WE MET ONE DAY IN SEPTEMBER OF 2000. IT MUST HAVE BEEN "LOVE AT FIRST SIGHT" BECAUSE WE ONLY DATED FOR LESS THAN 3 MONTHS BEFORE WE GOT MARRIED. I WAS 20 AND ROBERT WAS 22. WE KNEW RIGHT FROM THE START THAT WE WANTED CHILDREN. IT WAS AFTER OUR FIRST ANNIVERSARY THAT I FOUND OUT I WAS "EXPECTING" BUT WE LOST THE BABY AT THE END OF JANUARY 2002, AT 10 1/2 WEEKS ALONG.
IN MARCH/APRIL OF 2002 I WAS PREGNANT AGAIN. ROBERT AND I WERE BOTH SCARED AND NERVOUS. THE BABY WAS DUE ON DECEMBER 9, 2002. ON NOVEMBER 23RD, 2002 I GAVE BIRTH TO OUR FIRST CHILD--A SON WE NAMED HUNTER COLE. HE WAS FULL TERM AT 37 WEEKS GESTATION--BUT HE WAS SUCH A TINY LITTLE BUNDLE WEIGHING IN AT 4 POUNDS 13 OUNCES AND 17 3/4 INCHES.
THERE WAS PROBLEMS RIGHT FROM THE START--BUT BEING NEW PARENTS WE DIDN'T KNOW ANYTHING WAS SO SERIOUS. IT ALL STARTED WITH HUNTER HAVING DIFFICULTY FEEDING. HE HAD A POOR SUCK/SWALLOW REFLEX. HE WOULD BE EXTREMELY TIRED AFTER TRYING TO EAT JUST 1/2 AN OUNCE. HE STAYED IN THE HOSPITAL FOR 11 DAYS FOLLOWING HIS BIRTH. I WAS GROWING CONCERNED BECAUSE THE NURSES WANTED HUNTER TO EAT, BUT THEY ONLY ALLOWED HIM ENOUGH TIME ON THEIR WATCHES. IF HE DIDN'T EAT WHAT THEY WANTED HIM TO IN A CERTAIN AMOUNT OF TIME THEN THEY WOULD TAKE HIM AWAY FROM ME AND PUT IN AN NG TUBE TO FEED HIM. IT FELT LIKE TO ME THAT THEY DIDN'T GIVE HIM ENOUGH TIME. SO BY THE 10TH DAY IN THE HOSPITAL I WAS CRYING AND REQUESTING THAT THEY ALLOW ME TO FINALLY FEED MY CHILD. I COULD TELL THAT SOME OF THE NURSES WERE BECOMING ANNOYED WITH ME--BUT I DIDN'T CARE. I WANTED TO FEED MY SON AND BOND WITH HIM. THEY TOLD ME THAT IF I COULDN'T GET HIM TO EAT AT LEAST 1 OUNCE THEN HE WOULDN'T BE ALLOWED TO GO HOME AND THEY WOULD TAKE OVER FEEDING. WELL, HUNTER AND I HAD A TALK AND HE TOOK THE BOTTLE FROM ME. HE TOOK THE RECOMMENDED 1 OUNCE EVERY 2-3 HOURS LIKE I WAS TOLD. HE WAS RELEASED THE NEXT DAY.
