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)

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!! 

22 days old!

 

Our sweet little Caroline is 22 days old! I can't believe that she is over three weeks old..my how quickly time goes by! But, 22 days also means the number of days we have spent in the NICU with her. Like Jeremy had pointed out in the last post, we have gotten to know a lot of doctors, nurses, and other staff there over the past three weeks. We are  so very thankful for the nurses and doctors that are there to take care of our sweet girl. One nurse told me today that I needed to take care of myself because that is important and they are there to take care of Caroline. She also added that they are the most qualified and expensive babysitters! I think really they may just be getting a little tired of me hanging around the NICU all the time and just looking at Caroline. I really could just sit beside her all day and stare at her! Plus, Jeremy had to go back to work this week so I have literally been at the hospital all day long!

Caroline has definitely come a long ways this week! After that downward spiral she made last Wednesday, we have been in awe about her recovery. The cause of everything is still unknown. The doctors make their rounds on Friday with the Neuro team and there were 15 doctors standing around Caroline. (I didn't make that number up, I counted all of them today!) But a couple of the doctors seem to think there may have been some swelling/bleeding on the brainstem that caused her to go downhill last week. They don't know the cause and I asked if it is something that could happen again and they didn't know. Caroline was really fussy all day yesterday and even spit up after one of her feeds so I was on edge all afternoon/night. I thought for sure we were going back down the same road and just became emotional about everything. The nurse last night was telling me that babies are allowed to have bad days like we do and maybe she was just having a bad day. Well that seemed to be the case because she had a much better day today. I am always scared that I will jinx things too. Just when I start to feel comfortable and happy about things, it seems something always happens. I surely hope writing this post about how well she is doing doesn't jinx it! I want her to keep improving and progressing! She has come so far in the past 22 days!

So the NICU doctors today mentioned the word "Discharge" today and I was caught off guard. I didn't think we would ever hear that word in the near future but it was nice to talk about so upcoming events and maybe to start getting the ball rolling with getting her home! It is definitely going to be a long process to get her home but we are excited to at least be talking about it. We were hoping to be home by New Years but seems that will change. It looks as if Caroline will need to get a "G tube" which is a feeding tube in her stomach before they will send her home. The surgeons do the operations on Tueday so we were looking at next Tuesday well because it is the holidays, they aren't operating next week on elective surgeries, only emergencies. So that means we will have the surgery done December 29th.  Then she will to spend a few days recovering from that. So it seems at least another two weeks here for us. We are fine with the G tube because we are hoping it will only be temporary. We can still keep working with her on her oral skills and try to get her to take a bottle but at least with her having the feeding tube, we will be able to take her home! There is also a long checklist we need to check off before we go home but I am glad things are heading in that direction (Again, I don't want to jinx anything!!)

I have been able to stay in Charlottesville with Caroline since she was born. Jeremy had to return to work this week and has made things challenging at times. I didn't realize how exhausting it is sitting in the hospital all day long by myself would really be. Also, I know Jeremy is exhausted from driving back and forth each day. But, we just have to do what we have to do and we know this will only be temporary!

I was talking to the nurse today and she was talking about what great parents we will be and talking about how she just knows the babies that are going to succeed when they go home because of their parents. We have also had a few people tell us what great parents we are but you know what? I don't think we are some extra special wonderful parents that have super powers or something like that... we are just your normal parents. We love this little girl so much and would do anything for her...isn't that what parents are like? You just do what you have to do for your child...and we would! We knew that bringing Caroline into this world would come with challenges and she would need extra things in her life but we want to do that for her. We want to give her the best possible opportunities she can have in this life! That is what any parent would want for their child, no matter the circumstance!

I just want to say thank you again to everyone. It really makes our day to see the wonderful comments, texts, calls, letters, etc from so many people! It amazes me about all the kindness and support we have been given throughout all of this! We have enjoyed the wonderful visits from family and friends (they were much needed!) and all the love our sweet girl has received! She truly is one loved (and probably spoiled!) little girl! Thank you again for everything!!!!

We will keep everyone updated and we hope that she keeps continuing to improve! We are so amazed at everything she has already overcome! She is such a fighter!!

A Mother's Love

A story has no beginning or end; arbitrarily one chooses that moment of experience from which to look back or from which to look ahead. 

