I'm usually a lurker due to my work schedule, but now I'm on bed rest for the next three months, so I thought I'd make a "formal" intro since I'm hoping to participate on the boards a bit more now that I have time.
Background: I'm 39, live in Texas, and have a 6 year-old son and a little girl on the way. I'm and RN and work in sales in the medical field. Met my DH on Match.com and have been married for 10 years (holy crap, that's a long time!). We have two dogs - Ralph, who I've had for about 13 years, and Curly Q who I rescued about 6 months ago (my DH was not too pleased with me but he's since gotten over it .
So, background on why I'm on bed rest in case you're interested.... After several years trying for #2 and a loss from an ectopic pregnancy, we finally got pregnant with twins through Clomid and IUI. We were super excited, but at a 14 week ultrasound we learned that one of the twins had passed and the neonatologist saw signs of a neural tube defect with the other baby (there's more to the backstory, but I don't want y'all to have to read a novel, lol). After further follow-up, it was determined that in fact our little girl has spina bifida (opening in her spinal column). Those few weeks were some of the hardest weeks that my DH and I have gone through. We had a huge decision to make - whether to proceed with the pregnancy or terminate. It tore me up having to even think about it. After extensive research and meeting with specialists and neurosurgeons at our local Children's Hospital, we ultimately decided to move forward with our pregnancy.
We also went through the qualification process for an amazing in-utero surgical procedure that would close the open defect on her back and help improve her outcomes after birth. Do you remember the picture of the fetus' arm "reaching" out of her mother's womb and grasping the surgeon's hand? That's the same surgery. We were cleared for fetal surgery and had the high-risk procedure about three weeks ago at 22 weeks gestation. All went well. The first few days post-op were a bitch. I was on magnesium sulfate for about three days. It was horrible. Fast forward to now. I'm feeling good, and baby girl is doing great! She has full movement of her legs so far, and the changes seen in the brain with Spina Bifida are reversing. Now my main job is to keep her cooking for as long as I can! There is a high risk for pre-term delivery, but my goal is to get to 37 weeks when they will deliver her via C-section. There are still a lot of unknowns with this pregnancy and with our little girl's future, but we are extremely optimistic and ready for our "new normal". My DS is so excited to meet his little sister!!
Anyway, sorry this did end up being a novel. Feel free to ask me anything; otherwise, I look forward to jumping in and participating more!
Oh, to put a face to the name... Here is a pic of the fam that was taken the day before surgery. Pardon my DH's "rally beard". He has since shaved since surgery went well.
Post by texassmith on Jan 14, 2014 13:07:12 GMT -5
Welcome! I remember you from the local board back on TN. Good luck with everything with your sweet baby girl. You sound like you are so strong and already doing great.
@gypsy... Not a dumb question at all! In most instances, the surgery won't completely cure the spina bifida. Kiddos with spina bifida will always have it. The goal of the surgery is to improve the QOL. The theory is that the spinal cord in a fetus with the open type of SB is exposed to amniotic fluid. As the pregnancy progresses, typically after 26 weeks gestation, the amniotic fluid begins to be toxic to the spinal cord. This can lead to paralysis and bowel/bladder issues. So "babies" who can be seen on ultrasound with leg function early in pregnancy tend to lose leg movement later on in pregnancy. Also, the earlier the surgery is done the better preservation of bladder/bowel function. The surgery will also help prevent babies and kiddos from having to have a shunt placed in the brain to drain excess fluid. Nothing is guaranteed though. Even with the surgery, kiddos can still have problems with mobility, bowel/bladder, etc. We are confident that the surgery will prove beneficial for our little girl!
If you don't already have contact with other SB moms, I have a good friend who has a daughter with SB who I would be happy to "introduce" you too. Her daughter is now a pre-teen, so she's been through it all.
Thanks @jermys! There are some great facebook and online support groups that I have joined. It's great learning of others' experiences. It has helped me to realize that kiddos with SB and their families can still lead a good life even with all of the challenges that come with it. Plus, it helps me to know what I can expect - both best and worst case scenarios.
Do you know the severity of your friend's daughter's Spina Bifida? Is she mobile or in a wheelchair? We're hoping that our little one will be able to walk unassisted, but we're also at peace if that doesn't happen.
We had originally chosen Riley Elizabeth, but when we told my DS, he vetoed it. I tried to bribe him, but he was not having any of it. We ended up letting him choose the name. He chose Emerson. It's actually pretty fitting. When we looked up the meaning it means "brave" and "powerful" which she is definitely going to need to be with some of the challenges she may face growing up.
I love that name! You have a beautiful family. This is a weird(ish) compliment, but, you write very well. It's refreshing for me (in my line of business).
Do you know the severity of your friend's daughter's Spina Bifida? Is she mobile or in a wheelchair? We're hoping that our little one will be able to walk unassisted, but we're also at peace if that doesn't happen.
Hello & welcome! I'm a HS teacher, with a student with SB. She's fully mobile and handles her catheter on her own. No one but other staff members are aware of her condition. She's even on a swim team out side of school.
Wishing the best for your family.
That's great to hear! It's always comforting to hear about success stories. It gives me hope that Baby E can have a great quality of life and will be able to do amazing things!