where does someone begin with this. I would say it all started maybe sometime around the summer of last year. I was sent to the hospital and found out I had a miscarriage to a pregnancy I didn’t even know about. that day I was told I couldn’t have kids or else I wouldn’t survive. around November of last year I found out I was pregnant. I was happy and scared. scared because I didn’t know if I really was going to die and happy because I finally got something I always wanted with an amazing person. being pregnant was amazing I was growing a life inside my tummy and felt like I was doing the most important job ever. somewhere along my pregnancy when they did the screen test for down syndrome and stuff we found out the test came back positive for trisomy 13. at this point the dr said we would have to terminate the pregnancy so another screening test called the maternity 21 which came back negative. we thought we were in the clear and that our little panda would be as healthy as a horse. it was when we found out the results and the gender that we gave him the name talon liam c. talon being the strong claw of such powerful birds like the hawk or eagle and liam being a determined guardian. on july 17, 2013 our little boy was brought into the world. we was my perfect little angel. after a month we noticed our little guy wasn’t gaining the weight like he was suppose to and ended in the hospital. between multiple hospital visits and different test we finally found out on oct 6th that talon has whs. at first it completely broke me. I cried in the bed as I watch my son smile and I thought my world had ended. at some point I knew I had to be strong and I had to protect him and give him the love that he needed and put in the extra work. as the days came for his appointments there just seemed to be more and more problems. it was just recently that we found talon having seizures and ended up in the emergency room. during his mri we found out talon has frontal lobe bleeding and also his kidneys are still small and dense from the ultrasound he was given. today, talon had his official first serious seizure. I had just given him his medicine and minutes later as my grandmother was holding him his eyes rolled to one side and he started to foam at the mouth I quickly took charge of the scene and placed him sideways on his blanket and removed any tight clothing. I watched as my son laid there not being responsive and just what looked like formula and his medicine come out of his mouth. a minute later talon came back and was kicking as if he was listening to music. it scared my mother and my grandmother but I knew this is what its going to be like. talon is on multiple medicines. for his seizures hes on phenobarbital and diazepam. he is also on amoxicillin for his kidneys to prevent any infections. I don’t know if there are days that I can be strong and act like the people think I am. people think im taking this well but to be honest I cant even explain what I feel. to me I always felt that writing was my way of expressing how I felt or a way to get over something. sometimes I kept these writings to myself and sometimes they were shared. I thought multiple times of writing what I did just now only because I know my other half likes to keep things private but this is my journey as a mom. this is a whole new complete world besides being a mom and when something is new we go to someone who knows about it. like becoming a chef. a person who is a completely new world about it goes to school and they learn about it and gain experience and become a chef. i don’t really know how life is going to be. will it make family stronger, will it break us apart. will going through this make me and talon’s dad stronger people. how much time will we have with our little panda. there is so many questions. my biggest fear is that ill lose the first thing I’ve ever really fell in love with but for now im enjoying every day with my son and just hoping for the best.

 

5 Responses to A baby panda was born (talon Liam C.)

  1. Brandi says:

    Beautiful story. You are so strong! You and your little one are in my thoughts now always, even though we have never met.

  2. amanda says:

    thanks that means a lot and who knows maybe one day we can meet 😀

  3. Shirley Bidnick says:

    Congratulations on the birth of your baby Talon Liam. I hope we will see baby pictures soon. Thank you for sharing your story with us. I’m glad you decided not to keep your thoughts and feelings private. We want to hear all about your ups and downs. We care about you, your baby Talon Liam, and family. You have been on a very difficult journey since last November. Sharing your experiences with others who understand will help. Keep up your great work as a parent and keep us posted.

  4. Kristen Faccioli Licari says:

    Welcome! I actually saw a post and a picture of your son on Facebook. he is adorable! I know how hard it can be to put all your thoughts and feelings on this subject into words, especially when you’re torn on how to go about it – part of you wants to keep it private because it’s just so difficult to deal with, while the other half longs to share for exactly the same reason. I had a very hard time dealing with my daughter’s condition – and still do, at times – and because of that, I have been trying to help new WHS moms cope. Feel free to message me on Facebook if you’d like my number. The page is under my daughter’s name, Emily Rose Licari. I made it just to network with other WHS families.

  5. Letty says:

    Reading your post brings back all those “up and down rush of emotions.” My son, Nathaniel is now 33 months. His first year of life was somewhat normal….just tons of appointments. When he turned a year, he began having seizures. At least once a month and on occasion, twice. His were really bad and we ended up in PICU-literally EVERY month for the 2nd year of his life. He would go into respiratory distress every time and would have to be intubated….every single time and would spend 1-2 weeks in the hospital. The nurses and doctors knew us very well. They knew his meds by heart. His last hospitalization was mid January. His neurologist recomended putting him on the Ketogenic Diet and since then, he has been “seizure free and hospital free!” He used to have febrile seizures with temps of 98.3…..it was so bad. He will be 3 on 1/8/14, and with time you too will see that things DO get better. Just try not to think about all the “what if’s” and enjoy your precious little one. They tend to stay “baby-ish” longer than others, but we get to enjoy them this way longer and get to appreciate the simpler things in life like no other parent. You and your family WILL become closer and so much stronger. Patience is all you need. I wish you and your family nothing but the best. Post away!!! You too will find this to be the best “Therapy” in the world!!! My husband hasn’t posted anything, but I definately do….I guess I always beat him to the punch 🙂

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