Ultrasound update

We had another US this morning and things seem to be going steady.  One of her ventricles in the brain is still slightly enlarged, but not increasing, comparatively.  She is growing at a steady pace.  She'll soon be packing on some pounds and be busy growing this last trimester.  Her foot that has the issue is becoming slightly more visible.  It definitely has issues structurally and it is hard to tell if there are even toes on it at this point.  :o(  There does not appear to be, but it is still hard to tell since she is so small and they have yet to get really good, clear US pictures of it.  But it definitely has development issues and appears to be slightly deformed, we probably won't know the extent of it until she's born, like many things on this journey.  She did appear to be moving her legs a bit which is great for now, but the majority of damage to the spinal cord usually comes in the third trimester.  We can only hope and pray that any further damage is minimized and she is born with some mobility in her hips and legs. 
We're scheduled for another fetal echo and US in 3 weeks, more out of convenience to make it all one appt instead of multiple ones.  I'm not sure what our schedule and visits will be after that.  We'll be pushing the '2 months left' mark so we'll see where we go from there. Time is flying and I think we need to get started on plans for rearranging some space to make room for our baby girl. 
Big brother Braxton got his crib transformed into a toddler bed on Sunday and he slept like a champ Sunday night, thanks to Grandpa Brown's birthday party/dinner.  This morning about 5:30am I heard him let out a little cry for me and I went in to get him and he wasn't in his bed, but about 2 feet from it on the floor.  I scooped him up and brought him into our bed where he proceeded to fall back asleep for an hour, which was great.  I'm not sure how long he spent sleeping on the floor though.  When I asked him how he ended up on the floor he couldn't remember. I'm keeping a pillow next to the open part of his bed, but it didn't appear to help much last night.  He is excited about the freedom he has to get in and out of his bed on his own though.  He's definitely becoming a big boy and he lets me know he is not my baby anymore. 
Until next time, please continue praying for our little girl and family.  We appreciate all the prayers and thoughts everyone has offered. 

Thanks again,
Angela

Where do we begin?

I thought I'd start this blog to keep everyone up to date on our baby girl's status through the pregnancy. We're 26 weeks pregnant now and our baby girl was diagnosed with Spina Bifida (SB).  It was discovered in our US at 19 weeks on June 29th.  It was overwhelming to hear.  First the diagnosis was for level L4 and it's since been bumped up to L2, which is actually worse and effects the hips.  She also has Chiari II Malformation, which goes hand in hand with an SB diagnosis in most cases.  Her brain ventricles are just slightly enlarged and haven't budged since the first measurement, which is great news.  I've been seeing a Chinese acupuncturist and herbalist who gave me some wonderfully-disgusting tasting tea I drink every morning which is to help with the baby's circulation of not only the blood (energy) but also her spinal fluid, which appears to be helping the ventricles stay steady instead of enlarging, imo.  This will also hopefully help with her fetal development as well.  She does have an issue with one of her feet also, but we can't quite tell what.  At the last US it was difficult to see and the MFM said it didn't look like a standard case of club foot, but maybe a variation.  As she gets bigger and develops more, it may be easier to see in the US's, but if not, we wait and see what we have to deal with when she's born.  The whole pregnancy is basically a 'wait and see' (very difficult).
After reading several different medical sites full of jargon and worst case scenarios, I was lucky to find an SB group on Baby Center.  It is a great group of mom's and dad's who tell you about their experiences and they are all very different.  We really won't know the outcome of our baby girl's spine until she's born, and even then things can change over the years.  I don't even know what to pray for, other than the best possible outcome.  I pray she has the opportunity to walk, unassisted or not, but if she doesn't, she'll still be our daughter and I hope she finds happiness in life no matter the outcome.  
Braxton is excited about 'his baby girl' on the way.  I'm not sure if he knows what he's really in for yet. He has a hard time sharing mommy with his buddy Sam (our dog), but I think he's going to be a great big brother once she's home and settled in.  She won't be home for a while after birth though, you never know how long.  We won't even get to see much of her the first few days (which already breaks my heart).  She'll be in the NICU getting prepped for her back closure surgery and then once she's stable and hopefully no other issues set in, she can head up to the Neurosurgery floor in Lurie's and we'll get to stay with her then.  
We are very lucky to have access to some of the best hospital staff and the newest state of the art Children's Hospital in the states, if not the world.  The new location for Chicago's Children's Memorial Hospital just opened in June and it is attached to Prentice of Northwestern, the women's hospital.  We've already been to Lurie's a few times; to meet with the Neurosurgeon and Neonatologist, have a fetal echo, and just yesterday big brother Braxton had his annual echo and heart check up as well.  
Since the diagnosis we've been on an emotional roller coaster, but I think it is finally getting better.  No matter our little girl's outcome, or the challenges she will face, we'll be there supporting her every second of the way.  I've been told by several people that God only gives special children to special parents who he knows can take care of them.  I don't feel very special, but I do feel blessed to be carrying a beautiful baby girl that has been given to us and we'll take her any way she comes.  I know several of you are already praying for us and we ask for any prayers anyone can spare.  We appreciate all of them and all of you.  I'll try and 'pretty up'  this blog later when time permits.  
So much more to share so more is on the way.

Have a wonderful and safe weekend,
Angela