This post covers from January until delivery.
On January 27, 2012 I went to a maternal fetal medicine specialist. Earlier that week my OB had called about my 24week sonogram and said that the pressure in my daughter's brain was just a smidge higher than she would like to see and wanted me to go see the MFM doctor to have a better look. She said that I shouldn't be worried, just another set of eyes looking to make sure all was well. That being said, I went alone because my husband had just started a new job. I get there and the experience was a different because the sonographer took a look first and got stuff recorded then I sat on the table and the doctor came in and took a look at what was already recorded then did his own imaging. Let me empasize that my daughter had turned in the 48 hours since her last sonogram and her head(where they were looking) was in my pelvis=lots of pressure(I swear i was bruised for days after!).
After an agonizing 20 minutes of him looking:
Dr says "I have found what has caused the buildup in your daughter's brain."
I say "okay..."
Dr:"your child has something called SPINA BIFIDA, do you know what that is?"
me: "I've heard of it.." (OMG THERE'S SOMETHING WRONG!)
Dr: "blah..blah....blah.<pointing with mouse on images> Most people who have this have something called a Chiari malformation"
me: (tears steadily running down my face) "ok thats a lot to take in.. what does it mean?"
Dr. "blah blah blah blah blah. I'll have the nurse call and see if we can have an MRI done today."
me: "ok."
Dr: " <insert some sentimental statement here>"
I head to the waiting room tears still streaming down my face and find that there are other people sitting out there. I smile at them, hiccup and sit down. (i think they must think I'm some crazy lady who can't compose myself). The nurse comes out and says that the person who normally does in-utero MRI's is on vacation. They will have to call me with an appointment time. Ok i say. By the time I leave the valet guy is gone. I have to wait in the lobby with another woman and her child who had dental surgery for security to come with our keys. I make it all the way to the car then I broke down. My baby. My sweet sweet baby. I manage to call my husband and through hiccups and tears tell him what the Dr. said. I had to drive from Plano all the way to my house(in Fort Worth) during rush hour traffic by myself. Looking back, I had to have had guardian angels getting me home because I cannot recount any of that drive.
Two weeks later we head to have the MRI done. my first ever isn't even on me, but my baby.
Nearly 2 hours later (all the way through Madagascar & starting footloose) I'm done. Whew! they had the Radiologist on the phone looking at the images as they took them and so I got to talk to her when we were done. She said that the baby has something called a Chiari II Malformation which is caused by the spina bifida. Her lesion or myelomeningocele is in her lumbar-sacral region. At this time we cannot determine her leg function because they are bent. Follow up with your doctor.
Ok. Clear descriptions. Time to process and take it in. (much better understanding this go round!)
I go back to my regular OB and she says she had no idea, and had combed every sonogram I had had and couldn't see any signs that something was wrong. We decide that she'll do my care up until the end.
In March we met with the Neurosurgeon and he assured us he'd do his best and jokingly told me to have her at the beginning of the week & not on a Friday so he wouldn't have to come in on the weekend. Har Har.
I also meet with the MFM who will deliver her. We discuss the "plan" & get her C-section scheduled. I couldn't do a normal delivery because the risk of damaging her spinal cord was too high.
Waiting. In Limbo. Know the terms, but what are the effects?
I go for a checkup in April and she said her pressure was high but not too out-of norm high. The risk of taking her early is just as great as letting her go full term with high pressure. The OB put me on maternity leave 3 weeks early (Whole other post) and so i was wondering what the crap i was going to do with 3 weeks of waiting & no work to occupy me. Rest. That's what i did. Just 6 days later She arrived!!! 3.4 weeks too early. NOW What?
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