Let me start this post out by if you are in area where its not acceptable to start crying close this and open it at another time. Going into yesterday I was thinking of how much more information I would have to share with everyone and how many of my questions would be answered, boy was I dead wrong. I first met with a pediatric cardiologist to do and in depth ultrasound of my little warrior baby's heart, which went great! Her heart looks wonderful so we started the day with very positive news. After some food and a much needed trip to Starbucks with mom where we got birthday cake pops- any of you know me know ohhh how much I love these things. If you haven't tried them, do it! So good, even better for a preggy prepping herself for a very hard doctors appointment.
May 15th, the day I had been waiting for, the big meeting with the pediatric neurosurgeon to discuss warrior baby's surgery after birth. Whelp, WHAM POW did he change the game. My daughter has a SEVERE case of ventricular meglimy, to the point it has a new name, Hydranencephaly. This is "a rare condition in which the brain's cerebral hemispheres are absent and replaced by sacs filled with cerebrospinal fluid." Now, for those us you who do not understand these doctor big words I shall break it down for you. She is missing part of her brain, the top part which controls motor function, speech, all upper level functioning. She will never be able to talk walk or my biggest fear from the beginning, dance. I've said from the start I can deal with the mental slowness, the seizures, everything but please, please allow my warrior to feel the joy that dancing brings to me. To express your soul when your voice is so clenched that music and movement are like the crack in a dam finally busting that free. But no, he looked me in the face and said "No your daughter will never dance." As most of you can imagine hearing the utter shock of this news I began hysterically crying, and thank god for my mom. Who; before I go any further into the "big bowl of shit" as my dad described the situation in the very beginning, stood up held me and began to ask the questions I couldn't think to ask between sobbing tears and uttering I don't understand, I'm so confused. My mother is my lifesaver. I type those words and have that little voice reading them in my head and know that doesn't even cut it in explaining her. I seriously could not even do this without her at every single doctors appointment, looking at every single doctor as they give me more WHAM POW blows to my everfadding heart and hold on life and asks them all the questions I cant word because well, I just cry. Mom, I know at some point you will bring yourself to read this so thank you, thank you so much for being the strong mom that I hope I get to be one day, short period it will be but, one day I will. Without you, I would be curled in a corner unable to speak to the outside world. You are forever my biggest hero. Now that I am again crying I will continue with my information for all the questions people have asked. Children with this rare disease for the most part don't live past a year, they often have trouble feeding which obviously lessens their chances and will have to have a feeding tube put in. I know what most of you will say to me- hunny, miracles happen and doctors can be wrong, well I'm here to tell you that I know looking at their face how shitty it really is. The word severe has been used more in the past few months then I think I've ever heard in my 22 years. Plus, I saw it on that tiny little moving picture of a MRI (after he showed me the blobs were actual parts of baby) there was her brain lower parts there and looked normal but... the top was a white fluid filled space. He said that my normal ob probably could not tell everything because they don't spend their time looking at little warriors heads on MRI's like he does which could of been why there was confusion. I was first told that her brain was normal, even asked if she could walk and they said yes, hence the WAM POW shocker to my heart and soul.
Next step- ha here's the kicker, nothing. We wait... until she is born and then do an MRI (which should be a blast since she lovedd the first one so much she felt like she was trying to escape my tummy) and then asses whether to put a shunt in or remove a part that makes the fluid or send her home and monitor her until she, I guess has issues. I'm not entirely sure what the future will hold but I do know that she will basically stay as an infant for the duration of her life, and that I will love her for the short time I have her. Also, I will try my very hardest to learn some type of lesson from this "big bowl of shit." Whew, okay must. stop. crying. cant. see. screen.
Thank you all for the support and love you have shown me, I was so scared to share this news from the start because I know how people are in our little small town. So, thank you for reminding me that I have a indescribable amount of people who love me and care about me. We get so caught up in our lives we sometimes forget. Love and happiness to all hopefully the next post will be a wee bit more happy. (I'll talk about food or something fun)
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