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Important Dates Are Subject To Changes 6/27/21 Sixth Post

Holy moly, I am currently 34 weeks pregnant!! I feel like a bomb with out numbers ticking down to know when to expect detonation! But will the million visits I have I do get reassurance that everything seems to be going well, I just try hard not to sneeze!

As seems to be the pattern for this stage I have lots of new appointments, talked with lots of new Doctors, Nurses, techs, coordinators and offices, but I have no new health related info. For now things look good, we will wait and see. Since my last post, we took our beach/family visit mini vaca, I had a drive by/outside shower, my appointments have tripled and I am falling asleep at any point in the day!

The beach trip was wonderful, exactly what we all needed, except it was too short. Good news is our cousin is getting married in April so we will get to go back, and hopefully things in out lives will be a little more settled by then (hello future self, looking back on this and laughing at the thought of life being settled!!) If I close my eyes I can still hear the waves and feel the sand so that helps keep me peaceful! Even though the girls had to jump back into school mode and John back into work mode I think that was just the reboot they needed also!

Recently we had the most adorable baby shower! Because of covid and how far spread out everyone is, we did a parking lot, drive up/ outside baby shower. It was so nice to see people, we had photo props and took some silly photos, I got a ton of cute gifts and was told several times I was looking pretty, so it was a great day!! Just having a day to celebrate the fact that we are having a baby, and all the excitement that comes with that was a joy!

My appointment schedule unfortunately does not bring me joy. It’s actually pretty comical how I have to figure out things. John, being the stubborn but uber supportive man that he is, wants to be at every appointment. So trying to figure out his work schedule plus the fact that he actually does need to sleep at some point, means I have to get pretty creative with appointments. I have my Midwife, my high risk Dr, pediatric urology, phone meetings with NICU and Neonatal, pediatric orthopedics, and I go for a non stress test TWICE a week!!(I love how they call anything with this process NON stress, it’s like an inside joke I think!) All of which (besides the phone meetings) are about an hour to a hour and a half drive one way, without traffic!. And that isn’t real life stuff, like us shopping for a car, end of year school stuff, I signed two of the kids up for a musical theater performance, the dogs grooming appointment, kids dentist and orthodontist, blood work, filling prescriptions, vaccines and the kitchen sink!! When the girls ask, “Can we______” I just laugh! I tell them I can not guarantee anything in the future, all I can give you is a “we will try”. There is also the fact that we have no idea when Will is going to make his grand entrance into the world and then we will be at the hospital for about a month, so that time will be occupied! It is definitely a lot, but like I said, I also like the continual reassurance that things are still on track. Between heartbeat monitors and ultrasounds we get to check in on Will often, and its good to have so many people involved and all of them giving us reassuring news and updates. So it’s all good, just a lot!

So, the pregnancy is in the final stretch, the kids are almost done with school and we are busy and on the go a lot! We are car shopping. We need to replace John’s car, and between our schedule, trying not to go out too may places because of Covid and the heat, we spend a lot of time online shopping. Which is actually pretty frustrating. It is great because you can find so much online, and it is also a problem, because you can find so much online! I feel like we are looking at every make and every model and can’t decide. Hopefully we will spend some time here soon really figuring it out and get that done before the baby comes. The other add on is the theater. The community theater I am involved with is doing a musical revue, I am out for being involved because of my schedule and the fact that I should be giving birth in the middle of their rehearsal schedule, but they wanted some kids to preform so two of my kids (plus one of my nieces) were very interested. Thankfully my family said they would make the schedule work for while John and I are at the hospital so they were able to commit and will be occupied with that in the middle of the chaos. I think it will be a good distraction for them, I kinda wish all 4 wanted to do it, but I understand, singing up on stage isn’t for everyone. Now I just have to hope that there wont be any major conflicts and I will be able to go to the performance!! So that plus end of school has kept us pretty busy and excited! The kids get to go up to the school when we have to turn things in, so they enjoy that. Just getting to wave to their teachers from the car is exciting, lol! Mostly they are looking forward to summer and crossing all of their fingers and hoping next school year will be “normal”, time will tell.

