Wednesday, July 05, 2006

Maudlin Famiy Heart Story.

I REMEMBER THE DAY I FOUND OUT I WAS PREGNANT. IT WAS JANUARY 3RD, 2005. A BRAND NEW YEAR....A BRAND NEW LIFE. I HAD KNOWN DEEP DOWN FOR A WHILE I WAS PREGNANT. I GUESS I WAS JUST IN DENIAL; I DIDN’T WANT TO BELIEVE IT. I WAS ONLY 25 YEARS OLD AND I NEVER WAS A REAL KID PERSON. I GUESS BEING YOUNG I DIDN’T WANT TO GIVE UP MY FREEDOM AND PRIVACY. I LOVED BEING ABLE TO DO WHAT I WANTED WHEN I WANTED AND WHERE I WANTED TO. I KNEW HAVING A BABY WOULD CHANGE ALL OF THAT.

I TOOK ONE OF THOSE HOME PREGNANCY TEST AT A FRIENDS HOUSE. AS I WATCHED THOSE TWO PINK LINES SLOWLY APPEAR I BURST INTO TEARS. I FELT BAD I WAS SO UPSET, BUT I COULDN’T HELP THE WAY I FELT, I WAS SCARED. THE FIRST THING I THOUGHT WAS THIS CAN’T BE HAPPENING TO ME THIS ONLY HAPPENS TO OTHER PEOPLE. THE CAME THE SHOCK AND FEAR, I FELT LIKE I WAS ALL ALONE IN THE WORLD.

AT THE TIME I WAS LIVING WITH MY SISTER BECAUSE OF SOME PRIOR EVENTS IN MY LIFE. WHEN I TOLD HER SHE WAS GOING TO BE AN AUNT, SHE TOLD ME TO PACK MY SHIT AND MOVE TO FLORIDA. OUR FATHER LIVES IN FLORIDA. I STARED AT HER IN SHOCK AND DIDN’T REALLY KNOW WHAT TO SAY. I ALREADY FELT BAD ENOUGH WITH OUT HER BEING SO NEGATIVE.

THAT NIGHT I CALLED MY FATHER.HE SIGHED AND SAID HE WAS TRULY DISAPPOINTED IN ME. MY MOTHER PAULINE PASSED AWAY YEARS AGO AND FOR SOME REASON I KNOW SHE WOULD OF FELT THE SAME WAY. LATER I TOLD THE BABY’S FATHER. HE TOLD ME IT COULDN’T BE HIS AND LEFT TOWN TO TRY TO AVOID THE SITUATION.

AT THIS POINT I KNEW I WAS TOTALLY ALONE AND HELPLESS. I WAS BARELY MAKING IT ON MY OWN, LET ALONE ABLE TO SUPPORT A CHILD. I DIDN’T KNOW WHAT I WAS GOING TO DO. THOSE FIRST COUPLE OF WEEKS AFTER I FOUND OUT I WAS PREGNANT ALL I COULD DO WAS CRY. I ACTUALLY CONSIDERED A COUPLE OF MY OPTIONS. I SAT AND THOUGHT ABOUT IT LONG AND HARD. I COULD NEVER GIVE MY BABY UP FOR ADOPTION. I COULDN’T CARRY THIS BABY FOR NINE MONTHS TO HAND HIM/HER OVER TO SOMEONE ELSE. I WOULD ALWAYS WONDER ABOUT HIM/ HER. AS FOR ABORTION I COULD NEVER CONSIDER KILLING MY BABY.

THAT IS WHEN IT ALL BECAME REAL FOR ME. I TOLD MYSELF JENNIFER YOU HAVE TO GROW UP AND TAKE RESPONSIBILITY FOR YOUR ACTIONS. THIS WAS A WONDERFUL AND INNOCENT BABY IN SIDE OF ME. I WAS GOING TO DO THE BEST I COULD WITH THE RESOURCES I HAD. LIKE MOST MOTHER’S I WAS GOING TO LOVE THIS CHILD WHOLE HEART AND SOUL. I STARTED GETTING USED TO THE IDEA OF HAVING A BABY AS TIME WENT ON. THERE WAS SOMETHING PRECIOUS GROWING INSIDE OF ME. A BABY THAT WAS DEPENDENT ON ME FOR HIS/HER HEALTH AND SAFETY. MY BABY! MY BABY, IT STARED TO SOUND SO EXCITING WHEN I SAID IT.

I AM NOT EXACTLY SURE WHEN MY FIRST DOCTORS APPOINTMENT WAS. I KNOW IT WAS AROUND THE END OF JANUARY. I HADN’T EVEN ENCOUNTERED WITH THIS DOCTOR BEFORE. MY FRIEND BOBBI RECOMMENDED DR. PATTERSON TO ME. I REMEMBERED WALKING IN SCARED AS IF EVERYONE WAS LOOKING AT ME LIKE WHERE IS THE FATHER. I REMEMBER FILLING OUT ALL THE PAPER WORK THE RECEPTIONIST GAVE ME. I FELT BAD BECAUSE I DIDN’T KNOW MUCH ABOUT THE FATHER. ALL I KNEW WAS HE WAS AFRICAN AMERICAN AND I WAS WHITE. ANOTHER REASON MY SISTER HAD SO MANY PROBLEMS WITH THE PREGNANCY. I MADE IT THROUGH THE APPOINTMENT. I FOUND OUT I WAS TEN WEEKS (TWO AND A HALF MONTHS). I WAS DUE AUGUST 19, 2005. I BROUGHT HOME A LOT OF BROCHURES AND ADVICE.

A VISIT OR TWO LATER I HEARD MY BABY’S HEART BEAT FOR THE FIRST TIME. I JUST CRIED. IT WAS THE MOST AWESOME SOUND IN THE WORLD. HEARING THAT MADE IT ALL REAL AND I WAS REALLY OVER WHELMED WITH JOY. THE FIRST FEW MONTHS WERE UNEVENTFUL. WHEN I WAS ABOUT FIVE MONTHS PREGNANT I HAD MY FIRST ULTRASOUND. EVERYTHING WAS PERFECT. IT’S A GIRL. I WAS SO EXCITED. I WAS ALSO RELIEVED FOR A STUPID REASON I AM SURE OTHERS HAVE GONE THROUGH. I COULDN’T FIND A BOYS NAME THAT REALLY STRUCK ME. I HAD A LITTLE GIRLS NAME FROM DAY ONE SIERRA NICOLE MAUDLIN. MY DUE DATE WAS ALSO CHANGED TO AUGUST 9, 2005.

OVER THE NEXT FEW MONTHS I STARED TO FEEL HER KICK. IT WAS A GREAT FEELING. I REMEMBER SITTING THERE LOOKING AT MY STOMACH AS SHE MADE LITTLE IMPRESSIONS WITH WHATEVER BODY PART IT WAS. I ALSO HAD A FEW MINOR PROBLEMS ABOUT THAT TIME. THE DOCTOR WAS CONCERNED ABOUT FETAL MOVEMENT. I HAD A LOT OF ULTRASOUNDS AND NON STRESS TESTS. EVER TEST CAME BACK NEGATIVE FOR WHATEVER THEY WERE LOOKING FOR. I ALSO GOT PRE-ECLAMPSIA AND WENT ON BED REST THE BEGINNING OF JULY. OVER THIS PERIOD OF TIME I GOT A CAR, AN APARTMENT, AND MY SISTER BEGAN TO COME AROUND LITTLE BY LITTLE. I WAS GETTING MORE EXCITED AND MORE NERVOUS EVERYDAY. I COULDN’T WAIT TO MEET SIERRA.

I WASN’T FEELING TO WELL ON JULY 19, 2005. I WAS CRAMPING A LITTLE, ENOUGH TO SCARE ME INTO GOING TO THE HOSPITAL ABOUT 11:30P.M. THE NURSES AND DOCTORS SAID IT WAS A URINARY TRACK INFECTION. I WENT HOME. I STARTED FEELING BETTER AND WENT TO SLEEP.

ON JULY 20,2005 I GOT UP AND WENT TO THE REST ROOM. AS I LAY BACK DOWN MY WATER BROKE! I CALLED MY SISTER, AND DROVE MYSELF TO THE HOSPITAL. IT WAS CONFIRMED, I WAS NOW IN LABOR. I WAS ABOUT TWO WEEKS EARLY BUT NOT CONSIDERED PREMATURE. FROM ABOUT EIGHT A.M. TO NOON I HAD NOT DILATED ANYMORE THAN WHEN I CAME IN. FINALLY MY DOCTOR CAME IN AND GAVE THE ORDER FOR PITOCIN, TO HELP THING PROGRESS. AT THIS POINT I LOST TRACK OF TIME. I STARTED HAVING CONSISTENT CONTRACTIONS AND WAS TOLD I COULD NOT HAVE AN EPIDERMAL BECAUSE MY BLOOD PLATELET WERE LOW. THIS MEANT I MIGHT BLEED TO DEATH WITH THE EPIDERMAL.

MY SISTER AND A COUPLE FRIENDS OF THE FAMILY WERE THERE. I WAS PUT ON OXYGEN AND TOLD THEY WANTED TO DO A CESAREAN BECAUSE THEY WERE CONCERNED ABOUT THE BABY. THEY DIDN’T TELL ME WHY THOUGH. THE LAST THING I REMEMBER WAS A LOT OF PAIN AND BEING WHEELED INTO A STRANGE ROOM. MY ARMS WERE STRAPPED DOWN.THEN THERE WAS DARKNESS.

