— content note: I apologize if this post is a little all over the place. I’m currently running on very little sleep and while my brain is going a million miles a minute, my body is kinda having trouble functioning. Thanks for understanding! —
Some of you may have seen that my current pregnancy has been had its really rough spots so far, and while I just passed the 20 week mark, life just got a heck of a lot more difficult. My little bear has been diagnosed with Spina Bifida, and while this is devastating as a parent to hear this, we are surrounded with so many people caring for us, coming alongside us, and we also have access to one of the top Spina Bifida medical centers in the country. That being said, before I full jump into this post, please know I’m not entirely sure how much I’ll be able to post on this blog for the time being. Our lives are being completely and thoroughly shaken up, and who knows, I may need this spot of some normality among the chaos of drs appointments, tests, and as we prepare to bring our little bear into the world.
First off, here are two very important things I feel the need to emphasis.
What is helpful? Hearing how many people are praying for, thinking about, and just supporting us through us has been immensely helpful in just easing the burden this diagnosis and the future is putting on my husband and I.
What is NOT helpful? Hearing how your friend so n so has SB and they’re _____ (fill in the blank). Spina Bifida is really a one case at a time situation. There are no guarantees with this condition and each case is so specific and unique we really won’t have answers with how mobile or not our little bear will be until he is in our arms.
Alright, so last Wednesday, the 26th, I went in for what I thought would be a fairly normal prenatal appointment. I was scheduled for my 20 week ultrasound, and was hoping to see that the placenta previa they saw a month ago had resolved itself. (<– which btw, it has) I wasn’t worried about little bear, because this kid moves like there is no tomorrow. He has regular dance parties, sometimes to the chagrin of mommy’s upset stomach. But as I watched the ultrasound tech go over all of his measurements and try to get him to stay still for the important ones, a sense of something not quite being right started to come over me. Before I get too far, I want to share something I wrote the day after that appointment.
Yesterday morning I woke up, said goodbye to Phil, got the day started by taking a shower, got Ender up, made up breakfast. We filled the morning with books and movies and trains and waited until I could go to my 20 week prenatal appointment and ultrasound. This morning I woke up to a traumatizing nightmare about my dad, feeling like the ground missing from under my feet, and have felt that overwhelming sense of utter helplessness.
I will never forget the look on the midwife’s face when she walked into my appointment. Her eyes were slightly red, and she looked very somber. My heart sank then, I knew then for sure something hadn’t been right on the ultrasound. I had watched the ultrasound tech pretty closely, and had noticed that she kept going over two areas in particular. She kept measuring little bear’s brain, or trying to. My little bear was so active as usual that he made her job a little harder with trying to get the measurements she needed. She kept measuring his spine and trying to get him to cooperate with trying to check blood flow. I even asked her, “do you see anything concerning?” To which she answered, “I can’t technically diagnosis anything.”
What I saw was a healthy baby boy, a very active little boy who measured exactly with my due date, even a few days to almost a week ahead on some measurements.
“We saw two areas of big concern on the ultrasound.”
The words no mother to be wants to hear. I felt everything stop around me as she explained what the tech had showed her. She flipped over the crisp white sheet of paper she had brought in and explained they were referring me to a specialist. There is extra fluid around little bear’s brain and the most concerning part was the appearance of a cystic tumor close to his tailbone. It hit me then, something was wrong with my baby. Not just something, she said the biggest concern is possible spina bifida. I asked her point blank just how concerning this was to them, “on a scale of 1-10.” She told me that if I was her sister then she would be very concerned, but as a medical professional, she would probably put level of concern between 7-10. Not the numbers I wanted to hear. I repeated this question three times, “but his legs are very strong and active, that’s a good thing right?” She had mentioned that a big concern would be nerve damage. And yes, she told me that the fact that he’s so active and growing at the rate he should, those are good signs. She said a lot of babies who present these signs don’t often even make it to 20 weeks. So that’s also in mine and little bear’s favor.
But the terror. The bewilderment. Is this really happening to my seemingly healthy active baby I just saw on the ultrasound 15 minutes ago? This can’t be happening, right?
The nurse walked me out the back exit so I didn’t have to walk through the waiting area sobbing. She gave me a box of kleenex and kept saying “I’m so sorry you had to get this news today.” I was in so much shock I really couldn’t respond. I sat in my car and just sobbed. Phil couldn’t be with me, he left Wednesday morning, 4 hours before my appointments, and wouldn’t be back until Saturday. I called him and tried to explain what the midwife had seen. I don’t think it really sunk in until several hours later when he began to realize just how big the unknowns are. I finally got home with Ender and tried to function. Thankfully the family who had watched him for my appointment had worn him out pretty efficiently. He went to bed, and I all of a sudden had an absolutely heart wrenching thought. I had forgotten, or it hadn’t even crossed my mind, to ask if little bear was suddenly at a much higher risk of miscarriage. I managed to get in touch with the on-call midwife and choked out my question through more tears. She immediately reassured me that no, there was absolutely no higher risk of miscarriage, this just means I need to go see the perinatal specialist and by seeing them I will get a lot of questions answered. I felt better after hanging up. I talked with Phil some more and we both tried to comfort each other over the phone and voiced the questions and concerns and just the HUGE unknowns we simply don’t have answers to.
