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Raising Special Needs Kids Raising Special Needs Kids

Spina Bifida Update

Posted by on Sep. 4, 2013 at 1:02 AM
  • 17 Replies

Hi everyone, it's me again. I'm the one who posted about Spina Bifida awhile a couple months ago. For those who haven't read it or forgot here's the link to refresh your memory so you all fully understand.

http://www.cafemom.com/group/115120/forums/read/18868510/Spina_Bifida


Anyways, I'm nearing the end of my pregnancy now. I'm currently 32 weeks. I'm so overwhelmed with so many emotions. I'm happy to finally get to hold my baby girl, and not have to be so paranoid everytime my stomach or something hurts thinking something is wrong. But at the same time, I'm really nervous and even a little scared.

I have to get a c-section done. I never had any type of major surgery, so it's pretty scary thinking about. I have no idea what to expect. I keep having dreams of it happening, and the doctors taking my baby away as soon as they get her out, and not letting me hold her for a couple days until after she has her surgery. I'm not sure if that's exactly how it's going to work, but if it is then I'm going to be heartbroken. The last thing I want is to not get to hold her before they transfer her to Phoenix Children's Hospital and not be able to see her for a little while.

I've fully accepted the fact that she has spina bifida now. The doctor visits are getting easier to go to without balling my eyes out. And even though they told me that she's most likely going to need aid with walking like needing leg braces, I'm completely okay with that. In fact, it doesn't even bother me. I accept her flaws, and love her dearly already. Whether she can walk or not, I won't love her any less.

I'm just wondering if there's any moms out there who already went through what I'm about to go through. Who can give me advice on what to expect getting a c-section, and having my child go through surgery as soon as she's born? It'd be even better if there are moms out there with children who have spina bifida as well that can maybe help give me some hope or brighten up my night. My daughter is a L5, what can I expect?


CafeMom Tickers
by on Sep. 4, 2013 at 1:02 AM
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Replies (1-10):
mlogsdon
by on Sep. 4, 2013 at 1:13 AM
1 mom liked this

I have not experienced what you will, but I think youre doing great. Trying to prepare yourself and get all the information you can ahead of time is a good idea. I think you'll do a fantastic job :)

I held my son for about 5 minutes the day he was born, and then he was sent to a NICU two hours away while i was not released to follow until the next day. He spent two weeks in the NICU, and then a month later had surgery and spent another 2 weeks in the hospital. Its rough, it's really hard to be unable to hold and bond with your baby right away, but sometimes that is what the baby needs. What momma needs comes second ;-) 

darbyakeep45
by Darby on Sep. 4, 2013 at 5:52 AM
1 mom liked this

Hugs mama!  Thanks for the update:)

My was born via c-section, I got to kiss him and he went straight to the NICU where he stayed for 3 weeks.  He didn't have any kind of surgery though, so I don't have experience with that part.  

Momof4AEMW
by Gold Member on Sep. 4, 2013 at 11:05 AM
1 mom liked this

While my situation was not the same, I have experienced much of what you will go through.  I delivered 27 week triplets a few years back after an emergency c-section.  They were taken right to the NICU, and I did not see them until day 2 due to my health complications (not the c-section).  It is surgery, you will need time to recover, and you will need to do what your doctors recommend for your health while wonderful doctors are taking care of your new baby.  But you will heal, and it will be ok.

With my kids being born at such an early gestation, they had to lie completely flat for at least 7 days before they could have an ultrasound to determine if they had bleeds in their heads; meaning no one could hold them until cleared.  My girls got cleared around 10 days, my boy had the bleed so had to remain flat for another 9 days or so.  Even when we were allowed to start holding, it was for like 10 minutes at a time and not what holding would seem like cuddling a new baby, but a baby full of blankets, tubes on a giant pillow sitting on your lap.  And it would not happen every day, sometimes 5-7 days between when they could be held due to health concerns or over stimulation.  We also had 2 heart surgeries at 2 and 3 weeks old so had to go back to the no holding for a while.  But you can see them, and you know they are getting what they need to heal and grow, you need to heal too. 

I did not feel any less bonded to them, or them to me, than when I'd had my 1st son who stayed in my room the whole time and went home from the hospital with me.  Even my daughter who could not hear my voice, knew when her mom was the one there touching her compared to a doctor or nurse.  You could watch on the monitors as her heart rate relaxed and she would rarely alarm when I was in the room.  They just know.  They know you are the mom.  Your daughter will too, even if you're not with her as quickly as you'd like, she'll know.  And you will both be bonded.  Take care of your health, let the docs take care of her.  It will be ok.  You're going to be a great mom.  Just try to enjoy the last weeks of your pregnancy, and know that many exciting things are still yet to come.  Even if they don't happen on the timeline you plan or think they should, it will be just as amazing and exciting when they do happen.  My daughter did not walk until 4, and  it was just as amazing, if not more so, than if she'd done it at 1 when would be more typical.  And we're still waiting for her first words, now 5.  And it will be just as wonderful when she's ready to say them.  So just enjoy your baby, she's going to be amazing.

