“Above the storm, the smallest prayer will still be heard.” -Dolly
I’ve shared so much these last three weeks and I had always imagined in doing so it would help me, my family and all those who care for our family. Little did I know how much hurt and hatred I’d cause in merely expressing myself in less than a week. I’ve been called names like “monster”, “ill educated”, and “sick”. All because I’ve openly and publicly shared the most challenging decision and moment I’ve ever faced in life. I realize not everyone agrees with my belief that parents should have the right to make the decision that is best for their family, however, I never once expected the topic to become quite as heated as it did. Nor did I expect to also cause others, such as all the parents of spina bifida children, any hurt.
But I stand behind every word I wrote and every thought I shared, and will continue to regardless of the decision we make of whether or not we’ll continue this pregnancy. After today I admit I was quite moved, not only because of our medical appointments that we’ve been nervous about, but because through the things posted on my blog it in turned caused the moderator for the baby center group to act in a positive way, to step up to pray for my family along with the many other families affected by spina bifida. At first it was really tough for me to accept when I first learned of it a few days ago. I felt as though I turned to this group for hope and in turn was left with only one sided judgment along with the impression that I offended nearly every singly mother and person affected by spina bifida. That was never my intent. But last night I finally had a chance to read in facebook about the event they created where they began the first “Spina bifida kids worldwide day of prayer” where they hoped everyone would pray at noon. Yes, though it was never my idea for such an amazing gathering of people to pray…there’s no doubt that this wouldn’t have ever happened if it weren’t for the fact that I brought so many very serious and sensitive issues to light that affect every single family ever expecting a baby with spina bifida. Nearly 3,000 people joined in the facebook to show just how many people were touched by this effort. I spent not only most of the day praying…but also crying.
This morning we met with the pediatric neurosurgeon. For some crazy reason our last ultrasound images weren’t recorded in the hospital’s system so it was tough for the neurosurgeon to give us details beyond the “numbers” on paper. She gave us optimism, but said she really wanted to see the images. As I listened to her optimism I began to tear up and paused to tell her we just wanted to know as much as she could tell us and how as much as we believe there’s still hope, the things we had seen during the last ultrasound and what we’ve learned since that appointment have truly scared us. We made it very clear to her that even with as much hope we had, we still had not ruled out termination. She didn’t hesitate to call maternal fetal medicine at Winnie Palmer Hospital to order an ultrasound for today. The hopes were to make it there and then to her office for her opinions after she saw the images and then to head right on over to my OB doctor’s office…all within an hour and a half. We left feeling scared and nervous and still so uncertain of what is ahead.
I think the only thing we left the pediatric neurosurgeons office certain of is that we will NOT be participating in the MOMS research study. She’s well versed in her profession and the entire practice of neurosurgeons have a great deal of experience. She explained that though it’s an option, that in her opinion the benefits have not proven to be worth the risks and that there’s still not enough evidence to proof to make her suggest any patient participate in the study. She made it very clear that if the spine defect is open they will be performing surgery within 24 hours and that overall they have seen positive results in their practice when the defect is low in the spine.
THE MAP TO MY MIND
I suppose those that really know me know that I’m a little obsessive with mindmaps. I know I’ve written a lot the last three weeks, but mindmaps really helps me make sense of what is in my mind. I know many of you recall “The Map to my mind” I created last year so I created a less elaborate, perhaps cliff note version to help my mind cope through these thoughts. On the way to the neurosurgeon and then after our appointment in the morning I spent most of the time in between appointments creating mindmaps to help me make sense of my thoughts. I don’t know if they really made sense of anything, but it helped me really soak in the things going through my mind. I share these, perhaps to help you all see just how trying this all has been for me. But also because I realize many of you all think I’m just out trying to justify a reason to terminate my little one. You all have no idea how much this decision has weighed on our hearts and minds. As I stated in twitter today, facing this decision is equivalent to my kryptonite. Yes, I’ve lost track of how many people refer to me as “super woman”…being faced with this news and now this decision leaves me feeling far from “super”. I made a mindmap for my thoughts pertaining to the pros and cons of going fullterm having this child and then one for termination. I think if anything they’ll help you see just how much thought has been put into this decision we are faced with. Countless tears were shed thinking through all these thoughts…I suppose it sums up how much my mind and heart have been through these last three weeks. Not sure if you guys can even read my chicken scratch, but I figured it was worth sharing…
We headed to our ultrasound appointment at Winnie Palmer early. We arrived a whole 45 minutes early because we had to register first. I prayed we’d get to be seen early so that we’d have time to head to the pediatric neurosurgeon and then to my OB appointment. Over an hour passed beyond our appointment time before we were finally seen. I began to feel more helpless wondering how much more could go wrong today. The ultrasound took about a half hour and we got to see our sweet little one once again. It’s heartbeat was only 150 beats per minute today and though it was moving, it seemed much more settled than those first two “wiggle worm” ultrasounds at 13 and 16 weeks. I know you all are anxious to see a new photo of the baby so here’s today’s ultrasound photo of our baby…a view from the front this time.
