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!

Our little turkey!

Well as most of you know, Caroline Leigh Robertson was born on Thanksgiving day! She was born at 5:09 P.M. weighing 5 lbs 15 oz! I woke up that morning not feeling so great and even said to Jeremy that if it wasn't Thanksgiving, I would go to the hospital and have everything checked out just to make sure. Little did I know that as my family was arriving at my parents house for Thanksgiving lunch, my water broke! This all happened around 1:30 and luckily my parents live right by the Baptist Hospital so we went there first and then I was transported by ambulance to UVA.  As soon as we got there, it was probably 20 minutes before I was in the OR prepping for the c-section. The c-section seemed to take forever. It was about an hour to prepare once in the OR and then they allowed Jeremy to come and in about 5 minutes, Caroline made her appearance into this world! Then it took about an hour to finish sewing me back together.  I did get to see Caroline for a brief second before she was taken to the NICU, where she has been since she was born.

We have been in Charlottesville with Caroline since last week. It has been a very long and emotional week and we are looking to spend at least another week here. As most of you know, Caroline does in fact have Spina Bifida. (Technical term is myelomeningocele, myelo for short....in which all the doctors here refer to it as). She had a large opening on her lower back, about the size of a half dollar. Most babies born with SB have a sac protruding from the back but hers had ruptured at some point (not sure while she was still in utero or if it ruptured during delivery). The doctors bandaged her up right away and kept it covered until her surgery. Her head was slightly enlarged due to the fluid on her brain. All of these things we knew (well, we had an idea about) which made the process a bit easier in the fact that we were aware of all of this before she made her appearance. She was scheduled to have her surgery the next morning. Dr. Jane Jr., the Neurosurgeon, did the shunt surgery and closed the opening on her back. He is an absolutely phenomenal doctor and has done several SB surgeries. He told us the morning of the surgery that he was there all day and was in no hurry. He was not going to rush anything so to not worry if it was taking longer than expected. That really helped ease my mind because waiting around is the hardest part. She went into surgery about 10:30 that morning and was finally done about 6:30 that evening. It was a very long day, for her and us both. Her shunt was done first, put in on her right side of her head and has a long tube that goes behind her ear, down her neck, and into her stomach to drain. Then the back was closed. This took the longest as Dr. Jane Jr. had to basically recreate the part of the back that didn't close so he had to tuck in the spinal cord and cover it back with nerves and skin. Finally, the plastic surgery team took over and somehow was able to get enough skin to cover the lesion. The scar is pretty intense and is quite large but Dr. Jane Jr. said it was the best looking scar for SB that he has seen. That is reassuring and it truly is amazing how they can repair it all!

Caroline spent 4 days in the intense part of the NICU, basically just one large room with tons of nurses and doctors always around. It was loud and bright the majority of the time but she had specialized one on one care with extremely trained nurses. I have to say, I have so much respect for the nurses. I could never in a million years do the job they do! They deserve so much respect and praise for their jobs! After about 4 days, Caroline was moved to a different "pod" in the NICU that isn't as one-on-one as where she was. It was a good thing that she moved because that meant she was making progress and no longer needed it but I had a hard time letting go of the individualized care. Where she is now, she has a nurse in which is shared with two other babies. We have had some good nurses there but then we have had a couple in which I don't think NICU is the best fit for them. But, that is just a worrying mothers opinion- I know they are trained for it!

We have had our good and bad days since. She made a lot of progress right out of the gate and was doing wonderful! Then, a couple nights ago, we had a slight setback with her back. We noticed the incision site had gotten extremely red and was draining. The nurse paged the doctors who brought in the plastic surgeons to look. The plastic surgeon removed the dressing (extremely sticky dressing that was pretty much suctioned to her back- pretty painful to rip off!) and then she squeezed all around the incision site to drain it. It looked so painful to watch her squeeze on it and Caroline was just screaming! It broke my heart! They decided to start her on another antibiotic in case it was infected, did a skin culture, and then gave her some tylenol. She was so fussy and upset all night. Her blood pressure was up, her temp was up, and so was her heart rate. It truly broke my heart to see her so upset and in pain and I couldn't pick her up and hold her. We ended up staying until 1:30 in the morning until she finally settled down after two rounds of pain meds. Jeremy had to pull me away from her that night so I would get some sleep. I tell you, it was extremely hard to leave that night but honestly, it is hard to leave every night. I just want to be there when she cries and I just hate thinking that she does it during the night and I am not there. I have been trying to not be so hard on myself because I know she is in good hands but it is just the mother nature to want to be there with her.  Since that night, she has been doing much better. She is still only allowed to lay on her stomach which is frustrating because she gets so restless not being able to change positions but we know it is for the best to help her back heal. We are praying that she can at least be able to lay on her left side soon! We are working on getting her to feed as that is a big deal before going home. She is also on her antibiotics until Friday. We just keep praying every day that she makes progress and that we are one day closer to bringing her home!