I think that is the wrap up for what is going on right now. Overall we have a full calendar but still the excitement is building! Pretty soon we get to meet out little man, he will show us all the things we have been waiting to learn, and how super awesome he will be. It will be a whirlwind but we are getting ready for it and the most important part is having him in our lives and getting to the point that we can bring him home and start living with our complete family unit. That is what I am most excited about, the addition to the family that we didn’t know we needed!! I will update again when I can, maybe even when we have the info on his expected arrival!!

And so it begins. I had been toying with the idea of starting a blog. First of all, I thought it would be good to have one spot where all my friends and family can keep up to date on our pregnancy, doctor’s appointments and just general info on what we have going on in this new part of our lives. Also, I wanted a way to write everything down so I could look back and remember what happened when. Well, I then ran this idea by my board of directors…the girls. They all thought it was a good idea, however Taylor threw out the idea that she could design a website for this. That way we can post anything we want, and they can be involved. Everyone thought that was a great idea, so here we are. I know most people that see this are friends and family, so you already have the current updates, however I feel like the more people I meet there is a chance that I will meet someone going through this same journey only a few steps behind me. I meet people who are a few steps, or several leaps ahead of me and they have helped me understand what their process was, so it is probable that at some point I will meet someone just starting out like we are. With my faulty memory and difficulty editing my thoughts, this is a place where they can scan through and see if there are any points or advice that help them. With this in mind, I think this first post will be back tracking. Getting the story up to date, the full 23 weeks of pregnancy and the rollercoaster of information and emotions that played out thus far. So enjoy, and I officially apologize to any of my English and writing teachers. Run on sentences, improper punctuations, and full-on misuse of words is artistic…right? There, their, they’re, to, too, two, there, their, they’re, to too, two…oh well here we go!

So, day one it’s COVID times and John and I were bored…ok maybe fast forward a little. October 2020, was kind of a crazy month. The kids were doing school from home, we had a cat that needed emergency surgery, one kid had a birthday coming up and Halloween was looming. All of this with the corona virus craziness going on. We did however take a trip to the cabin in North Caroline. The girls were able to pack up their school supplies and computers and we hit the road. We met up with my SIL, Shannon, my FIL, Ken, and my Uncle in law Brian. Plus, John, the girls, Luna the dog and I and it was a full house. It was early October and absolutely beautiful. The leaves were just starting to change and the weather was perfect. I had no idea I was pregnant but definitely had a few days that I felt off, and some rough mornings. I was worried about COVID, I did not think I had it because the symptoms didn’t match up, but it seems like everyone was reacting differently, so I was still worried. We had been careful, still traveled and still went into a few stores, but always masked up, washed hands and used hand sanitizer. With all that excitement I honestly wasn’t thinking pregnancy, I was watching out for COVID symptoms and blaming a crazy schedule and stress in general.

So sometime after this trip, I grew suspicious. Could I be pregnant? Did I miss a period? I really could not remember. With being busy, that is just something that goes by, not a lot of to do about it, and I was past the days of little red dots on a calendar to keep track. I had the thought but pushed it aside. We had a cake and ice cream party, more general doctors’ appointments and lots of discussion on how to figure out Halloween. I was not comfortable with the kids going to a neighborhood and going door to door, so we decided to keep it simple and just go to our two neighbors (I told them ahead of time because we don’t get trick or treaters out here so I didn’t want to ambush them), my parents’ house and John’s Dad’s house. Quick, but still got the kids out to have some fun. It was this night that John and I had “the talk”. He knew I had been thinking it was possible but at this point I was more sure, he was still thinking it was nothing. I always wanted more kids, so I always have what we call “pregnancy paranoia”, he wanted to be done with kids (just because we are so outnumbered and the cost of a big family, not that he didn’t love having babies) so he was always the one to say, wait and see I am sure you are not pregnant. So we decided to wait one week into November, if no evidence appeared then we would take a home test. I also had the same conversation with my Mom, because she’s my Mom. She thought it would be funny if I was pregnant with twins, because I prefer even numbers and that would get me 6 Kids! November begins, we celebrate John’s birthday and I go buy a test. That morning I take it, and it shows pregnant within the first few seconds. John is still asleep. So I wait, type out the text to my Mom to send her right after I tell John and then just sit in shocked silence. The shock was a lot stronger than I thought, after all I had been thinking about this for a while but pushing it aside. I was 38, overweight, my back always hurts, I already had 4 kids the youngest was 8 and the oldest was giving us the teenage trials. Oh, and my husband really didn’t think we would have any more kids. So after what seemed like forever John work up and I told him. Then he was shocked, but in his John way, like “ok, that’s cool, we will figure it out like we always do”. We were really happy, not what we planned and not really sure how the heck we were going to start over at our age, but still happy. We both love babies and we made four awesome kids already, so what is one more addition to the circus? Then the back track, how far along am I. Like I said my super secret coded marks on calendars were long past, I didn’t keep an app on my phone to keep track, so it was my memory. Yeah, no luck, I could not remember when my last period was. Could be September, could be June, no clue. We decided to schedule an OB appt right away. The second week of November we had blood work done to confirm the pregnancy, talked to the Dr and ruled out going to a high-risk doctor because even though I am older to be pregnant, I am on my fifth kid so all should be well enough for my regular OB to watch over. The third week (on one of our daughters birthdays) we had an ultrasound to date the pregnancy. We saw our little shrimp up on the screen and found out I was 8 weeks along. Not too bad! I had already made a few changes to my diet after the at home test. Tried to eat a little healthier, cut out caffeine, no deli meat, just the basics, but also not trying to call attention to anything. At this point only John, me and my Mom knew. My Mom and I had already started walking everyday, so I kept that up and started taking prenatal vitamins.

