This is a lot of words, but they are important.

I don’t know if you folks recall, but a few months ago I mentioned in a few sad-Sally posts that I was having a series of terrible horrible no good very bad days. And I really was. So much so that it has taken me all this time to figure out if it was appropriate to talk about it on this blog, and if I even wanted to. But as things tend to go over time, I have developed a much clearer perspective on everything and have decided I am ready to share.

So here it goes.

At our 20 week ultrasound our Doctor found two tumors attached to the base of our baby girls spine. They are called  Sacrococcygeal Terratomas and while they are the most common tumors found in babies, they still only occur in about 1 in 40,000 pregnancies. We were in shock.

Pete and I are both 25 years old with blessedly unremarkable medical histories. We had done the whole series of genetic tests that are offered at the beginning of a pregnancy, and had been given the least possible likelihood of any issues across the board. We knew that this was the ultrasound where most pre-screen-able birth defects are found, but I don’t think either one of us even fleetingly registered one iota of concern or worry.

During the ultrasound Pete and I both noticed the black spots by our baby girls bottom, but neither of us asked. The ultrasound tech went through explaining the various bones and organs she was measuring, but never mentioned them either. They aren’t supposed to, I guess.

Our usual Doctor was in surgery so afterwards we met with the OB on call to go over the ultrasound results. I can’t remember how he exactly he worded it, I wasn’t going to listen either way. Some people are immediately prepared for the worst. Pete is. If he can’t find his keys his usual first thought is that someone stole them or that they are gone forever. I am inappropriately optimistic. Optimistic probably isn’t the right word. I think it is more like Joan Didions magical thinking- an overly confident belief in my power over any given situation. Like Cher in Clueless I am always ready to negotiate my grade. So the full reality didn’t hit me at all, I just immediately started trying to think of ways to get my baby and I out of it.

After being rushed in and out of a few more Doctor’s offices that afternoon my magical thinking was assaulted by reality. After our second ultrasound we were sent back to the first Doctor who had quite helpfully Googled more info on our diagnosis for us. Except when things like this are going on it is not that soothing to know that your Doctor is using the same tools to help you as you just used earlier that day to figure out when Britney’s new single will be released. He handed us a sticky note with the proper spelling- S-A-C-R-O-C-O-C-C-Y-G-E-A-L T-E-R-A-T-O-M-A on it so that we could explore the terrifying world of Google medical search on our own and sent us on our way.

When we got home I went up to our bed and kept cry-screaming from my guts like maybe if I threw a most impressive fit God would go ‘ok ENOUGH your baby is FINE’ and take it all away- like a parent giving into a temper tantrum. We use what we know I guess.

We were always planning to fly to Houston the next day to visit my family for Pete’s Spring Break and luckily were able to get appointments at Texas Children’s Hospital where we met with dozens of specialists who thankfully did NOT have to Google their diagnosis. We had tons of tests and got to ask tons of questions.

We have had several ultrasounds, an MRI, and two fetal echocardiograms. We now know a lot more. We know from the echocardiograms that the tumor is not causing stress on her heart. Sometimes these tumors can be solid, large and vascular and can steal blood flow from the baby causing the heart to have to work twice as hard and go into distress or even failure. That is what normally causes fatalities in these babies. Our baby girls’ teratoma is small, cystic, and non-vascular so this is not something they are currently concerned about- although they will be monitoring it’s development closely.

Because of her condition we will now be delivering in Houston, and will be moving there in May right after Pete graduates. Texas Children’s Hospital is one of the three hospitals in the US that specialize in these types of surgeries and between their expertise and our familial support down there the decision to relocate was really no decision at all.

After she is born she will have surgery to remove the tumor, and will likely stay in the NICU for 2-4 weeks. Once she is released to us we will stay in Houston for another 2-4 weeks so that they can continue to monitor her and then we will move to Austin permanently. In the long term they will want to check on baby girl until she is about three years old to make sure that the tumor does not come back, that no cancer develops and that she has recovered normally from the surgery. In the best-case scenario she shouldn’t have any long-term affects.