I COULD HEAR MY NAME BEING CALLED BUT I COULDN’T SEE ANYONE. I STARTED COMING OUT OF THE BLACKNESS AND MY SISTER CAME IN. SHE TOLD ME HOW BEAUTIFUL SIERRA WAS, AND THAT SHE LOOKED JUST LIKE ME. SHE LEFT FOR A LITTLE WHILE. I WAS STILL IN AND OUT OF IT, BUT I REMEMBER SEEING THE NURSES WHISPERING. I THOUGHT, I WONDER IF SOMETHING IS WRONG WITH SIERRA. THEN I PASSED BACK OUT. I CAME TO ONCE AGAIN AND THEY WHEELED ME BACK TO MY ROOM. THE NURSES TOLD ME IT WOULD BE AN HOUR AND A HALF BEFORE I COULD SEE MY DAUGHTER. NOT ONCE DID ANYONE EVER MENTION SOMETHING WAS WRONG WITH HER. THAT STILL BOTHERS ME TO THIS DAY.

THEN HALF AN HOUR BEFORE I COULD SEE SIERRA A STRANGE MAN WALKED IN MY ROOM. HE TELLS ME HE IS FROM DAYTON CHILDREN’S HOSPITAL; HE WANTED ME TO SIGN PAPERS SO THEY COULD TRANSPORT SIERRA. I JUST LOOKED AT THE MAN IN SHOCK. WHAT WAS HE TALKING ABOUT; I HAD NOT EVEN GOT THE CHANCE TO SEE MY BABY. THEN COMES A DOCTOR I’VE NEVER SEEN YELLING FOR TO WAIT, BECAUSE HE HADN’T TALKED TO ME YET.THE WHOLE TIME I LAY THERE THINKING EXPLAIN WHAT? THAT’S WHEN I REALIZED I LOVED SIERRA WITH ALL MY HEART, AND THAT IT WAS ABOUT TO BE BROKEN. HE PROCEEDS TO TELL ME WHEN THEY WERE EXAMINING HER THEY FOUND THAT HER HEART WAS SHAPED DIFFERENTLY THAN WHAT IT WAS SUPPOSED TO BE. IT ALSO SOUNDED A LOT DIFFERENT THAN WHAT IT SHOULD. SHE WAS A LITTLE BLUE BECAUSE HER OXYGEN LEVELS WERE LOW. MY HEART FELT LIKE IT WAS IN MY STOMACH AND I BURST INTO TEARS. THIS IS THE WORST THING ANY MOTHER COULD HEAR!

MY SISTER RETURNED A FEW MINUTES LATER. I TRIED TO EXPLAIN EVERYTHING TO HER, BUT I COULDN’T. I WAS STILL IN SHOCK. I WAS CRYING AND COULD NOT THINK STRAIGHT AT ALL. MY SISTER WENT TO GET THE DOCTOR SO HE COULD EXPLAIN IT TO HER SHE WAS CONCERNED. WHEN THE DOCTOR CAME BACK IN, HE WAS REALLY RUDE. HE EXCLAIMED, I WAS JUST IN HERE FIVE MINUTES AGO AND EXPLAINED EVERYTHING TO YOU. WEREN’T YOU LISTENING TO ME AT ALL? I COULDN’T BELIEVE HE WAS TALKING TO ME LIKE THAT, AFTER WHAT HE JUST TOLD ME ABOUT MY BABY. HOW WAS I SUPPOSED TO BE? WHAT DID HE THINK I SHOULD FEEL? HOW SHOULD I RESPOND TO ALL OF THIS? I WAS MAD AND YET I DIDN’T CARE ABOUT ANYTHING BUT MY LITTLE ANGEL.

THEY BROUGHT HER TO SEE ME FOR THE FIRST TIME. SHE WAS IN AN INCUBATOR THAT THEY WERE TRANSPORTING HER IN. I COULDN’T HOLD HER. SHE WRAPPED HER LITTLE FINGERS AROUND MINE. I CRIED AND PRAYED SHE WOULD BE OKAY. SHE WAS SO GORGEOUS. SHE HAD LONG ADORABLE LITTLE CURLS ALL OVER HER HEAD, LONG EYELASHES. SHE WAS EVERYTHING I THOUGHT SHE WOULD BE, PERFECT.

AS THEY WHEELED HER OUT OF MY ROOM MY HEART ACHED FOR HER. I SOBBED AND PRAYED GOD WOULD KEEP AN EYE ON HER AND MAKE HER BETTER. I HAD ONLY GOT TO SEE HER FOR ABOUT FIVE MINUTES AND IT WASN’T LONG ENOUGH. LATER A NURSE CAME IN AND BROUGHT ME SOME PICTURES OF HER. IT HELPED A LITTLE. THE NURSE THEN TOLD ME SIERRA WAS BORN AT 8:33P.M ON JULY 20,2005, SHE WAS 6LB 5.6 OUNCES AND WAS NINETEEN INCHES LONG.

AROUND 1A.M. A DOCTOR FROM DAYTON CHILDREN’S CALLED ME. HE SAID THEY FOUND OUT WHAT WAS WRONG WITH HER. SHE HAD TETRALOGY OF FELLOT AND PULMONARY ALTRESIA. WHICH MEANS THE OXYGENATED BLOOD AND THE NON OXYGENATED BLOOD WERE MIXING. THE CHAMBERS SHOULD BE SEPARATED. THE P.A. MEANT THAT SHE WAS MISSING HER PULMONARY VALVE, WHICH HELPS CARRY OXYGEN TO HER LUNGS. HE EXPLAINED THAT THEY DID NOT DO THE KIND OF SURGERY THAT SHE NEEDED. HE WANTED TO TRANSPORT HER TO CINCINNATI, OHIO TO THE CHILDREN’S HOSPITAL DOWN THERE.

I COULDN’T SLEEP AT ALL AFTER THAT. I LAID THERE AND STARED AT MY STRONG LITTLE GIRLS PICTURES. I KEPT WISHING THIS WAS ALL A DREAM AND THAT SHE WAS IN MY ARMS. I SLEPT WITH A THING CALLED A SNOODLE; IT WAS A PINK CLOTH DOLL/BLANKET THAT DAYTON’S TRANSPORT TEAM GAVE TO ME. THEY SAID IF I SLEEP WITH IT MY SMELL WOULD GET ON IT. SO IT COULD BE PUT IN THE BED WITH SIERRA AND SHE WOULD KNOW WHO I AM. ABOUT 10 A.M. THE DOCTORS FROM DAYTON CHILDREN’S CALLED AGAIN AND TOLD ME SHE WAS DOING FINE AND THEY WERE GOING TO KEEP HER THERE FOR ANOTHER DAY.

THAT DAY I CALLED A MILLION TIMES TO CHECK ON HER. ONCE A KIND NURSE EVEN HELD THE PHONE UP TO SIERRA SO I COULD TALK TO HER. THE NURSE SAID SHE WAS LOOKING AROUND FOR ME. THAT MADE ME FEEL GOOD THAT SHE KNEW MY VOICE AND THAT I WAS THERE FOR HER. THAT NURSE AND SIERRA PUT A MUCH NEEDED SMILE ON MY FACE.

MEAN WHILE I WAS DOING EVERYTHING I WAS TOLD SO I COULD GET RELEASED FROM COMMUNITY HOSPITAL THE NEXT DAY (JULY 22, 2005). I WAS SO EXCITED! FINALLY I COULD GET OUT OF HERE AND GO BE WITH MY LITTLE ANGEL. I COULDN’T WAIT TO SEE HER AND TOUCH HER. I KNEW I PROBABLY COULDN’T HOLD HER BUT I WOULD BE HAPPY WITH ANYTHING AT THIS POINT.

SO HERE IT WAS TIME TO GET OUT OF THE HOSPITAL FOR ME. I WAS INFORMED THAT SIERRA WAS ALREADY TRANSFERRED TO CINCINNATI CHILDREN’S. ALL I COULD THINK ABOUT WAS GETTING TO SEE SIERRA, SO SHE KNEW SHE WASN’T ALL ALONE. MOMMY WAS ON HER WAY. IT WAS ABOUT TWO AND A HALF HOURS TO CINCINNATI AND IT WAS THE LONGEST RIDE OF MY LIFE. ABOUT 7:30P.M. I GOT THERE. MY STOMACH WAS IN KNOTS AND IT GOT WORSE WITH EVERY STEP I TOOK. AS I STEPPED INTO HER ROOM TEARS CAME TO MY EYES. HER TINY LITTLE BODY WAS HOOKED UP TO 13 DIFFERENT MACHINES, PUMPS, OXYGEN AND MONITORS. SHE WAS SWOLLEN AND STILL SEDATED FROM THE PROCEDURE THAT WAS DONE TO HER, EARLIER THAT DAY. SHE HAD A HEART CAUTERIZATION DONE BEFORE I GOT THERE.

