A TYPICAL DAY IN THE NICU - Josh Cares

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FALL 2017beattheA TYPICAL DAY IN THE NICUFrom l”Moments4-7Our CeritfiedChild evy”11KATELYN ZILLES - FORMER CCLSJosh Cares Certified Child Life Specialists(CCLS) arrive in the Neonatal Intensive CareUnit (NICU) at 8 a.m. each day, and our firstgoal is to check in with all of the bedsidenurses who care for our patients.We speak with the nurses about how thepatient’s night went, how they are doingthis morning, what their plans are for theday, if there are any tests or proceduresand when a good time to see the patientmight be. The highest priorities for us ina day are any experiences we assess asinvasive. We look to provide support forthese type of procedures at least 90% ofthe time. Our active support during theseprocedures is to facilitate increased positivecoping and limits the toxic stress our infantsare exposed to. Often times our ability tosupport circumvents the need for sedationmedications for minor procedures.After assessing procedural needs,we organize our day to facilitatedevelopmentally appropriate normalizationexperiences. For our smallest neonates,patients who cannot tolerate muchstimulation, this would be simply holdingthem by their bedside. We are cleared withthe medical team to hold patients that areintubated as well as infants with criticaltubes. For older babies this includes moreinteractive play - reading board books,providing normalization, socialization andengagement through music and toys focusing overall on a positive experience.COVER PHOTO: LUCAS - PATIENT SPOTLIGHTBecause we are only based in the NICU, ourpatients are each seen by us on a daily basisfor approximately 1-2 hours. This allows forcontinuity of care and bonding for thesepatients. In addition to the patient needsduring the day we also prioritize interactingwith the other family members such asemailing secure updates to caregivers,making sibling support tools (ex: bearswith medical devices the sibling has) andspending time with caregivers and siblingswhen they are present to assess their copingand provide a source of safe psycho-socialsupport.Finally, we celebrate important milestonesin the NICU which help take away theharshness of the medical environment.Some of my personal favorites arecoordinating a trip to our NICU playroom,first birthday parties and siblings meetingfor the first time. The members of the JoshCares team in the NICU are proud of howwe make sure every day that our smallestpatients are never alone.

A DOZEN YEARS AND GOING STRONGPATIENT SPOTLIGHT - LITTLE LUCASA Dozen Years and Still Going StrongLucas was admitted about a month after hewas born due to prematurity, sleep apnea andbradycardia, which is an abnormally slow heartreaction. Lucas’s airway was evaluated, andthe medical team and his parents decided togive Lucas a tracheostomy with ventilation inorder for Lucas to breathe properly. His newdiagnosis and principal problem becamesubglottic stenosis, a frightening-soundingword that meant Lucas’ tiny windpipe was toonarrow and he needed the trach to help keepit open. In late October, the tracheostomy wasplaced.MATT HUGHES - EXECUTIVE DIRECTORWhen Mark and Ann Helfrich joined Danand Lynn Pierce to form Josh Cares back in2005 as a way to memorialize their son JoshHelfrich’s life, little did they know the impactthat decision would have on over 1,000families over the next dozen years.In 2017, the Josh Cares achieved severalsignificant milestones: 1,000 Patients Served Over 2 million Donated to CincinnatiChildren’s to Support the Child LifeSpecialists Program Over 12,000 Hours of Care Provided toPatients in One Calendar YearWhat all those numbers add up to is a lotof families who have interacted with ourCertified Child Life Specialists(CCLS) in a positive way to helpthem through a very toughtime in their lives.This edition of the newsletter will show youwhat life is like in the neonatal intensive careunit. You’ll also hear one of the patients wehave helped—Lucas’s story. We have alsoincluded summaries of all our events thisyear and wrapped it all in a fresh new lookthanks to the team at LPK.Finally, in this season of giving I