Another ultrasound, and how we’re doing

When we went in for another ultrasound, three weeks to the day that we had our 20-week fetal scan and learned about Henry’s Spina Bifida, the nurse commented that my heart rate was elevated. “Yeah,” I said. “After what happened last time, can you blame me?”

She couldn’t.

We went in the ultrasound room and I laid on the table. Surprisingly, despite the mild anxiety, I was feeling really good. We were all in pretty good spirits. The big shock of his diagnosis had already pretty much been absorbed, so if they had more bad news for us, I think we figured it couldn’t be any more shocking or devastating than what we had already heard. And to boot, I was excited to see my baby. With June I got one fetal scan — that’s what happens with “normal” babies. I got to see her once, and then not again until after she was born. In the interim, I really missed my baby. I wanted to get to know her. And while it was devastating that Henry wasn’t “normal,” I was (and am) still thankful that I can get to know him better while he’s in there. Seeing his features on the ultrasound never gets old — his little nose, his fat cheeks. It just never, ever gets old. So I laid back and drank it in, while the ultrasound tech took her measurements.

Understand that up until now, the word “paralyzed” had been thrown around quite a few times, both from the Maternal Fetal Medicine specialist and my regular OB. At my OB’s office, I asked about Henry’s clubbed feet, unsure about the term and too chicken to search for it on Google Images. Does clubbed feet mean that his feet are bent inward? I asked. Or are they all mangled and shaped like clubs? I pictured his feet like the end of a chicken drumstick — just hobbled and, well, like a club. My OB smiled and said sadly, Well, does it really matter? He’s not going to be able to walk. He’s paralyzed. Oh. Right.

So imagine my surprise when we see his tiny face, his enormous Sleestak eyes, his heartbeat, his stomach, and then finally his lower body — his upper legs — and they’re kicking. Not substantially. But they’re moving.

I am notorious for not being able to see a damn thing on these ultrasound screens. I have to take my husband’s word for it that Henry is a boy (“Definitely a boy,” the technician says, whatever that means.) because I can’t make out anything on that screen. Lou assures me that looking at his male anatomy is like looking at the silhouette of the Washington Monument, but I just can’t see it. So when I looked at the screen and I think that I saw Henry move his legs, I waited for quite a few minutes to ask the technician, because surely I was seeing something else. I knew if I asked whether his legs were moving, she would give me a look like, oh, poor thing, and tell me No, sweetie. Remember? He’s paralyzed.

But damned if it didn’t look like his legs were really moving. So I risked looking dumb and just asked: “Those things that are moving … are those … his legs?”

“Yup,” she said, not even taking her eyes off the screen.

UM HOLY SHIT, I wanted to say. Instead I said, “He’s kicking his legs? Those things right there?”

“Yup,” she said, “looks like he’s kicking a little bit.”

UM WELL HOLY SHIT, I thought, BECAUSE WE THOUGHT HE WAS DEFINITELY, DEFINITELY PARALYZED BUT YOU’RE ALL A BUNCH OF LIARS I GUESS, NO BIG DEAL. Instead of saying that, I just stared at my husband, and he stared back at me.

The MFM specialist was equally unimpressed when he came in and the technician told him that she had observed movement in his lower body. “Well, good!” He said, not taking his eyes off the screen. “That’s good news.”

Yeah, it’s MIRACULOUS NEWS, I wanted to say. But again, I didn’t. I was too shocked. Stunned. Speechless. Thank you, thank you, thank you God, he’s kicking his legs! He might not need a wheelchair after all!

Of course — he could become paralyzed later, given the fact that his spinal membranes are exposed to the amniotic fluid, and that can cause nerve damage over time. That’s a reality we’ll have to accept when we come face-to-face with it — but not today. As of today, he’s been healed. We’ve been given a reprieve — a big one — and today, Henry is able to kick. It might sound corny, but it’s obvious to me now that God is writing this story — not the doctors. The doctors can only interpret what they see, but they don’t have the final say. And that’s reassuring and terrifying, at the same time, in a way. I don’t know how this is going to end. I don’t know what we’ll see on the next ultrasound screen. But I know for sure that when it comes to Henry, none of us are in charge.

Like my husband says, Henry has a few tricks in that spinal sack of his. And we’re just going to have to wait to see what he shows us.