Then I get a phone call, “Mrs. Higgins, did you know you have diabetes?” to which I replied “Uh, nope!” and “Is this gestational diabetes or like the regular kind” they said “Oh it’s for sure the regular kind, so we need to start checking your blood sugar and monitoring you” Ok, no problem right? I knew with my eating habits, my lack of regular exercise that this was a possible diagnosis, at some point. I didn’t think I would be pregnant and diagnosised, and I didn’t know what being a diabetic meant for a pregnancy. When I had gestational diabetes, the big concern was having a big baby, that’s cool, the girls were big and we handled that. I monitored my blood sugar before and just watched my diet, no big deal. Well at my follow up appointment (which I had to do alone because of Covid, John was only allowed at the ultrasound everything else was solo) I got the first clue that type 2 diabetes was going to go a lot different that gestational. I was going to have to be monitored a lot more, the baby would need to be checked for heart, lung and spine difficulties because those were already developed and with uncontrolled diabetes there is a possibility of problems, especially in those areas. She decided to put me on a medication for my diabetes, just a pill once a day because she didn’t feel like I needed insulin yet, but probably would as the pregnancy progressed. With all this going on my OB decided it would be best for me to see a high-risk doctor. So the end of November and we have already had more appointments then normal and still lying about where we are going all the time. The regular OB was just me going, now John could join me for the high risk so the stories of the errands we needed to run were adding up.

First high risk appt, we got an ultrasound, which is always nice, because we get to see the baby and hear the heartbeat. We then “meet” with the doctor. Because of Covid he doesn’t meet his daily patients face to face, he is across the hall in a conference room and we are set up in the nurses office to talk over the computer. Basically, he explains to us all that will be monitored, we will have an ultrasound every appointment, we will eventually have a fetal ultrasound that will check in depth the babies heart, and they will monitor my blood sugars. He looks over my logs and talks about how unstable my numbers are. He wants them to be more regular, so I need to start taking insulin and see him once a week. At this point we decided to tell the family that I have diabetes. This would explain the diet changes and the appointments but give us some more time before we wanted to make the baby announcement.

This went on through December. The high risk ordered even more lab test. Including a genetic test that we had originally turned down because all it does is diagnosis the possibility of a genetic birth defect and regardless of the results, we wouldn’t do anything with that information, so no point in taking it. Well, the high risk doctor ordered it because he felt it would shed more light on the possibility of issues brought on by the diabetes. So off we went, I was poked, prodded, and specimen were collected. Once those results came in, I was labeled negative for any issues, or low risk for the possibilities. By mid December, we were however watching certain things about the baby’s spine and legs. John and I noticed that the baby’s legs always seemed to be in the same position, crossed at the ankles. We mostly noticed because of course we wanted to know what the gender was, so we were always trying to get a good view and the baby was never in a good position. At one point the legs were crossed and the little hands were wedged down there covering everything up. The ultrasound tech (who was awesome) said she thought she caught a glimpse of some boy parts but couldn’t be sure enough to claim it. After a few ultrasounds I think is when the term spina bifida first came up. Basically, the baby was showing some signs of a potential lesion, but they couldn’t find it because the baby was so small. Well, we talked with the doctor about if we should tell the kids or not. We had planned on telling them we were expecting on Christmas Day, but if there was a possibility that we would lose the baby, we would wait. No one is going to say, yes for sure everything will be fine, I am at a high-risk doctor for a reason. However, he did say that at this point I am looking good. My A1C (blood sugars over 3 months’ time) levels were tested and I wasn’t sky high and now I was on insulin and monitoring them. So even if this is a case of spina bifida, we should do alright and we didn’t even know if it was or not, so celebrate and let the girls join in. So we did, we figured no matter what, we are happy and excited to be adding to the family, and if there are development issues, we will deal with it at that point.

