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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>
 

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I'm not familiar with this condition so I have no real words or advice or wisdom, I just wanted to offer a hug. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug"> It's hard when our babies are in pain and even harder when we feel like it may have been something we've caused. I've been there and the guilt was overwhelming. I wouldn't wish that upon anyone and I hope you can let go of any guilt you might be feeling.
 

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oh mama,I am so sorry that you are your beautiful baby girl are going through this.I will keep you in my thoughts and prayers and I hope that they can come up with a sooner date.<img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug"><img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug"><br><br>
BTW/OT but i just had to say,the picture of you and your baby in the sling is gorgeous
 

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I'm so sorry that you guys are having to go through this. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/greensad.gif" style="border:0px solid;" title="greensad"> I understand about knowing that things could be much worse but wanting your child not to suffer and to be perfect, it can really wear on you. I will be thinking of your family in the weeks to come. <img alt="" class="inlineimg" src="/img/vbsmilies/smilies/hug2.gif" style="border:0px solid;" title="Hug2">
 

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Oh, I am so sorry. What a difficult thing to go through, for you and your sweet baby. I will be thinking of and praying for you guys. I hope that the surgery takes away any pain she might be in right now. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug">
 

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<img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug"> i'm sorry that you're having to go through this. it sounds so scary. i'll be hoping you can get a sooner appointment and praying for a speedy recovery by your little one.
 

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I wish you well on your upcoming surgery, and hope your little one comes with no complications! Hopefully you'll get a sooner surgery date and get this all behind you. Please try not to feel guilty. My DD was born at 28 weeks and I went back and tried to think of all the things I could have done differently. I'm not sure babies remember pain the same way we do, so try not to think about what she may have been feeling (I know- easier said than done- I worry about whay my DD experienced in the NICU). <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug">s<br><br>
One of my family members has neurofibromatosis, and I just wanted to correct your statement, incase anyone else searches for NF and your post comes us. Patients with NF have an increased malignancy rate (between 5 and 15%) than the general population. This rate is approximately 2.5 to 4-fold higher than that of the general population. If you look at overall population mortality rates, NF patients tend to die at younger ages, especially those with malignant tumors. But the statement that "NF is fatal" is not correct.
 

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You and your little girl are in my thoughts and prayers. I hope she has a speedy recovery. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug">
 

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I'm so sorry, that sounds so hard to deal with, but I am glad you followed your instincts and carried her.<br><br>
I share your fear of possible ultrasound damage. I had several early ones because I had no idea of when I got pregnant, and I can't help but think it had something to do with my preeclampsia/HELLP.
 

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my baby had to have surgery at exactly 3 weeks old. He had not gained an ounce because he threw up everything he ate. He had a pyloric stenosis. I know its not the same...During the surgery was a horrible wait, but once he was out and keeping food down I was so relieved that the problem had been fixed, and he wouldnt be starving anymore. I hope you feel the same relief when you hold your daughter for the first time after her surgery... that it will be a road to a better life for her.
 

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<img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug"> How hard for you, mama. I'm so sorry that you and your little one are going through this. We will definately keep you in our prayers.
 

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<img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug"><img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug"><img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug"> I'll be thinking of your little one and I hope you get an earlier surgery date. She won't remember the pain, she'll remember everything you've done for her to make it better. Stay strong and don't feel guilty, it won't help either of you.
 

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Love and healing to Baby Sophe <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug"> I hope you're able to get an earlier surgery date.
 

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<img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/grouphug.gif" style="border:0px solid;" title="grouphug"><br>
Sending healing vibes and loving energy your way. Hoping things go well and your baby sails through the surgery with flying colors.
 

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My family is thinking of you during this tough time--praying that the surgery will go smoothly, the recovery quickly and that it will bring Anna relief from her pain.<br><br>
That picture is beautiful.<br><br><img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug">
 

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<img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/greensad.gif" style="border:0px solid;" title="greensad"> I will be praying for your little one and your family. My son was born with clubbed feet, so he had months of casts, a brace, and a small surgery. Nothing like the one poor Anna Sophia will have to have, but it was scary for us so I can imagine how you feel.<br><br>
DS is now 1 year old and he is doing VERY well. He's not walking yet, but that's just because he likes crawling because he can get there faster. lol. His little feet look great and all the months of hard work and pain are paying off. I'm sure that will be the case with you all as well! *hugs*
 

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I just want to say, what a beautiful baby and mama. I am sorry you have to go through the surgery and recovery. It's so hard (I had a baby with cleft lip and palate) and especially hard to wait... I hope you get in before 6 weeks from now.
 

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oh mamma, im teary right now.<br>
first off, let me say, your little angel is BEAUTIFUL! and, i love her toes, any mom would. i can feel how scared you are and i can totally understand. (my older boy got RSV at 2 1/2 yrs and spent 2 miserable weeks in intensive care, we were on the verge of a ventilator when he finally came around) i know its not the same worry at all, but i feel how your heart just hurts for your little girl.<br>
i cant imagine how hard it must be to trust the doctors at this point, but if you are going to aleviate her pain i would say try to go ahead with things. i hope they can get you an appointment asap, waiting is the worst! have you hade more than one doctor check it out? it sounds like they are fairly confident they can help....? hopefully with you getting things taken care of this early, you can reduce the number of surgeries she may have to have.<br>
be strong and try to keep it in your mind that your are doing the best thing, no matter how painful right now.<br>
we will be sending you loving healing thoughts...<br>
adrienne
 

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I would just like to offer you lots of hugs. My DS (7 mos) has brachydactly of the left hand. I know how scary it is. We fortunately do not face surgery (at this point). Please let me know if I can offer you any support.
 

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<img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/grouphug.gif" style="border:0px solid;" title="grouphug"><br>
i will be praying for you and your beautiful daughter. so sorry that she has to experience this. i hope you get an earlier date and that she recovers very quickly!!!<br>
Paige
 
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