Sidenote but I have to tell you, I couldn't do any of this without Jeremy. He has been my rock through all of this and I know I have mentioned that before but it is very true. He has lifted me from some dark moments during all of this and has been there to let me have my emotional times. He has made me laugh at times when I wanted to cry and has tried to keep balance in our lives. He has stepped in and become such a great father to her and an even more loving and supporting husband. Caroline and I are so lucky to have him in our lives!

I have to say as well, the love and support we have gotten from so many people via texts/emails/messages etc has been so wonderful. I apologize for not responding to all of them but I want everyone to know that we read them and we just love to hear how much support our little Caroline has!! She is one loved little girl by so many! We can't say thank you enough for all the nice words that have been shared and how so many people are willing to help in any way they can! Thank you, thank you, thank you!!

We will continue to keep everyone updated, mostly by facebook, but will update the blog as we continue on this journey with our sweet girl. We have a lot of unanswered questions at this point of what Caroline will be able to do. Most of it will depend on time. Dr. Jane Jr. did say something that has stuck with me...he said "Don't ever let anyone set limitations on her."  He said he has seen so many kids overcome obstacles that people told them they couldn't. We have to believe that Caroline can do anything she wants! We are nervous/anxious/excited to see where our journey with her will lead but we know we are so very lucky to have her in our lives!  Please keep the prayers coming that our sweet girl with be home soon! 

Counting down the days!

So we are a little over 36 weeks and can't believe the time is getting so close for her big arrival! We are still planning for her to come into the world on December 1st! (keyword is planning- I already think she is a little stubborn does things on her own time so we will see!)

We have been having appointments twice a week and will continue until she comes. I go to the regular OB on Monday or Tuesday's and then we head to UVA on Fridays to meet with the fetal medicine doctors. I have to say, I don't know if my regular OB (Phemister) has said anything to UVA but we have seen such a huge change in the staff and doctors at UVA the past 3 times we have been! We haven't had to see the one doctor we were not happy with and have actually been seeing the director of the program and have just been really impressed with him. He is actually the one that is going to be doing the delivery and we are just very excited about that! We have been thankful for the change in everything, whatever may have caused it, especially it being this close to the end, it gives us peace of mind that we are in good hands!

So I had mentioned in my last post that the doctors were concerned about the weight of the baby and then the blood flow from the placenta so that is the main reason we are being seen twice a week. We have had very good and consistent ultrasounds and have been very glad that things look good each time we go! I did have to go over to the Labor and Delivery unit on Monday because after my BPP test with Phemister, he just wanted to have a little extra testing done so he sent me there. He said they only saw 2 movements from Caroline on the BPP and they needed 3 so he said he was being overly cautious but wanted to send me over there anyways. I didn't mind going because I know it is all for Caroline and I definitely want to know things are going well. We met another doctor there, who we really liked, and he reassured us that the tests and everything looked "perfect!" All of this monitoring has put me on high alert that things could change any day but lately I have been feeling good about everything and am happy that we are getting the extra monitoring to keep her growing and healthy!

