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UPDATE ON POST #37<br><br>
Many of the mamas from Sept/Oct DDCs will remember Anna Sophia's foot. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/redface.gif" style="border:0px solid;" title="Embarrassment"><br>
We had our appointment at Children's Hospital yesterday & I wanted to update on what we now know.<br><br><br>
The specialist *thinks* that what she has is NOT related to any more serious disorders/syndromes (like Neurofibromatosis, which is fatal). They will know more when they do the surgery.<br>
Essentially, what she has, is most likely a tumor (but most likely, a benign one). It is probably vascular in nature, which also makes it more risky for surgery.<br>
He wants to surgery ASAP on it...but the 1st available surgery date he figured would be in at least 6 weeks (that's how backed up they are) I will be having someone (his booking secretary) call me with a date in the next few days (we are praying for a sooner date)<br><br>
She WILL be losing her 2nd toe, much of her great toe & much of her foot.<br>
It will be done under a general (which he said, at this age is not without risk) at Children's. He said it would be extremely painful for quite sometime after. (But they will give her good narcotics for that)<br>
He *hopes* (but can't guarantee) that by doing this first surgery (& there definately will be multiple surgeries) she will be able to learn to walk around her first birthday.<br><br>
He assurred me that this definately has been causing her significant pain, (which I had suspected) & explains why she has been so "sensitive" (fussy, difficult, whatever you want to call it) I'd cry too if I were in constant pain. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/greensad.gif" style="border:0px solid;" title="greensad"> It makes me sick to think of what she would have been feeling if I hadn't followed my instincts to carry/wear her all the time. How awful for her if I'd simply chalked it up to her being a difficult baby & ignored her cries.<br>
Poor thing. She has adjusted so well, too. She really just wants to be "lovey-d" (comforted) all the time.<br>
I knew...I knew in my heart the night she was born (she was born at 3:00 in the afternoon, we brought her home 3 hours later) when she cried for hours...<br>
Newborns (at least in my experience) don't cry for hours & hours. They sleep.<br>
I knew that the amount of time she spent crying was not typical, even of a baby with "colic" (not that having reflux helped either)<br><br>
I'm scared, sad, worried. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/greensad.gif" style="border:0px solid;" title="greensad"><br>
About surgery. About recovery. About her future.<br>
Not that only having 4 toes & a scarred foot is a big deal in the grand scheme of things (I know lots of people who've had babies with much more serious problems). You want your baby to be perfect...at least have perfect health, YKWIM? I don't want her to feel pain. Although, most religions believe that it is suffering which brings us closer to God/Buddha....I still don't want her to suffer.<br>
And I feel guilty. Although the doctors have said that her foot is not linked to anything...genetic or that the mother has done/not done...I can't help but question the 22 week ultrasound. 3D...almost an hour...something about it just doesn't sit well in my soul...if I could go back in time I would have refused both ultrasounds, especially the 3D one. If we ever (although we are planning NOT to) had another baby I wouldn't even consider having an ultrasound.<br><br>
Okay...this is long & I'm rambling now. Thanks for letting me dump that. I needed to have someone "listen"<br><br>
Oh yeah...<br><b><span style="font-size:large;">PICS</span></b> for anyone who isn't familiar with her foot.<br><a href="http://img.villagephotos.com/p/2004-11/898951/leftfootmarch15.jpg" target="_blank">LEFT FOOT</a> <a href="http://img.villagephotos.com/p/2004-11/898951/foot.jpg" target="_blank">left foot</a> <a href="http://img.villagephotos.com/p/2004-11/898951/feet.jpg" target="_blank">BOTH FEET</a> <a href="http://img.villagephotos.com/p/2004-11/898951/KateAnnaSophesfeet.jpg" target="_blank">foot compared to 4yo sister's foot</a> <a href="http://img.villagephotos.com/p/2004-11/898951/pslingkiwi2.jpg" target="_blank">MAMA & BABY SOPHE</a>