Because I couldn’t wait, we planned the announcement for Christmas Eve night. They always open one present that night. My parents and oldest were over for dinner, I then had them fake like they were going home but wait by the car. My other brother and his family was there so I told him everything the day before and asked if they could give us some time to tell the girls, and it just be the six of us. We had the girls in front of the Christmas tree and had them each close their eyes, we had them put their hands out and gave them a shirt each to hold up. We then told them to open their eyes and see if they could figure out what their special present was. Katie’s said “Future Baby Sitter”, Taylor’s “Future Baby Rocker”, Caroline’s “Future Lullaby Singer”, Izzy’s said “Future Big Sister (FINALLY)” and they all said “Sibling #4 Summer 2021”. John had a shirt that said, “We failed at social distancing”, mine said “Not all presents are under the tree, we have one more gift growing in me” and both said “Baby # 5 Summer 2021”. And I also had a onsie that says “Best Ooops Ever”. So, they opened their eyes, and it took a minute, but they figured out and most of them thought we were kidding! Because I always create elaborate plans to lie about something like creating life! And then we all cried and hugged, and it was pretty awesome. We let the excitement sink in, got the family all in the room and we all were shocked and happy to be adding to the family. Eventually we told the girls and family that because I am older and because of the diabetes I am high risk, so we are keeping a close watch on the baby, and we could get some news that they have found something of concern. Mostly kept it light because even we didn’t know at this point if there was or wasn’t a diagnosis.

With the holidays over, we continued going to the high risk every week, with the occasional appointment with my regular Ob. All telling me the same thing, “we aren’t sure yet”. They kept finding more signs that point to Spina Bifida, but no location of the lesion. The baby was so small and moving around enough that they couldn’t get a good view, even after me rolling around and eventually getting on all fours during an ultrasound. They started talking to us about Hydrocephalus, or fluid buildup in the brain. I don’t know about John but this is about the point that I started to freak out. It’s one thing to wrap your head around the fact that your child may have difficulties walking, but now we are talking about mental difficulties as well.

In mid January, we got the gender confirmation, he is in fact a boy, and there is a 99% chance he has spina bifida and he definitely has hydrocephalus. My high-risk doctor at the time, said that he wanted to keep monitoring me but he wanted me to look into a doctor in Miami. He couldn’t remember his name but said if I looked up Miami and Spina Bifida his name will come up. He told us that this big wig doctor, was one of two doctors in the country that was performing in utero surgeries for babies with Spina Bifida. He told us that he could see us going there and having this procedure and getting miraculous results. So, while this completely freaked us know, having a child with spina bifida, having surgery while pregnant, traveling to Miami and trying to figure out work and school for the kids, we still felt super hopeful. We were being sent to the best of the best, and how fortunate that this big shot was only one of two in the country and still so close to us. So, we start looking into it. At the next appointment with my high risk, still no new info, no location of the lesion, so we tell him we want to go forward with Miami, we don’t want to keep waiting because this procedure is time sensitive, so we want to start the process now. Who knows what Dr. Miami’s schedule is like and Covid makes everything take longer so we don’t want to wait for the location of the lesion, we want Dr. Miami to evaluate us pronto. So, this high-risk doctor writes up a report about everything they have found at this point and tells me to go ahead and call to see if he can do a fancy MRI (giving the impression that Dr. Miami has equipment that isn’t available here) locate the lesion and do the procedure. My high risk said it will all happen very fast.

