Eliza's MRI Results :(

emmyloustu · February 2011

As suspected, she has tethered cord. At her age, the cord should terminate at Lumbar (L1) or L2, hers is L3/4. Sh also has a thickened mass of fatty tissue on/around her cord called thickened fillum terminale (sp???). I don't know what that means yet, but it can go hand in hand with tethered cord and has to be corrected. This condition is on the Spina Bifida spectrum.

She has to have surgery to correct these two issues, but before they do that, a dynamic urogenic nerve study of her bladder needs to be completed. Apparently, the region of her spine that is being impacted is the nerve center for the bladder. This study involves a catheter and balloon being placed to monitor her bladder function. This will happen in a few weeks. I am dreading it - she freaks when a dr tries to look in her ears, let alone cath her. Crying Praying that there is no long term nerve damage.

After that, we will have surgical consult. He said the time frame is several weeks to a few months, but assured me that it will all be behind us before the baby arrives in Aug/Sept. Surgery is delicate because of the nerves involved and recovery involves at least 48hrs of total immobilization on her belly.

This now means my current pregnancy is high risk and the chances of this baby having a neural tube defect are higher. My OB is very cautious and said if E's tests indicated tethered cord that she wanted me monitored extra carefully. NT scan and genetic counseling on Tues.

While I am thankful that her condition is correctable and non-life-threatening, I am still a wreck. I can't imagine my baby having major surgery on her spine and being in the hospital for a week Crying

Taking one step at a time. Continued good thoughts and prayers appreciated. Thank you everyone!

DavezWife · February 2011

Oh hon, I was hoping for better news. You know, you have a bright side, and that's great. But don't beat yourself up too much for being sad over this. It's big stuff, and may take some time to digest and process.

We're here for you. You and that little girl... you guys got this ;-)

SparklyCutie · February 2011

Sending good thougths and prayers for Eliza, and hoping that everything turns out ok, on Tuesday...take care of yourself.

CardsfanSM · February 2011

I'm sorry you didn't get better news. But, it sounds like everything is correctable, so that is great. I can't imagine how you're feeling right now though, especially with the pregnancy hormones. Take care of yourself and E. She'll be in good hands.

chocolatechip06 · February 2011

thoughts and prayers coming your way.

choco_lab · February 2011

Just like you said.. one step at a time. Hugs.

roaringrock · February 2011

I'm sorry. that is really hard news to hear. the poor little thing (and poor mama.) hang in there and like you said, one step at a time.

schmoodle · February 2011

I'm so sorry you didn't get better news. I would also be very nervous about the surgery, but will keep sweet Eliza in my thoughts that all goes well. And to add the stress of your current pregnancy and worrying about that now on top of it, you poor thing! Thinking of you all.

malloryo85 · February 2011

Oh no, I am so sorry you didn't get better news

Praying for you and your family.

soxgirlie2476 · February 2011

I work in the OR and we do this surgery for tethered cord frequently. It is scary but once they recover I dont think they have any other issues. The fatty tissue is called a lipoma and as it grows it just pulls on the spinal cord. Please PM me if I can be of any help. You may want to ask the surgeons if they will have neuromonitoring (this is what I do for a job) if order to check the integrity of those nerve roots and what makes what work in your babies legs. We just operated on a 5 month old last week and I hear she is doing great.

Cajunladybug22 · February 2011

She's in my prayers!

armywife76 · February 2011

Oh man, that's tough news to get. I'm so sorry she will have to have surgery. Praying that everything goes as smooth as possible and your NT is perfectly fine. Hang in there.

charmcitygirl · February 2011

Oh honey. I cannot tell you how sorry I am to hear this news. You are a wonderful mommy and that will enable you to get through this bump in the road with Eliza. Just take it ones step at a time. And make sure that you're taking good care of yourself so you can take good care of that sweet little girl.

dana316 · February 2011

Damn. Damn, damn, damnit. I was really, really hoping you would get better news.

I will be prayong that her surgery goes well and her recovery is fast and uneventful.

(((Big, big, big hugs)))

12106mrsmun · February 2011

Lots of [[[HUGS]]] and prayers. We're always here for you.

Mouseygail · February 2011

I'm so sorry that you didn't get better news and that your baby may be affected as well

. Hugs!!

sliz · February 2011

I'm really sorry you have to go through this. I hope little eliza's surgery is a smooth and just a tiny blip. You'll be in my thoughts.