THE REST OF THE NIGHT I SAT BY HER BED STROKING HER HAIR AND THINKING ABOUT HOW LUCKY I WAS TO HAVE SUCH A BEAUTIFUL LITTLE GIRL. THE DOCTOR DREW A DIAGRAM AND TRIED TO EXPLAIN WHAT WAS WRONG WITH SIERRA TO ME AND HER CONDITION A LITTLE MORE IN DEPTH. THE NURSES EXPLAINED WHAT EVERYTHING HOOKED UP TO MY ANGLE WAS AND HOW TO READ THE MONITORS. I WAS A LITTLE BIT OVER WHELMED. I KNEW IN TIME I WOULD UNDERSTAND EVERYTHING. I JUST COULDN’T BE AFRAID TO ASK QUESTIONS. I PUT HER SNOODLE INTO HER BED.

A COUPLE OF DAYS LATER THEY STARTED TAKING SIERRA OFF OF A COUPLE OF HER MEDICINE MACHINES BECAUSE SHE WAS DOING REALLY WELL. THAT MADE ME FEEL GREAT, LIKE IT WAS A STEP TOWARDS GETTING MY BABY BACK. THE SWELLING STARED TO GO DOWN AND SHE OPENED HER DARK BLUE EYES. I COULDN’T LEAVE HER SIDE UNTIL SHE FEEL BACK TO SLEEP. I TALKED TO HER AND HELD HER HAND. I CRIED WITH JOY THAT DAY.

THE NEXT DAY I WAS ABLE TO HOLD MY BABY FOR THE FIRST TIME. I REMEMBER EVERY FEELING I HAD. THE NURSE HANDED HER TO ME AS I SAT IN THE ROCKER WITH HER. BEING ABLE TO FEEL HER IN MY ARMS WAS THE BEST FEELING EVER. I STILL REMEMBER THE FEEL OF HER SOFT SKIN PRESSED AGAINST MINE AND HOW HER HAIR SMELLED AS I HELD HER. I HELD HER UNTIL I ABSOLUTELY HAD TO STRETCH. THEN I WOULD HOLD HER AGAIN. I NEVER WANTED TO LET HER GO AGAIN. DURING THIS TIME I WAS ALLOWED TO CHANGE DIAPERS. I REMEMBER THE FIRST TIME I DID. I HAD HER LITTLE BUTT UP CLEANING IT AND LITTLE MISS SIERRA DECIDED SHE WASN’T DONE. SHE POOPED ALL OVER MY HAND AND HER BED. THE NURSES AND I REALIZED SHE LOVED TO PLAY GAMES. SHE WOULD LOOK AT YOU AS IF TO SAY WHAT DID I DO?

ON JULY 24, 2005 A THERAPIST CAME IN TO ASSIST WITH SIERRA’S FIRST BOTTLE FEEDING. IT WAS HER FIRST GO AROUND WITH THE BOTTLE AND SHE DIDN’T LIKE IT AT ALL. THE DOCTORS STARTED HER OUT ON NEO SURE ADVANCED, BUT EVENTUALLYSHE WAS STARTED ON A NG TUBE FEED.

ON JULY 26, 2005 SIERRA WAS DOING REALLY WELL SO THEY MOVED HER TO THE STEP DOWN UNIT. STEP DOWN UNIT IS LIKE MODERATE CARE UNIT AT THE U OF M HOSPITAL.BUT IN CINCINNATTI THE ROOMS WERE PRIVATE WITH SHOWERS AND A PULL OUT BED.IT MADE MY DAY WHEN THEY TOLD ME SHE WAS MOVING, IT MEANT ONE MORE MOVE TO GOING HOME.

ON JULY 27,2005 A DOCTOR CAME TO SEE US AND SAID SIERRA HAD CHROMOSOME 22q. (DIGORGES SYNDROME). WHICH MEANS THAT A PART OF HER 22ND CHROMOSOME WAS MISSING. THIS IN TURN CAUSED HER HEART DEFECTS, CALCIUM AND MAGNESIUM DEFICIENCIES THAT SHE HAD DEVELOPED. THIS COULD ALSO RELATE TO A LIST OF THING THAT COULD AFFECT HER LATER. SUCH AS KIDNEY FAILURE, LEARNING DISABILITIES, BEHAVIORAL PROBLEMS, FEEDING PROBLEMS AND CLEFT PLATE, ALONG WITH MANY OTHER THINGS. I WAS SPEECHLESS; IT WAS MORE WORRIES TO ADD TO THE LIST OF PROBLEMS SHE WAS ALREADY GOING THROUGH. THE BAD NEWS IS, IF I AM THE CARRIER THAN EVERY KID I MAY WISH TO HAVE COULD BE BORN LIKE SIERRA, IF NOT WORSE OFF.

ON AUGUST 1, 2005 SIERRA STARTED HAVING PROBLEMS WITH HER OXYGEN LEVELS AND HER BLOOD PRESSURE. THEY COULDN’T BRING IT BACK UNDER CONTROL AND THEY RE ADMITTED HER TO THE INTENSIVE CARE UNIT. I WAS HEART BROKEN ALL OVER AGAIN. I WAS SO LOOKING FORWARD TO GOING HOME SOON AND WE TOOK A STEP BACK. I QUICKLY LEARNED IT WAS NOT AN UNCOMMON THING WITH SICK BABIES.


ON AUGUST 2, 2005 THE DOCTORS TOLD ME THEY HAD THOUGHT IT OVER AND THEY WANTED SIERRA TO UNDER GO SURGERY. ON AUGUST 4, 2005 THEY DID THE SURGERY. SIERRA WAS FIFTEEN DAYS OLD. SHE DID REALLY WELL THE DOCTORS SAID. I AM NOT SURE EXACTLY WHAT THEY DID BUT IT WAS A TEMPORARY FIX TO HER VALVE PROBLEM. THEY TOLD ME WHEN SHE WAS 5 OR 6 MONTHS THEY WOULD DO ANOTHER ONE TO PERMANENTLY FIX THE PROBLEM. HOPEFULLY!

ON AUGUST 14, 2005 SHE WAS MOVED BACK TO THE STEP DOWN UNIT. I PRAYED NOTHING WOULD HAPPEN SO I COULD TAKE MY DAUGHTER HOME SOON. I TRIED TO THINK POSITIVE AND KEEP GOOD THOUGHTS WHILE I GOT TO KNOW MY ANGEL. I CHERISHED EVER MOMENT WITH HER. I THOUGHT TO MYSELF AND REALIZED I COULDN’T BELIEVE I COULD LOVE SOMEONE/ANYONE THIS MUCH. I KNEW I WOULD DO ANYTHING FOR MY LITTLE GIRL. THIS LOVE GREW STRONGER WITH EACH SECOND THAT PASSED.

ON AUGUST 18, 2005 SIERRA STARTED HAVING OXYGEN PROBLEMS AGAIN. SHE BROUGHT HER SELF RIGHT OUT OF IT WITH TIME. THEN THE BEST NEWS EVER CAME. THEY SAID WE COULD GO HOME ON AUGUST 20, 2005 IF EVERYTHING WAS STILL GOOD. I WAS SO EXCITED I COULDN’T SLEEP. WE WERE READY. WHAT WOULD SHE THINK OF OUR HOUSE, HER ROOM AND ALL THE NICE STUFF I BOUGHT HER?

THE DAY WAS FINALLY HER AUGUST 20, 2005. THE DAY I NEVER THOUGHT WOULD COME. WE GOT TO GO HOME. IT WAS SIERRA’S ONE MONTH OF LIFE ANNIVERSARY. SHE WENT HOME ON OXYGEN, NG TUBE AND A LOT OF MEDICATION. IT WAS GREAT TO CARRY HER IN AND INTRODUCE HER TO HER HOME. IT WAS A LITTLE HECTIC AT FIRST. ALL THESE SUPPLIES WERE BEING DELIVERED (OXYGEN TANKS, PORTABLE ONES). MY SISTER BROUGHT MY NIECE, BRITTNEY OVER TO SEE SIERRA. IT WAS THE FIRST TIME SHE HAD GOT TO SEE HER AND SHE FEEL IN LOVE. SIERRA FILLED HER DIAPER UP ON HER NEWLY INTRODUCED AUNT. IT CAME OUT THE SIDE OF THE DIAPER THROUGH HER SHORTS AND DOWN BRIT’S LEG. WE ALL LAUGHED BESIDES BRIT OF COURSE. WHEN EVERYONE LEFT I STARTED TO GET NERVOUS. WHAT IF I DID SOMETHING WRONG? WHAT IF I DIDN’T HEAR HER? IT WAS HARD TO SLEEP THAT NIGHT. IT WAS REALLY SCARY, BECAUSE I WAS USED TO ALL THE ALARMS IN CASE SOMETHING WENT WRONG. AT HOME I JUST HAD ME. THE FIRST TWO DAYS WENT WELL MY INSTINCT TOOK OVER MY FEARS AND WE STARTED TO SETTLE INTO A ROUTINE. I WAS JUST SO HAPPY TO BE HOME.

OUR FIRST PEDIATRIC APPOINTMENT WAS ON AUGUST 23, 2005. WHILE WE WERE THERE SHE STARTED BREATHING FUNNY AND TURNED A LITTLE BIT BLUE. HER DOCTOR WAS A LITTLE CONCERNED AND CALLED DAYTON’S CHILDREN’S HOSPITAL. THEY WANTED ME TO BRING HER IN TO SEE THE PULMONARY SPECIALIST AS SOON AS POSSIBLE. SO A FRIEND DROVE ME STRAIGHT THERE. ON THE WAY SHE JUST STARTED SCREAMING AND TURNED A SHADE OF GREY. I WAS REALLY SCARED AT THIS POINT. WHEN WE GOT THERE THE DOCTOR CHECKED HER OXYGEN AND TOOK HER TO THE EMERGENCY ROOM.

