Here Goes Nothing...

Well, the most UN-nothing ever

I’ve wanted to get this started for some time now, but I was never quite sure how and when to dive in. Now is the right time though, because our family is on the edge of something huge. As if a sweet, magical little Down Syndrome baby isn’t a huge thing to begin with, we’re coming up on a major surgery date. Open heart surgery, to be more specific, on our beautiful six-month-old daughter.

Baby Betsy has been one of the biggest surprises of my life, and definitely quite the challenge. Her whole story has been full of “yeah, that’s what YOU think” moments. You know the old saying about how if you want to make God laugh, just tell Him your plans? Well God thinks I’m hysterical, apparently. First of all, while my husband and I were planning on having a child together, we didn’t expect it to happen so fast. Suddenly I’m 40, in a brand new marriage and expecting my second child. One of the pitfalls of being pregnant at forty is you’re automatically considered high risk. While my husband and I like to do things naturally, organically, holistically, anything but the Western medical big Pharma way, it soon became clear that wasn’t going to happen.

Pretty soon I’m being sent to an obstetrical specialist. Blood test comes back positive for genetic abnormalities. Most likely Down Syndrome, they say. They could do an amniocentesis to find out for sure, but we don’t want that. Ultrasounds show what looks like a possible heart defect and bowel connection issues, both which are common in Down kids. While the specialist is pretty darn certain about it, all we can do is hope it’s just a fluke (which has actually happened to people I know). I waited quite a while before telling anyone else about the possible diagnoses, since there was still a chance they could be wrong, and I didn’t want to involve other people’s worried energy in the situation. First, I had to come to a place of peace in the matter, accepting all possibilities and trusting that everything would work out for the best. When I finally told my parents and my thirteen-year-old daughter, they of course offered love and support, which helped me feel less powerless about it all.

Fast forward to the day I go into labor. My husband and I would both have loved doing a home birth, but with the doctors being so sure of Betsy’s issues, that wasn’t going to happen. Our labor and delivery story probably deserves its own post, as it was like something out of a sitcom, but long story short, my water broke while I was at work. In a split second, my four years with this company came to an abrupt end, since I planned to breastfeed and this was not a job where I could schedule breaks for breast pumping. Mainly I was just glad this meant I wouldn’t have to be induced, and since my water broke, I assumed this meant things would progress quickly. I figured I’d have my baby in two hours, five or six tops. This is where God chuckled at Kristen some more.

I wanted to at least try for a natural birth, but about twenty hours in, I knew I’d need an epidural if I was going to maintain the strength required to push. This baby wasn’t exactly fully ready for birthing, there was just too much fluid built up and it popped like a balloon. She was almost in the right position, but turned slightly sideways. After numerous varied attempts at repositioning her, we had to face the fact that it wasn’t working, and I was prepped for a Caesarean delivery, something I had wanted to avoid if at all possible. Twenty-six hours and 44 minutes after my water broke, baby Betsy was finally brought out into the world. I myself was suffering violent shaking from the refreshed epidural, and I didn’t even get to see her in person for another six hours. My mom managed to snap a few photos of Betsy before she was taken to the NICU, so I did at least get to see those. It was fairly easy to tell that, yep, she has Down Syndrome…and unfortunately, the poor girl’s face was banged up and bruised from all the attempts to turn her.

When I finally get to meet my daughter, she’s been poked and prodded, had x-rays and an echocardiogram, and is covered in tubes and wires. Her face looks pretty beat up, but she’s still got that beauty that a mother can see no matter what. She is scheduled for surgery to fix her duodenal atresia, which is the intestinal connection issue, and that takes place two days after her birth. What. A. Trooper. They tell you kids are resilient, and that is true, but wow. This one is definitely a fast healer, in fact she was doing much better recovering from her surgery than I was from the C-section. Still, she looked rough; in fact, if I look back now on photos that I took from when she was first born and recovering from that operation, it nearly always brings me to tears. Even thinking about it does.

But that’s where I am now, trying to prepare to experience that again. The first time, it was different, since I’d really just met Betsy and everything about her was new. Now, I am used to being with her nearly constantly, every day. I am familiar with her gorgeous face, her sweet voice, her infectious smile, her silly little habits. Seeing her in any kind of pain makes me want to destroy whatever thing caused that pain. I know that this heart surgery needs to happen, and I’m quite ready to get it over with. She’s going to feel so much better and have better health in general, and I know without a doubt that she is in the best possible hands for this ordeal, and I know she came through her last surgery beautifully, and I know that God has 100% got this. But it is still super difficult to think about my tiny child having her tiny heart operated on. So here we are, waiting on pins and needles, doing our best to make all the necessary preparations, and praying and hoping for the best.

My aim here is community. I know that our family can’t be the only ones who don’t want to be on a medical treadmill. Doing things as naturally as possible is what we try for, and in some matters that hasn’t been possible, but we’re not giving up. We are going to do the best we can, and I want to offer support for others who want to do the same. Betsy’s story is just beginning, and while it has already had some difficult and even heartbreaking parts, I know it’s going to keep getting better.