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how do i deal with the fact my son has to have a major operation?

Tabitha - posted on 12/17/2009 ( 3 moms have responded )

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hi my name is Tabitha and i have a son who was born in june 2009. he was born 6weeks premature through emergency c-section and spent 4weeks in the intensive care nursery. While he was in the hospital he had many tests done that proved he has craniosynostosis and also pfieffer syndrome. He is such a blessing. Back and forth to doctors we have reached a date for the operation to fix his skull. i have been a blubbering mess since the day he was born. How do i come to terms with the operation. i have alot of family support but it is so hard.

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Morgan - posted on 12/18/2009

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I am so sorry to hear about your son. My daughter was tested for the same thing and I was miserable and scared and no one seemed to understand what we were going through. While in the waiting room during her CT scan (we couldn't even go in with her) we met another couple going through the same thing. I can't tell you what a relief it was to talk to them. Fortunately my daughter's journey with the possibility of craniosynostosis ended there. I would suggest finding a support group. As cliche as it sounds, it really does help to talk with other families, especially when you see those thriving and happy children that have overcome their problems!

Virginia - posted on 12/18/2009

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When my son was 10 months old he had to have open heat surgery. We were in the ICU for 4 days. (he is now 3 years old and has a baby sister!!!!) I too was a mess. The Best thing for you guys to do is to lean on your family and understand that its ok to be a mess!!!! I can't tell you how many times i would look at my son for hours and just cry!!! Like I said just lean on family and try to find a group with people that have gone through the same thing. They will truly know what you are going through. Remember God never gives us more than we can truly handle. If you have any questions please feel free to ask.

Katey - posted on 12/18/2009

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Oh my goodness Tabitha, my heart goes out to you and your family. Although my baby girl (born june 17) has something else, she too needs to have a big surgery (date set for jan 29/10). It is so scary!!! I know what you mean by blubbering mess!!! I don't know what to tell you, as I am finding it difficult as well. Just know that you are not alone. It seems the only thing keeping me sane some days is our routine... baby still needs to be changed, fed etc. I have been trying to look forward to surgery ( silly i know) but then it is behind us. I wish you guys all the luck in the world at such a difficult time. I wish I could be more help.

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