***


Other than the MIRACLE we experienced last week, we’re living day-to-day, doing well for the most part, but mainly just doing okay. I still have these bursts where I’m incredibly optimistic and excited, and even if Henry turns out to be paralyzed, I know we’ve got all these amazing resources and relatives and doctors, and we’re going to be okay. We’re going to give him the best life possible. Other times, I just feel waves of anger — or what more accurately feels like annoyance. It strikes at the weirdest times — I’ll see an ad for Bud Light Lime (a delicious, delicious beer), and I think oooh, too bad I’m pregnant, I want one of those! And then I think, well why don’t I just have one? What’s even the point of trying to be healthy anymore? You do all these things for your baby, hoping for the best possible outcome — you take prenatals, even though they taste like fish and make you gag. You visit with your doctor, you write down all your questions and you give up SUSHI and BEER and you check — you CHECK OBSESSIVELY — everything you eat to make sure it has iron and folic acid, because you don’t want to take a chance — even the slightest chance — that your baby’s health will be negatively affected. And then you go to the doctor and find out something like this happened, some weird chromosomal fluke, and what was the point of taking vitamins again? To prevent something like this? It makes you just want to throw up your hands and give up. Have a beer. Because you tried to do everything right and you failed somehow anyway. What’s the point of even trying?

It’s hard for me to look at nutrition labels anymore. In the first trimester, I’d eat TONS of vitamin-fortified cereals (one of the few things I could stomach with the morning sickness) and read the back of the box and feel relieved — I was eating shit with 100% of all the important daily nutrients — not bowls and bowls of leafy spinach, but I did what I could, given how shitty I felt. And I gulped down 2-3 bottles of Ensure every day, and took a freaking prenatal and a folic acid supplement, for God’s sake. And I felt satisfied knowing that I was doing what I could do — barring periods of sickness where I could only eat potatoes, if anything at all — to help Henry grow and develop properly. And now I look at the Ensure bottle and think, fuck you, Ensure. I was drinking like three of you a day, back when I first got pregnant. 25% folate, my ass. You were supposed to do something, and you failed. I failed. Fuck off with your calcium and your B12, because what good is it if my kid can’t move his legs? Even prenatals are hard to choke down anymore — not because the fishy taste makes me gag, but because I feel majorly, majorly betrayed whenever I look at the bottle. Fuck you, prenatals. I thought you were supposed to prevent this.

Clearly, I am still working through the grief. and I’m trying not to let it affect how I interact with my other, healthy child. A few weeks after we got Henry’s diagnosis, I noticed that I was becoming obsessed with June’s verbal development. She just turned 17 months, and she does this thing where she’ll point or act out words, instead of really saying them. Right after Henry’s diagnosis, this really started to freak me out, badly. Our conversations, if you could call them that, would go like this:

Me: June, can you say “ball”?
June: [points to ball]
Me: Good! Can you say “ball”?
June: [sneaky look]
Me: Ball?
June: No.
Me: Ball?
June: Yeeesh.
Me: Ball?
June: Buh.
Me: Ball? Ba-a-a-a-llll?
June: [crawls away]
Me: [sobbing] OH MY GOD, I KNEW IT, YOU’RE RETARDED.

And inevitably it would end with me crying and searching WebMD to see what was wrong with her. Because clearly SOMETHING WAS WRONG WITH HER. I mean, I already failed my other baby, and he’s not even out of the womb yet. Surely I’ve failed this other child, in some way or another.

(By the way, June can say around 15 fairly-understandable words right now, not including the signs she knows and the little gestures she uses to act out what she’s trying to say. According to several of my mom friends and WebMD [we haven’t had her 18-month checkup yet], she is completely on par as far as verbal and physical development. There are NO red flags. And yet, the doubt is there. The grief, the anger, and the anxiety — they’re all there. Every day.)

So, that’s how it is. We’re excited. We’re still grieving. We’re still hopeful. We’re looking forward to him. We’re dreading him. It just depends on the day.

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12 thoughts on “Another ultrasound, and how we’re doing

  1. That is so awesome that you got to see him move. How amazing! I have to agree with Amanda and say that I think you are brave and amazing for putting all of this out there so honestly. Someday, another mother will go through this same thing and I hope she stumbles across your blog because it would certainly help her and bring hope to such an unfair and terrifying situation. Bless you Sarah

  2. Toddlers never perform on cue. You have to actually catch them in the act.(By the way, "retarded" is really not a good word to use because people bandy it about to mean "stupid", "annoying", etc.)Good news on Henry though. I think the doctors missed the memo in which Henry said, "You know, I'm SOOOOO going to disprove everything you're predicting."

