing Ella to them all, and showing them the differences in our experience at their hospital compared to the rest of her life. It was the only time we were not able to enjoy her and be a family. They passed the pictures around the room, all commenting on how lovely she was. The frames were then displayed at the end of the table for the rest of the "meeting." I went on to share how they made us feel while we were there, the inhumane practices and words we seen and heard. It was tough. We told them we were not there to single anyone out, to look for justification, nor to express anger. Instead we were there in hopes to move forward in a positive, healing direction, making suggestions for improvements along the way. They deeply thanked us for writing the letter and for being willing to come for the meeting, something they said most hospitals would not have done. Drew told them that Ella was not treated like a viable person, instead like a monster who should be left to die. We told them about some things that went horribly wrong and they shared with us some of the changes they have made since and some because of Ella.
They now have a support group for families to meet and speak to a staff member who is not affiliated with the NICU. Here they can express their concerns, be heard, and find out what their rights are. Families can learn what practices are open for change in meeting their desires and which are based on laws. At this point the staff member can relay their concerns to an appointed NICU member where they can then work on meeting a common ground.
The second major change has been sibling time. Three times a week they have a scheduled time where siblings of patients are allowed to come in and spend time with their families, together. They said this is very new and something that is still being "worked on" as the NICU set up is not accommodating for large groups of people, especially energetic children. They have found this to be very beneficial for both the babies and the families.
The third change is "kangaroo care" where they encourage both parents to come in and hold their infant skin to skin for extended lengths of time. They have been pleased with the results of this as well.
The fourth major change is that they encourage parents to be there when the Drs come in and do their "rounds." Our experience was we had to leave 3 times a day while the Drs came in and made adjustments in the patient's care. This is also when decisions were made about discharging progress. After we returned from the "rounds" it was up to each nurse to translate what the Drs had said. Many times their stories were conflicting or left to their own personal interpretation. This was extremely frustrating.
The fifth change was very exciting to us. They are trying to break away, as much as possible, from their scheduled and routine-based mentality. Knowing that routine is what efficiently meets everyone's basic needs, they are also open to the idea of meeting everyone's individual needs. For example, they are starting "cue feedings" where they watch for hunger cues and act on them. Instead of waiting for the 3 hour mark, they are feeding babies based on their hunger signs. This would have been tremendous for us! In my notes that I shared with them I stated that we watched Ella lose her sucking reflex as she grew weak from lack of nourishment. We believe that because of this, we missed our prime opportunity for her to learn to possibly nurse and use the bottle efficiently.
All of these changes would have benefited our specific case immensely. Most of the changes seem like common sense to us and I am not sure why they needed these conclusions to be based on a recent "study" or claim, but either way I think an instinctive, intelligent, loving parent could draw the same conclusion. We were highly impressed by their changes and are proud to be a piece to the puzzle that is altogether change for the better, glory to God. We had an open question and answer time where they asked us specific questions about things we had seen, heard and experienced. Helen raised her hand and said "can I ask you a question?" Drew responded with "can I ask you a question first? Do you remember me?" She started crying and said that she did remember, and that it was hard to forget him. Helen asked Drew if we remembered her and he said yes. Wondering if that was good or bad, he responded with "I am glad we are here so that hopefully we can learn something from this." She was a key figure in our visit. She was responsible for throwing her weight around and starting Ella on the tube feedings. I am not sure what her title was, but she was above the other nurses. I thanked her for that, and for setting up our "family day," our best memory This was when the most pictures were taken in Ella's first days of life. She asked why we had to wait for Monday to leave when Friday we were given the diagnosis they required for discharge. I told her it was because hospice was not open on the weekends, we needed them to meet us at our home, according to their policy.
Many times during the meeting there was not a dry eye in the room, proving to us that our situation did matter and did truly impact them. That is all we had ever hoped for. My favorite part about the time we spent there was how they consistently called Ella by her name. This was very healing as during our previous experience she was referred to as "these babies." As the meeting drew to a close, we were asked if there was anything else we wanted to share. Ana then grabbed the bag of bereavement diapers and we showed them the diapers, the baby wraps and the one beautiful burial gown sewn by our friend Christel. We explained their purpose, how they came about and how it was important to us that all babies have dignity while in their last hours with their family. Again the room was full of teary eyes. We thanked them for honoring us and taking our case seriously. We all stood up to leave and we all hugged Helen, who was visibly having a hard time sitting through it all. She sincerely apologized through her tears and I told her she had enabled us to make our best memories in Crouse.
We left the room with Nancy and she directed us to a sitting area. Here she thanked us again and asked if there was anything they could do to make us feel better or if there were any last things we requested. We couldn't think of anything so she stated that she would like to take it upon herself to do something in honor of Ella in any way we desired. She said she would be contacting me in the near future to see what we have come up with.
We could not be more pleased with the outcome. God has been so faithful to us through His ability to take something so sad and turn it into something so wonderful for His glory! His timing has been perfect right down to the tiny details, Ella's life has been given meaning beyond measure, and our family has been healed and made whole.
He really does turn mourning into dancing!
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