BeccaLandes · February 2011

Wow, that is a lot of tough news to get in one day! I am glad it is correctable, but it is really scary to think of your little baby having surgery and being in the hospital.

smeyer · February 2011

Little Eliza will be in my thoughts and prayers. I'm sorry, hon. I know we were all hoping for better news today. ((Hugs))

JessandJeremy · February 2011

I"m sorry you didn't get better news. Like others said, one day at a time. I know the unknown and the thought of spinal surgery is scary. Just know that we are here for you when you need it.

((Hugs))

muppet.fan · February 2011

choco_lab:
Just like you said.. one step at a time. Hugs.

I'll echo this. You and Eliza are in my prayers.

GreenEyedGal · February 2011

Oh no, I'm so sorry about the bad news. I will pray that her procedure goes smoothly. Stay strong, mama.

leslie&brian · February 2011

I'm so sorry that you didn't get better news

I know we've never met, but you know that I live in the same area as you, so if you need anything at all please let me know. Take care. You will all be in my thoughts and prayers.

njdcgirl · February 2011

Oh, I'm so sorry. I know you thought it was a possibility, but I was hoping it would turn out to be fine. I hope that each step is as easy on E (and you) as possible...and that she gets through this all just fine. ((HUGS))

gabbeyh · February 2011

Aw man, I was hoping for better news. HUGS

Temp848906437505510 · February 2011

Oh, Em, I'm sorry....I know it's not the news you were hoping to hear, but, thank G-d it is correctable!! You and S are strong and you will help E get through this!

preheatedoven · February 2011

I'm so sorry:( Poor baby girl!

dejavu · February 2011

thinking of you and your family during this time.

kimberic · February 2011

Oh my goodness! I'm sorry you didn't get better news. I'll keep Eliza and the rest of your family in my thoughts.

epphd · February 2011

Oh Emily, that is such overwhelming news

It was so hard to see E go through the MRI, I can imagine your fears at more procedures and surgery. Sending you tons of good vibes - you'll get through this.

ladychicago · February 2011

Oh hon....I am so sorry! We are here for you. Please keep us updated! I will be thinking about all of you in the coming weeks and months. (((hug)))

here4u · February 2011

Its good that they were able to finally detect something after a non determining u/s but I'm so sorry that its bad news. HUGS. Kids recover so quickly, and she's young and won't even remember it. What hospital will she be having surgery in?

LMK8605 · February 2011

Sending lots of hugs and thoughts and prayes (and good vibes, and whatever else I can muster) your way. Weeks and months seem like forever now, but think about how fast everything has gone so far. Hang in there! You are doing a wonderful job dealing with such a difficult time.

tapgirl · February 2011

I'm sorry to hear this. I'll definitely keep you guys in my thoughts.

kristinamh6 · February 2011

I'm so sorry that you have to deal with this. You have a great attitude about it all, but it's ok to be scared and upset too. No one wants to see their child go through anything like this. We are all here if you need to talk/vent/cry or whatever else. Continued thoughts and prayers coming your way.

duke'sgirl · February 2011

So sorry

Praying for you all. ((hugs))

jenber77 · February 2011

Oh no, I'm sorry. Of course it's going to be hard to watch your baby go through scary procedures and surgeries! I hope everything goes smoothly and that she's as healthy as can be in a few months so you can put it all behind you. T&Ps for your inside baby, too. *hugs*

FaithRocks · February 2011

I am so sorry that you guys are going through this. I am continuing to pray and hope for you guys!!!

LIAngel · February 2011

(((HUGS)))

JillRock96 · February 2011

Em, I'm so sorry this was not the news we were all hoping for. Praying that everything goes as smoothly as possible. (((HUGS)))

BeachBride2007 · February 2011

Hi- My name is Courtney. I used to frequent this board but have not been on here in a while. My son has Spina Bifida Myelomeningocele(which is the worst kind) He was born with an open spine and had to have surgery to close his spine at 48 hours old and a shunt placed at the same time. He also has no bladder or bowel function. We have been through Several surgeries and our fair share of ups and downs. If you have any questions, I am here!!! Just PM me and I can give you my email address. Goodluck to your sweet baby!! Hope everthing goes well and she doesn't have any major bladder/bowel concerns. I have LOTs of info in those areas if so.

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