One Year!

Wow! I can't believe it has been three months since our last update. Time surely flies when you are having fun! A lot has happened since then....school, work, holidays...but most importantly, our sweet Caroline turned one!

Had you asked me, this time last year, if I could picture what our life would be like in a year...I would have never pictured it to be like this. It has surpassed every hope and dream that I had for Caroline. It was exactly a year ago today that our family experienced its hardest day ever. Caroline was intubated and moved back to the critical care side of the NICU. We knew, when she was born, that we would have hard days, but I never imagined having to consider her not making it. I remember those days so vividly and quite honestly, I don't know how I got through them. I remember walking into the NICU that morning, just like we had every day before....tired but excited to see our sweet girl..but this morning was different. The doctor and staff met us at the door, wanted to talk to us before we could see Caroline. They explained that her stats had dropped extremely low early morning and that they would need to intubate her, to put her on a ventilator because of the progress she was losing. It broke my heart and I had a melt down right there, in the doorway of the NICU, Jeremy by my side. I knew we were going to experience trying times, but never would have pictured this. This was shortly after she was intubated. She looked absolutely terrible. It broke my heart to see her so fragile and pale and that no one could explain why.

Caroline had to be intubated for 5 days but each day she grew stronger and eventually was breathing over the vent. They decided to try and see how she would do without it and couldn't believe how well she was doing. The doctors were amazed and puzzled by what they had witnessed. They couldn't explain why she had gone downhill or what caused it. All I knew was, I was glad she had made it.

But fast forward to a year later and here we are. I can't put into words how extremely grateful we are to be home for the holidays this year. Although we have wonderful family and friends who helped make the best of last year, we are so thankful to be home for it this year. To wake up Christmas morning together, as a family, and enjoy this time together. We are thankful for the health of Caroline and for the progress she has made over the past year. We are learning how to adjust and how to have a "new normal" for our family. I know things will be different for our life but I honestly could not imagine my life without Caroline. Whatever will happen, whatever may be....I am thankful for her.

I think back to even five years ago, what our life would be like. Jeremy and I were engaged, preparing to spend the rest of the lives together and learning how to live together. We were so young and naive about things that mattered. We imagined being married a couple years then starting a family, having a couple kids, and doing the whole "adult" thing. But I have learned, from several other times as well, things don't go as planned. I am a believer though, that everything happens for a reason. I believe Caroline was meant to be in our life and she has been such a blessing. She has brought so much love and happiness to us that I can't even explain. When we first found out that Caroline may possibly have SB, I was 22 weeks pregnant. I was told, only once because of my reaction, that I had two weeks to decide if we wanted to continue with the pregnancy. I made it very clear that I did, that this was not my decision. This decision had been made for us and it wasn't up to me to tempt faith and change what was meant to be. That doesn't mean I didn't have doubts, that I wasn't nervous about the gloomy future that had been painted for us by doctors. But, the outcome was much more than anyone could predict. We couldn't give up when things got hard. Sometimes you just have to believe, that you are stronger than you believe. Sometimes it takes a life changing event to help you become the person you were mean to be.

So as I finish this post, I want to share some pictures. One that is so near and dear to me. It was a picture I have been wanting to take for quite awhile. I had seen something similar when I was pregnant with Caroline and I knew I had wanted to attempt a similar photo. It is a picture of her underneath the Christmas tree.

This pictures means so much to me. First it represents us being home this Christmas. To enjoy this special time, in our home, creating traditions with her. Second, I wanted to show her scar on her back. This scar stands for what she had to endure in her short life. She was less than a day old when she underwent 8 hour surgery. That scar will always be a part of who she is but I don't want it to define who she is. It shows that she is strong and can overcome so much and I want her to know that strength everyday. Third, she is laying on a blanket that was my grandmothers. I miss her so much. I still cry some days just thinking of her. She will always be a special part of my life. Children deserve to know their grandparents. They are special people and hope that Caroline will know hers and grow the bond that I have been lucky enough to know with mine.