We had the chance to tour the NICU today at UVA and honestly, I don't think I was emotionally ready for that. I knew it was on the agenda today but I had no idea how hard it would be until we actually got there. I am very thankful that we had the opportunity to see it and meet with the director and some of the staff there and I know, without a doubt, that Caroline will have absolutely wonderful care there but it was still hard to see. It just made everything seem so real. Everything was mentioned about the Spina Bifida and how every part of it would be addressed and handled. The neurosurgeon will be the first to see her to assess her back and she will have the surgery the day after she is born. She may possibly also have the shunt surgery at the same time, depending on the fluid on the brain when she is born. After she is in recovery from the back surgery, she will see the urologist to assess bowels and bladder and possibly start catherization if needed, then she will see an orthopedic doctor to asses any issues with clubbed feet and movement of the legs. We will also have a social and case worker assigned to us with help with housing for us during that time and insurance things. It is all just very overwhelming and it is really hard for me to know that she has to go through all of this. I know everyone will do a great job and we have a great team working with her but it is going to be hard to see her hooked up to all those wires and having to recovery from surgery so soon after she is born.  I am glad we got to see everything today and know that everything is getting so close and so real and have been feeling a little emotional about it all. I just hope and pray that everything goes as smoothly as possible and that she will be a fighter!

We thank everyone for the love and support and know we couldn't go through all of this without you! The support we have going into these next few weeks means so much and I know many people are excited for her arrival! We will keep everyone updated as the big day gets close!!

35 weeks and counting

So yesterday marked 35 weeks! Hard to believe we are getting so close! I feel like she (and I both!) having been growing a lot in the past couple weeks!

We had our appointment today at UVA and it went pretty well. Our plan, as of now, is to have the c-section during week 38 (which would be the week of November 16th). The reason I say, as of now, is because it can change depending on how the next two weeks leading up to it look like. I am going to see my OB (Phemister) for my NST and BPP on Monday and then head back to UVA on Friday for another BPP and ultrasound.  The doctor is concerned about a couple things so is asking I do the testing twice a week. One concern in her weight. She is 3lbs 13 oz as of today (which I am happy because she has gained 8 oz since last Thursday!) But she should be around 5 pounds which puts her in the less than 10th percentile. Another concern is the blood flow from the placenta to the baby. It is still within normal limits but isn't as strong as the doctor would like. So we will keep an eye on all of those twice a week plus she is having me count movements to make sure the baby is moving like it should. If anything changes between now and 38 weeks, they will deliver. The doctor said that I need to have my bag packed and bring it with us each week in case anything changes, they will deliver that day!

We got to meet a new doctor today and we really liked her. She took the time to explain things to us and made us feel comfortable with where we stand with plans and she was honest about the concerns she has with the baby. She also went over the delivery plan with us and what we should expect. They will likely do a c-section and make a "classical" cut, which is a vertical incision as opposed to horizontal because they want to make sure they have enough room to get the baby out without causing anymore damage to the back.  She explained the process from the time we walk into the operating room to what the days after and recovery would be like. She explained everything really well and am glad that we have gotten to speak with someone at UVA that has helped us understand. She didn't really touch on Spina Bifida much...the baby is still breech and face up so they can't see the spine. The ventricles have seemed to have gotten some smaller but today was the first time they could see fluid on the brain.  She expected that to happen either right before delivery or soon after. (Fluid on the brain and the enlarged ventricles are both signs of SB).  There isn't much else that would change at this point in regards to SB so we are planning and ready with the Neurosurgeon and team for Caroline to have the back closure surgery soon after delivery and then a shunt surgery a week or two later.

As of now, this is our game plan. Like the doctor said, it could change from week to week. Really, all we can do is wait! She explained that if things are looking good over the next couple weeks, she may even push it back to 39 weeks (week of Thanksgiving) in order to give the baby's lungs time to fully develop! It may be a tough call to make to determine where is the best place for baby, inside or outside. So we will keep our fingers crossed and keep praying that Caroline will make her arrival when she is ready!  But for now, Jeremy and I have a lot to get done in order to be prepared for any week!

On a side note, we had our baby shower last week and it was absolutely perfect! Our Caroline was showered with so much love and support from family and friends, it truly was amazing! Thank you for all the encouraging words and love along the way! We have come so far since finding out we were going to have a little girl and we wouldn't want to change it for anything! We are excited (and, I'm not going to lie, a little bit scared!) about the next chapter in our lives with Caroline but know it will be full of love!

32 weeks down, less than 8 to go!

Sorry we haven't updated recently. There really hasn't been much of an update from the doctors. I feel right now we are just in the waiting phase until Caroline is born.