hope youwill take the opportunity to visit us onlineat joshcares.org and make a gift to supportthe wonderful work our CCLS are doing toimprove the lives of the boys and girls wehelp, and to let the families that surroundthem know all of us in Cincinnati supportsour mission of assuring no child is everalone while receiving care at CincinnatiChildren’s Josh Cares is “Always There.”NEW LOGO - NEW LOOKYou might not have noticed, but this newsletter looks a little bitdifferent than it did in the past. Thanks to the “Media Blitz” teamat LPK (Global Brand Design Agency) Josh Cares got a completemakeover.The results of “The Blitz” produced not only a new overall look, butalso a new color scheme, new logo and a new Direction about howthe organization presents itself to the public. Thank you so much toSarah Sideranko Jones and her team at LPK.LAUREN M. KOEHLER, CCLSWhile still in the NICU, Lucas and his parents,Lexie and Luis received help, support andpresence from unit child life specialists,providing photos, documenting milestonessuch as first bottle, and support during andafter procedures. Lexie was able to be presentduring most of Lucas’s NICU admission, butbecame very appreciative and open to JoshCares child life services; situations change,and Lexie and Luis needed extra help and sodid Lucas.Lucas was referred to us because Luis andLexie were young, Lucas was their first childand the family needed social support. Theyvisited as often as they could, but the JoshCares team began to see him every day topromote normalization, socialization, growthand development—the core values of childlife. This was accomplished by holding Lucas,reading to him, exploring toys, and supportinghim emotionally for medical procedures. Lucasgrew and grew in the NICU, and was soontransferred to the Transitional Care Center(TCC) in early December 2016; under typicalcircumstances, Lucas and his family wouldhave received a whole new team of childlife specialists—new faces in an unfamiliarenvironment. Not so with Josh Cares, since wefollow our patients everywhere they may go:every day, at least one member of our teamwould see him, play with him, and interact withhim. We knew this child, and this child knewus.Often, when I would walk by his room, hissmile would invite me to come and spend timewith him. I would whip out my camera andhe would smile and lookdirectly into the lens, as ifhe was the Gerber baby.As Lucas grew older andstronger on TCC, he wasable to play with us on afloor mat and really get toexplore new toys, stretchand do tummy time, just likea typical baby. He loved his cribgym, both in the crib and on the mat.Other times, I would hold him in my lap andwe would read storybooks; he would foldhis little hands in his lap and truly listenand look at the pages with the most serenesmile on his face.We also began to see a reappearance ofLexie and Luis. By this time, Lucas had beenon the TCC for about five months, and Lexieand Luis were excited to get Lucas home. Theywere finally able to hear the phrase, “dischargeplanning,” but still had an uphill struggle tofind the nursing help they would require onceat home. The Josh Cares team as well as theTCC staff felt such empathy for this little family,who just wanted to have their baby at home.On Wednesday, July 25, 2017, I came into thechild life staff office, and Amy, my fellow JoshCares child life specialist, exclaimed excitedly,“Lucas is going home today!” The smile thatlit up my face was unlike any other. Things justfell into place.Amy and I gathered our discharge gift, the“Congratulations, Lucas!” banner I had made,along with a balloon and made for the TCCstraightaway. We found Lexie and Luis alreadywith Lucas, Lexie holding the now 11-monthold Lucas in her lap; both parents lookedbeyond happy, pleased, and proud. Lucaslooked sleepy, but still managed to look upand smile at us. We congratulated them andshared their joy in taking Lucas home. Theyexpressed their gratitude for our support andcare over the past ten months; it was a true joyto spend time with their child, and we thankedthem for allowing us to see him, too. I can onlyimagine what a celebration little Lucas’s firstbirthday party will be.