BY THE TIME HUNTER WAS 3 MONTHS OLD I NOTICED THAT HE WASN'T DOING THE THINGS THAT I THOUGHT HE SHOULD BE AND HE STILL WAS NOT EATING WELL. HUNTER WAS SUCH A "SNACKER" WHEN IT CAME TO HIS FEEDINGS. HE BARELY ATE 1 OUNCE AT A TIME (EVEN AT A FEW MONTHS OLD) BY THIS TIME HIS PEDIATRICIAN REFERED US TO A PEDIATRIC NEUROLOGIST. THAT DOCTOR DID AN MRI AND WHEN THOSE RESULTS CAME BACK DAYS LATER WE WERE TOLD THAT HUNTER MOST LIKELY HAD CEREBAL PALSY. OK, SO ITS NOT THE BEST DIAGNOSIS FOR OUR LITTLE MAN, BUT AT LEAST WE CAN DEAL WITH THAT. SO FOR THE NEXT 7 OR SO MONTHS WE DEALTH WITH SICKNESSES, INFECTIONS, FUSSINESS AND FEEDING DIFFICULTIES. AT 7 MONTHS OLD HUNTER HAD SURGERY FOR A G TUBE PLACEMENT AND A NISSEN WRAP (THE WRAP IS SOMETHING THAT HELPS AGAINST REFLUX OR GERD)
WHEN HUNTER WAS 11 MONTHS OLD HE BEGAN TO CRY ALL OF THE TIME-AND WE WEREN'T SEEING HIS BEAUTIFUL SMILE ANYMORE. I MENTIONED IT TO HIS PEDIATRICIAN--BUT SHE DIDN'T REALLY KNOW WHAT TO MAKE OF THAT. SO OUR DAYS JUST CONTINUED ON. AT 12-13MONTHS OLD HE WAS ADMITTED TO THE CHILDREN'S HOSPITAL 3 TIMES IN ONE MONTHS TIME. THE FIRST TIME I TOOK HIM TO THE ER, I HAD WALKED INTO HIS BEDROOM AND HUNTER WAS AWAKE BUT LOOKING VERY SICK. I PICKED HIM UP OUT OF BED AND HE WAS TOTALLY LIMP AND HOT. I WANTED SO MUCH TO GET HIM IN TO SEE HIS PEDIATRICIAN BUT IN MY HEART I KNEW THAT I WOULDN'T BE ABLE TO MAKE IT THERE SO I TOOK HIM TO THE NEAREST ER. HUNTER WAS IMMEDIATELY TAKEN FROM MY ARMS AND ALL I HEARD WAS "COLD BLUE" I WAS SO SCARED THAT I COULDN'T EVEN CRY. I WAS ALL ALONE. MY HUSBAND WAS AT HOME SLEEPING (AT THE TIME HE WORKED 3RD SHIFT AND HAD JUST GOTTEN HOME FROM WORK) THE DOCTORS WORKED ON HUNTER FOR HOURS THEN THEY CALLED IN THE HELICOPTER TO TRANSPORT MY SON TO BRONSON CHILDREN'S HOSPITAL 1 HOUR AWAY. THE FINAL OUTCOME WHEN HUNTER WAS RELEASED WAS:DEHYDRATION. SO ONCE WE GOT HOME I UPED THE AMOUNT OF FLUID THAT HUNTER WAS TO RECEIVE.
BUT HE WAS BACK IN THE HOSPITAL 1-2 WEEKS LATER. AGAIN THE OUTCOME WAS DEHYDRATION. NOW I WAS GETTING WORRIED AND UPSET. I WAS PRETTY MUCH TOLD THAT I WASN'T GIVING MY SON ENOUGH FLUIDS. BUT I KNEW I WAS. BY THE 3RD ADMISSION TO THE SAME HOSPITAL I WAS GETTING MAD--I REQUESTED THAT ANOTHER MRI BE DONE ON HUNTER. I AM HIS MOTHER AND I KNEW SOMETHING WAS "WRONG" WITH MY 1 YEAR OLD SON. THE OUTCOME OF THE MRI WAS DEVASTATING. OUR WORLD FELL APART. WE WERE TOLD THAT HUNTER'S BRAIN CELLS WERE DYING AND THAT IT WAS PROGRESSIVE. WE WERE SENT HOME WITH OUR SON TO DIE. HOSPICE AT HOME BEGAN IN MARCH OF 2004 AND HUNTER BECAME A HEAVENLY ANGEL ON DECEMBER 24TH, 2004-A LITTLE OVER 1 YEAR AFTER THE LAST MRI
