Sunday, November 16, 2008

Hello, finally...

Hi I'm "Liz", and I'm really glad to be joining in with you all here too! I've been reading since the start of the blog, but writing my intro has been the hardest thing for me to do, so that's why it's taken me this long to join! I am the mother of 3. A happy and healthy 6 1/2 yr. old boy, an angel, and a miracle.

We were blessed with our angel in October of 2004. Having her completely changed our lives. Our precious little baby girl was born 13 weeks early under traumatic circumstances, to say the least. Unfortunately, bad medical care played a huge part in our whole story. It's a complicated and painful one to tell, so I'm going to just leave it at that. She lived for 23 cherished days, before passing away due to an infection she got in the nicu. She touched our hearts and changed our whole lives. I truly mean that. We'll always be grateful for all that she brought to our family, so much love. We love you, we miss you N.

Fast forward 2 yrs....gosh, if only I could have fast forwarded time as easy as that! We got a couple of 2nd opinions and a new doctor and I got my cervix stitched up when we got pregnant with baby #3 to keep it from opening prematurely. We hoped that was going to be the worst of things, but I just had a feeling there was going to be more to this next pregnancy than that. At 17 weeks we found out that our new baby, another girl, had spina bifida, hydrocephalus, and clubbed feet. It was really hard to find ourselves on yet another roller-coaster, after such a huge loss before. But, we accepted it, and were hopeful. We really just wanted this baby to live and be with us. At 25 1/2 weeks, her head measurements on the ultrasounds were starting to measure below 5th % which was not typical for SB kids who usually have really big heads because of the excess fluid on the brain. We were sent back to meet with the neurosurgeon we'd seen after the initial diagnosis, who was to do her surgeries at birth. He gave us absolutely no hope, painted a very grim picture of what her life would be like and encouraged us to terminate now, saying "it could be tricky, but it could be done" this far into the pregnancy. How do you ever forget words like that? I wish I could. It was terrible. But, one thing was very clear he was not going to touch our baby! We thankfully, got in for a 2nd opinion with another pediatric neurosurgeon about 3 weeks later, who was so good to us, and exactly who and what we needed. He made us feel that he valued our child's life no matter what, and said, it was way too early to be so pessimistic, and let's just wait and see....It was a long wait.. But, she was born at term which was a blessing in itself. Her first surgery was at 1 day old, to close the opening in her back. And her second surgery was at 4 days old to put a shunt into her head that drains the extra cerebral spinal fluid off her brain. None of it was easy, but we brought our baby home with us 3 weeks later, and she's amazed us all from the very start.

She is our miracle. And nearly 2 now. She is pretty much paralyzed from the hips down, with the exception of being able to kick her legs up when she gets excited or happy, b/c she has the very upper muscles in her legs that do work. (it's really cute and makes us laugh when we see them kick) But, because her spine was open in the womb, those exposed nerves were permanently damaged. So, even though her back was closed at birth, it doesn't change the damage that has occured. She has bowel and bladder issues, but we have things that help w/ that. She's also had surgery to fix her clubbed feet, and wears braces now.

I relate to having lots of doctors and appointments, PT,OT, and Speech... it's not easy some days, there is so much to do and many special needs...but, I too am very grateful to have my child here to hold and love. She has learned to army crawl, and has a little purple wheelchair that she can push herself around in (when she's motivated for both, that is!) She loves to laugh, and play with her brother. In most ways she is very much a typical little girl...but with legs that just don't help her out!I'm glad to be here with you guys, and even though we all have different stories, I know we share many of the same feelings having kids that are "special" and a life that is different from most around us. I love what everyone has shared on this blog so far! Thanks for listening... Liz

10 comments:

Happy in Holland said...

Wow--Welcome, Liz. Your story is amazing. It sounds funny, but it just feels me with warmth reading your story. I think we can all relate to aspects of it, and that is really what brings us together as parents of these special kids. It sounds like you guys have been through a lot, and I truly admire your strength and your ability to keep moving forward. There is something in me that just roots for other parents of special kids. I'm so glad to learn more about you, and I look forward to hearing more! I'm so glad you joined us!

tiptoe mama said...

hooray! So happy to have you here with us! Your story is beautiful. Welcome, welcome! :)

Happy in Holland said...

oops--I have a typo above--that really bugs me. I meant it "fills"....sorry, ladies.

Luke and Erin said...

Those stories are NEVER easy to tell. But I have found that here is an easy place and it helps so much that so many moms can understand. I am happy to have you here. I am fairly new to the special needs and I ask a lot more questions than I have answers for. I hope I can learn from you and you might get a little from me! Welcome!

tiptoe mama said...

a side note to Happy in Holland: my typos drive me crazy too! I know some people delete their whole comment for a typo. But when I see that a comment has been "deleted by the author" it bugs me more. just because I'm so curious to know what was so scandalous that someone thought they had to delete? It has to be something juicy, and exciting right? nope. It's always just a typo. :) hee hee. glad I'm not the only neurotic one out there.

Liz said...

Thanks for the welcome!

Happy in holland, it's ok. Other people's typos never bother me, I knew exactly what you meant and thank you! :)

Thanks for clarifying that too tiptoe mama, I am new to blogging and I thought scandalous things when I saw "deleted by the author." So, now I will just assume typo. :)

Anita Nap said...

Welcome Liz. You sure have been through a lot! I've been reading a woman's blog who lost her daughter recently. Her little girl was 2? and drowned in a jacuzzi. Sad but it's interesting to read how the Mom is doing and how she's working through it.
Cindy is a pro in dealing with Spina Bifida and Hydrocephelus. She's not a regular poster on here (I think she should be) but I am friends with her so I'll email her and tell her to read your post. Her son, Evan (with Spina Bifida and Hydrocephelus) is now 18 (i think?) and doing great. He plays power wheelchair soccer and participates in a wheelchair summer camp..stuff like that.

Cindy said...

Hi Liz,

Your story is just all to familiar to me, even down to the advice to "terminate" the pregnancy because the baby would be a "burden" to the family. Evan has lived for 21 years with spina bifida and hydrocephalus and he is my hero. Plain and simple. You can read a story about his birth here

http://www.spinabifidasupport.com/pricefamily.html .

As Aprilyn says, Evan plays power wheelchair soccer. It is such a great sport. He is an Eagle scout!! He collected used wheelchairs, 130 of them to be exact and his scout troop cleaned them and then they were sent to "Wheels for Humanity" to be repair and then sent overseas to developing countries. It was such a great project.

At 21 years old he is finishing up his last year of school. He will move on to a " day program" of some type in June. He does have some cognitive delays, but that's okay. He is still an amazing young man.
I would be happy to chat with you more if you are ever interested.

Wheelchair said...

Hey, very nice site. I came across this on Google, and I am stoked that I did. I will definitely be coming back here more often. Wish I could add to the conversation and bring a bit more to the table, but am just taking in as much info as I can at the moment. Thanks for sharing.
Chair For Cerebral Palsy Child

Keep Posting:)

Wheelchair said...

Hey, very nice site. I came across this on Google, and I am stoked that I did. I will definitely be coming back here more often. Wish I could add to the conversation and bring a bit more to the table, but am just taking in as much info as I can at the moment. Thanks for sharing.
Recliner Wheelchair Sale

Keep Posting:)