MOUNT SINAI HOSPITAL PERINATAL PARENTS ASSOCIATION VOLUME 4 ISSUE 1 WINTER 2009 Mount Sinai recognizes parentread volunteers more on page 2 Happy New Year! NICU Graduat We hope you have all enjoyed the holiday season. As you can see from the articles in the newsletter this has been a busy year for parent advisors. We are delighted to inform you that the NICU Graduates Picnic will be Sunday, June 14, 2009 in High Park from 12:00 noon to 3p.m. If you are interested in donating or volunteering to the picnic please contact Marianne at mbracht@mtsinai.on.ca or 416.586.4800 ext 5338. Our Parent Advisory meets one Wednesday evening a month from 6:30p.m. to 8:30p.m. We welcome new parents at any time. Join us... Frida and Marianne MARK YOUR C ALENDAR es Picn ic 2009 Sunday, June 14, 2 High Park 009 Picnic Areas 2&3 12:00 n oon to 3p.m. ESTED? ARE YOU INTER raining T Y D D U B T N E R PA arch 7, 2009 Saturday, M sted in training If you are intere contact Frida at buddy, to be a parent ext 5213 6 8 416 5 4800 ai.on.ca or fardal@mtsin 1
On Wednesday, November 19, 2009, many enjoyed a lovely celebration honouring the work of our parent advisors and parent buddies. The following article appeared in Sinai Scene and is reprinted with permission. MOUNT SINAI RECOGNIZES PARENT VOLUNTEERS By Gerri Stoev At a special event on November 19, Mount Sinai recognized more than 100 parent volunteers for their vital role in the Valentine Neonatal Intensive Care Unit s Parent Buddy Program and Parent Advisory Committee. These parent volunteers help other parents with premature babies and help Hospital administrators enhance care in the NICU. For Jacque Lauzon joining the NICU s programs was the natural thing to do after spending five months in Mount Sinai s NICU with his daughter Isla. Parents with premature babies need someone who understands what they are going through, said Lauzon, whose daughter was born at 26 weeks weighing two pounds. As a parent buddy I educate and help parents to understand their situation so they can be less stressed about day-today issues and concentrate on talking to their child, singing, reading and changing diapers. The Lauzon Family Mount Sinai s Parent Buddy Program. In addition, the parent advisors collaborate with Hospital staff to enhance family-centred care in the NICU. The Parent Buddy program represents over 20 different languages which allows for parents whose language is not English to be matched with a buddy who shares the same language and culture. In addition to the Parent Buddy Program, the Parent Advisory Committee runs workshops that respond to the challenges of parenting from the day parents take the babies home to the day of the children entering school. As a parent advisor, Lauzon also gives his input into ways to help the Hospital staff deal with distraught parents and reduce their level of stress. Parents tell us that they find it helpful to talk to their buddy during the baby s hospitalization because their buddy has survived a similar experience, said Frida Ardal, Co-ordinator of To learn more about the Parent Buddy Program and the Parent Advisory Committee visit www.mountsinai.on.ca/care/nicu and select PARENT SUPPORT WORDS OF WISDOM Do you have advice to share with other parents of a premature child(ren) about... Great recreational programs for 1-2 year old prems (ideally not location specific - our newsletter travels throughout Ontario) When to start your child(ren) in Junior Kindergarten - especially those born later in the calendar year thank you Is there a NICU staff member or Parent Buddy that made a BIG difference for you and your family? We will dedicate space in each newsletter to share special words of thanks from you. Send a short Words of Wisdom OR BIG difference response to fardal@mtsinai.on.ca and we will share responses in our next newsletter. 2
From The NICU To Starting School By Kristen Christie The entire night before September 4, 2008 all I kept thinking about was how far Emma had come. How far we all had come. Four years before we had been sitting in the NICU, Em was vented, we were waiting to head over to HSC for a PDA ligation, her weight had sunk to 1lb 10 ounces and we had not one clue as to what the future would hold. We couldn t even begin to imagine what the next day in hospital would bring, much less imagine four years into the future with Emma starting school. That seemed a possibility so extreme we didn t even dare to dream it. Still, there I was, four years later getting things ready for Emma s first day of school. As I bathed her the night before I cried. As I laid her outfit on her bed for the next day I cried. As I tucked her in for the last time as my little girl who spent her days with me, I cried. I cried when my alarm went off in the morning. I cried as I made breakfast. I cried getting her up. I cried getting her dressed. When it came time to take the obligatory first day of school pictures I stopped crying briefly so I could get a decent shot. Still, as Scott, Emma and I all headed over to the school I put my sunglasses on and began quietly crying again. It was a staggering flood of emotions as we took the short two minute walk to school. I could so vividly remember every time I thought I might lose her. Here I was walking her to school and I felt like I was losing again. I was losing the little part of my girl whose world revolved around me. I was losing that to the world of junior kindergarten. Even with the loss that I felt, there was an enormous sense of pride. As I saw all the other kids coming to school that morning I wondered how many of them had to fight as hard as Emma to get to this point. I knew how bravely my little girl had fought to get to the point she was now at. I watched her world fill with excitement as we got closer to her door. As she saw friends that she remembered from play group arrive as they were also in her class. What could have potentially been a daunting experience for her, she just jumped right on top off. I started to then imagine