That is all for now. I will leave some recent pictures of our sweet girl, including some from her birthday party! We are so thankful for this life changing year and can't wait to see what the next year has in store for us! Enjoy each day and learn to find the good in things! We all have so very much to be thankful for!

Our Beloved Gee

This post is dedicated to my wonderful grandmother, Gee, who passed away last week. Her continuous love and support has played a big part in my life.

I wanted to write a post about my grandmother, who we called "Gee", because of a few reasons. One, writing helps me get my emotions out and it has surely been an emotional week after her passing, and two, because I wanted to let others know, especially those that did not have the pleasure of meeting my grandmother, how truly special she was.

I was honored to be able to speak at Gee's memorial service this past week. I knew it was going to be hard but I felt it was something I needed to do. I wanted to share with you what I had written about her because I feel it describes who she was. So here it is:

"Recently, I have had several people share their condolences with me about my grandmother and some from people that did not know her. A few of them asked questions about her, trying to get a sense of who she was. It wasn’t until then that I realized, how could I possibly put into only a few words how wonderful “Gee” was? I couldn’t even begin to find the words to describe her contagious spirit or giving heart. I couldn’t seem to explain the love she had for her friends and family and all the wonderful accomplishments she had over the past 91 and a half years. Her life was unlike many others.

I remember just a couple months ago, sitting around the table after dinner at my parents, sharing in conversation, that Gee had recently gotten a new cell phone, a “smart phone” if you will. She had put off getting one but finally decided to do it. I remember the conversation of trying to teach her to “text” and all the new gadgets about her phone. I smiled because that was Gee. 91 years old, learning to text. She was a young soul. Driving around in her sports car – 2 door cars only for her, because the 4 door ones were just “too big and not sporty enough” as she once said. She kept up with family and friends via Facebook and emailed often. She would Skype with family that lived out of town and was somewhat computer savvy.  She insisted on being called “Gee” because anything else would have made her feel “old”. So Gee it was to all the grandkids and “gee-Gee” to the great grandkids who have come along. Her spunk and life was infectious. You couldn’t help but smile being around her. She took great interest in the lives of others and always made you feel important. She cared, truly, about other people and always wished for the best, no matter the circumstance. She was highly involved in her church and community, always volunteering her time in the things she enjoyed doing. She was always on the go. Even her age didn’t stop her from doing what she loved. She rarely complained about things and even then, she turned it into something positive. She enjoyed her “wine thirty” with friends and family and even threw herself a huge 90th birthday celebration last year, because….why not? She was Gee. She had such a classy, catered, fun party at her home and it was a wonderful night of memories. I recently watched the video I had taken of everyone singing Happy Birthday to her that evening and there she sat on her white leather sofa, zebra striped floor beneath, beaming from ear to ear as she listened and watched each individual person singing to her. You could tell she was taking it all in. She was taking in all the love that surrounded her, knowing that making it to 90 was a huge accomplishment, worthy of a grand celebration and being able to be surrounded by so many who loved and adored her was a blessing. She didn’t take that moment, or any moment, for granted.

I know that everyone is this room can recall a special memory from their time with Gee. I don’t think she met a person whose life she left untouched. Whether you had only recently gotten to know her or you have known her for years, her character was evident. You left conversations with her feeling better, knowing that she cared.  I am thankful to have gotten to spend 29 years of my life with her. Not every child is lucky enough to have grandparents and I can’t say enough about the impact they have. Gee passed away on grandparents day and I can only find it fitting that she was truly a special grandmother. From dance recitals and school plays, to proms and graduations….the welcoming of new family members and the reconnecting of old ones. She played a special part in so many lives and I hope we each carry those wonderful memories with us. I hope we can all carry her love and energy with us over the next several difficult months and years and know that our life has been changed for the better because of her! Here is to celebrating a life of an extraordinary woman! We love you Gee! "

I don't think the reality of losing her has set in yet. I still find myself randomly crying, thinking of certain memories about her. I just kind of expected her to live forever. I hadn't had time to even process the idea of her being gone. I know it will take some time.