The questions that just keep circling in my head seem to only be gaining momentum. To put them all into words is so very difficult. I woke up this morning to find that my entire mindset has shifted. I am no longer eagerly counting down the days to my due date, I begging that those 137 days left are enough. Are they enough to carry my child to a safe delivery? Are they enough, or will they be the last days we have with him? The practical side of me is desperate for the mental lists that have disappeared. You know, those lists where you have a running list of everything you need when preparing for the birth of a child? The lists where you mark down the preferred stroller, car seat, clothes, essential child care items? Yeah, those, will I even need those? Will I need to get that new car seat? Will we even need that new double stroller that will accommodate having two little boys?
Will my baby be okay? Will he live to be in my arms and live a healthy life?
Those are the questions that are ringing the loudest. We are facing a parent’s worst nightmare. We are sitting in the dark unsure of what’s going to happen. The range of unknowns and possible situations are too great for the mind’s comprehension. Even as I sit here and write this, I feel my little bear’s strong movements and my heart breaks all over again, “will he be okay?” All of my hopes, dreams, and plans for the rest of this pregnancy have been shot out the window. I don’t even know anymore if having a natural birth is an option. I’m afraid to look anything up, I’m scared stiff of researching. I am in limbo. I have no direction, I have no idea where things are going to go, it’s simply dark; pitch black and I’m afraid to feel my baby because I don’t want to lose him, I don’t want to have my heart ripped to absolute shreds. I don’t want to keep getting attached only to have him ripped away from us. But I can’t help but love him, cherish him, long to hold him safe in my arms. My heart is already broken, it is already being ripped to shreds. I’m afraid to hope for things to be on the lighter end of the possibilities, I’m afraid to hope.
There’s a certain amount of isolation I’m already feeling as we wait to find out what’s going on. This is a parent’s worse nightmare, this is OUR worst nightmare. This is what no parent wants to hear. This is the thing that no one knows how to respond to. How do you say to the parents struggling with this “I’m so glad it isn’t my kid?” It has meant so much to have those in my personal circle just standing by me and us as we try to process this extremely scary situation.
Yesterday, October 31st 2016, we saw the specialist and I’ll have to say we both really really liked him. The ultrasound tech who did the ultrasound before we saw the actual specialist was amazing too. She definitely knew more about what she was doing and explained things as she went along. Of course, little bear made things difficult with his active little self, but she was able to get all of the important pictures and measurements she needed. As soon as the specialist came in, he very candidly explained everything they saw on the ultrasound, what that means, and what the next steps are. He seemed slightly surprised at the questions my husband and I were asking, and even said that we’re on the right track, we’re asking ALL the right questions. Which is reassuring still because it helps me feel like I can, maybe somehow, better understand and process what’s coming. The next steps are to see an entire team of specialists at Children’s here in Denver and along with that, I will have an entire day of tests, MRI’s, blood work, ultrasounds, and who knows what else. At the end of that day, we will sit down and have what they called a family session with all of the specialists and go over everything that day brings up. It is overwhelming, it is mind boggling to try to even take in the little bit we know now, but I am grateful we have so many specialists available to us and little bear, and for so many people who are standing up alongside us.
My words feel feel fuzzy today after yesterday’s appointment, and at the same time, I know the amount of information we’re going to be exposed to over the next 6-12 months is going to be even more overwhelming. As my hubby put it, we’re preparing for a fire hose of information and let’s hope we actually retain some. For the practical side of things, my entire birth plan preferences (I never expect things would go to plan) has completely shifted. I will be having a scheduled c-section between 37-38 weeks as long as nothing else comes up or changes over the next 15 weeks. Little bear will be having surgery 24-72 hours after being born, will be in the NICU, and we just won’t know how long or how any of that will go until he’s here. Meanwhile, we’ve got the answers we needed after Wednesday’s appointment, but those answers have only brought up more questions. I feel like those first two days after getting the news that something was wrong with my baby were the days I spent grieving. I cried my tears, I allowed myself the time to feel the fear and worry and acknowledge that everything was changing. And during the 5 days between the first ultrasound and our appointment yesterday, both my husband and I mentally prepared for worst case scenario. The scenario we were given is a best worst case scenario and it’s something we are approaching with a logical and calm mindset.
This is hard, please don’t get me wrong, but I know we’ll be okay, we’re going to make it, and without a doubt in my mind, both of our children matter with equal importance and we love them with all that we are.
Thank you for your thoughts and prayers and support. I will not be putting blogging at the top of my list of priorities, so thank you for understanding if I disappear for awhile.