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!)