I was lucky enough to have her in my life for 29 years. I know not everyone has a grandparent, or several, that is a part of their life. Grandparents are so wonderful. The love they give is like no other. I remember about a month ago, I had taken Caroline over to her house to visit. It was right before school started and I had wanted to go by and catch up and let her see Caroline. We had a great conversation that afternoon and she just loved and supported me in so many ways. I can't tell you how supportive she has been in life, no matter what I did. She has loved and supported my family and I was lucky enough for her to be able to meet Caroline. She has been such a believer in Jeremy and I raising Caroline and her words and insight about being chosen to be her parents have really stuck with me. I recently looked back at several pictures on Facebook of Caroline, and sure enough, just about every single one of them has a comment from her. The last one she had commented on was Caroline wearing a pink pj shirt with snowflakes on it, about three weeks ago.  It reads "What a sweet, sweet smile. Love the pjs's.'  It brought tears to my eyes reading it. I will miss so much about her and I know these next several months will be hard for the family and I just know I need to be thankful for the time I did get with her and to cherish all the great memories.

Here are some pictures I wanted to share of her. Most of these are recent. Like I said above, she was a young soul. She refused to feel "old". These pictures show her young, loving, caring, spirit.

 

This picture was taken just a couple months ago. It is probably my most favorite picture of her! She always wanted to hold Caroline and would try to get her to say "Gee" as her first word. 

This was taken a couple years ago at Smith Mountain Lake. We all got to visit with family from out of town!

I love these two. They are from my wedding day, which I am thankful she was able to be there for it! She was my last grandparent so having her there meant a lot! I love how happy she looks in the picture with my mom at our reception! 

This picture isn't the greatest quality, unfortunately, but this was the first time Gee got to meet Caroline. It was January 8th, 4 days after we had been home from the hospital! 

This picture is from Gee's 90th birthday celebration I had mentioned above. This is where we grew up having Christmas with the family in that basement. So many beautiful and wonderful memories there! 

This is the video from her birthday. I only got part of the song but I just love how truly happy she looks. She looks as if she is just taking everything in. Brings tears to my eyes everytime I watch it! 

I am so thankful to have known this wonderful lady. I could sit here and type all night about all the special things in my life that she has been apart of.  I am taking things slow though as I still need some time to process all that has happened and cherish the good memories I have. I will miss her so much. I love you Gee! 

8 months

Our sweet girl is 8 months old today. It is so hard to believe! She has come such a long way in her short little life so far and I only know that she will do such great things! She loves looking around, noticing people and noises. She also LOVES Tyson (our dog) and thinks it is the funniest when he barks!  She knows my voice and she surely loves her daddy! She just giggles and smiles when he gets home from work and holds her! Absolutely melts my heart, every.single.day!

I wanted to share this picture of just how far she has come. The picture on the left was taken December 17th, when she was three weeks old and then the picture on the right was taken today.

She has overcome so much. I remember the doctors and nurses not knowing what her life would be like. Some painted a pretty grim picture of what her quality of life would consist of but I knew it wouldn't be like they had talked. I knew that she would show us what she is made of. She always has. She has always been on her own time and I am learning to be ok with that time! I hate that she has to overcome so much...it's not fair that she should have to fight so hard but I know she is strong enough to do it. God made her a very special little girl and is with her every step of the way!

I hope I don't jinx anything by saying this but I feel we are all finally settling into a routine with her. We are finally feeling more adjusted to our new life together and have just been trying to get the hang of it all. Jeremy has been my rock and I honestly cannot say enough great things about him. He has stepped up, in so many ways, since we found out about Caroline. We have been learning how to be a great team for her and are finally figuring some things out. I know it will be a process but I'm glad it is progressing.

I remember where we were almost a year ago. On August 3rd last year, we had planned a gender reveal party. We had reserved a room at a Charleys for all of our close family and friends and we were finally excited to find out the gender of our little baby.  We had sent out invitations and even made several decorations. We were anxious about the appointment because Jeremy and I weren't even going to find out ourselves. We wanted to share our excitement with everyone!

