Miles with Grace

Happy Butt Day Dakota (part 1)

I'm not sure how you start a post about surgery, I mean how do you gently roll into "today I was cut open and my baby had her back sewn up" oh, just like that I guess?
October 23, 2014.

Thursday morning myself, drew and my mom showed up at 5:30am to get all the pre-surgery stuff done, things like check in, IV's, hospital gown and an Epidural that I would have for the next 3 days. Everyone that would be in the room during the surgery came and introduced themselves, we would have two surgeons, and a pediatric neurosurgeon for Dakota, a bazillion nurses, anesthesiologist... And for some reason I thought it was really important to have a guy standing by in case a machine broke during the surgery. They assured me they had people on staff to fix machines if they broke, I think drugs kicked in before I could really check on "who" would be doing that job. Good news, if anything malfunctioned I had no idea.
I was nervous through all of the pre-op but I think if you're not nervous during something like that you might need to see a mental health specialist. My nurse was Jamie and she was absolutely the best, she asked us about our son and she immediately knew Dathan's name came from a rebel in the bible... It was a tiny sign that morning that we were going to be ok. Later in the week we found out that her husband was an Eagles fan and that her husband grew up ten minutes from where we lived.

Around 7:30am it was time to go, I'd like to say I hugged and kissed Drew and my mom and said my goodbyes but I honestly had had so much "liquid courage" pumped in my veins at that point that all I remember were the following important details:
1. Jamie my nurse wheeled me in the OR, then held my hand through the whole surgery (ok, I fell asleep holding and woke up holding it. I can't account for the time in between).
2. One of the surgeons waved to me on the way in, he was drinking Starbucks. I gave him a peace sign.
3. They made me move myself from my hospital bed to the operating table, and that's when I started to cry.... Jamie told me to "remember who's in control" I knew what she meant and wiped my tears away.
That was it, the next few hours I didn't have to do much except lay there like a stuffed sausage. I have no doubt I accomplished this with ease. I imagine I had the easy job, now it was the surgeons jobs to be on their game. I'm about to get graphic here and I'm sure some of my medical jargon is not up to par, but like I said, my main job was to "be the sausage." The surgeons made an incision horizontal from hip bone to hip bone about 5 inches below my belly button, pulled my skin up, took out my uterus and flipped it around to make an incision on the posterior portion. They used ultrasound to figure out exactly where Dakotas butt was so that only her lesion would enter the world, get fixed, then head back in the womb. Dakota flashed the world with her butt for 22 minutes on October 23rd. I fully intend on celebrating her "happy butt day" well into her teen years... Butt cake. Sounds delightful, I'll be inviting all her boyfriends for said celebration. I tried to get the surgeons to tell me her hair color, turns out they weren't scoping out important details such as eye or hair color. I suppose I can wait. Anyways, she was patched up, then they sewed me up and after 4 hrs I was on my way to recovery. The surgery went very well and to quote my mom "Amanda, it was like a post football victory. If they weren't professional surgeons I think they would have been chest bumping one another." My mom was a very happy mama, both her baby and grandbaby were out of surgery and doing well!

I know what you're thinking, you can totally see why Drew married me.

Recovery is when I began to play a big part again... Although sleeping through the next 48 hours would have been fabulous. I woke up and Drew and my mom were there, I had never felt that terrible in all my life. They had me on an Epidural and pain meds and magnesium (anti contraction medicine). I did find out that as I was recovering I was very concerned about Dathan, I wanted to know if "Dathan made it to swimming lessons?" I was also making jokes asking if "Dakota was still swimming?" (Humor, if you can't tell is a coping mechanism for me) I was assured many times that both my kids were swimming. I still have no idea why that's what I cared about most?
The next two days I was on an IV of fluids and meds. I was not allowed to have anything to eat or drink because the meds that are used to relax your uterus apparently relax your swallowing and gag reflex making aspirating or choking a very real possibility. The meds also make you feel nauseous with flu-like symptoms. I was hot and unable to open my eyes, I basically just laid for about 48 hours, Drew and the nurses moved me every few hours. I also would not wear a hospital gown, so modesty was out the door. Once I was off the drugs I got my modesty and embarrassment back I no longer flashed the hospital staff. My mom rubbed my feet for hours/days just to help relieve the pain, I had these really awesome compression stockings on with leg compressor sleeves that helped me from getting any blood clots. I vaguely remember most things but at one point I felt really terrible and a bunch of my monitors started going off and the next thing I knew I woke up with about 15 people around me, yelling my name and trying to get me to come back.
The second time it happened I made Drew press the emergency button, and by made it went something like this..."Drew, something's wrong please call the nurse" Drew, my Physical Therapist husband hands me the remote with the call button, as a PT he's always about promoting future independence (which at this point I have a catheter, I'm being given meds and fluids via IV and independence is about 6 full recovery days away) and he says, "press the button Amanda, it's right next to you" I respond in the most polite way I know how moments before I blackout for the second time... "Press the F*%%#!* button" and I hear all the alarms start going off and next thing I know I'm waking up to my entourage of medical staff, I like to keep things dramatic. So, PT Drew stayed away for a bit longer and helpful husband stayed by my bedside for a few more days. In case you're wondering, I apologized to Drew later for cursing at him. Through all of this he was absolutely the best, we laughed later about the whole thing but at the time we were both pretty scared. My mom, who

rarely left my side, got coffee at that exact moment... Let's just say, she didn't leave for anything after that. We were all a little nervous. The doctors did figure out my body was reacting poorly to one of the anti contraction meds and it wasn't just relaxing my uterus, it was relaxing all my other important organs too. Since those were important (you know for living) they lowered my dose and things started to even out. Saturday afternoon they took me off the epidural and the magnesium and I started to feel much better, and by better I actually mean I opened my eyes and sat up. I was finally able to eat a liquid diet, I went big. I ordered chicken AND beef broth, Dathan's not the only rebel in this family. I was able to take meds in pill form and slowly worked to get off my IV's.

This is going to have to be a two part post, stay tuned for awkward intimate details on how my husband, my mom and the night nurse helped me take a shower...if that doesn't bring you back I don't know what will? Also, if you're still reading, impressive.

Introducing our little girl- seems fitting that it's Spina Bifida awareness month

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!