I’m on bedrest at the hospital. I arrived here on an ambulance, and I’ll be here for a while. Maybe till I have Sam. It’s so far from how I imagined this pregnancy playing out its last couple of months. I’m pretty sad.
On Sunday morning, Steven rushed home from church to find me on the floor. He says what he saw looked like a battle scene. He called an ambulance, and we ended up at the wrong hospital that actually turned out to be a good mistake. While we waited for the doctor, we talked to Sam, telling him how much we loved him, how it was okay to go if he needed to go, how happy we were that he was our son–we thought we were losing him, and we were telling him goodbye. Turns out, it wasn’t his time yet. The doctors helped us stabilize, found Sam’s heartbeat, and I definitely had no idea I could have that many tubes going in and coming out of me! The team of perinatalogists called for another Level II ultrasound, and noticed some of Sam’s anomalies were not consistent with Trisomy 18 like we’d thought. There was even hope that what Sam had was non-fatal.
They performed an amniocentesis, and I was relieved to see the gorgeous honey-colored fluid. It meant Sam had been completely unaffected by the whole episode–no blood in his fluid, and it was clear of infection. On the ambulance ride, I felt him swimming around like he was oblivious. Turns out, he was.
When the amnio results came in, we were devastated to learn that Sam has a condition called triploidy, where he has an extra copy of every single chromosome. It is alot more genetic information than Trisomy 18, it has lowered Sam’s chances of being born alive (even lower than Trisomy 18), and it poses a risk to my health as well, which is why I’m hanging out in the hospital for the next few weeks. Here are some interesting statistics about what Sam has:
Triploidy occurs in about 1–2% of all conceptions, but most of these pregnancies end in early spontaneous miscarriage. Very few pregnancies with a triploid infant go to term. Only one in 10,000 infants is born with triploidy, and it is estimated that for every live-born infant with triploidy, 1,200 have been lost as miscarriages. Most infants with triploidy are either stillborn or die shortly after birth. The longest recorded lifespan of an infant with full triploidy is 10 months, although this length of survival is extremely rare.*
Sam first had a 1-2% chance of being conceived with triploidy. Miracle. Then, he made it through his first trimester. Miracle. If he makes it to term and is born alive, he will be the one who lived among 1200 babies with triploidy who did not. Miracle. Even now, before he’s even born, the doctors are baffled. I am carrying a statistical miracle. We were not supposed to make it this far.
In the meantime, Sam’s non-stress tests are stellar. My placenta is still sending him plenty of oxygen and nutrients. His heartbeat goes up when he swims around, and lowers when he’s resting, he has the hiccups, and he moves around like a champ. He’s growing slowly, but still growing. They saw improvements on his brain, normal measurements and no cysts. We’re still seeing anomalies, but they’re mostly fixable with surgery. It’s good news, but it’s is hard to process the good news with the fact that Sam does have a fatal genetic abnormality that overrules this good news. There are some days when this pregnancy feels like a ticking time bomb. I look forward to the end of April when Sam is due, but I dread it, because unless a miracle happens… an extravagant miracle…. Sam’s due date will also be the day we lose him.
The nurses let us keep a doppler in my room, and Steven has gotten really good at finding Sam’s heartbeat, although he squirts way too much jelly on my tummy. We read to Sam at night, and I talk to him, telling him how happy I am to carry him, how proud I am that he’s growing, that he’s shocking the doctors, and just that he’s my son. It feels like more of an effort to stay bonded with him, and Steven and I are trying to get a good routine established for the next few weeks while I’m in the hospital and he sleeps at home.
We are really heartbroken, as we had held onto the last weeks of pregnancy as our time with Sam as the span of blessing before the loss, and the chaos of living at the hospital and the complication of this diagnosis to Sam’s health and my health as well are really taking the joyful pregnancy away, or at least making it more difficult.
You’d think I’d stop asking for extravagance at this point. It seems like I’ve been answered with a “no,” but I’m still asking for extravagance. I’m still asking God to allow me to raise my son. I’m asking God to put us in the medical record books, that we’d be the ones doctors mention as the longest surviving infant with triploidy. And if He answers me “no,” which it’s looking alot like He will, I’ll be heartbroken, and I’ll wait for Him to answer me, to put my heart back together, and to offer me redemption for this tragedy. I ask, not because I know He will answer me “yes,” but because I don’t know. I ask because I’m human, and I need to acknowledge my frailty. I am not God, so I ask. Ask with me.