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!