We did see a doctor from UVA last week and we have not been impressed with him so we are going to ask to see a different doctor on our followup. We have met with this doctor once before and I am sure he is a very smart doctor but his bedside manner is absolutely terrible.  He came into the room this past visit and was very concerned about her growth and said that she had "fallen off the growth curve" and so I was worried and I told him yes we know she is small, is she not growing? and his response was, "oh, you already know that she is small?" He had not read or even bothered to look at the last TWO office notes from UVA regarding the discussion about her growth. So really, she has grown since the last appointment and yes we know she is on the smaller side. I was really upset that he had us worried about her size when really he just hadn't bothered to look back at the previous office visits and she was still growing and making progress.  Also, he kept telling us "this isn't something to take lightly" about everything. I'm sorry, I know that we may be young and this is our first child but we have in no way taken any of this lightly. Just because we don't cry and get upset at our appointments doesn't mean that we are taking this lightly. It has just been frustrating with him and he dances around answering our questions and just seems very demeaning to us. We will definitely be seeing another doctor on our followup.

Anyways, enough of that complaining! We did see our regular OB, Dr. Phemister last week as well and he has been absolutely wonderful. We have been recommended to have weekly stress tests on Caroline until she is born because of her size. So we had our first test on Friday and of course she passed! We know that she is a little fighter and wants us all to know she is doing just fine in there! I also had my sugar test a couple weeks ago and passed that and had to get a couple of shots. Those shots were no joke, made my arm hurt for DAYS! I thought getting the flu shot was bad! Phemister reassured us that things were looking good. He said she is in the 10th percentile for her weight but he is actually happy with that. We will just keep praying that she keeps growing and making progress over these next few weeks!

They have not set a date for our C-Section yet. We will go back to UVA on November 2nd and they will schedule a date then. They usually schedule around 39 weeks which happens to be Thanksgiving week so I don't know if they will keep it that week or if they will try and wait until my due date or make the appointment even sooner. So she could be here anywhere from the middle of November to the beginning of December!

Last weekend, I had the privilege to sit down and talk with a mother in Lynchburg who has a daughter that has Spina Bifida. I consider this a privilege because being able to talk to someone who has gone through everything that we are going through and can give us insight into raising a child with SB is just amazing. We could spend hours upon days researching and learning on the internet (which we have done!) but there really is no replacement for someone who has actually lived it. She gave us a lot of reassurance that we can do this and we will make it work for us. She talked to me about the whole process from the time she found out her sweet little girl had SB to delivery to being home for the first time all the way until where she is now. Her little girl is 12 and is riding horses and loves dancing! It truly was just amazing to listen to her talk about how, yes, things will be different but they will still be just as good! We will definitely have to make some adjustments but Caroline will still have a wonderfully beautiful life and we will do whatever we can to make sure that she does!

We thank everyone for the love and support! Caroline has no idea how much she is already loved and cared for by so many people! She will definitely be a little on the spoiled side and we are ok with that! We will keep everyone updated over the next few weeks until she makes her big arrival into this world very soon!

Coming up with a game plan!

Sorry this post won't be as short and humorous as the last one my husband wrote!

So we had another appointment today. Today we went to UVA to have yet another ultrasound done and then met with the pediatric Neurosurgeon. The ultrasound went fine, same as it has always gone. They tell us they can't see everything they need to..... I think that is starting to just become what they say to us because we have now had four and every time they tell us they can't see everything they need to. My hope is that they are looking for things that aren't there!

We met a new doctor today after the ultrasound. He is a high risk pregnancy specialists and came in to look at the images and only spoke with us for a few minutes. He didn't really give us any new information. He said he could not the sac at the bottom of the spine still and he couldn't explain why we haven't been able to see it (with Spina Bifida there is a sac where the spine is pulled down and collects). He did see the split in the spine and said it was in the lower spine (Lumbar and Sacral) and that it being lower down is always a better sign than it being higher up (The farther down it is in the spine, the less it will likely affect).  He asked about amniocentesis and or any other testing that I have had done. I explained that we did not do the amnio but I had the quad screen done and they tested for MSAFP (this blood test will look at the fluid in the mothers body and can indicate if spinal fluid is leaking into the uterus which would likely pass through the blood stream which would indicate an open tube defect). We chose to do this test because it wasn't invasive and although it is not a "yes or no" test, it can give us high risk or low risk for certain chromosome abnormalities. We had it done before all the excessive ultrasounds and would you know that the blood test for the MSAFP came back as low risk? That my chances of having a baby with Spina Bifida is a 1 in 3,400 chance.  Maybe I should play the lottery because those odds are very low but all the ultrasounds indicate otherwise. I asked the doctor why that was and he was very shocked to find that out and said I was a very unusual case...of course my husband chimed in and said he could have told him that from the beginning!  So really no new answers about that.