It has been a month and a half since we first found out, and we are focusing on getting back to the excitement of having a baby. I have good days and bad days, but things just get easier as you get used to them. There is nothing I can do right now except hope and pray for the best, and stressing out is not going to help anything. We are putting our house in Chicago on the market, and preparing to move which is a good distraction.

I decided to share our experience with all of you because I feel like no one talks about sick babies. Or no one in my world does. It makes people very uncomfortable, understandably, and prior to experiencing this I would prefer not to really be aware of the risks of pregnancy either. It is much more fun to stalk peoples Facebook albums of happy chubby babies and imagine that is how it is for everyone and how it will be for you. And I hope it is. Sincerely and with all my heart.

But I also hope that if it isn’t, that somehow my sharing our story with you as we go along is comforting in a different way. Our baby is sick and we are really really scared. Giving my baby over to Doctor’s after she is born so that she can have an invasive surgery terrifies me every time I think about it and makes me want to head back into my tear soaked wet blankets. The fact that I won’t bring her home to the life her daddy and I have dreamed for her right away, and that she will have to stay in a hospital surrounded by machines makes me want to vomit. But I know in my heart of hearts it is going to be ok. I believe that we will eventually be able to bring our cuddly perfect little baby girl home and post pictures of her on Facebook and dress her in funny outfits and kiss her until our lips are chapped and all of those normal things we visualized before we knew about all of this.

So we are going to continue things around here in a reflection of our new normal. Some days I will be posting about fun design stuff, and cute baby nursery ideas, and Britney. And some days I am going to tell you that I feel like this is all my fault and that I just want to curl up into a ball and cry.

I will be editing myself a bit as I am aware that my words could one day affect the precious little nugget in my belly, and I don’t want to say anything about her condition that could one day embarrass her or make her feel overexposed. But I felt like it was the right thing for our little family to talk about it. Or talk about my experience at least, because not talking about it makes it feel like a secret and shameful and that can be so isolating. And because I know there must be other mommas and mommas to be out there feeling like they are the only ones going through something like this and sometimes it helps to be able to peek in on someone else’s experience for awhile.

 

Comments

  1. Julie @ Chapman Inte April 28, 2011 at 6:55 pm

    Bailey.

    I have no idea what it would be like to learn things aren’t going as expected (and I can’t imagine. I too think I can change most situations with thinking they aren’t really that bad, or there’s always a solution, or being generally overly optimistic). So this situation blows. If you need to be in Portland (oregon) for any fancy hospital stuff, you can use my house. And my bed. And my car. And anything else you’d need. Anything.

    Prayers for you.

  2. erika April 29, 2011 at 10:02 am

    bailey,
    i am way behind on blog reading but just read this and want you to know that i am praying for you and your sweet baby girl and your family. God will provide. I am praying for peace and healing.
    lots of love,
    erika

  3. Julia April 29, 2011 at 6:05 pm

    Bailey, I’m pretty sure this is the first comment I’ve left on your blog and I hate that all the funny crap you say doesn’t get a response but your scary situation does. My babygirl was born with a condition called craniosynostosis. My OB missed a possible pre-natal diagnosis during three ultra-sounds that should have caught it but thankfully our pediatrician on hand during my c-section noticed the problem immediately and snatched our baby away for MRI’s and testing. It was so terrifying to experience anything but perfection after having such an easy pregnancy. I can honestly say I was thankful this happened as a first time mom because I didn’t know any better. Only now, nine months and two surgeries later can I realize just how stressful it all was. I’m praying extra hard for you and Pete and that sweet little baby girl that y’all can find some peace and enjoy the rest of your pregnancy. I was amazed at the strength and resilience my seven week old showed me during her first surgery and I am so thankful and proud to be her momma. I know you will all get through this!

  4. leah May 10, 2011 at 7:43 pm

    Love, blessings and prayers xxx

  5. Chantal May 20, 2011 at 1:22 pm

    I am so tearful right now. I am so sorry you and your family are going through this. Thank you so much for sharing! Sending you lot’s of love and blessings. xx

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