My Son

[Rabidkiwi]

Hi, I am new here. My son was born 3 weeks ago.
He has a unilateral cleft lip and palate. I had
no idea until he was born. I wasn't shocked or
surprised, but just accepted it. I realized God
gave him to me for a reason. He knew I would be
perfect mother for him. I thank him daily for his
blessings. I am more worried now about his first
surgery in April, on his lip. I can really use
some support and I would really like to chat to
someone who could share their experience with me
and give me an idea of what to expect after the
first surgery. I chat on ICQ and on mIRC, email
me at rabidkiwi@hotmail.com if you would like to
chat with me. All support is greatly appreciated.


Rabidkiwi

[Melanie]

Welcome! I, too, am in your boat. My 9-mo-old, Savanna, was born with Pierre' Robin Syndrome and a soft cleft palate. We are unsure if she will ever undergo jaw sugery, but her palate repair is 2 wks from tomorrow (2/28/00). It is to last approximately 3 hours and she has to stay in the hospital for 4-5 nights. I know there is a muscle that normally attaches to the palate, but because there was no palate it attached to a bone higher up. They will detach the muscle, repair the palate, and then reattach the muscle to the palate. Our surgeon says the muscle is too weak to withstand surgery before 10-12 months of age. She will be 10 months on the 23rd. I'd love for us to support one another. My email address is gopredators@earthlink.com.

[DENISE]

HI I READ YOUR SUBJECT AND REALLY CAN RELATE AND HOPE I HAVE SOME WORDS OF COMFORT, IN 1990 I GAVE BIRTH TO A BEAUTIFUL BABY BOY! HE WAS BORN WITH A BILATERAL CLEFT LIP/BILATERAL HARD PALATE CLEFT, JUST AS YOU I WASNT SHOCKED, THIS WAS THE BABY GOD HAD CHOOSEN FOR ME! HE WAS TRHEE MONTHS OLD BEFORE HE HAD HIS FIRST SURGERY(HE WAS BORN PREMATURE AND THE DOCTORS WANTED HIS WEIGHT UP TO 10POUNDS BEFORE DOING THE SURGERY) I TALK TO THE DOCTORS AND SURGEONS MANY TIMES BEFORE THE SURGERY AND EVEN SEEN BEFORE AND AFTER PICTURES OF BABIES, CHILDREN AND ADULT AND REALLY FELT COMFORTABLE AND PREPARED. WELL THE DAY CAME FOR MY SONS SURGERY, ARRIVE AT TH EHOSPITAL 6:00AM AND OF COUSRE I WAS ALITTLE NERVOUS AND ANXIOUS,WE WENT THROUGH THE MORNING WAITING WAITING FOR THE SURGERY TO GET FINISH AND WHEN THEY BROUGHT ME MY SON, I WAS COMPLETELY OVER WHELMED WITH EMOTION(SOMETHING I WAS NOT PREPARED FOR)EVEN THOUGH I MENTALLY KNEW, HERE THE NURSE BROUGHT ME A COMPLETELY NEW AND DIFFERENT LOOKING CHILD THAN WHAT I SAW 5 HOURS EARLIER, NEEDLESS TO SAY, IT WASNT REJECTION ARE ANYTHING LIKE THAT, BUT THIS CHILD I HAD LOVE FOR THREE MONTHS, DIDNT LOOK LIKE MY CHILD,AND IN MY MIND ,I GUESS I JUST WASNT PREPARED WHAT "MY CHILD" WOULD LOOK LIKE, AFTER SURGERY, AFTER A QUICK MOMENT AND A DEEP BREATH, I WAS COMPLETELY THRILL AND WAS SO THANKFUL! I JUST WANTED TO SHARE, WHICH I HAVE NEVER DONE, MY EXPIRIANCE, WITH THAT FIRST MOMENT, IM NOT SURE IF IT WAS JUST A HUGE SIGH OF RELIEF, BUT IT WAS AN EMOTIONAL MOMENT FOR ME! I GUESS WHAT IM TRYING TO SAY IS:NO MATTER HOW MUCH YOU THINK YOU ARE PREPARED,MENTALLY,BE KIND TO YOUR EMOTIONS! GOOD LUCK AND GOD BLESS, IF YOU WOULD LIKE TO E-MAIL ME, HERE IS MY ADDRESS:ALLUREU8@hotmail.com, DENISE