We went to the appointment at 3:30 that afternoon and had the ultrasound. We had told the nurse not to tell us but we could tell something was wrong as she was not saying much but spending a long time taking pictures of the baby. Finally Jeremy told her we really wanted to know the gender so we agreed to find out but still act surprised at the party. The nurse told us it was a girl and that she was 100% sure of it! We were so ecstatic and images of bows and pink danced around in my mind and I was so happy!  The nurse had told us to wait in the waiting room because the doctor wanted to meet with us before we left. So we waited. It was close to 5:00 and everyone was set to arrive at 5:30 and we still had to pick up the box filled with balloons and get ready for the party. Finally we were called back into the exam room and the doctor went over the findings of the ultrasound with us.

He told us that they couldn't get great images because of the position of baby (breech) but he could tell that her ventricles (areas on the brain) were enlarged. I didn't know what that meant but by the look on his face, it wasn't a common thing they see often. He said he couldn't tell the reason of it but he felt it would be best to see a fetal medicine specialist at UVA. He didn't offer suggestions or speculations of what it could mean but felt strongly we needed to see a specialist. He left the room and my heart broke. It was supposed to be such a happy day, find out the gender, and here we were, sitting in the exam room, crying, knowing something was wrong with our baby. I didn't know what to do. I wanted to call everyone and tell them to go home, I had absolutely NO desire to go to that party. But, because of my husband, he convinced me we needed to go, to share in the joy of knowing we were going to have a little girl with them. So, we pulled ourselves together, trying to dry my tears on the way home to get ready and rush to Charleys. I tried to put on the biggest smile for everyone that night and it was just so hard. Looking back, I don't really know how I made it through that night with everyone, being so happy for us and yet I felt so scared and anxious all night. I had no idea where our journey would lead from there.

And here we are....almost exactly one year later. We have a beautiful (I may be a little partial to that) little girl who has changed our lives in so many ways. She has stolen our hearts and has created such love within us. We have fought for her and we have had so many ups and down over the past year but if you told me my life would be this great a year ago, I wouldn't have believed you. I wouldn't have believed that we would be here, as a family, raising a child who has taught us so much about life already. She has put so much good in our hearts and because of her we can see the good in things, even when it is hard to find. I knew a year ago that I would be on a different journey than I had expected but it was one I needed to do.

I truly believe that if you have the love and hope for your child, they will do great things! Your energy and emotions feed into them. If they know you are scared or anxious, they too will be that way. We have to believe in her, in everything she does and in everything she will do. Like our Neurosurgeon told us after her surgery when she was a day old, "Don't ever let anyone set limitations on her" and I have tried to hold to that. I will not let anyone tell me what she will or won't be able to do.

No one can predict what our life will look like, what her life will look like, and I am ok with that. I want Caroline to show us what she can do. She will show us how strong she is and I know that she will surprise many!

I am so very thankful for this past year.  It has been the absolute hardest year of my life but so much good has come from it. I have grown so much in so many ways. My relationship with my husband has surpassed every expectation I ever had for him and he continues to amaze me. I have grown in my relationships with friends, knowing that I have had and continue to have people that are there to help be a support system to me. I have grown in trying to balance life and love and raising a special needs child and learning how to be an advocate for my daughter. So much good has come from struggles we have had and we are absolutely BLESSED and THANKFUL for this journey. I know it may be hard at times, but always, ALWAYS, try to find the good in everything.

The day I hated disability

So we all have days that we just hate. Where nothing seems to go right and you find yourself in a crummy mood. We have all had them at some point or another. Hopefully not as many but we can all relate.