THE DAY HUNTER DIED WAS BITTERSWEET. WE HAD TO QUIT FEEDING HUNTER ON DECEMBER 18 DUE TO HIS LUNGS FILLING UP WITH FLUID. FROM THAT DAY ON HUNTER SLEPT IN MY ARMS IN MY BED. THE MORNING HE DIED- I AWOKE AT 1-2AM BECAUSE I FELT WEIRD. IN THE DOORWAY WAS OUR CAT (THE PROTECTOR OF HUNTER) HE WAS JUST STARING AT ME AND THE BABY. SO I LOOK DOWN AT HUNTER AND HE IS WIDE AWAKE (I DON'T THINK HE HAD EVEN SLEPT) HUNTER'S EYES WERE RED AND BLOODSHOT. I RESTED MY EYES FOR A FEW MORE HOURS BUT BY 5AM I WAS COLD (IT WAS A WINTER MORNING IN MICHIGAN) MY HUSBAND AND I GOT OUT OF BED WITH HUNTER TO SEE WHY IT WAS SO COLD. OUR HEATER HAD QUIT WORKING. WE CALLED SOMEONE TO COME TAKE A LOOK AT IT. DESPITE THE HEATER NOT WORKING--HUNTER WAS BURNING UP. I SAT IN OUR ROCKING CHAIR WITH HIM FOR A WHILE AND MY BABY TRIED TO CRY--IT SOUNDED SO SAD. BY 7AM I TOOK HUNTER INTO HIS BEDROOM WHERE THE CHANGING TABLE WAS AND TOOK HIS TEMP. IT WAS HIGH--106.6 RECTAL. HIS DIAPER WAS BONE DRY. I KNEW THAT I HAD BETTER GET SOMEONE OVER TO THE HOUSE. FIRST I CALLED THE HOSPICE NURSE SO THAT SOMEONE COULD HEAD OUR WAY. (WE HAD JUST HAD A MAJOR SNOW STORM THE NIGHT BEFORE) THEN I CALLED HUNTER'S PEDIATRICIAN'S OFFICE. WE WERE LUCKY THAT OUR DOCTOR HAD JUST COME "ON CALL" FOR THE DAY. MY FATHER IN LAW HAD COME OVER (BUT NOT IN THE HOUSE) HE WAS SNOW BLOWING OUR YARD DUE TO ALL OF THE SNOW. SOMEHOW EVERYTHING CAME INTO PLAY AS HUNTER WAS GETTING READY FOR HIS HEAVENLY JOURNEY. OUR HOUSE BECAME FILLED WITH PEOPLE. NOT EVERYONE COULD BARE TO WATCH AS HUNTER LEFT HIS EARTHLY BODY--MY MOTHER IN LAW HELPED WITH OUR DOG (WHO HAD BECOME QUITE RESTLESS) MY FATHER IN LAW WAS IN THE ROOM WITH US AND HUNTER--HE CALLED OUR PASTOR AND A FEW MEMBERS FROM CHURCH. WE REMOVED HUNTER'S OXYGEN HOSE. ROBERT CAME IN AND OUT OF THE ROOM. I SAT BY THE CHANGING TABLE WHERE HUNTER WAS LYING. I WANTED SO BAD TO HOLD HIM-BUT I WAS SO SCARED. I HELD HIS HAND AND RUBBED HIS HEAD AND WHISPERED TO HIM HOW MUCH I LOVED HIM AND THAT IT WAS OK TO GO. ROBERT HAD COME INTO THE ROOM AT ONE POINT WHEN HUNTER WAS TAKING REALLY SLOW BREATHS. HUNTER HAD STOPPED BREATHING FOR A FEW SECONDS AND WE THOUGHT THAT THAT WAS IT--ROBERT BLEW IN HIS BABY BOY'S FACE AND HUNTER TOOK IN ONE DEEP BREATH AND THEN I FELT A LITTLE SQUEEZE ON MY HAND AND A SMALL SMILE FROM HUNTER'S FACE AND THEN MY LITTLE ANGEL FLEW TO HEAVEN. HE PASSED AWAY AT 8:58AM. I PICKED HUNTER UP AND CARRIED HIM TO THE LIVING ROOM (WHICH WAS BEGINNING TO FILL UP WITH PEOPLE) AND I HELD HUNTER IN THE ROCKING CHAIR UNTIL THE MORTUARY CAME 2 HOURS LATER TO TAKE HIM AWAY FROM ME FOREVER.