We then met with the Pediatric Neurosurgeon and talked about what things would look like after delivery. The high risk pregnancy doctor will schedule a date for me to have a C-section at UVA and then the baby would have surgery to close the open spine within 24 hours after delivery. From there, the baby would have to stay on its stomach for about a week. Then depending on the amount of fluid on the brain, the baby may need to have a shunt put in within a few days after that. Basically she told us that everything will depend on how the baby looks after delivery. No one will be able to give us a definite on any plan until they are able to assess the baby when it is born. We will also have a Urologist assess bowel and bladders concerns and also an orthopedic doctor to assess hips, knees, and feet issues. We will not need to meet with the neurosurgeon again until after the baby is born. It was nice meeting her and feel very comfortable with her doing the surgery.

The most frustrating part is the waiting. We have been wanting answers for so long now and we still aren't getting them and it is looking like no one will be able to give us all the answers until after the baby is born. I'm really not a patient person and this has been very hard about not knowing. I crave any new information we can get and just haven't been able to get much. One very reassuring thing the neurosurgeon told us is that the best thing we can do right now is have a plan. She said the baby may come out fine and we will all be happy and excited but at least we have a plan. It's better to be prepared for anything.  So even though the doctors throw around all these big words and fancy medical terms, I am relieved to know that we at least have a plan for the worst case scenario but are hoping for the best!

I have to say, Jeremy and I have gotten pretty good at these appointments. I'm glad that the shock has worn off because that was just downright exhausting and stressful. I still have my days of worry but have been much more content and accepting of everything as we progress. I'm thankful that this is our first child because I have no other pregnancy/birth/child to compare any of this to. This is all that we know and we are taking it all in. Our love for our sweet little girl has not changed and will not change through any of this. We know that she is a fighter (and obviously a little stubborn from the ultrasounds) but none the less, she will be perfect for us!

I know we have mentioned this before but we are extremely thankful for the love and support that has been given to us. It's overwhelming that so many people have reached out and comforted us during this time! We really have some amazing family, friends, and co-workers! It's good to know that we don't have to do this alone and that there are always people to lean on! Thank you, from the bottom of our hearts, for everything!!

The Husband's Post

Just to avoid any confusion and possible epileptic seizures while reading this post - it will be written by me/husband/Jeremy, the one who tends to go off on random tangents and then has writer's block every other word...

As the original post mentioned Julie and I have had quite the roller coaster of events and emotions over the past few weeks. We are forever grateful for all of the kind words, thoughts, & prayers that have come our way since. It has been a bit overwhelming (at times) to hear some of the things said and we truly are appreciative of everything. 

We've been together for what seems like forever - yet, not long enough to know what's going to come next which makes "us" work. We have been and will always be a great team which makes me believe whatever stands in our way, we will make the best of everything. I think our families should get a pat on the back as they have made us who we are today. They have always turned nothing into something which is exactly what we are going to do.

I think a lot of people feel saddened from the recent diagnosis of our sweet Caroline. Yet, the only depressing thing that I see is that she could be one day singing that (much despised Neil Diamond) song at a Boston Red Sox game, as a fan. But we all know that won't happen - I promise.

The last two appointments we've attended, we were told there were issues. A possible clubbed foot, semi-odd shape to the head (hereditary of me?), swelling in the lower portion of the spine, and even the growth was smaller than usual. All common characteristics of Spina Bifida. Then we hear - but it's not 100% clear as it's difficult to get a great image on the ultrasounds. Okay, so we're back to square one - as if we were waking up to a blue sky, birds chirping, and a subtle coffee aroma in the air. Then hear the forecast for fifty percent chance of rain. So do you prepare yourself and bring an umbrella for the day? Or just call it a day and give up? We aren't the type to give up. We're not even going to bring an umbrella because that's wishful thinking of a possibility of rain.