FOR A COUPLE OF HOURS THE DOCTORS AND NURSES TRIED TO GET HER STATS UNDER CONTROL, THEY RAN SOME MORE TEST. EVERYTHING CAME BACK NORMAL BUT THEY WANTED TO SEND HER BACK TO CINCINNATI FOR OBSERVATION. I REMEMBER THINKING NOT AGAIN, NOT MY BABY, PLEASE. I BROKE OUT INTO TEARS. I CLIMBED INTO THE AMBULANCE WITH HER AND CRIED THE WHOLE WAY THERE.

AFTER WE HAD SIERRA ALL SETTLED IN A DOCTOR CAME TO SEE ME. HE SAID SHE WAS FINE AND TOMORROW SHE COULD GO TO THE STEP DOWN UNIT. THEN THE DAY AFTER WE WOULD PROBABLY GET SENT HOME AGAIN. THAT WAS A RELIEF. HE INFORMED ME THEY TRANSFERRED HER JUST TO BE ON THE SAFE SIDE. HE SAID THIS WOULD PROBABLY HAPPEN FROM TIME TO TIME UNTIL HER HEART WAS FIXED. AS LONG AS SHE BRINGS HER SELF OUT EVERYTHING WAS FINE. THERE WAS ALSO A CHANCE SHE WOULDN’T BRING HER SELF OUT. I TRIED NOT TO THINK ANY NEGATIVE THOUGHTS. SHE CONTINUED TO DO WELL AND SHE WAS RELEASED ON AUGUST 25, 2005. I KEPT THINKING I HOPE THIS IS IT, NO MORE HOSPITALS UNTIL WE WENT FOR THE NEXT SURGERY.

SIERRA CONTINUED TO DO GREAT AT HOME. THE MONTH WE WERE AT HOME WAS A BLESSING. I CHERISHED EVER SECOND WITH OUT HER. SHE WAS GETTING SO BIG AND GROWING WITH PERSONALITY. THROUGH OUT SEPTEMBER SHE HAD NUMEROUS APPOINTMENTS WITH NUMEROUS DOCTORS. SHE SAW CARDIOLOGIST, NUITRIONISTS, GENETICISTS, ENDOCHRONOLOGIST AND HER REGULAR PEDIATRICIAN. SHE ALSO HAD A HOME HEALTH NURSE WHO CAME TWO TIMES A WEEK TO CHECK HER WEIGHT AND OXYGEN LEVELS. WE WERE VERY BUSY WOMAN AND BABY.

I ALSO TRIED TO BOTTLE FEED SEVERAL TIMES A DAY. SHE WAS DOING REALLY WELL WITH IT. SHE WAS BUILDING HER BOTTLE INTAKE ON HER OWN. THEN ONE DAY SHE JUST STOPPED. I THOUGHT IT WAS REALLY WEIRD. I THINK SHE REALIZED I WAS GOING TO FEED HER THROUGH THE NG TUBE IF SHE DIDN’T EAT FROM THE BOTTLE. SHE PROBABLY FIGURED WHY STRAIN YOUR SELF MOMMY WILL FEED ME ANYWAY.

I WILL TELL YOU A LITTLE ABOUT SIERRA’S PERSONALITY. I AM LAUGHING AS I THINK OF IT. I WOULD BE HOLDING HER BOLUS FEED ABOVE HER TO LET IT DRIP DOWN INTO HER NG TUBE. SHE WOULD WAIT TILL THE MINUTE I STOPPED PAYING ATTENTION AND SHE WOULD HOOK HER TINY LITTLE FINGERS AROUND THE CORD OF THE TUBE, AND PULL IT FROM MY HAN, WHICH IN TURN GOT IT ALL OVER ME, HER AND THE FURNITURE. SHE ALSO LOVED THE AQUARIUM SWING I BOUGHT FOR HER. IT WAS A LIFE SAVER WHEN I HAD HOUSE WORK OR SOMETHING TO DO. IT WOULD RELAX HER AND SHE WAS CONTENT WITH THE LIGHTS. IT PLAYED SOOTHING MUSIC THAT EVEN RELAXED ME.

SHE HAD A LITTLE ORANGE KITTY SHE LOVED TO HAVE BESIDE OF HER. I BOUGHT THAT DURING HER STAY IN CINCINNATI. SHE COULD STARE AT IT FOR EVER. I LIKED TO THINK IT GAVE HER SOME THING TO LOOK AT BESIDES WHITE WALLS. I LOVED EVERYTHING ABOUT SIERRA. BUT THERE WAS ONE THING THAT MADE IT ALL FEEL REAL AND SAFE. I CAN REMEMBER LAYING HER ON MY CHEST AND FEELING HER HEART AGAINST MINE. LISTENING TO HER SIGH AS IF SHE WAS FRUSTRATED AT TIMES AND SHE WOULD SNUGGLE AGAINST ME. I LOVED HER LITTLE HAMMER TOES. I FEARED THEY WOULD MESS WITH HER ABILITIES TO WALK. THEN I THOUGHT THAT WOULD BE THE LEAST OF HER PROBLEMS.

I ALSO HAD SIERRA’S PICTURES TAKEN. THEY CAME OUT PERFECT LIKE HER. IT WAS A BACK DROP OF CLOUDS AND THE CUSHION SHE SAT ON TOOK AS IF THEY WERE BIG CLOUDS. SHE LOOKED LIKE AN ANGEL SITTING THERE. DURING A SMALL PERIOD OF TIME THE CARDIOLOGIST WAS A LITTLE WHERRY ABOUT SIERRA’S OXYGEN LEVELS. THEY WERE A LITTLE BIT LOW; NOTHING THAT NEEDED IMMEDIATE ATTENTION. SHE THOUGHT SHE MAY NEED HER NEXT SURGERY SOONER THAN WHAT WAS ORIGINALLY PLANNED. IT WASN’T SUPPOSED TO BE UNTIL SHE WAS FIVE OR SIX MONTHS OLD. SHE WAS ONLY TWO MONTHS NOW.

THE DOCTORS ASKED ME FOR PERMISSION TO CONTACT SOME OTHER SURGEONS ACROSS THE COUNTRY. ALL SURGEONS KNOW DIFFERENT TECHNIQUES AND SHE GAVE ME FOUR NAMES. OUT OF ALL OF THEM I REMEMBER ONE DISTINCTLY FROM CLEVELAND, OHIO AND ANOTHER FROM CALIFORNIA. I GAVE HER MY PERMISSION AND WE WAITED TO HEAR SOMETHING BACK.

AFTER A COUPLE OF WEEKS I TOOK HER TO SEE HER PEDIATRICIAN AND MET A LADY THERE. SHE ASKED A LOT OF QUESTIONS ABOUT SIERRA. I TOLD HER ABOUT WAITING TO HEAR FROM A SURGEON. THE WOMAN THEN TOLD ME HER DAUGHTER HAD SIMILAR CONDITIONS AND SAID SHE TOOK HER TO THE UNIVERSITY OF MICHIGAN HOSPITAL. THE DOCTORS NAME WAS DR. BOVE. SHE HIGHLY RECOMMENDED HIM AND SAID I SHOULD CONTACT HIM.

I WENT BACK TO THE CARDIOLOGIST ON SEPTEMBER 29, 2005 AND BROUGHT UP DR BOVE’S NAME.SHE NEW INSTANTLY WHO HE WAS. SHE CALLED DR. BOVE AND HE SAID HE THOUGHT HE COULD HELP SIERRA. HE WANTED US THERE ON OCTOBER 4, 2005. I COULDN’T BELIEVE ALL OF THIS WAS HAPPENING SO FAST. I FOUGHT BACK AT ALL MY MIXED EMOTIONS AND I MADE ARRANGEMENTS TO GO TO MICHIGAN. I WAS HAPPY AND HOPING THIS WOULD BE THE ANSWER TO ALL OF MY PRAYERS. I KEPT WORRYING IF I WAS DOING THE RIGHT THING. MAYBE I SHOULD OF WAITED FOR THE PLANNED SURGERY WHEN SIERRA WAS SIX MONTHS. WHAT IF SOMETHING HAPPENED BECAUSE SHE WAS TO LITTLE? WHAT IF I WAITED TO LONG AND SOMETHING HAPPENED. IT WAS A NO WIN SITUATION FOR ME. I WAS SCARED AND CONFUSED. ALL I KNEW WAS I HAD TO USE MY BEST JUDGEMENT FOR BOTH OF OUR SAKE. I FOLLOWED HER DOCTORS ADVICE AND THE ADVICE OF THE NICE WOMAN IN THE DOCTORS OFFICE. I TOOK MY ANGEL TO MICHIGAN.

BRIGHT AND EARLY WE ARRIVED AT THE HOSPITAL ON OCTOBER 4, 2005. I TOOK THE FIRST STEP INTO THE MOTT’S CHILDREN HOSPITAL IN MICHIGAN. THAT DAY, WE MET WITH THE CARDIOLOGIST AND SHE GAVE SIERRA AN EKG, ECHOCARDIOGRAM AND X-RAYS. I REMEMBER BEING SCARED WHEN THE DID THE X-RAYS. THEY PUT HER IN A CHAIR KIND OF THING. I KEPT THINKING SHE WAS GOING TO FALL OUT OF IT. I WAS GRATEFUL WHEN THEY WERE DONE.