  3. Start with June – My youngest daughter will be 18 months old next week, and her vocabulary consists of Mama, Dada, and an annoying sound that kind of goes like "eeeeeee" and means any one of a gazillion things. It's a fun guessing game. I have five kids and have watched them each develop so differently, so June is probably right where she is supposed to be. And if she is speech delayed, at least that's a relatively easy "fix." It's so normal to worry and wonder about your children's development, epecially when it's your first (and you've just found out there is something "not so normal" about your second). It's also you wondering what you can control, what you can fix, because you can't do anything about Henry right now. I've been there.My second child was born with a rare genetic deletion called Williams syndrome. Clare has developmental delays as well as a whole slew of medical issues (brain malformation, kidney issues, thyroid, and most severe is her cardiac defects). We knew about her heart issues at birth and received her WS diagnosis at 6 weeks old. Clare is now 7, so I have had 7 years to process what her diagnosis means to her and to our family. And I am still processing it. I will never be completely there and "okay" with it. How can you be when every day can be a challenge? You will hear so many people (both parents of special needs and those who have no clue) say, "Oh, a special needs child is such a blessing!" And you know what? They are right – Clare IS such a blessing and a joy in our family. She has made me be a better mother and a better person. She has taught me so much. Every day is a challenge for Clare. Even the simplest task is daunting. School is incredibly frustrating. She has endured 10 surgeries and more needles, exams, tests, and hospital stays than you can count. But she is the LIGHT in our family of seven. She is so loving and caring and kind. She touches everyone she meets. She has a simple, beautiful love of Jesus and cannot wait to make her First Communion this spring (she has been asking for a while now "When I can receive Jesus?"), and she has taught me what it means to be a Catholic in many respects.But you know what else? There are many moments and many days when all I can scream is THIS SUCKS!!! I think of Mother Teresa's words (paraphrasing): I know God won't give me anything I can't handle, I just wish He didn't trust me so much. And it's so true. I will scream: I HATE this, I don't want this, I want "normal" kids. And feeling that way is honest. And natural. I would think you were weird if you didn't. So don't ever let anyone tell you you can't have those emotions. Like I said, it's been over 7 years, and I was just crying the other day about how much I hate Williams syndrome. It's not the big things that get to you (okay, sometimes it is) but the little daily things. So take care of yourself and surround yourself with lots of support. And let yourself scream occasionally.Okay so this is ridiculously long, but I want you to know you are not alone. You are not a bad mom if you scream and cry and yell and punch walls. I am praying for you. That no matter what happens and/or no matter what quality of life Henry has that you find some peace in everything. That you can enjoy moments of your pregnancy. I know it's a rough road. I don't know why God picked us to be moms of special needs children (but I WILL ask Him one day!), but He will give you the strength, wisdom, patience, courage, and GRACE you need.

  4. I'm here because Calah Alexander linked to your blog this morning…and I am so grateful that she did! I was scheduled yesterday for a mid-pregnancy ultrasound in a few weeks time that may or may not give us "good news" and I'm so anxious I feel sick sometimes. Just reading this post of yours (and the previous one) and seeing how somebody *can* cope when it's bad news (even when your emotions are all over the place) has lifted a weight from me this morning. Thanks…it's such a backwards kind of comfort to know that if things do come unglued for us, we're not alone. And I can't even begin to say how grateful I am that you included the fact that you *were* taking folic acid! I said to the devil on my shoulder, "See?!! Even then!" Because deep down I am still struggling hard to be free of a (very non-Catholic) view of suffering where almost anything bad that happens can be directly and specifically linked to some "failure" of one's own. Talk about guilt and anxiety… I am praying for you and your cute little Henry. And subscribing to your blog.

  5. My 8 year old son has spina bifida, and we were told all kinds of things when I was pregnant with him. The truth is….no one really knows for sure until Henry arrives and shows you what he can do! Doctors always like to prepare you for the worst. Keep in mind that all kids with spina bifida will vary, but my son walks with braces, he does not have a shunt, and he has tested at or above his grade level in every academic subject. On top of all that…..he loves dinosaurs and to play baseball. Spina Bifida is his diagnosis, it does not define who he is. You will learn more about spina bifida than you ever wanted to know, but your heart will love like you never thought possible!! Please feel free to contact me if you ever want to talk. Hang in there…everything will be okay 🙂

  6. I heard that SB can be repaired in the womb, one of the ladies who volunteers with me at the YMCA babysits for a family who's baby was diagnosed with it a few months back. They went to Chicago for surgery when she was 20 some weeks, the baby was born a week or two ago and is doing great.

  7. Pingback: Wonder | wifeytini

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