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
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