Well, I had one of those days. It happened to be last week. We took Caroline to her six month checkup at the pediatricians office. We are used to appointments, it really is nothing new for us. We had switched pediatricians about two months ago and have been pleased with where we are now. We were excited to have a new doctor in a place we felt comfortable with. We waited over an hour to see her last Thursday. I guess things get hectic around there but we didn't mind. Caroline was enjoying a good afternoon nap sprawled out on the table and we were patiently waiting. Finally, we were able to see the pediatrician. It started off good, "how are you.....how have things been going" but then when it got down to it, things started to get a little tough. The questions came...."is she rolling over, is she sitting up, is she grabbing for things?"  no. no. no.

I knew Caroline wasn't doing those things. It's not like I haven't thought of all of this before. We KNEW she would be delayed in her milestones but it doesn't make it any easier.  We know she will do things on her own time, she always has. But, to a pediatrician who sees "normal" baby after "normal" baby, those kind of questions just roll of their tongues. It wasn't meant in a harmful way or even a condescending way, just a regular simple series of questions.

It didn't really sink in until we left. You get so caught up in the moment of focusing on your child and making sure to answer the questions that you don't have time for it to sink in. But when I got home, I felt it.

It's tough. I'm not going to lie. There are some days when I just hate disability and everything that goes with it. But I have to be stronger than that. I am stronger than that. We have Caroline for a reason and it has taught me so incredibly much. I have not only learned how to become a parent but also how to become an advocate for her and her disability. I have become knowledgable about a condition I had only heard of before. I have become so much more educated in SB than I could have imagined in the past 10 months, since finding out about our sweet girl.

I am lucky enough to have a brother who has also taught me so much. He is such a wonderful, funny, sarcastic person and always has the best attitude about everything. He has made me appreciate things other people wouldn't and he has made me stay humble. His attitude and outlook on so much would make any person appreciate things. He has taught me more than he will ever know and I hope Caroline will carry his same personality. I could only hope that she does!

I don't mean to make my posts depressing and I don't even mean to make them sympathetic towards us. Really, that is the last thing we want, is to make anyone feel "bad" for us. We don't feel bad for us, we have been given such an amazing, challenging, heartwarming journey and we are truly blessed by it. It was on purpose that we were given our sweet Caroline and we love her so much. The love we have for her is like no other.

So yes, we will have tough days, but I promise the good ones, the great ones, will outweigh the bad ones. I am allowed to hate disability on days...I know I will but I will also love and cherish it. It is for that, our sweet Caroline has changed our lives.

You learn to let it go

So our sweet little Caroline is six months old! Time is going by so quickly! Caroline is starting to show more of her personality by laughing and smiling quite often and is focusing on people and following them more! She is still working on holding her head up for longer periods of time and hasn't quite mastered rolling over yet. She can get her arm and torso turned but can't seem to lift that leg enough to roll. I know this isn't typical of a 6 month old but she is progressing at her own pace. We know that she will be delayed hitting her milestones but we are just happy she is progressing!

It's hard to believe that 6 months ago, we were sitting in the NICU with our sweet girl wondering what life would be like.  We sat by her side, not knowing what each day would bring or if she would make it....and just look at her now. We love having her home and being a family. She is such a good, happy baby and we are just so thankful for every day we get with her! She has changed our lives for the better!

So we are learning a lot as new parents. I feel we even get to learn a little bit more because of all the doctor appointments we have to go to with Caroline.  One thing I am slowly learning is that not all doctors are comfortable with treating Caroline or they may have doubts about her or us being her parents. We recently had a visit from a pediatrician who asked questions about our life which didn't seem to be relevant to the visit. It is frustrating because it almost seems that they are doubting us. To them, medicine/medical comes first. So when the doctor just nonchalantly asks if we are planning on getting a home health nurse...because I guess with full time working parents, we can't possibly take care of our daughter. It's frustrating. We are trying to give our daughter every possible thing she could need to be successful now and in the future. We go to several doctors because we want everything about her checked out and suggestions on how we can help. We are doing everything we can for her.

