It's time to introduce our little girl. Her name is Dakota Grace and her introduction to the world is going to be so different from her big brother. Dakota was discovered at our 19 week ultra-sound to have Spina bifida, she has myelomeningocele with chiari II malformation, swelling of her ventricles, the lemon head sign and her defect of the spine is at the L4-L5 (the Dr's suspect it goes down further but with imaging, are unsure about that). A lesion means her spinal cord and nerves are exposed to spinal and amniotic fluid causing damage as she grows bigger in the womb mostly resulting in paralysis from that lesion level down. The last month has been an absolute whirlwind, we are now one month later at 24 weeks 2 days...
We have gotten past the initial stage of shock and grief, which I will definitely write about later. It was not actually a graceful or pretty journey, it mostly involved laying on the couch wallowing in my own self pity while eating cupcakes and a LOT of crying. The kind of crying that makes you feel hungover for days. Drews grief was WAY more productive, he finished like every project in our house that he possibly could over those 2 weeks that I was laying on the couch. He mowed the lawn like a Boss, shortest lawn on the block. #boom. Anyways, more about those two weeks later, because 24 cupcakes in one sitting is soooo worth writing about. 
Our local maternal fetal medicine Dr said she thought we were candidates based on passing all the criteria to qualify for Fetal Surgery, it would close up her back and possibly protect her nerves from further damage along with a very high chance the Chiari II would reverse and swelling of the ventricles would decrease. There are only a few hospitals in the country that do the surgery and the one closest to our house seemed the obvious choice. It was an hour and a half away, perfect! We knew the risks, we went through all the testing from an MRI on her brain, a 3 hour ultrasound, psychological, financial... Numerous meetings. It was a rough 2 days but we were so assured that we were "great candidates" we didn't even stress about the surgery. It all seemed perfect... The last day 15 minutes before our last meeting (you know, after we told our family we were a go for the surgery that next Monday) one of the surgeons came out to tell us that we were no longer candidates and it was too risky. Rug pulled out from under us... It felt worse than the first day of diagnoses. We had so prepared ourselves, family, cancelled vacations, my mom cancelled her wedding vow renewal... It was devastating. The hospital gave us the information on states that we could abort at a later date (because our little girl was going to have "many complications") or come back and deliver c-section in January. We got up and walked out and cried (well I cried, Drew was busy owning the Philly roads at top speed, because like I said Drew owns his machines during times of crisis) the whole way home, and I forced him to stop for more cupcakes.
About 48 hrs later I picked up my broken self and decided that if one neurosurgeon said no, would another neurosurgeon see our case slightly differently? We decided it was worth a try and it had to be fast we were at 22 weeks and the surgery has to be performed before 25 or 26 weeks depending on the surgeon. Just in case we were told no, we scheduled our delivery at the hospital by our house, tons of babies are born without fetal intervention and are perfect in their own way. We also knew we didn't want to give up just yet, we sent our imaging and records to a couple of other hospitals a few said no, because they were on the fence and didn't want us to fly out and be disappointed. We started to get back on track with our normal days of working and schedules and just when we thought that was it. Friday the 17th, Denver called and asked if we would fly out for an appointment on Monday. We figured it couldn't hurt, we knew we still wanted to take the risk for the surgery since Dakota has been moving her legs all the way to her feet and the swelling on her brain had become slightly larger, only to get worse over the rest if the pregnancy.
The trip to Denver has been nothing short of signs that this is the right path. I found a direct flight for $107, my mom who works around the country and her work sends her anywhere from Hawaii to Alabama just happened to start a 3 week stay in Denver the same day as our first appointment. Her work has graciously moved her hotel across the street from the hospital. I can see her hotel room from where my recovery room will be and after 3-5 days in recovery I'm allowed to stay on bed rest at her hotel since it's so close! If all goes well I will be sent back home on bed rest about 2 weeks after discharge. We did all of our appointments and they have deemed us candidates if we would like to go ahead with the surgery, we sign consent forms this afternoon. I will receive my second steroid shot, in case she is born during the surgery she has a better chance of surviving. Prematurity is a big risk (we have prayed about heavily) but we are praying that she stays put. We have decided the benefits outweigh the risks and have decided this is the right decision for our family, no matter the outcome. We are not going to play the what-if game, decision made.
If the surgery happens (you see I say IF, because the rug was pulled right before this meeting last time) it is tomorrow at 7:30am. Please pray for our little Dakota and the strength for me in recovery. I hear the first few days are rough and to be honest, I'm nervous. Every week she stays put is another milestone of growth. 37 weeks Jan 19th is our goal. Pray for that, pray for her.
And because no runner family can come to Colorado and not do some sight seeing... We took Dakota on her first altitude walk on Magnolia road. Got to build those lungs!