EVEN THOUGH HUNTER HAS GONE TO BE WITH JESUS--WE WILL CONTINUE TO FIGHT FOR A DIANOSIS. HUNTER HAS A 2 YEAR OLD LITTLE BROTHER NAMED GABRIEL. GABE HAS NO DIAGNOSIS. WE WILL NOT GIVE UP ON MY BOYS.
GABRIEL WAS BORN BY C-SECTION ON JUNE 23RD 2006. HE WAS A HEALTHY BABY BOY WEIGHING 6 POUNDS 1 OUNCE AND 17 1/2 INCHES LONG. HE SEEMED TO NURSE REALLY WELL WHILE WE WERE IN THE HOSPITAL. (GABE WAS ONLY IN THE HOSPITAL 2 DAYS FOLLOWING HIS BIRTH)
ONCE HE WAS RELEASED IT WAS A DIFFERENT STORY AS FAR AS FEEDING GOES. HE WAS A "SNACKER" JUST LIKE HUNTER WAS. SO THAT WAS OUR FIRST SIGN. BY 2 MONTHS OLD HE WAS NOT DOING WELL AT EATING OR GAINING WEIGHT SO WE WERE GIVEN THE OPTION OF HAVING GABE UNDERGO THE SAME SURGERY AS HUNTER--TO PUT IN A G TUBE AND DO THE WRAP. DURING THAT SURGERY THERE WAS A SERIOUS COMPLICATION--GABE HAD SYMPTOMS OF WHAT THE DOCTORS CALL MALIGNANT HYPERTHERMIA (WHICH MEANS HIS BLOOD PRESSURE, TEMPERATURE, HEARTRATE ROSE TO DANGEROUS LEVELS IN JUST A MATTER OF SECONDS) GABE SPENT 5 DAYS IN THE PICU BEFORE BEING MOVED TO THE REGULAR CHILDREN'S AREA. BY DAY 6 WE WERE RELEASED.
THE G TUBE MADE A WORLD OF DIFFERENCE IN GABE'S WEIGHT AND GROWTH. BUT HE WAS STILL NOT MEETING ANY DEVELOPMENTAL MILESTONES. HE HAD AN MRI DONE AT 3 MONTHS OLD--THOSE RESULTS WERE GOOD, IT SHOWED A NORMAL BRAIN.
AT 11 MONTHS OLD GABE WAS STILL ONLY LIKE AN INFANT SO ANOTHER MRI WAS PERFORMED--THIS ONE WAS MORE DIFFICULT TO HEAR THAN THE FIRST. I WAS TOLD THAT MY SON'S BRAIN HAD NOT GROWN SINCE HIS 3 MONTH OLD SCAN.
DURNING ALL OF THIS WE HAD BEGUN TO TEST GABE FOR GENETIC DISEASES (WHERE WE LEFT OFF ON HUNTER)
TO MAKE AN INCREDIBLE LONG STORY SHORT---WE STILL DO NOT HAVE A DIAGNOSIS. SO MANY DISEASES/CONDITIONS HAVE BEEN RULED OUT.
I WILL CONTINUE TO FIGHT FOR MY SONS. I WILL NOT GIVE UP. AS LONG AS GABE IS NOT IN ANY PAIN-- I WILL CONTINUE TO PURSUE WHATEVER I CAN.
R E S T I N P E A C E S W E E T H U N T E R
