I don''t have a whole lot of news. I had my first ob appointment since we found out about our little man. Our ob says obstetrical wise there should not be a problem delivering at our hospital but would like us to talk with our neonatologist just to make sure he feels its safe as we are low risk for any other problems for Riley. However, I still am nervous since we were low risk for having a bilateral cleft lip and look what happened. I had my glucose screening today and just as long as it comes back negative everything should go as expected. I plan on sitting down with Tony within the next few days to see when a good time would be to schedule our appt with the neonatologist. We want to get things moving so we can further prepare ourselves for what is happening. Tony has found a wonderful blog:cleftstories.com. Its about a little girl born with the same thing Riley has-bilateral cleft lip and palet. It was awesome to read this blog and I would recommend it for those of you who want to get an idea of our road ahead. It's not an "easy" fix and we do have a lot of things to be concerned about. This blog solidified my feelings and made us feel like we aren't alone. In many countries, babies born like this are recommended to be aborted. I do believe in abortion but only for severe cases. This is not something we want to deal with but again, Riley should hopefully be a normal litle boy with a facial deformity that can and will be fixed.
As for us, emotionally we have our ups and downs. I wish I could say that I'm over crying and I'm over the anger but I'm not and don't think I'll ever be "over" it. We are, however, coming to the point of acceptance and learning that life still goes on. I love our little man so much already and no one wants to see someone they love suffer, be in pain, or be viewed as "different". Yes, Riley is going to look "different"' at birth. Yes, it will be a little scary meeting him and seeing his face for the first time. I'm learning that its okay to be scared. At the end of the day, Riley has 2 parents that love him more than anything and will give him the best care posible. Everyday is a struggle and I have to find my inner strength everyday to deal. Tony has been awesome at communicating his feelings and giving me update on what he has learned. He has been a big supporter and I coudn't do this without him. Also, to all of our friends and family who will love Riley regardless of how he comes out.
In happier news, we leave tomorrow for our vacation and we are very excited to be able to spend time with family right now. I will post pics and updates when we get back. Please feel free to ask me any questions you have on your mind. To me, knowledge is power.
Hey Kari, I hope you are Tony are coping well. It sounds like you are, and this experience will only work to strengthen your relationship. Tim and I are excited to meet our new nephew some day soon! Love, Janine
ReplyDeleteI've been reading about the treatments and the pictures on that blog are great for showing how well the NAM works. I know its a long and difficult road ahead for you, and you are in my prayers each night!!
ReplyDeleteI could have easily have written this same blog post almost six years ago. While we did not find out about Rachel's cleft until she was being delivered via emergency c-section, we still felt the same way you are describing here in your post. Anger. Sadness. And we went through a time of grieving...
ReplyDeleteAs soon as Riley is born, you will have this overwhelming love for him, it's amazing how quickly you will love his wide smile and even more amazing how you will miss it, once it's fixed.
Hi Kari,
ReplyDeleteMy name is Allison. I found you through your comment on Darcy's blog, Rachel's Journey. I just wanted to let you know that I know how you're feeling. We too found out about our 3 year old daughter Abby's cleft lip via ultra sound. We were unsure of the condition of her palate, and waited for the remainder of the pregnancy to find out her palate was not cleft once she was born. She does have the cleft in her gum line though, which will require bone grafting, just like Rachel's coming up. Please feel free to visit my blog at onethreebusyplace.blogspot.com and you will find a "cleft lip" link on the right side to posts regarding Abby's cleft. I'm so glad you found Darcy, and am more than happy to offer support as you begin yours and Riley's journey!