THE NEXT DAY THEY DID THE HEART CATHETER. SHE WAS ADMITTED BECAUSE OF SOME MINOR COMPLICATIONS SHE HAD EXPERIENCED DURING THE CATH. SHE WAS ADMITTED TO MODERATE CARE. I WAS TOLD I WOULD MEET DR.BOVE THE NEXT DAY AND HE WOULD TELL ME IF HE COULD HELP WITH SIERRA. I NEVER DID MEET HIM BUT HE SCHEDULED SIERRA FOR SURGERY ON OCTOBER 10, 2005. I DON’T REMEMBER THE EXACT TEST RESULTS BUT I DO KNOW IT SHOWED THERE WAS TWO COLLATERAL ARTERIES ON THE LEFT SIDE AND ONE ON THE RIGHT. THEY WERE GOING TO TRY TO ATTACH THEM TO HELP THE OXYGENATED BLOOD FLOW. IF THAT WAS SUCCESSFUL THEN A FEW MONTHS LATER THEY WOULD ATTACH THE STUNT TO THOSE ARTERIES. THEN TO WHERE HER PULMONARY VALVE SHOULD BE. THAT WAS THE PLAN ANYWAYS.

MY SISTER AND HER MOTHER IN LAW CAME UP TO BE WITH US FOR THE SURGERY. AS IF I WASN’T ALREADY SCARED AND NERVOUS MY SISTER MADE IT WORSE. SHE STARTED TO TELL ME I SHOULD MAKE PLANS FOR IF SIERRA DIDN’T MAKE IT. I COULDN’T BELIEVE DEEP DOWN SHE WAS SAYING THIS TO ME. THAT IS THE LAST THING I WANTED TO HEAR WHILE MY PRECIOUS BABY WAS IN SURGERY. I TRIED TO BITE MY TONGUE AND IGNORE HER FOR SIERRA’S SAKE.

I DIDN’T GET TO MEET DR. BOVE UNTIL AFTER SIERRA’S SURGERY. HE WAS SUCH A KIND AND GENTLE MAN. HE SAID HE COULDN’T BE FOR SURE IF SIERRA’S SURGERY WAS SUCCESSFUL BECAUSE HER ARTERIES WERE SMALLER THAN PREVIOUSLY THOUGHT. HE SAID WE WOULD HAVE TO WAIT AND SEE.

ON OCTOBER 10, 2005 A COUPLE DAYS AFTER SIERRA’S SURGERY THE DOCTORS WANTED TO TAKE HER OFF OF THE VENTILATOR AND PUT HER ON OXYGEN. SHE JUST WASN’T READY FOR ALL OF THAT. SHORTLY AFTER THE VENT THEY TRIED TO PUT SIERRA ON A NASAL C PAP. THAT WORKED FOR A WHILE, BUT YET AGAIN, SHE HAD TO BE PUT BACK ON THE VENTILATOR. A COUPLE OF DAYS LATER THE DOCTORS TRIED AGAIN. SHE DID GREAT ON THE C PAP THE SECOND TIME AROUND. I GOT TO HOLD HER AGAIN. IT WAS GREAT. YOU COULDN’T KEEP THE SMILE OFF MY FACE AS I HELD HER.

IT WASN’T LONG AFTER THAT NIGHT WHEN SIERRA STARTED BREATHING REALLY HARD ON THE OXYGEN. WHEN SHE WOULD BREATH IT LOOKED AS IF HER WHOLE CHEST WAS GOING TO CAVE IN. SHE WAS REINTUBATED AT THIS POINT.

ON OCTOBER 20, 2005 DOCTORS ORDERED AN X-RAY AND A ECHOCARDIOGRAM. I WAS SITTING BY SIERRA’S BED JUST WAITING FOR THE RESULTS PRAYING. I WAS REALLY UPSET AND A DOCTOR IN WHICH I WON’T MENTION HIS NAME CAME IN (NOT DR.BOVE). HE STOOD ON THE OTHER SIDE OF SIERRA’S BED LOOKED RIGHT PAST ME AND SAID TO STOP MY DAUGHTERS FEED BECAUSE SHE WAS TO HAVE SURGERY THE NEXT MORNING. THIS DOCTOR ACTUALLY TRIED TO LEAVE WITH OUT TALKING TO ME OR EXPLAINING. I ASKED HIM WHAT WAS GOING ON AND HE SIGHED AS IF HE WAS TO BUSY FOR ME. HE REPLIED SHE IS HAVING DIAPHRAGM PLACATION SURGERY TO HELP HER BREATH BETTER. I STARTED TO CRY AND HE WAS GONE BEFORE THE FIRST TEAR FELL. HE ACTED SO BOTHERED BY ME; LIKE I WAS A BURDEN. THANKS TO CINDY, OUR WONDERFUL NURSE THAT DAY IN THE P.C.T.U, I QUICKLY CALMED DOWN. SHE EXPLAINED TO ME HOW THE SURGERY WAS DONE AND WHAT THE SURGERY WAS.IT WASN’T EVEN A SURGERY TO BE REALLY WORRIED ABOUT.

LATER WE FOUND OUT THAT THE COLLATERALS DID CLOT OFF AND COLLAPSE. SO THE LAST SURGERY WAS NOT SUCCESSFUL LIKE WE HAD HOPED. DR.BOVE SAID HE WOULD WAIT AND SEE WHAT THEY COULD DO WITH THE COLLATERALS ON THE RIGHT SIDE OF HER HEART; IF THEY COULD DO ANYTHING. HE WAS VERY HONEST AND TOLD ME IF IT COULDN’T BE DONE, OR IF THEY DID TRY AND FAILED,WE WERE PRETTY MUCH OUT OF OPTIONS. WHICH MEANT SIERRA WOULD PROBABLY PASS AWAY. I WAS HEART BROKEN BUT I APPRECIATED HIS HONESTY. I DIDN’T WANT A DOCTOR TO TELL ME WHAT HE THOUGHT I WANTED TO HEAR. I WANTED SOMEONE TO LAY IT ALL OUT THERE FOR ME TO SEE.

IN THE LAST TWO WEEKS I HAD SO MANY DIFFERENT EMOTIONS. I THOUGHT I WAS LOSING MY MIND; BEING AWAY FROM HOME, NO FRIEND, NO FAMILY AND NO FATHER FOR MY ANGEL. I KEPT HOPPING IT WAS A NIGHTMARE AND I WOULD WAKE UP SOON. SIERRA WOULD BE SAFE AND HEALTHY IN MY ARMS. TO BE HONEST I PROBABLY WOULD OF GONE CRAZY IF IT WERE NOT FOR SIERRA’S GREAT, WONDERFUL, HONEST, SWEET NURSES AND ALL THE WONDERFUL PARENTS I CAME IN CONTACT WITH. THANKS TO ALL OF THEM.

SO HERE WAS THE DAY SIERRA WOULD HAVE DIAPHRAGM SURGERY. SHE CAME OUT DOING JUST GREAT. THE NEXT MORNING ABOUT 9 A.M, I WALKED IN TO FIND OUT THAT SIERRA HAD EXTUBETED HER SELF. THE NURSE WAS WORKING ON THE BABY NEXT TO SIERRA AND HEARD HER COUGHING AND CHECKED ON HER. SURE ENOUGH, SHE HAD COUGHED IT RIGHT OUT. SHE WAS READY BEFORE THEY WERE I GUESS.THE DOC SAID AS LONG AS SHE DID WELL THEN SHE COULD STAY EXTUBATED. SIERRA WAS DOING BEAUTIFUL, WONDERFUL, AND GREAT. THE RESPIRTORY THEREPIST SAID. NEEDLESS TO SAY THAT MADE MY DAY. SHE WAS ON ONE LITER OF OXYGEN AND HER STATS WERE AT 70'S LOW 80'S. SHE DID GREAT OVER THE NEXT COUPLE OF DAYS.

ON THE EVENING OF OCTOBER 24, 2005 SIERRA WAS EXTREMELY FUSSY. HER STATS DROPPED LOW AND THE PAIN MEDICINE DIDN’T WORK. NOT EVEN I HOLDING HER WOULD CALM HER DOWN.EVENTUALLY THE DREADED ALARM WENT OFF. THE DOCTORS AND NURSES PUSHED ME AWAY AND SURROUNDED HER BED. SIERRA THREW UP A LITTLE BIT AND EVERYTHING WENT BACK TO NORMAL. HER STATS WENT BACK UPAND EVERYONE LEFT HER ALONE. IT WAS ONLY A MINUTE BUT IT SEAMED TO BE A LIFETIME TO ME. I DIDN’T BREATHE UNTIL IT WAS ALL OVER. DOCTORS CALLED IT A MINI CARDIAC ARREST.

AS I SAT BY HERE BED SIERRA LOOKED UP AT ME WITH HER BEAUTIFUL LITTLE EYES AS IF TO SAY “WHAT IS ALL THE FUSS ABOUT”. I SMILED AND COMBED HER WHILE I TOLD HER HOW MUCH I LOVED HER. I FINALLY MADE MYSELF GO TO THE RONALD MCDONALD HOUSE TO GET SOME REST. AROUND 6A.M I GOT A PHONE CALL, I WAS SCARED TO ANSWER IT. YET I DID. IT WAS THE DOCTOR. SIERRA HAD GONE INTO CARDIAC ARREST ABOUT 5A.M. HER HEART RATE DROPPED DOWN WAY TO LOW, AND SHE COULDN’T BREATH VERY WELL AT ALL. CHEST COMPRESSIONS DIDN’T HELP, SO THEY REINTIBATED HER. SHE DID A LOT BETTER. I SAT ON THE BED AND JUST CRIED. I CAN’T PUT INTO WORDS WHAT I FELT BUT I WAS NUMB.