INVESTMENT WITH A PLEDGESPRING AFFAIROver the last 13 years Josh Cares hasprovided money to Cincinnati Children’s tosupport the Child Life Specialist program.In 2017, those dollars added togetherhelped the organization cross the threshold of2 million invested in the hospital, and moreimportantly in our mission that no childshould ever be alone while receiving care atCincinnati Children’s.Everyone loves a party, and boy was thisyear’s iteration of Josh Cares’ annualSpring Affair, a soirée to remember. Heldon Saturday, April 29 at the 21C MuseumHotel, this year’s event was themed “Care toParty—A Party for Josh Cares. ““In order for us to support the hospitalwith those dollars we had to do a lot offundraising ourselves,” said Josh CaresExecutive Director Matt Hughes. “Behind the2 million are thousands of donors who madegifts as small as one dollar up to gifts in thetens of thousands.”“We are blessed to have individuals,companies and foundations that believe inour mission and have made the decision toshare some of their financial bounty with us.At a ceremony in late October, CincinnatiChildren’s recognized Josh Cares for the2 million achievement. Hospital BoardPresident Jane Portman presented JoshCares founders Dan and Lynn Pierce andAnn Helfrich (Josh’s Mom) with plaquesat a ceremony attended by friends andsupporters of Josh Cares.Josh Cares Board President Pete McConneythanked the donors in the room forrepresenting thousands of others notin attendance for making this milestonepossible. Pete also thanked the seven currentJosh Cares Certified Child Life Specialistsfor the work they do every day to make surepatients are cared for in a loving way.Matt ended the ceremony by letting thehospital know that while it is always niceto look backward and celebrate successesand achievements, the Board of Directorsrealizes the other eye must be trained onthe future. With that in mind, he announcedthat Josh Cares would be taking on a new1.2 million pledge to support the Josh CaresCertified Child Life Specialist program overthe next three years.L to R: Matt Hughes, Pete McConney,Ann Helfrich, Lynn and Dan Pierceand Jane Portman celebrating JoshCares reaching 2 Million in donationsto the hospital.The Marsh McClennan Agency served asthe presenting sponsor of the Spring Affairthis year with major support also comingfrom PLK and its employees, Premier Mail& Fulfillment, Fifth Third Bank, ColletteMasonry and the JK Meurer Corp. Roundingout the team helping to make the eventa financial success were: Wendy & JimBarney, Carolyn & Mike Collette, Ann & MarkHelfrich, The Joshua Helfrich Foundation,Joseph & Marti Otto, Lynn & Dan Pierce andRobert VogtAs always all proceeds support the annualmission of the organization—assuring thatno hospitalized Child is ever alone. In its 12seasons of supporting Josh Cares the eventwhich started as “Fire and Ice,” and nowknown as the Spring Affair has helped toraise over 1 million.Money is currently directed each year tosupport a special group of employees whoserve as Certified Child Life Specialist atCincinnati Children’s. Last year Josh Caressupported six employees who providedover 14,000 hours of work at the hospital– holding a hand, rocking a child to sleep,playing games, coaxing a smile and helpingeach and every boy and girl to get through adifficult time in their lives.The ability to help the Josh Cares boysand girls through the hiring of the ChildLife Specialists is only possible becauseof the generosity of not only the sponsorslisted above but over 75 couples whopurchased tickets to attend the event. Toall who supported the event, thank you forhaving the faith in Josh Cares to transformyour financial blessings into medicine,books, toys, blankets and professionals alldedicated to one mission.A great party takes time and money to bepulled off successfully. As in past years,two of Josh Cares founders, Lynn and DanPierce, have provided the underwriting forthis event, once again assuring in 2017 that100% of every dollar donated to this eventgoes directly towards the care of the JoshCares patients. Thank you to Dan and Lynnfor your unwavering support and dedicationto the organization.Ashley Keating andLeigh Anne Meurerdancing at theSpring Affair.Lynn also continued her leadership ofthe event planning committee by pullingtogether a great group of volunteersincluding Wendy Barney, Tracy DiGennaro,Karen Grimes, Sheryl McConney, MoniqueSewell and Leigh Anne Meurer. From theinvitations, to the decorations, food andentertainment, thank you ladies for a jobwell done. The fruits of your labors areabundant and we appreciate your talentsspent prior to the event to make “Care toParty” a smashing success.Mary Cassidy, Buffieand Eppa Rixley andSpring Affair EventChair Lynn Pierceenjoy conversation.