I am learning as a parent to let things go. I need to let the comments, questions, and stares just keep on moving and not let them get to me. I already carry around enough guilt with being a new mom, wondering if I am doing anything right....I surely don't need the guilt from strangers on whether I am a good mom or not. Jeremy and I have become quite the team and really work well with Caroline. We do all that we can for her and yes managing doctors and appointments would be easier if I didn't have to work, but I don't have that choice right now. I love my job and I love Caroline. We make it work as a family and that is all that should matter. Just because we have a special needs child, doesn't mean that we won't be able to handle what the future holds. Maybe some parents would freak out about all of these things and not be able to handle it, but not us. I am learning how to have more confidence in myself and letting other people know! One of Caroline's doctor, the child development doctor (who we love!) told us a couple months ago that we need to "go and do...take Caroline out as much as we can...she needs to see things and go places" and those words have stuck with me since then. I am getting better and more comfortable about taking her out and we just try to go and do as much as possible. I don't care if we are judged for taking her out..because to us, we are letting her experience all that she can..and to me, that is so important. We are doing the best we can.

I will tell you one thing....we would not be able to do all that we could without our friends and family! We are so lucky to have Jeremy's grandmother stay with Caroline while we work and am blessed to have family for backup anytime we need! We are also thankful for our friends who take us out and remind us to take care of ourselves too. Caroline has been such a blessing in our lives and I don't know what we would do without her. I really can't even picture a life without her!

Six months old already!

Finally an update!

I can't believe that it has been almost two months since I last updated! Wow has life been moving in fast forward and I can't believe it! A lot has happened since our last update- Let's see,  our sweet Caroline just turned five months last week and is growing like a weed! We love the chubby legs and her personality which is starting to show so much! I have had bronchitis (in which I think I have again). We have seen the Urologist at UVA and were told that we would have to eventually cath Caroline, probably within the next year. We knew that was likely for us but we had that slight hope she would be different and not need it. So that was hard news to take but know it will be good for her as she had her first UTI three weeks ago. We have also had her eyes checked (which were good!) and have switched pediatricians (finally) and have found one we really like so have been very thankful for that!  A lot of good and positive things have happened in which we have been moving in the right direction!

I am almost done with the school year, (18 days left!!) but we have SOLs this week. This is the craziest, busiest week for everyone at school and will be glad when it is over.  I know my kids have worked hard this year and even though I was out on maternity leave, I know that they will do great! I am excited to have time this summer with my sweet girl and get to be home with her! I feel she gets so big everyday when I get home from work. I want to be around to see all the little changes in her, especially while she is so young.

I did have a breakdown last week, which I considered to be pretty good since I hadn't had a major one since we were in the hospital with her 4 months ago! I knew that I would have hard days but still doesn't make things easier. I just get caught up in worrying about her future and stress myself out. I am thankful to have my husband who keeps me grounded. He told me, when I had asked what we would do if she had severe cognitive issues, "we will love her everyday, no matter what" -- man did my heart just melt when I heard that. Of course we are going to love her no matter what and that is what I need to focus on. My love for her will never change, no matter the situation that arises and I am thankful to have Jeremy as my husband and as a father to our sweet Caroline.

I follow a few posts on facebook that talk about Spina Bifida and ran across a particularly special post today. It was written by a mom who has an 18 month old son with SB and I could relate to so much to her words.  She talks about when she found out she would have a child with SB and says "How am I going to do this? You just do, you find strength you never thought existed within you and you fight for your child."  I know exactly what she means when she says you find strength you never knew you had. Some days I wonder how we will get through everything but you do. It becomes so much a part of your life that you just adapt. I know Caroline will have struggles but I see her as any other child in my eyes. I don't see disability. The mother also wrote, "I know there is always a chance he might need one or more surgeries down the road but worrying about the future does me no good. I would rather enjoy every step of our journey and create fun lasting memories." I would love to have that mentality of not focusing on the outcome of the future but just enjoying the here and the now.