The news is only discomforting to those who are unwilling to accept something different. It is something different, even unexpected (my opinion), but it is what it is and there is no change that can be made now besides making it work. Something that has made Julie and I make it work and think beyond the diagnosis is the blog (http://www.whatdoyoudodear.com) referenced in the previous post. I will never forget coming back from UVA last week and reading one about her weird child's name - Simeon. Not Simon. SIM-e-un. Apparently a nurse couldn't fatham the name and gave up and started calling him Cinnamon; which led her, the blogger, to say something about others thinking she had an orange tabby cat in her baby carrier. Not sure what may have triggered it but it was solid five minute (much needed) laugh. I could hardly even read the blog aloud to Julie with the tears in my eyes. It felt like it was truly sinking in at that moment. It was just a long day of not knowing whether it was going to rain or stay sunny.

Ironically, after the appointments that day in Charlottesville, we decided to sit outside and have lunch - where it began to rain. Like I had mentioned earlier, we didn't bring the umbrella, we adapted and stayed dry - making the best of everything around us. 

Life Changing News

Our life has become a whirlwind over the past 3 weeks.  I have debated about sharing our news for a few days now but really feel encouraged to put everything out there. I know we are not in this alone and have seen such love and support from our family and friends so I want to share our story.

August 3rd was supposed to be such an exciting day for us! We were finally going to find out the gender of our sweet baby after 22 long weeks of waiting! I was finally excited to start thinking about names and decorating and just imagining our life with a little boy or girl. We had even planned our gender reveal party that evening after our appointment because we wanted to share the news with all of our close friends and family! Little did I know that the excitement of the gender from the ultrasound would be overtaken by more serious things.

We found out that we would be having a sweet baby girl but this wasn't going to be everything we planned for. The ultrasound showed extra fluid on the brain and caused enough concern to be referred to a High Risk Pregnancy Specialist from UVA.  I thought that day was going to be perfect, find out the gender and share with everyone! Suddenly after the devastating news that something may be wrong with our baby, I was overcome with fear and worry. I would have to put all of those feelings on hold as we had a gender reveal party to do. My husband and I got ourselves together and arrived at the party. There were so many excited people there awaiting on the big news, is it a boy or girl? It took everything I had to make it through that night with a smile on my face.

Our appointment with the High Risk Pregnancy Specialist was scheduled for that friday, August 7th. We were lucky enough to be seen at the Baptist Hospital as they have a UVA doctor come every friday to see patients in Lynchburg. We were nervous but were finally hoping for some answers and clarifications of what was going on with our baby.  The ultrasound lasted about 45 minutes and made me very anxious because the techs that do the ultrasounds are not supposed to say anything. My husband and I watched the TV monitor in front of us, trying to figure out everything that was being seen. The tech was good and moved from different parts of the body very quickly. Before I knew it, she was done and the doctor was on her way in to see us.  I looked at my husband with a "I hope to hear something good" glance before she entered.

The doctor came in, introduced herself and sat down to talk to us. She asked why we thought we were referred here. That question just made my skin crawl, almost made me feel like she knew a  lot of things but wanted to find out just how much we knew. I explained we know there is fluid on the brain and that is all. She then proceeded to tell us she saw some other concerning things on the ultrasound like the shape of the skull, fluid on the brain, and possibly a club foot. I sat there in complete silence. She then proceeded to explain to us that her concern was our sweet girl may have Spina Bifida. I had heard of the term before but had no idea what it consisted of. A million questions starting running through my mind. I wanted to know everything about it and how it would impact our little girls life and even how it would change our life. The doctor told us she was unable to get a good picture of the spine and that was needed to be seen to make a definite diagnosis. She recommended that we go to UVA to see yet another doctor and have another ultrasound done. Needless to say, my husband and I were in complete shock leaving that day. We couldn't even put our feelings into words. It was too much to take in for one day.  We had hoped to get answers that day but were still left with unanswered questions about what was really going on with our baby.

We were scheduled to see a doctor at UVA on August 19th. Waiting on that week and a half was heart wrenching. There were still so many unanswered questions we had and so many "what ifs" that were going through our minds. We spent the majority of that week and a half researching everything we could about what we were told from our ultrasound.....fluid on the brain, club foot, skull shapes, spina bifida, MSAFP blood tests, amniocentesis, etc. We spent our evenings talking about our research and trying to sort out our emotions from this whole process.