- G. Greene

Just going to warn you again, the husband has taken over this blog update. Also to mention, the quote above wasn't from a novel that I've read over the past two weeks, just thought it fit as most stories are generally related to one's life experience and how that experience changes one's life - you are the only one who truly has that choice. As you all are very much aware of what's been happening with our Sweet Caroline over the past week(s), I feel at will that some, certain things should not go unsaid/unknown... here we go.  

Going back even before the original blog post, even before Caroline was a thought in any of our minds, there was something within Julie that I knew was there from the moment I met her. I've been fortunate enough to be with and have someone who has the biggest heart I know. Maybe it's the nine month bond that one has with their child prior to birth is something that no one can ever take away from them, or understand. Trying to comprehend someone else's experience is impossible and I for one am the worst at it. But, the one thing I do understand is that Caroline is everything to Julie. We've been sitting by her bedside for over two weeks now, every day, typically at least ten hours a day. All of the doctors know us, the nurses know us, the janitorial staff even knows us, and the entire neurosurgery department definitely knows us. It has gotten to the point where that's all any of us actually knows. Caroline has been a mystery for everyone within the NICU. Julie and I have officially run out of things to talk about, unless it regards Caroline, which is acceptable, but conversations are almost always questions about how the day went (IE: what changed, what symptoms are there, why this, why that, etc.). In the meantime, a flood of emotions have been building for the past few days, especially with the recent set backs earlier this week. We finally had a bit of a breakdown going to lunch one day this week and it wasn't about having to go to Chipotle for the fifth (or maybe sixth) time in the last two weeks. Everything just seemed to get serious real quick - almost surreal. And it may sound selfish, because it is, but constantly being around other newborns in the NICU that are crying, burping, progressing... it makes it so difficult for us to sit and wish we were on their end... It's an unsettling feeling like we haven't done enough for Caroline to be healthy enough like the other babies around her. Even with the continued thoughts, prayers, and support of everything - it is just simply, exhausting. 

And it all kinda fell in place when seeing both of our moms this week. By them seeing us go through what we're going through and not having any answers of their own, the ones who raised us and practically had an answer for anything and everything while growing up, it just doesn't make sense. Granted they aren't Neonatologists or Neurosurgeons that have infinite knowledge of brain function or operating on the brain - they are experts on comforting and protecting their own. A mother's love is stronger than any medicine Caroline has had yet. Having and expressing that kind of love for your child is the most important thing you can do to help in almost any circumstance. Julie and I are so fortunate to have felt that love before now, it allows us to try and replicate it for Caroline. 

Just watching Julie care and love Caroline the way she does is indescribable. When not able to hold her, Julie and Caroline look at each other like they both know exactly what they both are thinking. When holding her, neither want to let go of the other. Even when Julie walks into the room and she responds to a nurse or doctor, Caroline knows her voice and almost instinctively knows she's by her side by opening her eyes looking for her. Any sign of comfort for either of one them is all they want, it's all I want. And that's what makes all of this so special - we're creating an experience that will never be forgotten or lost. This feeling is something that can never be known unless you're the one going through it yourself. Julie is an amazing wife and an even more amazing mother. Just me being near both of them at this time, makes my heart complete and would feel lost without them.  

To finish this post, as I have been working off and on on it for three days now, I just wanted to share some more quotes that I feel are so true when talking about this rare love between a mother and daughter.. 

-- A mother is the truest friend we have, when trials heavy and sudden fall upon us; when adversity takes the place of prosperity; when friends desert us; when trouble thickens around us, still will she cling to us, and endeavor by her kind precepts and counsels to dissipate the clouds of darkness, and cause peace to return to our hearts. -Washington Irving

-- Mom, I cannot thank you enough for what you have done me. You were always there when I needed you the most.

-- A mother’s arms are more comforting than anyone else’s. -Princess Diana

-- When you are looking at your mother, you are looking at the purest love you will ever know. -Charley Benetto

-- To the world, you are a mother. To a family, you are the world.

Thank you to all of you moms out there!!

Jeremy

 

Day to Day

So I know we just updated the blog a few days ago about our sweet Caroline but so much has changed since then. I figured instead of writing a long facebook post about everything going on, I would just update this and that way I can write it all out.

