Merry Christmas

Last night, Jeremy and I sat on the couch at the Hampton Inn, looking at our miniature tree with a few presents wrapped under it with the view of the hospital outside of our window. Our families had sent presents and gotten us a hotel room for the night so we would have a break from the RMH. We sat there in silence for the longest time, just looking at each other and having our moments of tears. Everything about these past four weeks had finally gotten to us. We knew when we found out about our sweet girl having Spina Bifida that our life would change. We knew that we would have our good and bad days. I just never expected it to look like this, to be like this. So, our moments of letting our guard down and admitting to each other just how hard some days are, was much needed. It made us realize that we have been faced with some difficult days and we have overcome them. It made us realize that we wouldn't be where we are today without the amazing love and support from our families (especially for making yesterday such a special day, even if it wasn't the typical Christmas). Sometimes we just need those days of allowing ourselves to feel defeated, as long as we deal with it and know that tomorrow is always a new and better day. Those days truly make us stronger.

Caroline has been doing pretty good for the most part. I feel today hasn't been such a great day and I can't seem to put my finger on what is exactly wrong but she just hasn't been herself today. I know that I have been on edge because of the episode she had a week ago and am so worried it will happen again. I have spoken to the doctors a couples times today but because she isn't presenting with any "real" symptoms besides not being herself, they really can't do anything except "keep a close eye on her".  It is a frustrating answer but I know that is all they can do for now.

While the doctors were doing their morning rounds on Wednesday, I heard them mention that Caroline had tested positive for "Maple Syrup Urine Disease". (Yes this is a real thing!) I had to laugh a little when I heard it because it just made me feel like I was in a dream, a dream in which I would wake up and there wouldn't be unknown things happening or ridiculous names for tests that Caroline would be positive for....that I would wake up to a healthy little girl in which we were home with our family and friends. But no, this is not a dream and I had to snap out of that thought to inquire about this new diagnoses of this ridiculous sounding disease. They didn't elaborate much of what it was but said it was "genetic" and more tests would be done to confirm it. Well, you know if you mention a medical term I don't know, I am going to do what any person would do.....google it. Bad idea. Reading article after article made me sick to my stomach. I was convinced Caroline had it and was anxious to get started on treatment. Well, the doctors didn't feel the same way. They think it is a false positive because they get a lot of those, especially if they do the tests while babies are on TPNs (fluids that she was getting when not having feedings). The doctor said that she would likely be more sick if she truly had it. So, the test was repeated yesterday and we should hear the results the beginning of next week. So more waiting for that. Also the same day, we got the news that she failed her hearing test. It will be repeated next week to see if that is really the case. All of this information was given Wednesday morning, and of course Jeremy wasn't there because he had to work, so I pretty much worried myself sick all day. Just some more hoops to jump through before we go home.

I feel over the past few days, I have become very frustrated with a lot of things. Jeremy and I knew that Caroline would have Spina Bifida and knew that she would need a shunt and need to have her back repaired. We knew all of this before she was born. We knew recovery was a couple weeks and had mentally, emotionally, and physically prepared ourselves for it. We, in no way, had prepared for the other complications she would have and for me, that has been the hardest. It's so hard watching your child go through so much in such a short time that it sends your emotions into overdrive.  It's been even harder that the doctors can't explain some of the things that are happening to her. I am a planner. I like to know and plan things. I like to have answers so I can fix things. And it has been frustrating to not have answers. Jeremy and I have talked and are going to ask for a family meeting next week. We need to get all the doctors together to discuss things and get everyone on the same page. I feel it is getting to a point where there are too many hands in the pot. Caroline has seen SO many doctors/residents/fellows from different types of specialties and it is getting to a point where there are just too many people. (Urology, Neurology, Neurosugery, NICU doctors, speech, pt/ot, child development) Jeremy and I will make this meeting happen and will hopefully get some answers and clarifications.

As hard as things get sometimes and as frustrating as some things may seem, my whole world changes when I hold Caroline. It is just something about holding her on my chest that calms my soul and it is exactly where I want to be. Some days I can't get there soon enough to grab her out of that bed and just hold her for hours. You never really understand the love of a mother until you have a child of your own. Seeing her face just makes every single thing worth it. I wouldn't trade those precious moments for anything.

On a happier note, we are so amazed by how many people have been thinking and praying for our sweet girl! We have heard so many people tell us that they know people who have been praying for her! I can't even begin to imagine how many people have shared in our journey and for that, we are ever so thankful. Jeremy and I made the decision to share this journey with our family and friends by this blog because we want people to be part of it with us. We wanted them to learn the new things with us and share in the adventures we will have with our sweet girl. I never imagined it would be a popular blog with so many people reading it that don't know us personally but I am glad it has been. I hope that us sharing this blog will help encourage others to share their own journey, no matter how hard or different it may be. It's amazing how supportive everyone has been and I just feel we could never say thank you enough. Please keep reading and sharing! Thank you, thank you, thank you!!

I hope everyone had a Merry Christmas!! Much love from our family to yours!!