With Princess's type of Birthmark (Port wine Stain) there is a chance that one could have Sturge Weber Syndrome.
When you have Sturge Weber you have a Birthmark on your Brain as well as your face. We were referred to a Neurologist and he wanted Her to have a MRI to be absolutely sure she did not have a Birthmark on her Brain. If one has the Birthmark on your Brain it can cause seizures.
Well This past Tuesday was her apt downtown at a Children's Hospital for a MRI. She could not have any Breast Milk past 3:00 am. So I set my alarm clock and woke her up to feed her at 2:45.
My Husband was the one to take her to her apt. We had no one to watch the other 2 Boys and since we Both could not be there. He was the Man for the job. I am so not good in these situations. He is much better.
My Husband and my Daughter left the house at 5:45 am to get to the Hospital by their 7 am apt. I was texting my Husband the entire time.
At 9:00 am He texted me the "He could use a beer" of coarse he did not have one just just how stressed it was for the Hospital to give her the Anesthesia . I guess it took many tried for them to get a good vein.
When everything was said and done my Husband had to give her a Bottle before they could leave..(good thing she takes the bottle like a champ)
When She came home the Hospital said that She would Probably sleep for about 5 hours strait.
She Pretty much did. I just Held her as Much as I could and was so Happy that She was Home and that in a few short Days we would have closure on weather or not She had Sturge Weber Syndrome.
Wednesday came and went and we still had not herd the Results, so on Thursday Morning I called the Neurologist Nurse and left Her a message basically saying that If it was your Daughter you would want to know as soon as possible. Wouldn't ya know they called us back with in 20 Min and told us the GREAT news that She does Not have her Birthmark on her Brain!
I am eternally Grateful for this answered Prayer and Now we can begin laser treatments to diminish Princess RoRo's Birthmark...Her 1st Laser surgery is scheduled for March 11 and Both my Husband and I will be there with Her!
4 comments:
Such great news!!! Your little girl is so gorgeous. Will be thinking of you all on the 11th! I know it will go great.
I'm so glad everything turned out okay!
That must have been a very difficult day for you. I would've been leaking breastmilk the whole time she was gone, aching to hold, nurse, and comfort her. I am so glad the results were in her favor. She is a beautiful baby!
Congrats on your beautiful baby girl . . . My daughter, now 2 weeks old, was also born with a pws. I found your blog and was hoping you could email me about the few questions that I have for you! It would mean so much to me!!
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