WHEN I ARRIVED AT THE HOSPITAL HER STATS WERE STILL LOW, BUT NOT TO LOW. HER OXYGEN STATS WERE IN THE 40'S AND 50'S. I BURST INTO TEARS WHEN I SAW ALL OF THAT. AS THE DAY WENT ON HER STATS GOT A LOT BETTER. I TRIED TO KEEP MY EYES OFF OF THE MONITORS AND ON HER. I KEPT FEELING THEM MOVING BACK. ALL I WANTED TO DO IS CRY FOR MY ANGEL.

SIERRA CONTINUED TO DO WELL ON OCTOBER 26, 2005 AND WAS PUT BACK ON THE C PAP. ON OCTOBER 27, 2005 SHE WAS MOVED TO JUST OXYGEN. LATER ON THAT NIGHT BACK TO THE VENTILATOR SIERRA WENT. ON OCTOBER 29, 2005 SHE WAS EXTUBATED. AFTER FIGHTING THROUGH ALL OF THAT AGAIN AND IN HONOR OF HER FIRST HALLOWEEN, I BOUGHT HER AN ORANGE BEAR DRESSED UP IN A WITCHES COSTUME FROM THE GIFT SHOP. SHE GOT A LOT OF GIFTS FROM THE CHILD LIFE DEPARTMENT. IN THE GIFT BAG SHE GOT WERE A PAIR OF THOSE BIG GLASSES WITH THE BUSHY EYEBROWS AND BIG NOSE. I PUT THEM ON SIERRA AND LAUGHED A MUCH NEEDED LAUGH. THEY COVERED HER WHOLE FACE. SHE WAS SO CUTE.

ON OCTOBER 31, 2005 SHE STARTED BREATHING DIFFERENTLY. THE C PAP WASN’T WORKING, SO THEY TRIED VAPOTHERM. SHE DID REALLY WELL WITH THAT FOR THREE OR FOUR DAYS. I WAS ABLE TO HOLD HER DURING THAT TIME, WHICH WAS REALLY GOOD, FOR ME. ON NOVEMBER 4, 2005 SHE WENT BACK ON THE C PAP.

ON NOVEMBER 5, 2005 SHE WAS REINTIBATED. SIERRA JUST COULDN’T CATCH A BREAK. ALL OF THIS ON THE VENT OFF THE VENT COULDN’T BE GOOD FOR HER. IT WAS DEFINITELY STRESSING ME OUT. I MEET SOME REALLY GOOD PEOPLE THAT LET ME TALK TO THEM EVEN THOUGH THEY HAD THERE OWN PROBLEMS. ANGELA HAYWARD TALKED TO ME A LOT. IF IT WASN’T FOR HER FRIENDSHIP DURING THOSE ROUGH PATCHES I PROBABLY WOULD OF GONE CRAZY. I FEEL REALLY BLESSED TO HAVE MET HER AND HER WONDERFUL FAMILY.

ON NOVEMBER 5, 2005 WHEN SIERRA WAS PUT BACK ON THE VENT, DOCTORS ASKED IF I WOULD CONSIDER A TRACH. RIGHT AWAY I SAID YES. THEY WERE SURPRISED I ANSWERED SO QUICKLY. I LOOKED AT IT AS IF SHE WAS ON THE VENT AND TRACH I COULD TAKE HER HOME. THE ONLY THING KEEPING US AT THE HOSPITAL WAS NOT BEING ABLE TO KEEP HER EXTUBATED. THE NURSE SAID MOST PARENTS DIDN’T WANT TO HAVE IT DONE AND WOULD PUT IT OFF FOR A WHILE. I COULDN’T SEE WAITING ON THE INEVITABLE. THERE WAS A LOT OF THINGS I NEEDED TO LEARN LIKE HOW TO TAKE CARE OF IT. SIERRA MIGHT HAVE TO LIVE WITH IT FOR THE REST OF HER LIFE. SIERRA GOT HER TRACH ON NOVEMBER 10, 2005, I WAS AFRAID TO SEE IT FOR THE FIRST TIME. IT WASN’T BAD AT ALL. IT WAS A LITTLE BLOODY FROM WHERE THEY WERE STILL CLEANING HER UP. THE HARDEST PART FOR ME WAS THINKING I WOULD NEVER HEAR HER VOICE. I MISSED HEARING HER CRY. YOU NEVER KNOW WHAT YOU HAVE TILL IT IS GONE.

ON NOVEMBER 14, 2005 SHE STARTED TO SUCK HER THUMB. WELL THE TIP ANYWAYS. IT WAS FUNNY BECAUSE SHE COULDN’T EVER GET THE WHOLE THING IN THERE. SHE WOULD ALSO BRING HER HANDS TO HER MOUTH AND SUCK ON THE BACK OF THEM. HER SPEECH THERAPIST SAID IT WAS CALLED ORAL AVERSIONS. BEING THAT SHE HAD SO MUCH STUFF GOING ON AROUND HER MOUTH AND FACE, IT WAS HER WAY OF TELLING EVERYONE NO MORE, LEAVE ME ALONE. FOR WHAT EVER REASON SHE DID IT, IT WAS STILL CUTE.

THE NEXT DAY THE ENT’S DID HER FIRST TRACH CHANGE. THEY SAID IT LOOKED REALLY GOOD AND I COULD DO THE NEXT CHANGE, SO I COULD LEARN HOW TO SUCTION AND ALL OF THAT. LEARNING EVERYTHING AT FIRST WAS REALLY SCARY, BUT I GOT THE HANG OF IT. THE FIRST TRACH CHANGE I PANICKED BECAUSE SIERRA COUGHED AND I ENDED UP MAKING HER BLEED. SHE WAS OKAY AND I GOT BETTER WITH TIME.

ON NOVEMBER 20, 2005 SIERRA TURNED FOUR MONTHS OLD, MY BIG GIRL. I COULDN’T BELIEVE IT HAD BEEN FOUR MONTHS ALREADY. ON NOVEMBER 23, 2005 SIERRA GOT HER FIRST RSV SHOT. THE NEXT DAY WAS HER FIRST THANKSGIVING. I PAINTED HER A WOODEN TURKEY THAT THE CHILD LIFE DEPARTMENT GAVE TO SIERRA. IT LOOKED MORE LIKE A PEACOCK BY THE TIME I GOT DONE WITH IT. IT WAS STILL CUTE. DURING THIS TIME SIERRA WAS DOING TRACH MASK TRIALS. SHE WAS DOING GREAT AND COULD BE ON THEM FOR TEN HOURS AT A TIME. SIERRA WAS SCHEDULED FOR HER NEXT SURGERY ON DECEMBER 14, 2005. THAT MEANT WE WOULD BE HERE FOR CHRISTMAS.

AT THIS POINT SIERRA HAS BEEN ON THE TRACH MASK FOR A WEEK STRAIGHT. SHE WAS MOVED TO MODERATE CARE. YEAH!! BEING ABLE TO HOLD HER WHEN I WANT AND NOT HAVING TO LEAVE DURING SHIFT CHANGE WAS GREAT. SHE STARTED HAVING PROBLEMS WITH HER OXYGEN STATS ABOUT A WEEK LATER. HER OXYGEN WAS LOW AND HER HEART RATE WAS UP. EVERYTHING FINALLY WENT BACK TO NORMAL AGAIN UNTIL THE NEXT MORNING. DECEMBER 6TH,2005 SHE WAS SURROUNDED BY NURSES AND DOCTORS. I WAS REALLY UPSET BECAUSE THE DAY BEFORE I KEPT TELLING THEM IN MODERATE CARE THAT SOMETHING WAS WRONG. SHE WAS REALLY FUSSY AND UNMANAGEABLE LIKE WHEN SHE WENT INTO HER MINI CARDIAC ARREST. BUT EVERYONE IGNORED MY CONCERNS. I FELT IF THEY HAD LISTENED TO ME THING WOULDN’T OF GOT THIS BAD.

BACK TO INTENSIVE CARE WE GO. THEY REINTUBATED HER AND GOT HER STABILIZED. THEY DREW BLOOD AND RAN A LOT OF TEST. THE NEXT DAY SHE HAD AN MRI TO DETERMINE IF ANYTHING WAS WRONG WITH HER COLLATERALS. THE ENTIRE TEST CAME BACK FINE. BUT SHE HAD FOUR INFECTIONS GOING ON AT ONCE. THE NIGHT OF HER MRI, I NOTICED HER HAND TWITCHING A LITTLE BIT. THE DOCTORS WEREN’T CONCERNED. THEY SAID IT WAS FROM THE INFECTIONS GOING ON AND THE SEDATION FROM THE MRI.