So again, we have the good news bad news announcement to make to the family. (Also, at this point it’s only immediate family that knows, no one else knows I am pregnant and only a few people know I have diabetes, covid really made this easier to hide but it was getting to the point that it was difficult, but with every appointment we heard, “we will know more at the NEXT appointment” so we kept waiting) Once again we decide to celebrate the good news like we would for any pregnancy and we planned a gender reveal for the family. It was Harry Potter with a dash of Sleeping Beauty themed; we got the girls together and they all granted wishes for the baby and put them into a “potion” then we poured in all of our wishes and the potion revealed the gender. Blue fog out of a cauldron. It was super cute, but we didn’t get it on video, too hastily planned, but we have some pictures, and it was a great time. Then we pulled the girls in for a talk again. We told them that as usual we don’t have all the information, but it looks like Will (we had a boy name picked out for 15 years so there was no time wasted in deciding that, gender reveal and name pick all at once!) was showing some signs of development issues. We gave them a scale that he could walk ok, need crutches, or need a wheelchair, his mental development could be ok, he could struggle a little, or he could need some major help with things. We didn’t know where he would fall on the scale, and honestly, we won’t really know until he is born and growing, So what we need to focus on now is finding out everything we need to know and doing everything we can to help him when the time comes. And we all agreed that we loved him UNCONDITIONALLY!

So, I call big shot Dr. Miami, tell them everything we know and find out what information they need to get me scheduled. I get my doctors to send over every record they have on me and I was told they will look it over and call me back to schedule. The next day I get a call from the doctor himself. He is a pediatric neurosurgeon, he tells me that the FDA won’t approve me for this in utero procedure, and that my next step would need to be scheduling the fancy MRI with him (even though there is nothing surgically or follow up wise he can do) he would locate the lesion and then refer me to doctors in Brazil to have the surgery there, because they don’t need to follow the FDA guidelines. At this point all the walls start coming down on me. I am not super emotional under most circumstances, I had been holding it together pretty well, some tears here and there but mostly putting on my big girl panties and dealing with it as we go. Well after this chat, I was a mess. I went in and cried next to John while he slept (this was late morning and with him working nights he doesn’t get up until the afternoon, but I couldn’t sit in the living room while the girls did school because I was a mess) So I just laid there and cried and cried and cried. How the heck was I going to get to Brazil, how can we pay for that, is that even ok to do, the FDA guidelines are there for a reason, why the heck didn’t I get my weight under control earlier, why wasn’t I taking vitamins the whole time, how the HECK are we going to get to Brazil in the middle of a pandemic!! Then John got up, to his credit he didn’t jump out of bed to fight off the unintelligible troll of a women that mildly resembled his wife. He just got right to the whatever it is we will handle it mode. I tried to recall the conversation and get him up to date. Mostly focused on “How are we going to get to Brazil!!...We don’t even have passports we will have to get illegal passports, or stow away somehow” …yeah I was a mess! So he broke down the conversation and said, maybe we should look into other options for doctors. First, we were already told there is another doctor in the country, and maybe there are other options. He was mad at big shot Dr. Miami, I mean he did turn his wife into a troll over the phone so I can see why. So, he jumped on the computer, he had been looking into spina bifida information all along and I was avoiding the computer because you find too much information and I couldn’t handle it. John tells me he found a lot of information that was coming out of Winnie Palmer, the hospital an hour away. He pulls up their website, low and behold, they are also doing the in utero surgery for spina bifida, they also have all the fancy shamancy equipment needed to locate a lesion, they also have every doctor under the sun that would be needed for follow up care (Dr. Miami didn’t have that), including a full spina bifida clinic that sees patients until they are 21. So why Dr. Miami?? Why are we being sent there for a test, to then be sent out of the country, to then require follow up treatment that would bring us to Winnie Palmer?? At this point John is pretty ticked. He is mad at Dr. Miami, he is mad at our high-risk doctor, and he is ready to drive me down to Winnie Palmer and talk to someone with some sense. Well, I decide to think about it all for a bit. It didn’t make any sense, but I didn’t think showing up unexpectedly would help. The next morning I called my regular OB, I tell them, my high risk wants me to go to Miami, Miami wants me to go to Brazil, and I want to go to Winnie Palmer. They said that they don’t know who is better or why my high risk would send me specifically to Miami, but I should call the high risk, explain my concern and see what they recommend. If after that call I still want to go to Winnie Palmer they will get me a referral. So, I call my high risk, I tell them that the Dr. Miami said there isn’t anything he can do, so he wants to ship me off to Brazil. I tell them if I will have to follow up in Winnie Palmer when all is said and done, why not go there for the MRI and see what they recommend, they take the message and say they will talk to the doctor. When I get the call back, all they say is, no the high risk thinks we should go to Miami and get the MRI and do what he recommends. (REMINDER, they still have no idea where the spina bifida is located, they have seen signs pointing to this, but no actual lesion!) Then I am torn, I have lost all faith in my high risk, he didn’t even speak to me, just through the office staff, and he never told me that I could have gone to Winnie Palmer, and I don’t trust Dr. Miami because his go to choice before even seeing me is to leave the country. It was all too much with too little facts. Then, at my Mom’s suggestion, I call the Spina Bifida Association. Sure enough the first thing they told me that for my area, they would recommend seeing someone in Winnie Palmer. They give me a contact person and said to give them a call, explain everything and go from there. I called, told them my tale, the clinic set me up with a contact with the high-risk doctor they use, I talked with them told them the tale (all of these people were shocked when I told them the Miami/Brazil chapter) so they said, they won’t tell me what to do, but they can definitely see me, find the lesion, and make a plan from there, Dr. Miami is not necessary, not our only choice. And all three of these phone calls, they sent me emails with information, encouragement and complete understanding that the choice was ours to make, no pressure (in my head I hear my high risk “Miami is your only option” and I hear Miami “Brazil is your only option” no support, no pros and cons, no wow you’re going through a lot, it was just do this or bad things will happen in your babies future) it was like music to my eyes and ears. I had options, and if nothing else I would get a second opinion before we started looking up airplane blueprints to see if an overweight pregnant woman would fit in the wheelbase of a plane like they do in the movies!! I try to bypass my high risk and I call my regular OB again, I tell them they still want me to go to Dr. Miami but I want to try Winnie Palmer first. They are getting my records together. Then I realize I have to get my records from the high risk sent over too, so I call them and say the same, I want to go to Winnie Palmer and see what they have to say. The staff talked to the doctor and I get a call back, just “what is the fax number, we will send your records” no call from the doctor, nothing, just here’s your stuff, BYE! But all I felt was relief, I didn’t think Winnie Palmer was some miracle and everything was just automatically going to work out how I had planned, but we would get some answers and hopefully we would trust them!