The baby was being a bit difficult today, but do you blame it, it’s poor mother has been an emotional mess and have to admit I’ve felt nauseous and haven’t had much of an appetite all day. The ultrasound tech confirmed that I likely haven’t felt movement still because the placenta was in the front, between the baby and my belly. My OB believes I should begin to feel movement in the next month. Today the baby was in an awkward position and half the time it’s back and behind were pushed against the placenta so it was tough for them to get the great views like they had 3 weeks ago. Halfway through the ultrasound the doctor in maternal fetal medicine came in to have the ultrasound tech help him take a closer look at certain parts of the baby’s spine and head and talk to us. Instantly he said how it looked to be a very low lying opening, what appeared to him to be in the “sacral” region. Which is said to be a good thing, well, as good as things can be considering there’s way to cure spina bifida. He also said the opening was small. He seemed quite enthusiastic in sharing what he was seeing. He explained the curve of the nerve in the spine is visible and that it is a sign of an “open” spine defect. Though this is not good, it is a positive sign that the opening of the spine appears to be small. I asked him if that would change and if it could get bigger and he said typically it doesn’t change size. He said right now that there’s no obvious signs of hydrocephalus. He said it was a good sign to see the baby’s legs moving and that the feet were not “club” feet thus far, though he said this could change as the pregnancy progresses. He said from what he was seeing he felt the outlook was very good and given that we have a great OB doctor and the neurosurgeons in Orlando are so great that he knew the baby would be well taken care of and chances were better that we’d have a less severe case for the type of spina bifida the baby has. For the first time since this diagnosis we felt a bit of “hope”.
We unfortunately weren’t able to meet with the neurosurgeon again because we were already running late for my OB appointment. I left a message with her office. She in turn left a voice message for us expressing optimism again and said much of what the doctor said during the ultrasound. She plans to call us back in the morning to speak to us more and perhaps that may help calm our fears a bit.
I have to say that my OB doctor and the rest of the nurses and staff are amazing. I called to let them know we were running close to a half hour late and they said it was no problem at all. We were seen pretty promptly. They can sense our stress of the last year and thankfully they’ve been an amazing support for us since this diagnosis. I have to say I’m always surprised to hear when women say their doctor’s mislead them or advised them to terminate, in our case, our doctor and the neurosurgeon both were very optimistic and though they know termination is an option we can consider, they have only tried to help us see the hope ahead as well as preparing us as best as they can for what lies ahead.
My doctor talked to us about both going fullterm and termination. He made it clear that he’ll take the best care of me and if we go fullterm we’d likely plan an induction or surgery date. He said most do have c-sections, but that normal labor isn’t ruled out completely yet. He said if we go fullterm he absolutely will be the one to deliver our baby and that if by chance I go into labor early that he will make sure they all know to track him down, even if he’s off, and that he’ll be there for us. Yes, amazing to say the least. Something tells me that as much as he’s moved us with his care for me through the past year that in turn we’ve likely moved him as well…and yes, it leaves me quite touched. We discussed the option of termination as well, and he reemphasized the 24 week cut off and that if that was what we wanted to do that he would like to know in the next week or two because of the measures he’d have to take on his part beyond just medical care. Right now I admit we are are much more optimistic, however, we have not made our final decision and likely won’t until after we’ve spoken directly with the neurosurgeon and also go through next week’s ultrasound. I have this feeling it may be best to have one more ultrasound to help the doctors really get the best look at the baby, who was definitely being stubborn today.
It was a little easier to breathe leaving the last doctor’s appointment. I admit I was anxious to go home to see my babies. Before heading home we picked the kids up and I was greeted by Hope with this note. Yes, my baby girl knows when my heart is heavy.
I thought I’d leave you all with two songs, of course it’s up to you if you choose to listen. I admit music has held me through the last three weeks and these two songs certainly have been among the ones helping me through these tough moments. The first song I hadn’t heard until yesterday when a friend emailed it to me saying it reminded her of me and what we were going through. Yes, it’s left me in tears.
And Let it be. Regardless of what we decide, somehow, someway I’ll find a way to “let it be”. There will be an answer…let it be.
Hopefully this update helps you all a bit. I know we have many of you out there praying…and well, there’s a power in prayer. I believe it. I know it may not “fix” what we’re up against but somehow, someway, it’ll help us make it through the moments we have ahead. Thank you all again for your support as we faces some of the most challenging moments of our life.
Your talent is amazing!!!!!
by Amanda Kern
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