Preemie News Winter 2009 - Mount Sinai Hospital

MOUNT SINAI HOSPITALPERINATAL PARENTS ASSOCIATIONVOLUME 4 ISSUE 1WINTER 2009Mount Sinai recognizes parent volunteersRead more on page 2Happy New Year!MARK YOUR CALENDARNICU Graduates Picnic 2009We hope you have all enjoyed the holiday season. Asyou can see from the articles in the newsletter this hasbeen a busy year for parent advisors.We are delighted to inform you that the NICUGraduates Picnic will be Sunday, June 14, 2009 in HighPark from 12:00 noon to 3p.m. If you are interested in donatingor volunteering to the picnic please contact Marianne atmbracht@mtsinai.on.ca or 416.586.4800 ext 5338.Our Parent Advisory meets one Wednesday evening amonth from 6:30p.m. to 8:30p.m. We welcome new parentsat any time. Join us...Frida and Marianne Sunday, June 14, 2009High ParkPicnic Areas 2 & 312:00 noon to 3p.m.ARE YOU INTERESTED?PARENT BUDDY TrainingSaturday, March 7, 2009If you are interested in trainingto be a parent buddy, contact Frida at416 586 4800 ext 5213or fardal@mtsinai.on.ca1

From The NICU To Starting SchoolBy Kristen ChristieThe entire night before September 4, 2008 all I kept thinkingabout was how far Emma had come. How far we all hadcome. Four years before we had been sitting in the NICU,Em was vented, we were waiting to head over to HSC for aPDA ligation, her weight had sunk to 1lb 10 ounces and wehad not one clue as to what the future would hold. Wecouldn’t even begin to imagine what the next day in hospitalwould bring, much less imagine four years into the futurewith Emma starting school. That seemed a possibility soextreme we didn’t even dare to dream it.Still, there I was, four years later getting things ready forEmma’s first day of school. As I bathed her the night beforeI cried. As I laid her outfit on her bed for the next day Icried. As I tucked her in for the last time as my little girlwho spent her days with me, I cried. I cried when my alarmwent 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 Istopped crying briefly so I could get a decent shot. Still, as Scott, Emma and I all headed over to theschool 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 sovividly remember every time I thought I might lose her. Here I was walking her to school and I feltlike I was losing again. I was losing the little part of my girl whose world revolved around me. I waslosing that to the world of junior kindergarten. Even with the loss that I felt, there was an enormoussense of pride. As I saw all the other kids coming to school that morning I wondered how many ofthem had to fight as hard as Emma to get to this point. I knew how bravely my little girl had foughtto get to the point she was now at. I watched her world fill with excitement as we got closer to herdoor. 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 towonder what subjects she would excel in and what ones she would desperately try to convince methat she had no homework in! I wondered who her best friends would be. I started to imagineeverything good that could come her way. As she headed into school that morning with her blondhair flying, her princess back pack bouncing, a quick wave to Scott and I along with “I love you” I feltgrateful. I still felt that I was losing a piece of my little girl, I was still crying, I wasstill proud but most importantly I was grateful. I was grateful to every nurse,doctor, RT, LC, social worker, chaplain, friend and family member whohelped get her this far. Even more important, than that, I was grateful toEmma. Grateful to her, for having this amazing inner resilience to justkeep going. Whatever odds are in front of her she just keeps going.Emma is spectacular. She is filled with love and hope and every goodthing for the future. She is my little 26 weeker who won’t take no foran answer, who believes that anything is possible, who loves school,and who is my miracle. She is taking her classroom and school bystorm, I’m hoping that they are ready for her!3

NICU GRADUATE, SULLIVAN,TELLS HIS STORY AT ATUESDAY PARENT GROUPEVENINGOn Tuesday, January 6, 2009 at the first NICU parentgroup gathering of the new year, 10-year old Sullivan toldhis story. He was born at 27 weeks, weighing a mere600gm. His brother Griffen was stillborn.Ironically, exactly ten years ago his parents, Maureen andAndrew, had been attending the parent group. Thefamily brought supper for NICU parents and staff. Ahuge birthday cake celebrating Sullivan’s birthday (as wellas his sister Bailey’s 6 th birthday) was enjoyed by all.Parents in attendance were inspired to meet such ahappy healthy 10-year old who faced so many challengesin the NICU. The nurses who cared for Sullivan ten yearsago commented on how rewarding it was for them tomeet Sullivan.This was the second time in the last few months that aten year old returned to the group to tell his story. Thisfall, Stephen Gray told his story and also gave hope to theparents in attendance. Ten years ago his parents, Chioand James, also attended the parent group. At that time,no supper was provided. Once Stephen was home, Chiodecided to make and deliver sandwiches to the grouponce a month because she remembered how difficult itwas to find time for supper when Stephen was in theNICU. Today, pizza dinners are provided through theongoing generous donations of families who haveattended the group.Sullivan with special nurses who were thrilled to meet him again.Here is the text of Sullivan’s speech to the ParentGroup, Tuesday, January 6, 2009My 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 arechocolate, cheese, pasta, etc…I do not like vegetables and fruits andneedles and bees and dogs (except for thosewho I know.)I can make good sandcastles, I dance well. Ihave just learned to ski.I find it difficult to write certain words thatI have not written before and to draw acomplicated picture.My dreams are to become famous and rich orbecome an author.The only things that I know about beingpremature 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 bigbracelet 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 andScience Center.Thank you very much forlistening and I would alsolike to thank the nurses,doctors and staff of Mt.Sinai that took care ofme. (Without them Iwould not be here).Sullivan and Dad4