I heard right back from Winnie Palmer and they got me schedule for an ultrasound and a meeting with their high-risk doctor in early February. I wasn’t looking forward to the drive, but John could go with me, and it was better than Brazil (I think that is our new catch phrase “Better then stowing away to Brazil!”) At this first appointment they did a very long ultrasound, and we can see those legs are still pretty much the same, not crossed at the ankles, but not bending, not flinging around, just straight out. I asked if there was any sign that he was moving his legs, the sweet tech said “Well the doctor will go over all of that with you” This isn’t our first rodeo, we knew that was code for “NOPE! But I can’t tell you that because I am not a doctor, so he will tell you that no, he is not moving his legs”. We start looking at everything else, I ask her what the vessels in his brain are measuring, at this point she figured out it wasn’t out first rodeo, even commenting that we actually know stuff, and that most people just see the different shades of gray and nothing more. We were pointing out organs, asking if that gray part was the lesion they have been hunting for, checking the chambers of the heart and commenting on the location of the brain in the skull. We got really good at reading ultrasounds, not fully understanding them but able to spot what we are looking for and ask the right questions. She walked the fine line of answer what she could and leaving the hard stuff for the doctor to go over. Then in walks one of our new favorite people my new high risk doctor. He warned us that he was going to go over everything with us, ask me a million medical history questions, go over every part of my pregnancy journey up to this point and then go over every image in the ultrasound. And he wasn’t kidding, he stayed with us for quite a while. He explained every term he used. He drew diagrams, used a chart of the spine I had that I was studying, and wrote down words so I would be able to look them up later. Two things came from this meeting, he was the first person to say, I am surprised to see this diagnosis with you. I have no family history, no signs of genetic issues on either side, yes I had undiagnosed diabetes but my numbers were not so astronomical that this would be predicted, yes I am over weight but no so much that this would be predicted. And though this diagnosis is associated with women who have diabetes, sometimes there just isn’t anything we could do to change the outcome. That was big for me, because I spent a lot of time thinking about everything I ate while I was pregnant and didn’t know it. I was really upset about my love of cannoli’s, and pasta. I couldn’t imagine how much I had consumed in bread products. I thought every single thing I put in my mouth had contributed to our son having a birth defect. Now this isn’t to say that isn’t true, and if I had known I was pregnant I would have lived on tofu and spinach if I was told to, but it did tell me that what will be will be. I wasn’t some all-consuming carb monster that caused this, there are other factors and simply too many unknow things, so the what if’s needed to end. This is the situation our family is in and me blaming myself for loving cheesecake, wasn’t getting me anywhere. I still have these moments, and probably always will, but just hearing him say that I didn’t fit the pigeon holed status of a typical mom with a child with spina bifida made me feel tons better. The second thing that this appointment brought to our attention was a whole new diagnosis. He explained that yes, he located the approximate spot of the spina bifida, but he couldn’t see beyond that spot any parts of the spine that he should see. He showed us on the ultrasound where it looks like it just stops, he showed us where one side goes out to the the pelvis and hip area and one side starts and just stops. So he told us about Sacral Agenesis/ Caudal Regression Syndrome. That is one of the things he wrote down for me and I still have to think about it so I say it right. The whole, let’s hope the lowest possible section of the spine is effected because the lower the better, became worst case scenario because the lower spine wasn’t even there! He went over what this meant. And then we went into what it means with the fluid on the brain, the spina bifida and the missing part of the spine all together. He tried his best to put the positive, we wont know until we know spin on this, but I asked some of the harder questions and he answered. Walking: not likely, brain function: he will have difficulties, bathroom issues: probable. This meant that no doctor, not US or Brazil could do a procedure that would improve the baby’s status. You can’t go in and add some parts to the spine, and because he has so much going on and that is putting stain on my body, and procedure has a higher chance of a disastrous outcome for both the baby and I. Now no one can say what could happen or what would happen no matter what we chose. But when I play out the scenario of going to Brazil, it doesn’t end well in my mind. With all this information I think, if I went there and say they went ahead and did the procedure, there is a good chance John would go home alone. So, all that was put past us, we ruled that out and for better or worse we are going forward in Winnie Palmer. We feel like they have enough of a group of doctors that they all keep each other in check. They all are experts in their field and they all work closely together, so what better option then to have a team of people for Will. Plus, I am getting to know more and more people in the area, so that helps me see the different abilities and difficulties of kids with these diagnoses. I haven’t talked to anyone yet with all the same diagnosis, but it’s probably just a matter of time. The spina bifida association (when they followed up with me to see how I was doing, so sweet) actually connected me to a woman that has a 16 year old son who has both spina bifida and sacral agenesis/caudal regression syndrome. She also happens to work with a program based out of Winnie Palmer that works with families of babies with disabilities. So, she has been an amazing source. Now so much has changed in 16 years, but still it is amazing to see pictures of her son and what all he has been able to accomplish! It gives us so much hope! After this appointment, which I should also point out, the doctor actually sat with us kinda dragging out the conversation after he told us everything. He said I want you to take your time, if you have any pressing questions, ask them now so they don’t weigh on your mind, if you just can’t think yet and need to go home and process, call us with any questions you have and we will help you through it. It wasn’t until later that I realized how awesome this way. Not only making sure he spent the time with us to explain everything, then staying with us, giving us time to think of questions, making sure we knew we could call to ask more, and I realized he was evaluating us. Seeing how we were processing, making sure we were as ok as we could be before he wanted to see us walk out the door and drive over an hour home. That kind of compassion meant a lot to us. It didn’t feel like, they were telling us, oh well tough break now hit the road I got another patient I can make money off of lined up. It was truly caring about what we are going through and showing us the support they are willing to offer. It was a great feeling and when it hit me I had no doubts that we went to the right place.