Caroline was finally making some improvements over the weekend. She was starting to take to sucking (some), her back was looking better since adding the 2nd antibiotic, her shunt was still looking good, and we got a lot of snuggle time in with her. Then, yesterday, things started to go downhill. We noticed that her stats kept dipping throughout the morning. Her O2 (oxygen) level, which normally runs around 95-98 was dropping into the mid and upper 80's. It would drop for just a few seconds and then she would "recover" and come back up in the 90s. As the day progressed, the dips seemed to last longer and longer and the numbers got lower. The lowest I saw last night was 69. Jeremy and I just sat in her little area by her bed watching the monitor constantly. As soon as the alarms would sound, we knew she was dropping. Also, yesterday, she began spitting up. First it was right after her noon feed and didn't think too much of it but then it happened at her 3:00 and 6:00 feed, even with slowing the feed time down over an hour. She finally had a major throw up last night while I was holding her. She looked so pitiful and helpless and it absolutely broke my heart. Also, her blood pressure crept up throughout the day and was pretty high last night. Around midnight they decided to put her on some "slow flow" oxygen. Jeremy and I stayed until about 2 in the morning just watching her. At least with the oxygen, she wasn't having as many dips in her stats so we felt it was ok to sneak away to sleep for a couple hours. I still did end up calling twice during the night to check on her and the nurse told me there had been no changes.  

I went over to the hospital around 7 this morning to see her and as soon as I walked in, about 8 people came in behind me. Before I knew it, I was surrounded by residents and doctors from the NICU and Neurosurgery. Everyone was asking questions about the timeline of events and I was trying to provide as much help as I could as we had been by her side the entire day before. Soon everyone was putting in orders of things they wanted done...kidney ultrasound, MRI of the shunt, bloodwork done, moving her back to the critcal care side of the NICU, chest xray, another attempt at finding the picc line, etc. It seems the list of things they wanted done kept growing. I was thankful they were looking for answers. I must have looked like a deer in headlights when all of this was going on because the doctors were very comforting as I just stood there crying, not knowing what to say. They reassured that everything would be fine and she was in good hands. After I had my meltdown in front of everyone, they moved her to the other side and began prepping for the tests. I noticed that Caroline was twitching her right arm and neck, like she had been doing all day before, and happened to mention it to the Neurosurgeon who was currently examining her. She then ordered an EEG (where they put about 20 probes on the scalp and monitor brain waves) to monitor for seizures. I told Jeremy yesterday that is what it looked like and even mentioned it to the resident on duty and the nurse and everyone shrugged it off as not a big deal. So they gave her medicine to treat seizures and have her currently hooked up the EEG machine.

As of now, the MRI came back clear. The fluid on the brain has not changed since the last MRI last week so that helps to almost rule out the chances of something being wrong with her shunt. That is a very good thing because we definitely don't want it infected and we definitely don't want them to have to go back and replace it. Her labwork came back pretty much normal. Her white blood cell count was slightly elevated but nothing concerning. Her kidney ultrasound showed some mild dilation so they have been cathing her every 6 hours to make sure she is emptying her bladder completely. (Cathing is very common in children with SB so this just seems more standard protocol).  We will not know the results from the EEG until Neuro looks at it and sometimes they let the machine run for a couple days, depending on what is being seen on them. She did have two more "twitching episodes" shortly after being given the seizure medicine, but hasn't had one since. Because they gave her a "loading" dose of the seizure medicine, she has been asleep the entire day. They also had to put her on more oxygen because the side effect to the medicine can make babies have shallow breathing and of course Caroline did.

So we haven't gotten any answers as to what is going on with our sweet girl. It has been a very long and hard two days. It is the worst feeling to watch her laying there, so helpless and pitiful, and not being able to do anything for her. I feel guilty leaving her at any time but I know she is in great hands. Jeremy had to make me leave tonight earlier than usual because we only slept for a couple hours last night. It's a hard feeling for a mother to leave her sick child. I feel so bad doing it but it is not practical to stay/sleep in the NICU with her.

I am just very thankful that they were able to get her stable today and now she is resting. She has not had a temperature through any of this and she also has not been in any pain or discomfort. I am thankful for those two small things during all of this. We don't need anything else added to what she has going on. I just hope and pray that they doctors can figure out what is causing her to be so sick and find a way to treat it.

We also thank everyone for the wonderful words and prayers today and yesterday. We know that she is a strong girl and has so many people cheering her on! We will keep everyone updated on her progress over the next few crucial days! Thank you again!