I have to say though, that Caroline has taught us so much about appreciating all that we have and learning to see the best in every situation. We have been so thankful to be home and raise her.. (those 39 days in the NICU was exhausting, we are so very thankful to be home!), we are thankful for the love and support from our families, day in and day out, because we surely couldn't do it without them! We are thankful for Caroline's g-tube which allows us to feed her so she can grow big and strong, we are thankful for all the appointments she has because that means she is under the care of those that care and want her to succeed in all aspects of her life. We are thankful for the friendships we have and those friends that love our little family and support us in so many ways! We are trying to see the good in everything that comes our way, even if it is something small. I know that Jeremy and I will be able to handle whatever comes our way. I am so incredibly thankful for my little family and this journey we are on together!

Be Kind

I have this quote on my board in my classroom right now and I love it. I think it applies to so many areas of my life.  It applies to my job and students...I encourage them to be kind to one another, it applies to me....I want and try to be kind to other people, and most importantly, it applies to my daughter. I hope that her world is filled with kindness in every way. I know that is very optimistic of me to think her world will be nothing but kindness..but I hope it is. 

I have been deciding on whether or not to write this post but felt I needed to. So apologize if it seems "too much" but I need to write about it. I want to look back on these posts and see everything we have been through in this journey with our sweet girl. So here it goes. 

I have realized recently how incredibly human I am. Yes, I know I am human but the feelings that I have at times has been creating struggles within me that I am learning to accept. I don't know when it hit me that we were raising a child with special needs. I have known about Caroline having Spina Bifida since I was 22 weeks pregnant. I had 18 weeks to come to the realization of what it actually means before she entered this world. I think I didn't want to focus on it, that I knew Caroline would be perfect in every way...and she is...she is everything we have dreamed about and everything that fits wonderfully into our life. I just didn't think I knew all the "extras" that came with her.  Now, I'm not talking about the extra medical things....more doctors, more appointments, more equipment...that was expected and I was prepared for that. I am talking about the feelings that come with raising a child with special needs.

I worry about my daughter everyday. I know all parents do that but my worry seems to take a deeper level. I worry about her well being, about her accomplishments, about her future and her having to face those with Spina Bifida. I have so many feelings that I have felt since she has been born and I feel guilty for evening allowing myself to feel them. But, it does make me realize how truly human I am. My child will have to overcome a lot more obstacles than most in her life and because of that, it scares me. I have felt hurt, and guilt, and worry, and heartache, and joy, and happiness, and anger, and confusion, and struggle, and a million other emotions. But the biggest thing I have felt since Caroline was born is love. It is such a different, special kind of love. A love that fills your heart so much that you can't imagine your life without her. A love that brings you to tears just by thinking of it. A love that I am lucky enough to know.

I know she will face challenges in her life and I want her to know, I want to teach her, that she can overcome them. That her kindness and heart will be enough to conquer them. I want her to truly believe in herself. I also want to allow her to be human, just like me, to let her know that it is ok to feel different emotions. It is ok to feel discouraged, hurt, lonely, sad, angry, or anything else she may feel in her life. But I want her to know that having those feelings makes her a stronger person. That no matter what her life gives her, she WILL get through it. I want her to know the love and support she has surrounding her from friends, family, and so many others. I want her to feel the kind of love that I feel for her. There is no greater feeling!

I also want to thank those that have invested their time and energy in our journey with Caroline. It has made such an impact on our lives and it has allowed us to have these feelings and know that we have support from so many. It has allowed us to become stronger and know that we can be great parents for our sweet little girl. Thank you so much for helping create the extraordinary love we have for Caroline. 

Settling In

As  I sit here listening to the sound of the ocean on Caroline's sound machine, I could easily fall asleep. Instead, I am drinking a cup of coffee and updating the blog. It has been something I have wanted to do for a week now but just couldn't find the time to sit and write. So while she is sleeping away so peacefully and Tyson is snoozing at my feet, I figured this is the perfect time.