Sadmomma246
by on Sep. 4, 2013 at 11:30 AM
2 moms liked this

Hi MizzMathers, my name is Rachel and I was born with spina bifida myself 33 years ago so if u would like somebody to chat with, feel free to send me a friend invite or a message! you rock

mandee1503
by Amanda on Sep. 4, 2013 at 12:27 PM

C-sections are pretty straight forward. You will get to see her and touch her. Then they will take her to the nursery while you are in recovery for a bit. Do they want to do her surgery right away? If not you will probably get to see her a little more and hold her after you wake up. Good luck. 

letstalk747
by Joy on Sep. 4, 2013 at 1:18 PM

nice

Quoting Sadmomma246:

Hi MizzMathers, my name is Rachel and I was born with spina bifida myself 33 years ago so if u would like somebody to chat with, feel free to send me a friend invite or a message! you rock


MizzMathers
by on Sep. 5, 2013 at 12:37 AM


Aww, sharing with me how babies already know who their mother is bought tears to my eyes. Your strong for going through that. I don't know what I would do if I couldn't hold her for days at a time, and only for 10 minutes. Plus having your babies have heart surgeries and what not, that's just heartbreaking. I wish little babies didn't have to experience things like that, that's what gets to me the most. Thank you for sharing your story! It meant a lot.

Quoting Momof4AEMW:

While my situation was not the same, I have experienced much of what you will go through.  I delivered 27 week triplets a few years back after an emergency c-section.  They were taken right to the NICU, and I did not see them until day 2 due to my health complications (not the c-section).  It is surgery, you will need time to recover, and you will need to do what your doctors recommend for your health while wonderful doctors are taking care of your new baby.  But you will heal, and it will be ok.

With my kids being born at such an early gestation, they had to lie completely flat for at least 7 days before they could have an ultrasound to determine if they had bleeds in their heads; meaning no one could hold them until cleared.  My girls got cleared around 10 days, my boy had the bleed so had to remain flat for another 9 days or so.  Even when we were allowed to start holding, it was for like 10 minutes at a time and not what holding would seem like cuddling a new baby, but a baby full of blankets, tubes on a giant pillow sitting on your lap.  And it would not happen every day, sometimes 5-7 days between when they could be held due to health concerns or over stimulation.  We also had 2 heart surgeries at 2 and 3 weeks old so had to go back to the no holding for a while.  But you can see them, and you know they are getting what they need to heal and grow, you need to heal too. 

I did not feel any less bonded to them, or them to me, than when I'd had my 1st son who stayed in my room the whole time and went home from the hospital with me.  Even my daughter who could not hear my voice, knew when her mom was the one there touching her compared to a doctor or nurse.  You could watch on the monitors as her heart rate relaxed and she would rarely alarm when I was in the room.  They just know.  They know you are the mom.  Your daughter will too, even if you're not with her as quickly as you'd like, she'll know.  And you will both be bonded.  Take care of your health, let the docs take care of her.  It will be ok.  You're going to be a great mom.  Just try to enjoy the last weeks of your pregnancy, and know that many exciting things are still yet to come.  Even if they don't happen on the timeline you plan or think they should, it will be just as amazing and exciting when they do happen.  My daughter did not walk until 4, and  it was just as amazing, if not more so, than if she'd done it at 1 when would be more typical.  And we're still waiting for her first words, now 5.  And it will be just as wonderful when she's ready to say them.  So just enjoy your baby, she's going to be amazing.



CafeMom Tickers
MizzMathers
by on Sep. 5, 2013 at 12:39 AM

How do the doctors prepare you for a c-section? Are they going to give me a big shot to numb me or give me medicine through an iv? The surgeons want her to have surgery 1-2 days after she's born so hopefully I get to hold her beforehand. I'm not sure if they are going to keep me from holding her because of the lesion on her back or not.


Quoting mandee1503:

C-sections are pretty straight forward. You will get to see her and touch her. Then they will take her to the nursery while you are in recovery for a bit. Do they want to do her surgery right away? If not you will probably get to see her a little more and hold her after you wake up. Good luck. 



CafeMom Tickers
MizzMathers
by on Sep. 5, 2013 at 12:40 AM


Oh wow, that'd be so great! Thank you!

Quoting Sadmomma246:

Hi MizzMathers, my name is Rachel and I was born with spina bifida myself 33 years ago so if u would like somebody to chat with, feel free to send me a friend invite or a message! you rock



CafeMom Tickers
mandee1503
by Amanda on Sep. 5, 2013 at 12:47 AM
Since it's planned you will go into the operating room. They will give you a spinal which will numb you from the stomach down. Then they will come in and so the surgery. It's fast and easy. It takes long to prep and finish then it does to pull the baby out. I think both my c-sections were 25 min start to finish.

Quoting MizzMathers:

How do the doctors prepare you for a c-section? Are they going to give me a big shot to numb me or give me medicine through an iv? The surgeons want her to have surgery 1-2 days after she's born so hopefully I get to hold her beforehand. I'm not sure if they are going to keep me from holding her because of the lesion on her back or not.



Quoting mandee1503:

C-sections are pretty straight forward. You will get to see her and touch her. Then they will take her to the nursery while you are in recovery for a bit. Do they want to do her surgery right away? If not you will probably get to see her a little more and hold her after you wake up. Good luck. 




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