MAKING A DIFFERENCE...Our final activity of 2008 was a wonderful HOLIDAY CELEBRATION, hosted by Lauren and Sam Pezzullowho initiated the Linden Fund to assist NICU families. Their son Linden was born at Mount Sinai at29 weeks, 5 years ago. About 60 people attended the event; NICU parents, siblings and familymembers as well as a number of members of the NICU Parent Advisory Committee and theirchildren. A delicious turkey dinner and a variey of desserts were served. NICU families werereassured and given hope by parents of NICU graduates who had been in similarcircumstances to their own.Current NICU babies received gifts from the Linden Fund. As well, Joyce Russell, theindustrious grandmother of Sianna Lee Russell born at 24 weeks 3 years ago, knittedhats and made outfits and blankets for all the NICU babies! Santa Claus made a specialappearance and provided entertainment and excitement for all in attendance.The NICU families were tremendously grateful to the generosity, kindness and understanding shownto them at this stressful time in their lives, having a baby in the NICU over the holiday season.PATIENT AND FAMILY CENTERED CARE CONFERENCEParent advisors, Kristen Christie and Lauren Pezzullo were invited to present at a seminar on Patient and Family Centered Care in Calgary, October2008. The following is Kristen’s account of the experience.Lauren and I had an incredible four days! They were tiring, uplifting, exhausting and exhilarating, butworth every single second and more. We had working breakfasts that began at 7:00am, working lunchesand our days ended at 5:30pm. It was like four years of university crammed into four days. Again, worthevery single second and more. We carried a binder to each grand ballroom, breakout and small groupsession 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’sstandpoint, a family’s one and the staff’s. We even had the opportunity to look at things from a hospital’sbusiness 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 wereeven more thrilled to find out that we would be presenting. Okay, and nervous too! The Patient andFamily Centered Care Conference is attended by doctors, nurses and family members from around theworld. Lauren presented on the topic Newborn Intensive Care – Profiles of Change: Practical Strategiesand Lessons Learned. She spoke about how she became such an active volunteer within our hospital’sNICU and the value of parental involvement. She spoke to the new state of the art unit that our hospital iscurrently 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 ofHope, the NICU Graduates Picnic and the education of staff. With the number of years that Lauren hasbeen an active volunteer and the amount of committees she has participated in she was the perfect choiceto 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 thefloor before the presentation was even finished. There are so many hospitals out there that are so eager tohave the kind of family involvement that we do. We heard from doctors, nurses, families, social workersall with the same question “How do we create what you already have?” I gave them all the logistics, thestepping stones if you will. We talked about how to find volunteers, how to keep them, ways to supportthem, new ways to appreciate them. Still, I had to go back to a common theme that was reiterated timeand again throughout the conference. It was strong leadership and support from staff. I was fortunateenough to have both Frida Ardal and Diane Savage at my presentation and was able to point them out tothe attendees. I tried to drill the point home that it was people like them and Marianne Bracht who put5

such a value and worth on our time, knowledge, babies, input, thoughts and feelings that has made ourprograms successful ones. Bev Johnson who is at the helm of the Patient and Family Centered CareInstitute could not stress enough that without staff members at different levels in the hospital who had abelief and dedication to Patient and Family Centered Care then it just wasn’t going to work. It waswonderful to be in a position where you couldn’t say enough good things about the incredible parents thatare 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 hasalready implemented that is conducive with the Patient and Family Centered Care philosophy. We haveseen first hand the incredible care that our babies receive. If only everyone could see how many steps thevery hospital where our children started out their lives has taken towards making our entire hospitalexperience a better one, a more supportive one. During various presentations Mount Sinai was referred toas a leader. Amazing!This experience showed us that even though we have so many positive things in place already that there iseven more room for us to grow. There are even more things that we can do to make our NICU evenbetter for those who come after us. We learned that Patient and Family Centered Care is a combinedeffort from everyone. Mount Sinai is willing to join in that effort with us. We now need to commit evenmore to that effort as well. Lauren and I came home from this conference with a bunch of new ideas andmore committed than ever. Together, let’s all see what we can get done.PARENT AS ADVISORS TO THE NICU/LEVEL 2: A DIALOGUE WITHTHE NICU ADMINISTRATIONThis annual event is an opportunity for both staff and the parentadvisory to offer an update on past year and for all parents and staff toplan future initiatives. Dr. Karel O’Brien, acting Paediatrician in Chiefand May Antonio, acting Nursing Unit Administrator representedNICU administration at the meeting.Report from the advisory committee identified that, in the past yearparents have been involved in many aspects of NICU care; educationinitiatives, 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 theNICU, Dr. Shoo Lee, who will also be head of the neonatology divisionat the University of Toronto. She also gave an update on the capitalredevelopment process stating that the design stage is finished. Thenext step in the upcoming 3 - 6 months is working on policy andprocedures that work for both parents and families. Input from familiesis very important and will be arranged through committees and focusgroups. If you are interested and would like more information pleasecontact Frida 416.586.4800 x5213.Hospital accreditation will occur in February 2009. Parents may beasked to become involved in the process.Future directions and initiatives for staff and parents in the comingyear will include working on the paid parent position. Other initiativesinclude ongoing education sessions for staff, specifically around “givingbad news” and improving the parental communication processregarding the transfer of infants to other hospitals. If you have furtherideas or wish to be more involved please contact either Frida or Marianne.GOALSIn collaboration with theNICU Administration, wedeveloped three majorgoals for 2009...1. Securing a paid parentposition for NICU/Level 2 to ensurecontinuity ofprogramming and foraccountability2. Capital Redevelopmentas it relates to thenew NICU/Level 23. Continued staffeducation with afocus on sharing badnews with families andtransfering infants toother hospitals.6