Nowadays we can look back through the lens of time, which has a tendency to soften memories, and laugh at things, but it was a very trying time for our young family while we went through it; something we were only able to do thanks to the help and support and generosity of our friends and families.
Kaeleigh was born with a CHD, a congenital heart defect. Actually, what she has is a condition known as heterotaxy syndrome which, due to her irregular physiology, caused her heart, among other things, to develop incorrectly. But I'm getting ahead of myself. The story begins about 26 weeks earlier at the 12 week ultrasound.
If you've never been to a fetal ultrasound, it's a bit of a surreal experience. The mother-to-be lies on a reclined seat in a tiny room barely lit by lights about as powerful as a string of tree lights, and undoes her pants and lifts her shirt in a surprisingly very unsexy way. The father-to-be is sat on a stool off to the side to keep him out of the way and to wonder if maybe this stool wasn't hastily added by the staff when fathers unexpectedly started to show up too for these appointments.
The ultrasound tech then, in our experience, begins to work in complete silence. Complete, awkward silence.
She goops up the "wand" and mom's belly and then pushes a lot of buttons and turns a lot of dials and stares at the little monitor on her gigantic ultrasound machine as she pokes and prods with the wand, trying to get the best angles to see the fetus. Since the monitor she uses is typically in a position behind mom's head, it's virtually impossible to comfortably crane her neck to see, so most places have another monitor at a more convenient angle for mom to be able to see what the tech sees. It also allows any guests who've been shoved off into hospital Siberia to also see what's going on over there, which is nice, except that even when you're able to see what they're looking at, 99% of the time you have no idea what they're looking at. It's all black and white blobs and oh I think that was a finger! and quick, darting movements and freeze-frames of unidentifiable body parts as they take measurements.
Did I mention this all usually happens in complete silence? Because it does. I recognize and appreciate that the tech needs to concentrate and, in the end, I'd much rather they be focused and do a good job rather than be chatty and do a shoddy job... but at the same time, is a little description of what they're doing so much to ask? It's a very anxious moment (or 30) for the parents-to-be, and the unbroken silence and inability to follow what the heck all that stuff on the screen is and understand what all that clicking and clacking is about is a little unnerving. But I digress.
So it came to be that our mute tech who, for all we know, lost her tongue in a horrible chili eating accident, did her thing and we seemed to reach the end of the appointment. We based this conclusion on the fact that the tech began cleaning up goop from the equipment and my wife's belly and stowed the wand and tore off the little sheet of images she'd printed from the little printer, and not that she expressly told us so. Then she did something a little strange. Wordlessly (no, that wasn't the strange part), she got up and left the room, closing the door behind her.
My wife and I kind of looked at each other like, "Is that it? Do we leave now? What are we supposed to do or where are we supposed to go and, most of all, can she button up her pants and pull down her shirt now?"
The door finally reopened and the tech returned, with another woman in tow. A doctor. If you've never been to a fetal ultrasound before, this is unusual. If you have been to a fetal ultrasound before, this is unusual. Typically the tech pokes around for a little while and then smiles and says everything looks great and she'll see you next time and you leave. No doctor required.
If you're us, however, this is the scariest, worst moment of your lives because, you see, we'd already experienced this exact same scenario.
About a year earlier we'd gotten pregnant and it was at the same 12 week ultrasound that the same situation played out, right down to the mute tech wordlessly leaving and returning with a doctor. That doctor informed us that our baby had a condition known as acrania (I'll leave it to you to look up if you want, but be forewarned that the pictures may disturb you), which was "incompatible with life." Those are three of the lousiest words you'll hopefully never have to hear again together in a single sentence. I don't remember a whole lot of details from that conversation because my personal defense mechanisms have done their best to bury them, but I do vividly remember her saying those words. I hate those words.
So it was that when, again, a year later, the tech, after providing absolutely no insight into the health or condition of our baby, quietly got up and left the room only to return with a doctor, our hearts sank. Every fear we'd had since we first found out we were pregnant seemed to be coming true. All of the pain and anguish we'd put behind us was crushing down on us again. We felt helpless and hopeless and we both had tears in our eyes as we carefully watched the doctor for any clue to why she was there.
We'd come in with cautious optimism because, really, we knew that the odds were in our favor, but as we sat in that room waiting, doubt began to gnaw at our optimism. When the door opened and that doctor stepped through, we didn't know what to expect, but we expected the worst.
