Post Op

We arrived at Baptist hospital at 6 am September 12th, checked in and then nervously waited to be called back. Once we got in the OR prep room things happened pretty rapidly, doctors were waiting on us. Like seriously when does that EVER happen? Like never but hey, I'll accept it. Adalynne got her own little baby hospital gown and even little hospital socks (yes they even had teeny little skid resistance grippes on the bottom.) Cause ya know, all these 2 month olds running around sliding all over the hospital need them. Back to the hospital gown for a second. Most of you that know about my grandmother I lost and know about her love of elephants that we share.  She unexpectedly passed a few years ago and my heart has never been the same. Going through this without her here is so hard but I always find peace in knowing once Adalynne goes my grandma will take care of her. Well, Adalynnes gown had pink little elephants and dinosaurs all over it. She always gives us a sign she is with us (and Ian has a massive love of dinosaurs.) So, I took my signs as a good thing and calmed a wee bit. Her surgery started at 7:30 and only lasted a little over an hour. Once she was out of recovery she was put into the PICU.  She had a seizure after she was put into the room and they placed a nose trumpet in to open her airway.  She has had multiple seizures and breathing issues since we have been here.  I've learned that she has been having a whole lot more seizures at home that I didn't recognize to be a seizure. So that's a little upsetting to know that she has not only had more seizures but, they happen multiple times a day. As of right now she has been taken off the IV morphine and been getting her normal oral solution that we have at home. She did eat 3 oz finally, not out of a bottle but back to the feeding syringe we use to use. She is being transferred to the intermediate care unit which is good news and a step down from intensive. Hopefully we will get to go home tomorrow! Until next time my sweet souls, love you all!! 

***FORWARNING*** there is a picture of her incision just so the weak stomached can be prepared. 

Thanks grandma, love you

Surgery day!

Hello everyone! Tomorrow is the day!  I’ve been waiting and “preparing” myself for this brain surgery since I was pregnant.  We went in this morning to do all the pre-op stuff and answer all my questions and I’m very proud I only cried once during both appointments. Something about talking to an anesthesiologist that really makes you feel something like; holy shit, this is seriously happening.  I’m don’t think I should even attempt makeup tomorrow I think it’s going to be basically worthless haha. We learned we have to be there at 6 for her surgery to start at 7.  It should take an hour and half maybe more and afterwards she will be admitted to the PICU or pediatric intensive care unit for at least 24 hours.   
Even though my daughter has a terminal condition called Hydranencephaly she has developed hydrocephalus which is the reason for this surgery. Hydrocephalus is a condition that an excess of cerebrospinal fluid is on the area around the brain causing head growth and pressure on the brain. Over a million people in the United States suffer from hydrocephalus.  Hydrocephalus is the leading cause of brain surgery in children and 1 to 2 of every 1,000 babies are born with this condition. September is Hydrocephalus Awareness Month, so I ask that all my readers wear blue tomorrow to not only support my little warrior but try to bring awareness to this condition that affects a large part of our population.  For those of you that use Instagram, Twitter or Facebook post pictures of your blue tomorrow and use the hashtags #amshydro  and #hydrocephalus to raise awareness and so my family and I can see all your blue! I love you all and appreciate all your beautiful messages sent to us each day. 
P.S.
For any others who want to get more information on hydrocephalus or to donate to help find better treatments or cure for this condition please go to http://www.hydroassoc.org/ 
Much love everyone! Let’s hope for smooth sailing tomorrow! 

Today, waiting on the doctor

<3 <3

Neurosurgery smerosurgery

We have some great news! Adalynne’s surgery has been set for Friday the 12th of September. I have so many mixed emotions about this. On the one hand I’m happy and relieved we got everything figured out and this is going to be able to better her quality of life. The other hand my almost 2 month old little warrior is having brain surgery, who the hell wouldn’t be scared out of their mind? We have a meeting Thursday morning with the surgeon and anesthesiology to go over everything in intense detail and answer all our questions. Friday we must arrive at Baptist hospital at the lovely hour of 5:30 am! Wohooo! I think I need a portable coffee machine that fits in diaper bags, hmmm maybe I’ll invent said object one day... Who am I kidding I can’t even write on this blog weekly as much as I try. Her surgery will "start" at 7 but lets not kid ourselves neurosurgeons run on their own time.  For all my little prayer warriors out there and the wonderful souls sending good vibes our way as I say every time, thank you. And give us a little extra this week and hope we don’t come into any mishaps or infections. I know my little warrior is a fighter and probable will handle this wayy better than I will.  The more I allow myself to sit and think about it the more nervous and churned my stomach and heart become sooo good morning everyone, have a super fantastic day! Love to you all!!