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!!

Surgery, for both warriors

So as some of you who are friends with me on my facebook probably have seen mentions of a meeting with a neurosurgeon that I had. This meeting was to discuss the options for having surgery to get the water in Adalynne's head under control.  Before we thought a shunt was the best options but after meeting with the doctor we have decided to do a surgery called Chorord Plexectomy, I call it the CP because no matter how hard I try I NEVER get those words correct. Nonetheless, what happens is the doctors go in and remove a piece of bone to get to the part of the brain that produces the cerebral spinal fluid and they clamp it and cauterize it. The fluid is made in several areas of the body but this will dramatically reduce the massive amount being made in her brain cavity. I'm waiting to see if hospice/medicaid will cover this and then we will be having this done ASAP. The longer we wait the more risk to her the water becomes. Now, I need to make something clear to you saps out there(no hard feelings) this isn't going to "fix" my daughter. I have finally allowed myself to see the MRI done after she was born.... and unlike what I had said earlier about missing a third of her brain, well, its the opposite. She has a third and is missing the rest. Knowing she has this is one thing but really seeing her picture next to a "normal" brain is.. breathtaking in the bad way.  I know the fate of my child, but I don't need people telling me to believe a miracle will happen. She is the miracle, its already happened I got her out of the delivery room, enough said. This surgery will help make her life more comfortable, her head is rapidly expanding and will start to cause much more issues and make caring for her way more challenging.  Its already effected her ability to hold her head and fit in clothes and holding her is more about having quick reflexes to catch her head when it swings from the weight of the water. Adalynne is still moving and luckily has the part of her brain that allows spontaneous movement so hopefully that will somewhat continue. She is now 9 lbs 2 ozs!! Feedings come and go with the challenging aspects I've already mentioned in previous posts. We haven't had many spells needed morphine or breathing issues recently. Had pretty good week with Adalynne. Just my health has decreased but hey, who needs a gallbladder anyway?? Lame organ with its bile storage and whatnot. hahah I'm on the track to recovery and I'll  be better in no time and able to hold her normally again after weeks of pain and now 5 more scars to this vessel of stories.
Time for a bath and snuggles with my warrior and our song All Of Me

Goodnight all, have a great rest and happy day. love to you all

P.S. she just threw up laying on my chest, oh the joys of motherhood. Ha gotta love it!

Great visit 

First park visit

Month 1!!

Whew, we have made it to one month!!! Each day that passes I breathe a sigh of relief.  Adalynne is doing very well most days.  She still has tremors and does stop breathing also has had some seizures. On top of those things we have started to see her head is started to get bigger in the front from an excess of water.  We will continue to watch the growth and eventually decide if surgery is a best to help ease her pain.  Each day is different with her feedings I continue to pump and give her a bottle because she has trouble latching on.  Some days her muscles do just fine but it’s slowly starting to be more challenging.  A big thing that happens with children with this condition is the muscle decay and eventually the muscles will draw up like children with cerebral palsy.  I have started to stretching and range of motion work with her to hopefully prevent this from occurring since it can be extremely painful.  Even got a baby yoga book which I am ecstatic about doing with her!  
 There is an issue I would like to touch on. I have had a huge amount of people who have told me they are praying for me and keeping me in their church groups, I appreciate this to an infinite amount. But, one thing I need you all to realize is… there is no hope for my daughter. And as I type those words my throat clenches and I blink back tears but, it’s the truth. And as much as I know it's peoples best intention hearing someone say hoping for a miracle is just a stab in my heart because I know the real truth.  No amount of hope, strength or prayer will give my child a brain. She is missing over a third of it and medicine is not at the point where a brain transplant is available.  What I ask of everyone is to pray for my family and friends the strength to get through each and every day.  That when the day comes that my sweet warrior leaves to go have her great grandmother in heaven teach her how to dance and hold her hand since I won’t be able to anymore that my family and I can heal and rebuild ourselves and our lives in her honor.  That at those times when I sit in the shower and cry uncontrollably I have the strength to stand up dry myself off and go on with my day, loving my daughter with every ounce of my body and soul as we spend our days together.  Send strength to my amazing family who help me each day. And not to sound like a cliché Disney movie but, we are all in this together.  The huge amount of support we have has truly blown me away.  But as my little brother told me “anyone who doesn’t love this little girl is a punk, she is too cute” so I guess in the eyes of an almost 7 year old (tear) it’s easy to see why we have the support we do. Even still I thank you all from the bottom of my heart. Each message is read maybe not responded to but I read them all, and sometimes I even go back and reread things you all send me when I’m feeling really down.  As always love to all you beautiful souls out there. I’m forever promising to write on here more but keep failing. One day…. One day…. Haha
 Good night everyone my little warrior is waking up to eat! 

