an update on baby Ruby

Category: everyday | September 27th, 2013

ruby's pre op
This is a post I never thought I would be writing….but here we are. If I had written this 8 days ago I am pretty sure it would have been a hot mess. But in those 8 days I have gained so much peace within me. God is good.

I don’t really know where to start but I will say that baby Ruby is one of the sweetest babies I know. She is a mama’s girl for sure…times 10. But I love it. When she was born we noticed she had a more narrow head shape compared to Penelope’s but we just thought that was how her head was shaped. Well fast forward to her 9 month well check (she’s a little over 10 months now) and her pediatrician was a little concerned about her head shape and had me take her to get a cat scan. Y’all, I was so nervous about this, but of course Ruby did amazing and the staff were awesome.

But then the next day I got “the phone call” from her ped. Good news first: her brain is perfect (praise God!)…but she has something called sagittal craniosynostosis. With tears filling my eyes I listened to her explain it to me. You can look it up for more details but basically part of her skull (the sagittal suture) had fused together prematurely. This is why her head is shaped the way it is and if not treated then there could be issues with her brain down the road. Sagittal Craniosynostosis is the most common type of craniosynostosis (40-58%) and is a lot more common than I thought with it occurring 1 in every 2000 births. Towards the end she told me the only treatment for her would be surgery (cranial vault remodeling). I held back the tears as much as I could until I got off the phone and then looked at my husband. Man, that was rough.

So a few weeks go by (seemed like a lot longer) and we finally had our consultation with the neurosurgeon and craniofacial/plastic surgeon at Dell Children’s Medical Center last Thursday. The appointment went great. I didn’t cry so that’s always a good sign. Ha. They said they would like to get her in for by her 1st birthday so I kind of had that in my head…by her first birthday. But they called us on our way home and asked if October 1st worked. That was in 12 days. So soon. I’m not ready! But clearly we said yes.

I had my moments…where I just had tears, but I know that this is what God had planned for Ruby. He knew this day would come before she was even born. I know God will take care of her and us. I am sooo thankful for my husband and his amazing faith. That’s the number one thing I love about him. We have also had so much love and prayers from family and friends. I can feel it. It’s an amazing and soothing feeling. I think that’s why I am not freaking out as much as I thought I would be. (I have come a long way in my faith).

It’s going to be an interesting journey. I know it’ll be rough for awhile but then we will get on the other side and come out stronger and with a perfectly shaped head! I wrote all this out mainly for myself and for Ruby but I also did it for all those other parents out there who might be going through the same thing. I found great comfort in reading other people’s blogs and stories of their tiny babies going through similar surgeries. So maybe all the posts of Ruby’s journey will be comforting to those in need too.

I can’t wait to tell Ruby about this time in our lives and how many people prayed/are praying for her. She is loved by so many! We are so thankful for everyone and we appreciate all the words of encouragement and prayers!

So a few more phone calls, some lab work, lots of driving (the hospital is about an hour away), and lots of prayers over here…and then October 1st. Sigh. I’ll be posting more about our days when the time comes….but in the meantime I’ll probably be filling up your instagram feed with photos of our last few days with her cute little narrow head. :)