all the amazing possibilities that the world had in store for her. I started to wonder what subjects she would excel in and what ones she would desperately try to convince me that she had no homework in! I wondered who her best friends would be. I started to imagine everything good that could come her way. As she headed into school that morning with her blond hair flying, her princess back pack bouncing, a quick wave to Scott and I along with I love you I felt grateful. I still felt that I was losing a piece of my little girl, I was still crying, I was still proud but most importantly I was grateful. I was grateful to every nurse, doctor, RT, LC, social worker, chaplain, friend and family member who helped get her this far. Even more important, than that, I was grateful to Emma. Grateful to her, for having this amazing inner resilience to just keep going. Whatever odds are in front of her she just keeps going. Emma is spectacular. She is filled with love and hope and every good thing for the future. She is my little 26 weeker who won t take no for an answer, who believes that anything is possible, who loves school, and who is my miracle. She is taking her classroom and school by storm, I m hoping that they are ready for her! 3
NICU GRADUATE, SULLIVAN, TELLS HIS STORY AT A TUESDAY PARENT GROUP EVENING On Tuesday, January 6, 2009 at the first NICU parent group gathering of the new year, 10-year old Sullivan told his story. He was born at 27 weeks, weighing a mere 600gm. His brother Griffen was stillborn. Ironically, exactly ten years ago his parents, Maureen and Andrew, had been attending the parent group. The family brought supper for NICU parents and staff. A huge birthday cake celebrating Sullivan s birthday (as well as his sister Bailey s 6 th birthday) was enjoyed by all. Parents in attendance were inspired to meet such a happy healthy 10-year old who faced so many challenges in the NICU. The nurses who cared for Sullivan ten years ago commented on how rewarding it was for them to meet Sullivan. This was the second time in the last few months that a ten year old returned to the group to tell his story. This fall, Stephen Gray told his story and also gave hope to the parents in attendance. Ten years ago his parents, Chio and James, also attended the parent group. At that time, no supper was provided. Once Stephen was home, Chio decided to make and deliver sandwiches to the group once a month because she remembered how difficult it was to find time for supper when Stephen was in the NICU. Today, pizza dinners are provided through the ongoing generous donations of families who have attended the group. Sullivan with special nurses who were thrilled to meet him again. Here is the text of Sullivan s speech to the Parent Group, Tuesday, January 6, 2009 My name is Sullivan Nash. I was born on November 8, 1998. What was special about my birth? I was small and I was skinny. I was the first born. My sister s name is Bailey. I am in grade 4 in a French school. I like playing: videogames, board games, sports, etc. My favourite foods are chocolate, cheese, pasta, etc I do not like vegetables and fruits and needles and bees and dogs (except for those who I know.) I can make good sandcastles, I dance well. I have just learned to ski. I find it difficult to write certain words that I have not written before and to draw a complicated picture. My dreams are to become famous and rich or become an author. The only things that I know about being premature is that I was born in an incubator, well, I was born and then put in an incubator, and my Dad s ring was like a giant big bracelet to me. The sports that I play are soccer, volleyball, basketball, swimming, skating and curling. Classes I have taken are: Hip Hop, acting, computer, animation and Science Center. Thank you very much for listening and I would also like to thank the nurses, doctors and staff of Mt. Sinai that took care of me. (Without them I would not be here). Sullivan and Dad 4
MAKING A DIFFERENCE... Our final activity of 2008 was a wonderful HOLIDAY CELEBRATION, hosted by Lauren and Sam Pezzullo who initiated the Linden Fund to assist NICU families. Their son Linden was born at Mount Sinai at 29 weeks, 5 years ago. About 60 people attended the event; NICU parents, siblings and family members as well as a number of members of the NICU Parent Advisory Committee and their children. A delicious turkey dinner and a variey of desserts were served. NICU families were reassured and given hope by parents of NICU graduates who had been in similar circumstances to their own. Current NICU babies received gifts from the Linden Fund. As well, Joyce Russell, the industrious grandmother of Sianna Lee Russell born at 24 weeks 3 years ago, knitted hats and made outfits and blankets for all the NICU babies! Santa Claus made a special appearance and provided entertainment and excitement for all in attendance. The NICU families were tremendously grateful to the generosity, kindness and understanding shown to them at this stressful time in their lives, having a baby in the NICU over the holiday season. PATIENT AND FAMILY CENTERED CARE CONFERENCE Parent advisors, Kristen Christie and Lauren Pezzullo were invited to present at a seminar on Patient and Family Centered Care in Calgary, October 2008. The following is Kristen s account of the experience. Lauren and I had an incredible four days! They were tiring, uplifting, exhausting and exhilarating, but worth every single second and more. We had working breakfasts that began at 7:00am, working lunches and our days ended at 5:30pm. It was like four years of university crammed into four days. Again, worth every single second and more. We carried a binder to each grand ballroom, breakout and small group session that weighed about as much as a 1 year old. It was enough to make your back ache. Still, worth it. This binder contained every aspect of Patient and Family Centered Care. You saw things from a patient s standpoint, a family s one and the staff