We have been home for 7 weeks now. The time is flying by so fast. I remember the day we brought her home. so clearly, like it was yesterday.  I was so overwhelmed and anxious and I am glad *knock on wood* that things have settled down some. We have made two trips to the ER since being home but both turned up pretty inconclusive. We have made several trips to Charlottesville to see numerous doctors like the Neurosurgeon, Audiologist, Neurologist, Orthopedist, Physical Therapist, Child Development Pediatrician all the while having a nurse come to the house three times a week to check weights on Caroline to make sure she is growing like she should be. We still have to see the eye doctor and Urologist and schedule an EEG at some point.  We also have a Pediatrician that comes twice a month to check on her. Not to mention we are also trying to get in home Physical therapy, Speech, and Occupational therapy set up for her. It goes without saying that life has been pretty hectic around here lately and we are all just trying to establish somewhat of a routine. On top of all of that, I have to go back to work next week. I have spent several hours just organizing my life and trying to keep up with everything. We have a large calendar that I have written all appointments and important dates, plus I keep one in my purse to write them as we schedule them. I have also created a large three ring binder to keep up with all the papers we are given. I love to organize and am a type A person but sometimes I feel even I can't organize everything! I am slowly working to create a system that works for all of us and is easy to use. I know that it will help keep us sane!

So as my maternity leave draws to an end, I am having such mixed feelings about everything. I read this article recently that explained to a husband what a mother on maternity leave does and I totally get it. It may look like a new mom has such an easy job or you may think that when your husband gets home from work and he sees the house a mess and wants to know what you have been doing all day can be a frustrating stereotype. (kind of like when people stereotype teachers about having the summers off...ugh...but that is another whole story!) I have been thankful that my husband understands what I do all day and he knows that it is not an easy job. But the article I read made sense. It said that it is sometimes hard for husbands (and others) to understand because having a baby means the mother has gone through the biggest change in her life all at once. She has had her body altered in several ways, she has given up her social life, she is now responsible for this little precious life all the while she is having hormones go crazy. Not to mention, she can't even so much as have a couple drinks because of all the breastfeeding/pumping she is doing. All of this happens at once and it may be hard for some to understand. It is a very emotional process and yes things will get better, will get easier, but for now, being home all day with a newborn can be exhausting! I give props to all the stay at home moms for all they do!

I have to say that I am looking forward to being back at work. To have some "normalcy" back in my life (what does normal even mean anymore?) But it will be good to see my students and settle into a routine. It does make me anxious to leave Caroline but I know she will be in good hands. We are fortunate enough to have family stay with her in our home while we work. I will miss spending that time with her everyday and getting to see her subtle changes and growth. It's so amazing to see her personality start to come out and the new things she can do. It makes my heart so full, especially on days that seem a little too overwhelming. She has been more of a blessing than I ever could have imagined or hoped for. We got lucky when she became our daughter!

Well the sound of the ocean is taking its toll on me (what I would do to be listening to the real ocean!) so I feel it is best if I get some sleep. You know what they say, sleep when the baby sleeps! Thank you for all the love and support our family has received during these past three months. We have been fortunate to have some pretty special people in our lives. We are thankful for all the messages, cards, and especially all the wonderful meals (from our friends and my sweet AMS family) that have been prepared for us. We are so grateful to have a wonderful support system to share our good times and bad times with! (Definitely more good!) We look forward to sharing Caroline's journey with everyone!

Home Very Sweet Home

I do not think I could express in words the feeling of coming home. January 4th was a very special day for us. After 39 very long days in the NICU, we were excited to be able to head home with our sweet little girl. Finally, we could cuddle her without her being hooked up to machines, we could lay beside her in the bed and just admire the little person that she has become and all that she has overcome, we could shower in our own bathroom and cook real food in our own kitchen. There was just so much about home that I had missed. Now, I am not going to lie, I was very anxious and nervous about coming home with her, just as any new mom would be. But, honestly, everything felt so right when we got home. Our house had been cleaned, fresh flowers and pictures of Caroline were spread over the counter, "Welcome Home" banners were hung, our freezer full of food, and the house was nice and warm, ready for our arrival. We were thankful for our friends and family who made our coming over even more perfect. It truly was a very very special day! 

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)

                                     (Gee, her great grandma, meeting Caroline for the first time!)

(My mom, Grandma, holding Caroline for the first time)