FOOD TRUCKIN’ IN THE RAIN!2017 JOSH CARES GOLF TOURNAMENTMother Nature did not provide the optimalconditions for the 5th Annual Josh CaresFood Truckin’ event, but for those who wereable to attend the event at Fountain Squarein downtown Cincinnati, the sun came outlate and our wonderful food truck partnersserved up another serving of yummy foodfor everyone to enjoy.In a game where the lowest score is usuallyreserved for the winner, it was a highnumber to celebrate at the 7th Annual JoshCares Golf Tournament. Over 52,000 wasraised at the tournament which was held forthe first time at the Heritage Golf Club inMason, Ohio.There were 15 trucks at this year’s event,including four trucks participating in FoodTruckin’ for the first time. Bob and Mariannefrom Warm 98’s morning show returnedto host the event and along with staff from3CDC provided some great interviewspreviewing what guests could eat forlunch.Cincinnati Mayor John Cranleyalso participated in theevent by hand deliveringa proclamation naming itJosh Cares Food Truckin’Day in the city. Alwaysthe politician, he wouldnot say which was hisfavorite food truck. Hedid not want to swaythe voting for the 2017Golden Spatula competition honoring thebest entree and best dessert of the day.Handling the judging for the event werethe aforementioned Bob and Marianne,Nelson Castillo, managing partner at PrimeCincinnati and Matt Hughes, the executivedirector of Josh Cares. While there was novoter tampering on stage, the sin of gluttonywas front and center and the four judgessampled dishes from all the food trucks. Inthe end, the Golden Spatula for the entreewent to Just Jerks and the Golden Spatulafor dessert went to Sugar Snap.The annual Food Truckin’ event is afundraising project put on by the Josh CaresJunior Board. There are almost 20 youngprofessionals on the Board, and they workedon marketing for the event, handling all thelogistics including rounding up all the foodtrucks and selling sponsorships and ticketsto the guests of the event. Joining the JuniorBoard were a team of over 40 volunteerswho worked the day of the event to helpraise money for Josh Cares. Thank you somuch to everyone who made the event aspecial day for Josh Cares.Cincinnati MayorJohn Cranley presentsJosh Cares ExecutiveDirector Matt Hugheswith proclamationdeclaring it “Josh CaresFood Truckin’ Day” inCincinnati80 Golfers participated in the event whichwas underwritten by a generous grantfrom Systems Evolution Inc (SEI). Othersponsors include Joe Otto, Premiere Mail& Fulfillment, Marsh McLennan Agency,the Marvin Lewis Community Fund, PrimeCincinnati and 84.51.Prizes were awarded for the longest drive,longest putt, closest to the pin, as well as tothe first place and second place teams.Josh Cares would like to thank theTournament Committee comprised of MattWerner, Don Korengel, Greg Schweppe,Pete McConney and Hans Zimmer. Inaddition, two special ladies once again puttogether an awesome Yeti Coolerof Adult Beverages and soldchocolate bars chances towin it. Thanks to MariaKorengel and MeredithBlum for raising over 5,000!Thank you also to over30 hole sponsors and18 people who donatedauction items all of whichmade our seventh Tournament aday to celebrate.Team Members fromSEI at the Josh CaresGolf OpenSugar SnapBest DessertTeam Members from SEI at theJosh Cares Golf OpenJust JerksBest EntreeThis year’s Chocolate YETIRaffle raised over 5,000!

OUR CERTIFIED CHILD LIFE SPECIALIST TEAMWelcome to our newest Josh Cares team members! We have evolved over the pastyear with numerous departures due to people moving or choosing to stay home withtheir young children. We have been blessed with many talented and devoted teammembers over the years and are very lucky to have the wonderful and passionatecurrent team members described below.AMY MCGRORY (MA, CCLS)Joined our team in February, 2010Amy has been married to husband,Sean, for 29 years and they have threechildren, Madalen, Michael and Colleen.Her daughter, Madalen, is engaged to bemarried to Jeremiah in May of 2018. Amyand Sean have one cat, Ginger and one dog,Sophie.Amy has been with Josh Cares since2010 and began her career asa Child Life Specialist afterspending many years at homewhen her children weregrowing up. Prior to that,she taught high schoolEnglish.Amy has been passionateabout the field of