Have you ever had to make a decision in which you didn't know which choice was best? Even making lists of the pros and cons, getting advice from others, and really thinking the decision through didn't make the decision any easier. I feel that is where we are right now with our sweet girl. We know that Caroline has some neurological issues and a lot stems from her Chiari Malformation. (You can research it under Spina Bifida- basically it is where the brain forms down the spinal column so part of the brainstem is pressed between bone and causing symptoms like her not sucking/swallowing, hard to regulate temperature, muscle spasms, weakness in arms etc). This condition is common with SB children. There is a surgery that can be done to help with these symptoms and that is where the hard decision comes in. We could opt to do the surgery and fix her symptoms and everything would be great. But, there are a lot of risks that come with the surgery. First off, our neurosurgeon who we absolutely love, says that it is a very risky surgery, especially with an infant. He would prefer to wait until 6 months-1 year and even then there are more risks than operating on an adult. Secondly, the surgery may not even help. It may not help the symptoms at all or even worse, make the symptoms worse or create more (possibly breathing issues and may need a vent). The surgeon wouldn't know until he did the operation to determine that. If the brainstem is damaged at all and if that is what is causing the symptoms, there is nothing he can do about that. So what does one do as a parent? Put their child through a surgery that is risky and may not help or take the chance and do it? Do we sit here and watch our sweet girl suffer from these symptoms (in which some days are just downright scary to see). I do not know if prolonging the surgery will cause any permanent damage and the neurosurgeon can't answer that either. There are so many unknowns. So many unknowns about the surgery, about the outcome, about Caroline's future. We have been given this decision and it has been the hardest decision of our lives. We only want to do what is best for her and we know that whatever the outcome may be, we will always love and do what we can for our little girl. She amazes me every day about how much she has overcome.
Our lives have definitely been changed because of this little girl. We have gone through so much with her and there have been days where I didn't think I could make it through it. But, on those days, Caroline does something to show me that I can. Even if it is a simple smile or look, she lets me know that it is all going to be ok. I am human and get angry and frustrated at times. I question why it had to happen to her, why does she have to go through such a hard time. It's hard to not feel that way, especially when there are so many unknowns but my husband always pulls me back to reality when I have those days. He tells me that everything happens for a reason and that we will do whatever we need for her. Being mad and frustrated won't change anything. He is so right about it. These were the cards we were dealt and perhaps God knows we are strong enough to deal with it. I just wish I had more trust in myself each day that I can. I am slowly working on it.
One of the many reasons I have made it this far is because of our wonderful family and friends. The amount of support we have been given has been so overwhelming and we honestly wouldn't be where we are without everyone. The kind words we receive from so many people is truly amazing. No one should have to go through any of this alone and we are ever so thankful that we do not have to. Thank you so much to everyone who has supported us and is on this journey with us!!! We are so very happy to be home and getting to enjoy our sweet bundle of joy from the comforts of our own home :)
Here are some pictures of our sweet families and those that have meant so much to us!
(Jeremys Family having our Thanksgiving/Christmas/New Years Celebration)
(My mom, Grandma, holding Caroline for the first time)