s. We even had the opportunity to look at things from a hospital s business angle. This binder is the bible for Patient and Family Centered Care. We were honoured to be asked to attend this conference and represent Mount Sinai s NICU. We were even more thrilled to find out that we would be presenting. Okay, and nervous too! The Patient and Family Centered Care Conference is attended by doctors, nurses and family members from around the world. Lauren presented on the topic Newborn Intensive Care Profiles of Change: Practical Strategies and Lessons Learned. She spoke about how she became such an active volunteer within our hospital s NICU and the value of parental involvement. She spoke to the new state of the art unit that our hospital is currently building. Discussed were the challenges in developing a new unit, from a structural standpoint, staff concerns as well as how it would affect patients. She brought attention to Mount Sinai s Wall of Hope, the NICU Graduates Picnic and the education of staff. With the number of years that Lauren has been an active volunteer and the amount of committees she has participated in she was the perfect choice to dialogue on this topic. I spoke to the development and implementation of Patient and Family Peer Led Support programs. Wow, what a demand there was for information on this subject. There were questions being asked from the floor before the presentation was even finished. There are so many hospitals out there that are so eager to have the kind of family involvement that we do. We heard from doctors, nurses, families, social workers all with the same question How do we create what you already have? I gave them all the logistics, the stepping stones if you will. We talked about how to find volunteers, how to keep them, ways to support them, new ways to appreciate them. Still, I had to go back to a common theme that was reiterated time and again throughout the conference. It was strong leadership and support from staff. I was fortunate enough to have both Frida Ardal and Diane Savage at my presentation and was able to point them out to the attendees. I tried to drill the point home that it was people like them and Marianne Bracht who put 5
such a value and worth on our time, knowledge, babies, input, thoughts and feelings that has made our programs successful ones. Bev Johnson who is at the helm of the Patient and Family Centered Care Institute could not stress enough that without staff members at different levels in the hospital who had a belief and dedication to Patient and Family Centered Care then it just wasn t going to work. It was wonderful to be in a position where you couldn t say enough good things about the incredible parents that are part of Mount Sinai as well as the staff. This conference afforded us the opportunity to see so many of the exceptional things that Mount Sinai has already implemented that is conducive with the Patient and Family Centered Care philosophy. We have seen first hand the incredible care that our babies receive. If only everyone could see how many steps the very hospital where our children started out their lives has taken towards making our entire hospital experience a better one, a more supportive one. During various presentations Mount Sinai was referred to as a leader. Amazing! This experience showed us that even though we have so many positive things in place already that there is even more room for us to grow. There are even more things that we can do to make our NICU even better for those who come after us. We learned that Patient and Family Centered Care is a combined effort from everyone. Mount Sinai is willing to join in that effort with us. We now need to commit even more to that effort as well. Lauren and I came home from this conference with a bunch of new ideas and more committed than ever. Together, let s all see what we can get done. PARENT AS ADVISORS TO THE NICU/LEVEL 2: A DIALOGUE WITH THE NICU ADMINISTRATION This annual event is an opportunity for both staff and the parent advisory to offer an update on past year and for all parents and staff to plan future initiatives. Dr. Karel O Brien, acting Paediatrician in Chief and May Antonio, acting Nursing Unit Administrator represented NICU administration at the meeting. Report from the advisory committee identified that, in the past year parents have been involved in many aspects of NICU care; education initiatives, participation in NICU committees, Parent buddy program, newsletter and annual graduates picnic. Dr. Karel O Brien indicated there will be a new medical chief of the NICU, Dr. Shoo Lee, who will also be head of the neonatology division at the University of Toronto. She also gave an update on the capital redevelopment process stating that the design stage is finished. The next step in the upcoming 3-6 months is working on policy and procedures that work for both parents and families. Input from families is very important and will be arranged through committees and focus groups. If you are interested and would like more information please contact Frida 416.586.4800 x5213. Hospital accreditation will occur in February 2009. Parents may be asked to become involved in the process. Future directions and initiatives for staff and parents in the coming year will include working on the paid parent position. Other initiatives include ongoing education sessions for staff, specifically around giving bad news and improving the parental communication process regarding the transfer of infants to other hospitals. If you have further ideas or wish to be more involved please contact either Frida or Marianne. GOALS In collaboration with the NICU Administration, we developed three major goals for 2009... 1. Securing a paid parent position for NICU/ Level 2 to ensure continuity of programming and for accountability 2. Capital Redevelopment as it relates to the new NICU/Level 2 3. Continued staff education with a focus on sharing bad news with families and transfering infants to other hospitals. 6