Many of the mamas from Sept/Oct DDCs will remember Anna Sophia's foot. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/redface.gif" style="border:0px solid;" title="Embarrassment"><br>
We had our appointment at Children's Hospital yesterday & I wanted to update on what we now know.<br><br><br>
The specialist *thinks* that what she has is NOT related to any more serious disorders/syndromes (like Neurofibromatosis, which is fatal). They will know more when they do the surgery.<br>
Essentially, what she has, is most likely a tumor (but most likely, a benign one). It is probably vascular in nature, which also makes it more risky for surgery.<br>
He wants to surgery ASAP on it...but the 1st available surgery date he figured would be in at least 6 weeks (that's how backed up they are) I will be having someone (his booking secretary) call me with a date in the next few days (we are praying for a sooner date)<br><br>
She WILL be losing her 2nd toe, much of her great toe & much of her foot.<br>
It will be done under a general (which he said, at this age is not without risk) at Children's. He said it would be extremely painful for quite sometime after. (But they will give her good narcotics for that)<br>
He *hopes* (but can't guarantee) that by doing this first surgery (& there definately will be multiple surgeries) she will be able to learn to walk around her first birthday.<br><br>
He assurred me that this definately has been causing her significant pain, (which I had suspected) & explains why she has been so "sensitive" (fussy, difficult, whatever you want to call it) I'd cry too if I were in constant pain. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/greensad.gif" style="border:0px solid;" title="greensad"> It makes me sick to think of what she would have been feeling if I hadn't followed my instincts to carry/wear her all the time. How awful for her if I'd simply chalked it up to her being a difficult baby & ignored her cries.<br>
Poor thing. She has adjusted so well, too. She really just wants to be "lovey-d" (comforted) all the time.<br>
I knew...I knew in my heart the night she was born (she was born at 3:00 in the afternoon, we brought her home 3 hours later) when she cried for hours...<br>
Newborns (at least in my experience) don't cry for hours & hours. They sleep.<br>
I knew that the amount of time she spent crying was not typical, even of a baby with "colic" (not that having reflux helped either)<br><br>
I'm scared, sad, worried. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/greensad.gif" style="border:0px solid;" title="greensad"><br>
About surgery. About recovery. About her future.<br>
Not that only having 4 toes & a scarred foot is a big deal in the grand scheme of things (I know lots of people who've had babies with much more serious problems). You want your baby to be perfect...at least have perfect health, YKWIM? I don't want her to feel pain. Although, most religions believe that it is suffering which brings us closer to God/Buddha....I still don't want her to suffer.<br>
And I feel guilty. Although the doctors have said that her foot is not linked to anything...genetic or that the mother has done/not done...I can't help but question the 22 week ultrasound. 3D...almost an hour...something about it just doesn't sit well in my soul...if I could go back in time I would have refused both ultrasounds, especially the 3D one. If we ever (although we are planning NOT to) had another baby I wouldn't even consider having an ultrasound.<br><br>
Okay...this is long & I'm rambling now. Thanks for letting me dump that. I needed to have someone "listen"<br><br>
Oh yeah...<br><b><span style="font-size:large;">PICS</span></b> for anyone who isn't familiar with her foot.<br><a href="http://img.villagephotos.com/p/2004-11/898951/leftfootmarch15.jpg" target="_blank">LEFT FOOT</a> <a href="http://img.villagephotos.com/p/2004-11/898951/foot.jpg" target="_blank">left foot</a> <a href="http://img.villagephotos.com/p/2004-11/898951/feet.jpg" target="_blank">BOTH FEET</a> <a href="http://img.villagephotos.com/p/2004-11/898951/KateAnnaSophesfeet.jpg" target="_blank">foot compared to 4yo sister's foot</a> <a href="http://img.villagephotos.com/p/2004-11/898951/pslingkiwi2.jpg" target="_blank">MAMA & BABY SOPHE</a>