OVER THE NEXT FEW DAY SIERRA DID GREAT. THE TWITCHING GOT A LITTLE WORSE, BUT THEY STILL WEREN’T CONCERNED. I WAS ABLE TO HOLD HER AGAIN. ON DECEMBER 12, 2005 I WAS HOLDING HER WHEN HER LEFT HAND, LEFT EYE AND THE LEFT SIDE OF HER MOUTH STARTED TO TWITCH. NOW THE DOCTORS WERE CONCERNED. THEY ORDERED AN EEG, HEAD ULTRASOUND AND A CT SCAN. I WAS SO SCARED. I KEPT THINKING WHAT NOW, WHY MY BABY GIRL? ANOTHER EEG WAS ORDERED THE NEXT MORNING. I WAITED FOR THE RESULTS AS I SAT BY SIERRA’S BED. I KNEW IT WAS BAD NEWS WHEN I SAW THE DOCTOR AND THE SOCIAL WORKER MARIA COMING TOWARDS ME. THE TEST SHOWED SIERRA HAD A STROKE. IT WAS SO MILD WE COULDN’T REALLY NOTICE IT. SHE ALSO HAD A SMALL BLEED A COUPLE LAYERS, DURA LAYERS ABOVE THE BRAIN. I CRIED SO MUCH. SO MUCH IS HAPPENING TO MY SWEET LITTLE GIRL IN SUCH A SHORT TIME. IT WASN’T FAIR TO HER. MARIA SAT WITH ME FOR A WHILE AFTER THE NEWS. IT WAS NICE TO KNOW SOMEONE CARED EVEN IF I DIDN’T HAVE A LOT TO SAY. I WAS SO STUNNED THAT FOR DAYS AFTER WARDS MY MIND WENT BLANK. I DIDN’T KNOW WHAT TO SAY, WHAT TO THINK OR EVEN WHAT TO FEEL.

SIERRAS WAS PUT ON A MEDICATION FOR THE TWITCHING AND BLOOD THINNERS SO SHE DID NOT FORM A BLOOD CLOT. NEEDLESS TO SAY HER SURGERY WAS CANCELLED. EVENTUALLY SHE STARTED DOING WELL AGAIN. THEY EVEN STARTED HER TRACH MASK TRIALS AGAIN. SURGERY WAS RESCHEDULED FOR DECEMBER 28, 2005. THREE DAYS AFTER CHRISTMAS.

AT THIS POINT I HAD PRETTY MUCH GIVEN UP. AFTER CONSTANTLY GETTING MY HOPES UP TO HAVE THEM KNOCKED BACK DOWN AND HEARING MY SISTERS MOUTH. I BEGAN TO EXCEPT SIERRA MAY NEVER COME HOME. I EVEN GAVE INTO THE FACT SHE MIGHT NOT MAKE IT. IT SOUNDED REALLY AWFUL TO OTHERS, BUT IN A WEIRD WAY IT HELPED ME TO ENJOY SIERRA A LITTLE MORE. I SPENT MY DAYS LOVING HER INSTEAD OF BEING SCARED FOR HER. I LOVED AND HELD HER, READ HER BOOKS, KISSED THE HELL OUT OF HER AND MADE SURE SHE KNEW THAT I WAS IN LOVE WITH HER.

SIERRA TURNED FIVE MONTHS ON DECEMBER 20, 2005 AND HER FIRST CHRISTMAS WAS ON DECEMBER 25, 2005. SHE HAD ALL KINDS OF DECORATIONS HUNG UP, SUN CATCHERS ON HER WINDOW,AND A MOUNTAIN OF GIFTS FROM ME,MY DAD,MY SISTER,FRIENDS,AND DONATIONS FROM THE HOSPITAL. THE DOCTORS AND NURSES WERE SHOCKED OF THE AMOUNT OF GIFTS SHE HAD. HEY SHE HAD BEEN THROUGH SO MUCH IT WAS TIME TO GIVE BACK. SO WHAT IF SHE WAS SPOILED. SHE NEVER WOKE UP TO OPEN GIFTS. WHEN I WAS BORED I WOULD OPEN THEM. THE LITTLE STINKER WAITED TILL I WAS ON THE LAST GIFT TO WAKE UP. GO FIGURE MY SMART LITTLE ANGEL LET MOM DO ALL THE WORK AND I CAN ENJOY. I DRESSED HER UP IN A LITTLE SANTA CLAUS OUTFIT. SHE WAS SO ADORABLE. I EVEN GOT HER PICTURES DONE WITH SANTA CLAUS HIM SELF. SHE JUST LOOKED AT ME LIKE WHY ME?

AS TIME GOT CLOSER TO SURGERY, I GOT MORE SCARED. I CRIED MY SELF TO SLEEP. CRIED WHEN I WOKE UP AND CRIED EVERY TIME I LOOKED AT HER. I GUESS A MOTHER NEVER TRULY GIVES UP.

THE NIGHT BEFORE SURGERY I DIDN’T SLEEP AT ALL. THE MORNING OF SURGERY DECEMBER 28, 2005 AT 4A.M., I WENT TO SPEND TIME WITH HER BEFORE SURGERY. SHE WAS SLEEPING PEACEFULLY WHEN I ARRIVED. MY NIECE BRITTNEY WENT WITH ME. I WANTED TO HOLD HER BUT I WAS UNABLE TO. I REMEMBER BEING MAD AT MY SISTER TARA BECAUSE SHE DIDN’T COME TO THE HOSPITAL BEFORE THEY TOOK SIERRA INTO SURGERY. WOULDNT SHE FEEL BAD IF SOMETHING HAPPENED TO HER AND SHE DIDN’T GET A CHANCE TO SAY GOODBYE? THEY SHOWED UP RIGHT AFTER THEY TOOK SIERRA.

I COULDN’T STAY FOCUSED ON ANYTHING WHILE WE WERE IN THE WAITING ROOM. I KEPT PICTURING HER WHEN WE WERE HOME WHEN WE THERE WAS HAPPY TIMES. THAT DIDN’T LAST LONG .THE NURSE CAME OUT TO UPDATE US. MY SISTER STARTED HER LECTURE ABOUT WHAT IF SIERRA DIDN’T MAKE IT? I TRIED TO HOLD MY TONGUE. I COULDN’T DO IT ANY MORE I TOLD MY SISTER OFF RIGHT THERE IN THE WAITING ROOM. LUCKY THERE WASN’T ANYONE ELSE AROUND. MY SISTER ENDED UP TAKING A WALK AND I ENDED UP IN TEARS. I HATED TO FLIP OUT BUT I HAD ENOUGH OF HER NEGATIVITY.

MY SOCIAL WORKER MARIA CAME TO SIT WITH ME FOR A WHILE. SHE WANTED TO SEE IF I WAS ALRIGHT. I EXPLAINED TO HER WHAT HAD HAPPENED. THEN MY SISTER CAME BACK ACTING IF NOTHING EVER HAPPENED. I DECIDED FOR NOW THAT WAS PROBABLY THE BEST IDEA.

THE SURGERY WAS FINALLY OVER AND DR, BOVE CAME OUT TO TALK TO US. HE WASN’T HAPPY AT ALL. WHEN THEY OPENED SIERRA UP THEY REALIZED THE COLLATERALS WERE SMALLER THAN THEY HAD ORIGINALLY THOUGHT. SHE WAS OKAY, BUT HER OXYGEN AND HER HEART RATE WERE WORSE THAN BEFORE SURGERY. ALL WE COULD DO WAS WAIT AND SEE, AGAIN. SIERRA WAS SWOLLEN WORSE THAN ANY OF THE OTHER SURGERY’S. I WANTED TO CRY FOR HER. HER HEART RATE WAS EITHER TO HIGH OR TO LOW, I CAN’T REMEMBER EXACTLY. ALL I KNOW IS THAT MY ANGLE WASN’T DOING WELL. IT WAS SO BAD I HAD A FEELING THAT THIS WAS MY LAST NIGHT WITH HER.

EVENTUALLY MY FAMILY HAD ALL LEFT. THEN MY SISTER APOLOGIZED TO ME. AS TIME WENT ON WITH NO IMPROVEMENTS I SAT BESIDE MY LITTLE GIRL. THEY DECIDED TO CALL DOCTORS FROM HOME TO TAKE SIERRA TO THE CATH LAB TO SEE WHAT EXACTLY WAS GOING ON. IF MAYBE SOMETHING HAPPENED TO THE COLLATERALS OR IF HOPEFULLY THERE WAS SOMETHING THAT COULD BE FIXED IN THE CATH LAB.

RIGHT BEFORE THEY TOOK HER TO CATH LAB, SIERRA FLATLINED.AS I WATCHED, MY KNEES STARTED TO BUCKLE. TEARS WERE STREAMING DOWN MY FACE. I WAS SHAKING.ANOTHER MOM WHO I DIDN’T KNOW WELL, STOOD WITH ME AND OFFERED SUPPORT.HER NAME WAS MICHELLE. SOMEONE BROUGHT ME A CHAIR. THEY CALLED MY SISTER. THE DOCTORS WOULD GET A HEART BEAT. WHEN THEY WOULD STOP WHATEVER THEY WERE DOING SIERRA WOULD FLAT LINE AGAIN. THE DOCTORS TRIED A FEW TIMES. THEY ASKED ME IF I WANTED TO SEE HER. AS I SLOWLY WALKED INTO THE ROOM, A DOCTOR SAID THEY DID WHAT THEY COULD BUT IT WAS TIME TO LET HER GO. JUST LIKE THAT THE ROOM EMPTIED AS FAST AS IT HAD FILLED UP. THEY BROUGHT ME A CHAIR AND ASKED ME IF I WOULD LIKE TO HOLD HER. I COULD BARELY SEE THROUGH THE TEARS I WAS CRYING SO HARD. I HELD HER TIGHT AND BURIED MY FACE IN HER SOFT HAIR. AS PREPARED AS I THOUGHT I WAS, I COULDN’T LET MYSELF ACCEPT IT. A LOT OF THE NIGHT WAS A FOG. I HADN’T SLEPT IN 48 HOURS AND WITH NO FOOD SINCE NOON. AT THIS POINT I FELT WEAK AND NAUSEOUS. THE NURSE BROUGHT ME SOME WATER AND CRACKERS TO SETTLE MY STOMACH.

