OurJourneyasParents

ShirleyHuang,MDandJamesYoo,MDOleyConferenceJune27,2012

LessonsThatWeHaveLearnedAlongtheWay

Thingsdonotalwayshappenasanyoneexpects.

Feelcomfortablewiththedecisionsbeingmade.

Trustyourinstincts.Youknowyourchildinawaythatnooneelsedoes.

Parenthood

Lifechanges

Whatwillmychildbelike?Hopesanddreams…

Hap

pine

ss

Time

AChildwithSpecialNeedsWill she be smart? Funny? Good at sports? Have lots of friends? Love playing with her brother?

How big will her scar be? Will she need a stoma?

Will she eat? Will she grow?

Is she going to live?Does she know howmuch we love her?

HowItAllBegan

Bornat34weekswithIUGR,BW1.39kg/3lbs

DOL1–diagnosedwithdistalilealatresia

DOL4–resectionandre‐anastomosis

2monthsinNICU

Recovery?

1weeklater,readmittedforacholangiogramtoevaluateherjaundice

Inandoutofhospitalforfailuretothriveandmalabsorption

CanWeGetOurLivesBack? At3½monthsold–ORforbroviac,G‐tube,ileostomy

1daylater,takebackforischemicileostomyandaseizure‐majorityofbowelnecroticrequiringresectionandjejunostomy

We’reinTrouble

Severeliverdisease

Hyperbilirubinemia/Jaundice

Failuretothrive–2.8kg/6lbs

Shortbowelsyndrome TPNdependent

GetaSecondOpinion Medical team’s option: consider transplant

Take our daughter home knowing she wouldprobably not make it to her first birthday

Try to get her on Omegaven In LA

At Boston Children’s Hospital

Looking for miracles

HaveNoRegrets

TransferredtoBostonChildren’sHospital

StartedonOmegaven

Spentnext½yearinBoston

Highlights Intestinewasre‐connected

Overnextfewmonths,finallyabletocycleTPNtorunover12hours,not24hours

Walking

Hope

BumpsAlongtheWay‐2011 GJtube,anotherprokineticmedication

Inabilitytoadvanceenteralfeeds

Decreasingalbumin‐proteinlosingenteropathy

LackofprogressingettingoffTPN

LifeistheJourney Acceptance

StillonfullTPNandOmegaven7daysaweek

Continuingtoadvanceenteralfeeds

Overall,she’sdoingwell.She’shappywithneverendingenergyandnonstoptalking.

AChildwithSpecialNeedsWill she be smart? Funny? Good at sports? Have lots of friends? Love playing with her brother?

How big will her scar be? Will she need a stoma?

Will she eat? Will she grow?

Is she going to live?Does she know howmuch we love her?

Happy4thBirthday

SpecialThankYou Ourextendedfamily–thegrandparents

OmegavenTeamatBoston(Dr.MarkPuderandKathyGura)

Dr.RobVenickandLaurieReyenatUCLA

Homehealthcarecompany,ThriveRx