That brings us to the next step, schedule the MRI, and meet with the pediatric neurosurgeon of Winnie Palmer. The appt with the doctor came first because apparently insurance companies have more say in what is necessary then what doctors do. So, it took a while to get that approved but my high risk and the neurosurgeon didn’t want us to wait and they scheduled a sit down with us. This appointment started with another ultrasound, same status, us asking a million questions and the ultrasound tech walking us through it. Then we met with one of the people from the spina bifida clinic. She explained to us, how the beginning is kinda hectic, lots of info, lots of doctors, but once that settles down we will go to one clinic for one long appointment and all Will’s follow up doctors will make their rounds there. Like a one stop shop, everyone stays in communication and they come to us! And we talked about the network of people to reach out to, definitely an uplifting vibe. Lots of info, lots of support and a cute folder with pamphlets and resources. Then we went to an office and sat down with our high risk and Will’s surgeon. This was another tell all appointment. Getting the neuro caught up on any medical history (he was also surprised by my mostly healthy history) then going over the ultrasound image by image. They go over the fluid on the brain, what the ‘severity’ means, and that after birth they will decide (with us) on one of two procedures to drain the fluid. A few days after birth either a shunt will be put in, or a procedure to put an opening into drain the fluid without a shunt. They went over the spina bifida and that the location is in the lumbar section, not exactly sure which one, but an MRI will give them a clear image of the location. This is an opening on the spin, there is no sac, so it is basically a cut with the nerves exposed. So within the first hours of birth, they would need to send Will in for surgery to put the nerves back where they belong, closes the spinal column and then closes the opening. Once this happens Will has to lay on his belly and stay in the NICU for 2-3 weeks. They give us some information on when we can see him and some of the access we will have, but we will talk with NICU and get more information on all that. Then they went into the missing parts of the spine. Because we hadn’t had the MRI, the images still weren’t clear. No for sure sign of where the spine ends, no clear image of if the hip/pelvis bones are intact. So they need the MRI to figure out how to proceed with that part of it all. They also mention and talk to each other about a potential different diagnosis, where the tail end of the spine could be extremely curved and that is why they can’t see it. So basically until they have the MRI, they can’t say what can be done or what any of it means.