Child lifeand Josh Cares since herdays as a CCHMC volunteer.She especially loves servingthis vulnerable population ofchildren and families as the needfor psychosocial support can be quitesignificant.There are so many aspects of this job thatAmy loves, but one favorite is working withfacility dog, Chevy. Amy is a secondaryhandler for this gentle Golden Retrieverand hosts a weekly preschool story timeon Seacrest Studio with Chevy called“Dog Tales.” Amy is “thrilled to be able toprovide therapeutic visits with Chevy and,through Seacrest, impact many patients andfamilies—Josh Cares patients and others-who are too ill to come out of their rooms orare in isolation.”LAUREN KOEHLER (BS, CCLS)Joined our team in March, 2016Lauren has been married to husbandSteve, since June 2013, and have three(yes, three ) cats named after SherlockHolmes’ characters:Mrs. Hudson, Irene,and—of course—Sherlock.She loves torun, and hasbeen a runnersince 2008.She ran her firsthalf-marathonin November2016 for the HonorFlight of Northern Kentucky. In 2019 whenthe Star Wars portion of Walt Disney Worldopens, Lauren plans to visit and then runThe Avengers Half-Marathon. She describesher husband and herself as “huge nerds.”They regularly attend in- and out-of-stateconventions, including Cincinnati ComicExpo, ColossalCon in Sandusky, OH andComic Con in Louisville, KY.Lauren earned a Bachelor of Science fromEKU, and became a Certified Child LifeSpecialist in 2015. She was a Child LifeAssistant at CCHMC in CBDI since 2013, anda Child Life Assistant at Shriners Hospital,Cincinnati in 2013. Prior to that, Lauren wasan Infant Preschool Teacher at The GoddardSchool, Ft. Mitchell, KY.Lauren’s favorite part of being a Josh Careschild life specialist is the unique bond wedevelop with our children on various unitsthroughout the hospital. “Even the youngestof our patients light up when one of usenters his or her room, as if they have beenwaiting their whole day to see one of us.That feeling truly warms my heart.”BRIDGET NESBITT (BS, CCLS)Joined our team in April, 2017Bridget spent the early part of her lifemoving as her parents served in the Military.She most recently lived in WI, where herparents, brother, sister, brother-in-law, andsweet little nephew currently live. Bridgetloves to travel and has a personal goal tosee all the places her family comes from.Bridget enjoys the arts and loves to sing andhopes to find some opportunities in the area.Prior to Josh Cares, Bridget spent manyyears working as a Nanny, creativelybringing learning opportunities, adventures,and joy to the children she served. Shespent 7 years prior to Child Life workingat a Behavior Health hospital with thechildren and adolescents in their Residentialprogram. Here, she listened, engagedthe kids in normalization, and providedemotional support as they underwenttreatment.Bridget’s first position as a Child LifeSpecialist was also with hospitalizedchildren with Behavioral Healthchallenges; supportingthem throughprocedures, spendingtime with them whenthey were upset, andengaging them inplay.Bridget transferredto the Josh Caresteam in April 2017.Her favorite part thusfar is the team effort andnurturing component theteam gives in addition to the traditionalclinical role. What she loves most are theopportunities to see these precious littlesouls grow and overcome their challenges.“The smiles, belly laughs, and pure joy ontheir faces as they play and get the chanceto experience what a child (hospitalized ornot) should.”BARI BATES (MA, CLS)Joined our team in May, 2017Bari is a recent transplant to Ohio fromChicago, by way of Missouri, Texas andWisconsin. She has moved around a lot butis looking forward to making Cincinnati feellike home. When not at work, Bari likes torun, cook, and read any book she can gether hands on.Bari earned her MA inHuman Developmentand Family Sciencein 2017 and herBachelor ofJournalism fromthe University ofMissouri in 2013.She is the newestmember of the JoshCares team!Bari’s favorite part ofthe job is being able to getto know patients through the course oftheir hospitalization—silly inside jokesare her favorite! She loves that the teamgets to spend a substantial amountof time working with patientstoward normalization in terms ofdevelopmental goals. “I get to seehow playtime can work magic inthe hospital!”

