I'm laying here in a dark chilly hospital room. The tv is on for light purposes only. I can hear monitors beeping and the video monitor clicking every couple seconds in our room. The blood is probably rushing to my head because I am laying in my bed backwards purely so I can have a direct view of my baby girl in her crib. I need to be able to see her. Shes laying flat on her back with both arms spread to each side. Her little body is exhausted without a doubt. I'm praying she is getting healthy rest and the night treats her well.
Today was worse than I could have imagined. My instincts were right again.. I've been nauseated for days about today and it was justified.
Mady was hysterically crying and begging me not to leave when I had to walk away. Annabelle clung tight around my neck the moment we walked thru the hospital doors. And within 30m of arriving in our room, the straight jacket, board and sheet was pulled out to strap Annabelle down.
What I didn't know is that it would take over two hours to assemble the leads for the EEG onto her head. I didn't know the process involved three painful steps. I didn't know they used frickin cement equivalent-like glue to adhere the leads and I didn't know my daughter literally had two hours of a fight in her!!
We never used any anesthesia for this procedure. Annabelle finally cried herself to sleep for about 5 minutes total which allowed everyone in the room to take a step back, stretch our backs and exhale for a split moment.
Ak brought mady this evening to visit. He delivered me dinner despite a worthless appetite. Mady has never visited Belle in a hospital, the only experience she has is from a couple weeks ago at the allergist. Today she seemed really concerned about her sister but at the same time you could tell she was upset with me. Mady is a mommy's girl and this journey is really taking a toll on her and my relationship. Her choices and attitude upset me so much that I asked ak to take her home immediately. He did and I'm left in this hospital broken hearted in more ways than one.
Both my little girls own my heart and soul and neither of my babies are getting what they need from me. My heart is shattered tonight and I'm so lonely :,(
I curled Annabelle under my arms and gathered all her things.. gigi, lambie, cup and EEG bag and we walked.. I rocked her in my arms until my back felt like it would break and my arms were literally going numb. Finally I laid her in the crib and I climbed in with her. She snuggled as close as she possibly could and I pulled her in even tighter. I rubbed her cheek as her face laid against my beating heart and I silently cried.. and cried.. and cried and cried. She couldn't see me and the lights are out. I hope the video cameras couldn't pick it up either. I cried until my tears ran dry.
Around 8pm she began to twitch and I pulled away to watch her. I sat up and started reading her cues. She was staring off and looked ghostly.. I called her name several times.. nothing. I waved my hands in front of her face.. nothing. I yelled ' Annabelle, are you alright?!'... nothing. I hit the panic button and immediately the tv turned off, the lights all came on and the nurses entered our room. Annabelle broke her concentration after a few more seconds. Once she seemed semi conscious, the nurse performed a couple tests. Annabelle seemed to be tracking the lights but was still acting very odd to me. She was drooling down her face and simply watching everything around her. We decided to do vitals and she still didn't budge. She just watched as they took her blood pressure etc. I have no clue if what I saw was a concern, but hey kid.. do it here while the monitors and cameras are rolling!
She's asleep and resting now. I am personally too nauseated to even think about sleeping. My heart has never sank so deep into my stomach as it did today watching my helpless daughter lay strapped to a board for two hours. She begged and screamed "MAMA!! PLEASEEEEE!! BYE BYE, BYE BYE!! SHOESSS, SOCKSSS! MAMAMAMAMA NOOO!! PLEASEEE MAMAMAMA PLEASEE!!" I can't allow the tears to fall as doctors are surrounding me. I can't let my child see me as upset as i was. But it also hurts so badly to continue to not be able to be there to help her when she needs help. I wanted so badly to save her :( I was begging and screaming inside the entire time for it to all be over! God please, please help this little girl!! Please wrap her in your arms right now. Cant you tell? She needs you :,( I'm doing all I know to do for her but I cannot do any more. Please comfort this baby girl! :,(
I have dropped Annabelle's crib rails more times tonight than I can count. I keep wanting to reach in and touch her skin. Its warm.. Im grateful. Her warm, soft skin is magical to me somehow. It tells me she is alive and well.. she's so pure and with closed eyes, she's resting. I enjoy these quiet, still moments watching her. I am alone and quiet in my own prayers and thoughts. Holding onto my daughters hand and tiny warm wrist, I feel connected by three to God as I am speaking to him. I am praying so very hard that this too is part of his plan. Please allow this procedure to provide our family with answers. Please take the pain and anxiety from my babys body tonight and bless us with answers so we can continue to help her. Please God watch over Annabelle. She's incredible and has so much to give to this world. She cannot give if she is being confined to this body that's failing her.. please heal her body. Please send me strength to balance this nightmare with my family and do justice to both my girls. Please watch over all of us and most importantly, hear the prayers with Annabelles name. They're being flooded your way and they're being sent by your own angels here on earth that love Belle. Please hear our prayers and protect baby Annabelle.
Tomorrow morning, tonight's EEG will be read. We will know tomorrow how long we will be here. At a minimum, we will leave tomorrow afternoon. I am hopeful Belle gets rest thru the night, she deserves every bit of playful dreams.. I hope she's having a huge slice of chocolate cake and ice cream in dream land right now...
Sweet dreams, xo
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