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!!