WHILE I HELD HER I TALKED TO MY SISTER AND FATHER ON THE PHONE. MY SISTER SAID SHE WAS ON HER WAY. MICHELLE ASKED IF SHE COULD COME AND SIT WITH ME. I SAID YES AND SHE STAYED FOR A WHILE. I NEEDED HER SUPPORT THAT NIGHT. MICHELLE DIDN’T KNOW ME THAT WELL, BUT SHE CARED ENOUGH TO MAKE SURE I WAS OKAY.

I WAS ALLOWED TO STAY WITH MY LITTLE GIRL FOR THREE OR FOUR HOURS BEFORE MY SISTER ARRIVED. I HELPED THE NURSE CLEAN HER UP. WE REMOVED HER TUBES AND GAVE HER A BATH. I EVEN DRESSED HER AND PUT A BOW IN HER HAIR. THE NURSE WRAPPED HER IN A BLANKET WITH TEDDY BEAR ANGLES ON IT. I WAS SO TIRED I WANTED TO SLEEP, BUT I WAS TOO AFRAID THAT I WOULD DROP SIERRA. I LAID HER BACK IN HER BED. I PUT MY ARM AROUND HER AND OUR HEADS TOGETHER AND WE TOOK A NAP; TEN MINUTES HERE TEN MINUTES THERE.

I LAY BESIDE HER AND THOUGHT IT WAS ALL A DREAM. I WAITED FOR HER TO MOVE OR CRY. BUT SHE DIDN’T. SUDDENLY I FELT LIKE I WAS MISSING MY HEART, SOUL OR SOMETHING. MY FAMILY ARRIVED AND EVERYONE HELD HER TO SAY THERE GOODBYES, BESIDES MY SISTER TARA. I KINDA UNDERSTAND WHY SHE DIDN’T. SHE SAID SHE COULDN’T HANDLE IT.

ONE OF THE NURSES ASKED FOR PERMISSION TO CUT A PIECE OF SIERRA’S HAIR FOR A MEMORY BOX THEY HAND OUT TO THE PARENTS. SHE ALSO DID HER HAND AND FOOT PRINTS IN CLAY LIKE MOLD FOR ME. WE STAYED A LITTLE BIT LONGER AND WENT TO PACK SIERRA’S AND MY OWN STUFF. WHEN IT CAME TIME TO LEAVE, I DIDN’T WANT TO. IT WAS HARD TO WALK AWAY FROM HER. BUT I DID. I SLEPT A LITTLE BUT MY DREAMS WERE FULL OF MEMORIES OF HER.

BEFORE WE LEFT FOR OHIO THE NEXT MORNING MARIA CALLED. SHE ASKED IF I WOULD STOP BY THE HOSPITAL BEFORE WE LEFT. THERE WAS ALL OF MY FRIENDS I MET WAITING TO SAY GOODBYE. MY HEART RACED AS I STEPPED OF THE ELEVATOR ONE LAST TIME. AS I WALKED BACK THERE I LOST CONTROL. I SAW HER EMPTY ROOM AND THE SADDENED FACES OF EVERYONE I HAD MET. I HUGGED EVERYONE AND TOLD THEM ALL HOW MUCH I APPRECIATED THEM AND WHAT THEY HAD DONE FOR SIERRA AND MYSELF. IT WAS HORRIBLE. THEY WERE MY SECOND FAMILY AND I HAD TO LEAVE THEM BEHIND. I FINALLY EXCUSED MYSELF AND LEFT BECAUSE I COULDN’T HANDLE BEING THERE ANYMORE.

AS WE DROVE AWAY FROM THE HOSPITAL IT WAS HORRIBLE, I STARED AT IT UNTIL I COULDN’T SEE IT ANYMORE. I STARED QUIETLY OUT THE WINDOW AND THOUGHT OF SIERRA THE WHOLE WAY HOME.

SO, SIERRA NICOLE MAUDLIN PASSED AWAY DECEMBER 28, 2005. JUST THREE DAYS AFTER CHRISTMAS. THE NEXT DAY I MET WITH THE FUNERAL DIRECTOR. HE SAID WE COULD HAVE THE SHOWING ON NEW YEARS EVE, BUT WE WOULD HAVE TO WAIT TILL JANUARY 2, 2005 FOR THE FUNERAL, BECAUSE OF THE HOLIDAY. WE MADE ALL OF THE ARRAIGNMENTS FOR EVERYTHING AND I WENT HOME.

MY SISTER TARA THOUGHT IT WOULD BE BETTER IF I CAME HOME WITH HER. I JUST WANTED TO GO HOME AND BE ALONE. WALKING INTO THE HOUSE WITHOUT HER WAS A WEIRD FEELING. I WAS SUPPOSED TO COME HOME WITH SIERRA, NOT WITHOUT HER.I CALLED A FEW FRIENDS TO LET THEM KNOW WHAT HAD HAPPENED TO SIERRA. MY DAD ALREADY KNEW WHAT HAD HAPPENED; HE AND HIS WIFE WERE ON THERE WAY FROM FLORIDA. THEY WOULDN’T MAKE IT IN TIME FOR THE SHOWING. THEY WOULD BE HERE FOR THE FUNERAL.

I COULDN’T BRING MYSELF TO GO INTO SIERRA’S ROOM. I JUST SHUT THE DOOR AND TURNED AWAY. BEFORE I KNEW IT, IT WAS TIME FOR THE SHOWING. THE FUNERAL DIRECTOR HOSTED THE SHOWING AND DID A WONDERFUL JOB.IT WAS NICE AND SIMPLE, BUT PERFECT. MORE PEOPLE THAN I EXPECTED SHOWED UP, EVEN PEOPLE I DIDN’T THINK WOULD.

AS EVERYONE WALKED OUT AT THE END I GOT TO SPEND MY LAST MINUTES WITH SIERRA. I DIDN’T WANT TO LEAVE HER SIDE BUT I KNEW I HAD TO. SO FINALLY I MADE MYSELF GIVE HER ONE LAST KISS AND WALKED AWAY. I KEPT HER PILLOW AND THE SPREAD OF FLOWERS THAT SAID DAUGHTER ON IT. I BURIED HER ORANGE CAT FROM CINCINNATI’S HOSPITAL WITH HER, SO SHE WOULD HAVE SOMETHING TO PLAY WITH. MY NIECE, BRITTNEY PUT A LETTER WITH THE PICTURE OF THE TWO OF THEM INTO HER CASKET SO SIERRA WOULDN’T EVER FORGET HER.

AFTER THE SHOWING I WENT HOME BY MYSELF. I LET ALL THE TEARS OUT THEN THAT I HAD HELD BACK AT THE SHOWING. IT WAS NEW YEARS EVE; A FRIEND HAD ASKED ME OVER. I WENT I WAS QUIET UNTIL MIDNIGHT WHEN IT HIT ME AGAIN. I STARTED TO CRY ALL OVER. I WONDERED IF THIS WAS WHAT IT WAS GOING TO BE FOR THE REST OF MY LIFE. NOW I KNOW YES IT IS. EVERY TIME I LOOK AT A PICTURE, TALK ABOUT HER OR THINK I HEAR HER CRY, I CRY. I CRY OVER EVERYTHING THAT REMINDS ME OF HER.

THEN THE FUNERAL CAME. MY FATHER AND STEP MOTHER ARRIVED. MY FATHER SAID THE MOST WONDERFUL SPEECH AT THE GRAVE SIDE. HE GAVE ME A COPY TO KEEP FOR MYSELF. THEY STAYED HER FOR A COUPLE OF DAYS.THIS WAS THE FIRST TIME THEY HAD MET HER FACE TO FACE. I ONLY WISH IT WAS UNDER DIFFERENT CIRCUMSTANCES.

SO THAT WAS SIERRA’S STORY I HOPE IT MAY HELP ANYONE THE WAY IT WOULD OF HELPED ME IF I HAD KNOWN BEFORE WHAT I KNOW NOW. THANKS FOR READING AND THE SUPPORT. I MYSELF LIKE TO THINK SIERRA IS IN HEAVEN WITH MY MOTHER WATCHING OVER HER.

THANKS TO ALL THE PEOPLE IN SIERRA’S FAMILY, AND TO ALL MY FRIENDS, INCLUDING ALL THE PEOPLE I MET IN THE HOSPITAL.

1 comment:

Lisa Spencer said...

Your story was beautiful, but sad. I'm sorry you are living without your little girl. I pray that you have found peace and joy in your life again. God Bless You,
Lisa Spencer
Step-mom to Josh, 7, HLHS, doing great by the grace of God
Josh's site: http://www.geocities.com/darylandlisa/
Mom to Alissa, HH, 5.5, and Abbi, HH, 4!

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