P.S. Huge thank you to my Aunt Donna and cousin Sarah for coming to mine and my mothers rescue when we have gone to far without good sleep. You both are awesome and I'm thankful to have you both here. 

That Tongue <3 

Thank you to Capturing Hopes Photography for these 

<3 from my longest friend, i love you 

After bath hair, get me laughing everytime

Thank you to Deborah from Now I Lay Me Down To Sleep for these hours after Adalynne was born

 

<3

Adalynne Marcella's arrival

Tuesday July 8th I went in to Forsyth hospital to begin my induction process and to soften my cervix. I guess every woman decided to have their baby during this time so we had to wait for a few hours before we could even get a room. Finally around 5 ish they started my Pitocin and but it a balloon type thing to open my cervix, which was excruciating.  About 10 hours later and filling the balloon up more I was only dilated to a 5 when the balloon came out (sweet relief).  I was not dilating whatsoever so they continued to bump my Pitocin up higher and higher.  After about 24 hours of labor I threw the towel in and got the epidural, I really wanted to have an all-natural birth but my Pitocin was so high my contractions were too intense.  My first epidural slipped out too much and they had to do another one… yay the joy. Finally after almost 40 hours of labor I was finally to a 10, and was so scared all I could do was cry. I wasn’t ready for this, I wasn’t ready to start the process of losing her. I wanted her safe in my tummy and she wanted to stay there.  But regardless of what we wanted she had to come, I had to see her face.  I only pushed for 30-40 minutes and then.. she was here in this cold world.  Purple. Dark purple and not breathing. No crying, nothing, just a limp purple baby. I screamed “there’s my baby!” only to see the doctor look over at the nurse and shake his head.  I took her on my chest and kept asking if she was going to die and they looked and me and would say things like she has a pulse but she is not breathing.  All through my pregnancy I would sing John Legends “All Of Me” to her, it was my way of telling her that no matter what I would love her with everything I had. No matter what crazy ride she had in store for me I would give it my all as long as she gave me her all. We would fight, together. So naturally I started singing our song and rocking her, over and over again.  Finally I saw her tiny little chest lift and fall, and then after 10 or more minutes of me horribly singing a cappella to my limp purple baby she cooed with me to the song. My. Heart. Sank. There she was, I knew we could do it. Finally she started to turn pink and I stopped crying.  I did it. We did it. Or so we thought.  We brought my family that was already there in to see her naturally everyone was crying and in awe of my beautiful creation.  A little after her arrival my dad left to go get my brothers, the new uncles of a beautiful 7lb 13oz 20 inch long baby girl born July 10^th at 11:33am Adalynne started having trouble breathing.  She kept gasping and just could not get the hang of breathing. For those that will ask why they didn’t put her on a monitor or ventilator, I chose comfort care for my child. No invasive procedures that can cause her any pain are to be done. I want her short time her comfortable and full of love. After two frantic calls to my father and jay who left to get his car for work in the morning  to hurry and get to the hospital as soon as possible since the doctors were telling me she would not survive very long. We had our whole crew in one room gazing at my baby as she struggled for each breath.  My amazing delivery nurse contacted an organization called Now I Lay Me Down To Sleep. It’s full of volunteer professional photographers who come and capture pictures of terminal babies or still borns for families to have.  A wonderful photographer named Deborah came and took pictures of my warrior and all of us. (thank you if you ever read this, my heart cannot even fathom the words of appreciation) Well my warrior fought like we do and with a little help from some morphine calmed down enough to learn how to breathe. She continued to do well except for seizures that stopped her breathing but we got to go home!! Once we got home she has been doing well, has days where she will stop breathing and with some stimulation will start back up also has tremors.  If she gets too cold or has too much stimulation her episodes start.  My heart aches knowing that one day I may not catch it in time to get her going but I try to let it go.  Knowing you’re going to lose your child is the hardest thing I have ever faced in my life.  Even though she is doing okay most days I know eventually the hope runs out, she is missing over a third of her brain. She amazes me with her funny faces and fight. She still doesn’t cry, just opens her mouth and sticks her tongue out when she gets hungry (cutest thing ever.) I still sing her our song every day, and I always will.  Having her here is the hardest reality check seeing her beautiful perfect face and knowing I only get a small time to enjoy it makes me want to spend every second wrapped in her, and I will until I don’t have her any more. I want to say the biggest thank you to our family that came up to see her from near and far to help for a few days, biggest blessing ever I you all so much.  Sorry for the late long post, like I said every second I have is spent wrapped up with my warrior baby. Love to you all beautiful souls thank you for the thoughts, prayers, and strength being sent our way.