JOSH CARES NICU TEAMOur neonatal Certified Child Life Specialist team takes care of our smallestpatients every day. The featured article on page 1 demonstrates what animpact they have in making these babies feel valued and loved as they gothrough treatment at Cincinnati Children’s.MELINDA “MINDY” ROUX (BA, CCLS)Joined our team in October, 2011Mindy is married to husband Alex andthey have a baby boy on the way, due inNovember! They also have 2 cats, 43 beehives and many farm animals including cowsand chickens.Mindy enjoys running,spending time outdoors,relaxing, spending time withfamily and friends, especiallyif it’s anything Ohio Staterelated!Mindy loves the genuine concernand care for this population ofchildren. Her favorite part about thejob is “how well we get to know the patientsand how we advocate for them.”MOLLY EICHE (BA, CCLS)Joined our team in March, 2017Molly has been working in the Child Lifefield since 1998 and has had the privilegeto work with many different populationsand specialty areas within the hospitalsetting. Most recently, she worked forNorton Healthcare in Louisville, KY andwas a child life specialist there for 8years. Molly provided support in theEmergency Department, Surgery,inpatient unit, NICU and other areasthroughout the hospital. Mollyrecently moved to Oxford, Ohio withher husband and three children Luke 15,Lilly 12, and Lola 8. Molly is a vegetarian,loves animals, nature, laughing, beingcreative and eating sweets!Molly absolutely loves working as a NICUJosh Cares Child Life Specialist. “It is anhonor to be a part of their tiny lives andhelp nurture and support them along theirjourney of healing. From the first timethey smile, to taking their first bottle, eachmilestone is a celebration and they willforever hold a special place in my heart.”EMILY SMITH (MA, CCLS)Joined our team in April, 2017Emily comes from a small town in NW Ohioand have lived in Cincinnati for 4.5 yearsnow. She says that her Australian shepherdmix, Willy, is her child. Emily enjoys running,hiking, cycling, crafting, reading, andexploring new coffee shops throughout thecity. Prior to joining Josh Cares, Emily workedfor 4 years as a CCLS in the EmergencyDepartment.Emily recently spearheadedand is continuing todevelop a hospitalbased summer “camp”that will take placeAugust 22nd-24th.She explains, “We willbe taking activities thatkids would be able todo at a regular camp andadapting them to the hospital setting. Forinstance, there will be inflatable archeryand fishing for pretend fish. We will haveimitation campsites set up so that kids cantake part in tent chats, singing songs aroundthe “campfire” and so much more. The ideabehind this project is to add a therapeuticvalue to hospitalization and normalize thehospital environment. Kids don’t come to thehospital expecting to be able to experiencesummer camp- so we are creating someunexpected fun experiences for them.”Emily enjoys getting to know our patientsand families really well over long periodsof time. Her favorite part about the job is“connecting with patients and families andbeing a supportive presence during bigmoments, both happy and sad.”UNCONDITIONAL LOVE - CHEVY’S HEALING TOUCHWhile our Certified Child Life Specialist take great care of our patients, there’s one memberof their team who makes visits with patients extra special—and cuddly. In 2017 CincinnatiChildren’s welcomed Chevy to our team. Chevy works 40 hours a week, alongside his twohandlers Katie Sullivan and Amy McGrory.His selfless and lovable demeanor brings a smile to each child’s face. Research has shownthat dog assisted therapy can lower stress and anxiety levels, affect blood pressure, increasepatient mobility and provide an alternative focus from pain. And Chevy does just that. “Weare happy to be able to have Chevy working as part of the Josh Cares program as part ofhis overall responsibilities ,” says Amy. “On a daily basis, he visits Josh Cares patients at theirbedside, participates in play sessions, calms patients during procedures, motivates kids toget out of bed after surgery, offers a listening ear and makes the hospital environment more‘normal’.” Chevy also hosts a weekly television show called DogTales in the Ryan Seacrest Studio. He is known for beinga social butterfly and rarely meets a stranger.

WORDS OF THANKS TO OUR DONORSRead about our terrific team of passionate care providers onthe Josh Cares team. We could not do the workthat we do without your generous support.Thank you so much toeveryone who helpsmake this programpossible—we’re luckythat we get to bepart of these toughmoments with ourpatients to offer muchneeded support andcare, and none ofthat would be ableto happen withoutgenerous supporters.The services we provide make a huge impact on thefamilies we meet. It’s great to see the look of reliefon their faces when we introduce our services. In thatmoment, they know that someone will be providingtheir child TLC when they cannot be at their side.Thank you, thank you, and thankyou for your continued support forchildren who face hospitalizationalone. Serving the children we serveis an honor and privilege, and itwould not be possible without you.

“Congratulations, Lucas!” banner I had made, along with a balloon and made for the TCC straightaway. We found Lexie and Luis already with Lucas, Lexie holding the now 11-month-old Lucas in her lap; both parents looked beyond happy, pleased, and proud. Lucas looked sleepy, but still mana

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