She told us that the baby's nuchal measurement indicated that the baby was at a high risk for a chromosomal defect. We came to find out that there are a number of chromosomal defects, Down Syndrome being the most common and best known, and that each one is scarier than the last.
There was hope in that the measurement wasn't a guarantee of a chromosomal defect, or any issue at all (false positives were possible), but it strongly pointed toward something being wrong and the first step was to start ruling possibilities out. That was accomplished with either an amniocentesis, which we'd have had to wait a couple of weeks to do, or a chorionic villus sampling (CVS) which we could do that day. We opted for the CVS because we couldn't bear to wait any longer than we had to.
Turns out we'd have to wait longer than we thought. We started the day hoping for the outside chance that we'd learn the gender of the baby early, and within hours were hoping against the outside chance that the procedure they were performing on my wife wouldn't cause a miscarriage or any of the other possible complications like infection or amniotic fluid leakage.
This all happened on a Tuesday, and the results were expected back by Friday. After the procedure and being put in contact with a geneticist and talking to doctors all day, we headed home to pretend we weren't just counting down until Friday. Eventually Friday came and we got the phone call.
Are you curious about the results? We were too, but they didn't give them to us. Not because they were trying to be mean, but because they'd contaminated the samples. Allow me to repeat that last part because it bears some repeating.
They contaminated. The samples.
They'd stuck a giant needle into my wife's bellybutton and removed a small portion of her placenta, putting her and the fetus both at some small amount of risk, and then they'd mishandled the samples.
We weren't really sure what to expect when they called, it could have been something or nothing or everything, but we were definitely not expecting them to ask if we could maybe come back in and go through the procedure again.
We were incredulous, but we did it because what else could we have done? It is what it is. Getting angry or upset or screaming at the doctors or nurses or administrators or the lab technicians or whomever was responsible wasn't going to change anything, so we did what we had to do. It became our mantra all throughout the pregnancy and beyond: it is what it is. It was part resignation to the enormity of the situation, and part coping mechanism to keep ourselves balanced and grounded throughout a very emotional time. Whenever we felt overwhelmed or particularly worried or sad, we'd comfort each other with those words: it is what it is. We did our best to provide the baby with its best chance at survival by seeing the best doctors and following their instructions and submitting to their tests and educating ourselves, but really, there was very little we could do that could change anything. It is what it is.
While we nervously awaited the results from the second CVS, we became something of experts at chromosomal defects. We immersed ourselves in learning about Down Syndrome and Turner Syndrome and a host of others, and in steeling ourselves for the possibility of our baby having one of these conditions. It's scary stuff and we developed an even greater respect and admiration for families that have a special needs child.
The following Monday we got the call: it wasn't a chromosomal defect. We were very relieved to hear this, but acutely aware that that didn't mean that there wasn't something wrong.
As the pregnancy progressed and the fetus got a little larger they were able, through copious amounts of ultrasounds, to eventually determine that she (we were finally able to learn the gender) had a heart defect. Early on her heart was very very small and it was impossible to tell just what was wrong or if it was life-threatening, but once we had the diagnosis things settled down some and we were able to fall into something of a rhythm; a rhythm that required weekly visits to a cardiologist and an ultrasound tech. Over the next 20 or so weeks they were able to mostly determine exactly what was wrong with her heart. Even though she was growing at a normal rate and seemed in all other ways to be completely healthy, she was still just a little peanut and her heart was still very small. The technology available just wasn't good enough yet to see exact details in something so tiny. It wouldn't be until she was out of the womb that they could get better ultrasound images, and it wouldn't be until a surgeon could see things firsthand that they'd know everything for sure.
What they did learn over the weeks, however, was that her condition was not likely to be life-threatening. Not immediately anyway. If left untreated it would probably be, but, we were extremely happy to learn, she probably wouldn't need to have the heart surgery right away and we could wait until she was a bit older, which is preferable in many ways. In other words, the defect wasn't nearly as bad as it could have been and, comparatively speaking, we were very lucky.
Mentally and emotionally prepared, we had our little Kaeleigh via a planned and uneventful cesarean (a normal birth was decided to be an unnecessary risk). That first night, however, we were introduced to a new and unexpected (to us) possibility of heterotaxy, intestinal malrotation, which, if not immediately corrected through surgery, is fatal.
That particular surgery could not be performed at the hospital we were in and Kae, at less than a day old, would need to be transferred to another nearby hospital and we would have to get mom, who'd just had a c-section mere hours before, discharged early so we could follow our little baby to the other hospital. We also had to figure out what to do with Ethan while all of this went on.
But that's a story for another time.
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