Ok, if anyone is still with me this “introduction post” is almost caught up. As it stands, we have our MRI scheduled for this week, then we will have another sit down talk with my high risk and Will’s neurosurgeon. We also will be scheduling an appointment with Winnie Palmers cardiology to get a fetal echocardiogram, and sometime in my third trimester I will meet with the urology team to go over what they see in the tests and scans and what may be necessary in that field.

That’s the update!! Now I sit here on my birthday after having written it all out and think, wow, we do have a lot going on! I am so thankful that I have been able to handle each section of this journey because I have the best people in my life. I would be absolutely no where without my Mom, and John! They have been in the loop for every part and just so amazing and strong. They know me the best and always know what I need. Sometimes time and space, sometime support and encouragement, sometimes tough love and reality. I would still be a mess if it wasn’t for them! My girls are flippin fantastic! They are so funny, so sweet and so dang smart and strong! They have taken all of this so well, they are helping me all the time, and talk to us about fears they have and questions that come up. Then there is the next circle of family and friends and the have all been there for all of us. No one knows how to process all this information and every time I tell people, they always find the right things to say. So much love and support has come out of this and it is really amazing to be surrounded in all of that when sometimes it is the only thing holding you up! And now I have a new circle, new people I am meeting, new stories I am learning. It is crazy to think that not that long ago we, as a family didn’t know anything about spina bifida. Now I have so many people that I talk to, so many families that I have been introduced to that have been through some of the same things we are going through now. We have seen pictures and heard stories of kids that have faced the difficulties that Will is going to face, and all the amazing things they have done. This community is one we are just getting involved with, but we can tell will be a major part of our future, and we look forward to it.

So, the girl’s idea of a website, may have woken a new monster. Lots of writing in our future, and lots of getting all our thoughts out there. I am so excited because they are excited. Maybe that will wear off, when they realize that this isn’t going to make us internet famous, or when they get tired of changing their bitmoji outfits. For now though, it feels good to have a family project, to read each others posts, and to bond over this process. If you have stuck it out this far, I hope to say this is the last post that lasts this long. But I can’t say it will get better, still lots of errors, still lots of weird moments to make a joke, and still lots of unknown, but it will be real. Steam of thought writing and figuring it out as we go. And if you have any complaints about my site, keep them to yourself, my web designer is 12, she awesome and you aren’t gonna tell this Mama Bear anything different so don’t try!!

But serious THANK YOU to EVERYONE! Whatever brought you here, you are a part of our story and we are so happy to have all of you surrounding us. So until the next update, summer of 2021 there is going to be a WILL yay! And When There’s A WILL There’s A WAY!!!