We saw the doctor at UVA on August 19th for yet another ultrasound. The tech spent about an hour doing the ultrasound and was not able to get good pictures either. It seems that the three ultrasounds we have had, no one has been able to see all that they need to. She tried different attachments and even had me roll on my side a couple times to try and have the baby flip or move. Finally, she called it quits and showed the doctor what she had. He viewed the images and then spoke with us. He gave us the heartbreaking news that our little girl does indeed have Spina Bifida.

I was ok in that moment of hearing the news. I had somewhat mentally prepared myself that we may hear that news so I managed to keep it together to ask some questions. So much was running through my mind at that point..what do we do now? How can we fix this? Is she going to be ok? How did this happen? What will our life look like now?  The doctor explained that there is a surgery that mothers can have in which doctors will operate on the unborn child while in the uterus. He said studies have shown that having the surgery improves the condition compared to waiting until after birth. He explained the surgery is done in Philadelphia and a candidate must meet the long list of criteria. He was going to find out if I would eligible and let us know. If we found out I was eligible, it would be done within the next week.  If we were not eligible, then we would followup with a pediatric neurosurgeon until a scheduled C-section close to my due date.

We sat there with our heads spinning. I finally had that melt down, ugly crying, breaking point after the doctor left the room. It had just become too much news for me to process within that short of a time. My husband and I tried to make sense of everything.....

We found out today that we are not eligible for the surgery due to the shape of my uterus. So we will see a pediatric neurosurgeon at UVA in the next 3-4 weeks. Meanwhile, we will continue our regular followups with my OB. It is a little disappointing that I am not eligible for surgery because I want to give my daughter the best possible outcome of this condition. But maybe it is a blessing in disguise..

My husband and I have been through so much these last three weeks. We have felt every emotion possible about this news. I will tell you now though, I would not be able to do any of this without him. He has been my rock and my encourager throughout all of this. He tells me every day we will make this work, we will adapt our life for this little girl. We can do this. It's amazing how simple those words are but how much they mean to me. We are in this together and we are going to do the best we can.

While doing our research, I have stumbled upon a blog written by a mother with a little boy who has Spina Bifida. I don't normally turn to other peoples experience to find out the facts of the disease but I couldn't help but reading post after post by her. It truly has become something I absolutely cannot stop reading. She writes about real life experiences in living with Spina Bifida. She writes in such a way that brings encouragement and positivity to all of this news. She even brings in humor which she has said is important to have in life.  She is honest and open about everything in her life.

A couple posts she has written has really been meaningful to me. One is when she describes "Diagnosis Day" and all the feelings that have accompanied it. She talks honestly about feeling angry about hearing the news and jealous about others having healthy babies. Its just reassuring to hear her be honest because I have felt those emotions. And its just the honest truth. She explains that its OK to feel this way and you are allowed to feel this way.

Another post she wrote gives a list of encouraging words for those that have found out their child has Spina Bifida. My husband actually sent me part of the list yesterday. #7 on the list says "Try to be patient with the people who love you. Family and friends want to help but they may say or do things that just rub you the wrong way. Try to be patient". This has been true because we have been so overwhelmed ourselves and forget that when we share the news, people haven't been doing research like we have and just aren't familiar with everything so we are trying to be patient. #8 on the list says "Remember that you can do this." and #9 says "Remember that you can do this" and #10 says "And just for good measure, remember you can do this."    Hearing those words has been such an encouragement. I have thought already, "can I do this?, Am I capable of taking care of her? Can I give her the best possible life?" and just hearing those words lets me know that I can do this..and I will do this. 

I will attach the link to her blog if you would like to read. It really makes things sound encouraging and gives us a glimpse of what our life will hold. She really has changed so much in my mindset and for that, I am extremely thankful. Hearing this news could devastate us and bring us down or we can learn to see the positive in it all.

I will keep everyone updated on the process as we will spend the next four months seeing specialists and coming up with a game plan. I do want to thank my husband for being with me through this life changing news. He has kept the encouragement and positivity going in order for us to get through this. I didn't know if our marriage could get any stronger than it was, but I was proved wrong. Each day we are together, our marriage and bond gets stronger. I am extremely lucky to have him in my life and thankful to have him as my teammate! I know that we will be great parents to this sweet little girl and give her everything we can!

We are encouraged to start this "new normal" in our life with our sweet baby Caroline!

www.whatdoyoudodear.com (check out her post and read some about it!)