Looking Forward, Moving Ahead, Standing Still: When Life Moves Around You

We had a meeting today with PACT, the current neonatologist, and a couple of Chloe's nurses. The idea of the meeting was to clear up any misunderstandings as there have been many lately. With the slew of specialists that Chloe has, it's easy to get caught up in the who said what when about what game. We've not wanted a care conference lately for the simple fact that since February, these care conferences have looked so far down the road and given us worst case after worst case after worst case. So we've asked for bombs to be dropped by the bedside, where we can sigh, breathe in, breathe out, have a minute to gather thoughts and questions, and have the specialist's undivided attention while we discuss the current matter/fact/diagnosis/etc. at hand. However, this means that not having a care conference also means that the specialists themselves have not had a chance to sit down together and exchange their thoughts very well. Because of this, things have gotten murky. Hence why we freaked out a bit when we found out there was a conference held without our knowing-not because they wanted us not to know, but simply because they gather weekly for different critical patients, and it was Chloe's turn to be discussed. Hence why we also freaked out when bioethics were suddenly by our bedside.

All of these hard conversations between nurses and Pact and doctors and staff and specialists all happened quickly with many questions about this thing or that thing-where is the trach ring located, can we still do the trach with it, one person says yes, one says no, ENT says this-etc. We were blown away to have bioethics there, suddenly at her bedside, unannounced. We weren't sure how to read him...was he for us? Against us? Did he think we grasped the situation? Did he think we were simply naiive and in denial? Did he think we're helping Chloe or hurting her? Did he think we're prolonging life or prolonging death? We wrestled all day with these questions after his visit and sharing Chloe's story with him. We came back to our room at the Ronald McDonald house with massive-sick-to-our-stomach-migraines and tried desperately to sleep them off for 3 hours. Alan bought Mr. Bioethic's book and read it in two nights. I watched youtube lectures he's given. Here's what we learned:

*Bioethics is not necessarily a bad thing. But it's a hard thing.
*There is something called the Grey Zone, especially with babies. The grey zone is when there's no black and white on patient viability. The white or black would be the parents are pushing for unneccessary medical treatments to prolong the inevitable, regardless of pain or suffering to the child. The flip side would be that things are thriving and there is viable life and they continue down the healing path. Then there's grey...

The grey zone is there when there's no defining line. When there's such a question mark of will this baby survive or will it die? Is there hope or is there not? In Chloe's case...there's a HUGE question mark. Has been since we found out about her diagnosis. We know that complete Trisomy 22 ends before 3rd trimester, or stillbirth, or days after birth. It's fatal. We do not know how long Mosaic Trisomy 22 kiddos can live. Some live. Some pass. Some heal. Some do not. There's absolutely no way to truly measure how many cells are affected by the trisomy...if you measure the cells of the blood or tissue, it will give one reading, perhaps 50% of the cells tested from that location are mosaic/duplicated 22. Perhaps testing brain cells shows 78% mosaic. Perhaps testing the cells that make up her heart are only 12%...the list goes on-there's NO way to really test for it. And no way to know what that would prove until she's older.

The grey zone...it's murky. We all agreed on something today though, and that's this: We're fighting for her as long as we see her smiling, holding/gripping our hand, responding to our touch and our talking to her, as long as she is responding to medicine and growing, as long as she's showing she's fighting and she's meeting her mini milestones. We also agreed on this: that her care team including doctors, nurses, pact, specialists all agree that at this point, we are doing nothing to make Chloe suffer. They agree that we move forward one week at a time, one thing at a time. If at any time they feel we're entering a black zone, so to speak, where they believe we're prolonging a means to an end, then we'll sit down and talk and re-evaluate. But for this moment, they agree with us that we move forward, that Chloe isn't in pain or suffering, and that the immediate surgeries in her future, the funo and g tube, and the BT shunt in her heart, are all doable so long as she continues to be stable and grows. I have to be honest-I fully expected the team today to say we're already at the line where we're doing too much. But they didn't say that. They agreed there's a lot Chloe has to face, but that at this moment, she's "critically stable". New term of sorts for her...meaning, she's stable, but things could take a turn again. Meaning she's stable, but things are serious and we just have to see what she can do. But even the team today agreed we're not quite at the point where they believe we're in denail and making the wrong choices...they agreed that we're not exactly to the point yet where we say ok, this is it, we've done everything and it's best to take her home now and be surrounded by those who love her. I was very thankful to hear this as I thought they were already to this point.

The grey zone...the neonatologist today even said with Chloe, she could live a few weeks and then have trouble or get sick from the trach or aspirating is another concern...she could live a month and make it to the BT shunt, but have issues and not make it...she could live 3 months and get to go home and grow for the next heart surgery...or she could live five years...or she could live 20 years. The point being, Chloe's grey. We JUST. DON'T. KNOW. We don't know her future because there's not a long list of statistics dealing with mosaic trisomy 22 cases. We don't know because over 90% of ultrasounds like the one we had would be aborted. We don't know because she keeps proving everyone wrong with each milestone they set for her.

So we continue to proceed, one day at a time, one thing at a time, one week at a time. Chances are most likely that we will outlive our daughter. But we don't know her days. We do not know how many days are ordained for her in His book. So we soak up each one, and hope that she makes it to her surgeries. We hope that she thrives. We hope there are no more setbacks. We pray she'd make it to her first birthday and beyond.

But we also know the brevity of this.

So we take it one day at a time.

We don't give up just yet...even the doctors agreed with that today.

Not yet.

And in the meantime, amidst questions of life or death, questions of medical ethics, researching cases like Chloe's, meeting with specialists...life is moving around us. Fourth of July bbq's are being scheduled amongst friends on facebook. Kids are having summer birthday parties. Friends are laughing over dinners and fire pits. Littles are swimming at the pool and running through sprinklers. The sun is warm, the grass is green and freshly cut. Fire flies are still out. Cicadas are singing the summer lullaby. Friends are gathering on Sunday morning at church. Summer vacations are well under way and pictures are being posted for the facebook world to see. Flip flops and bug spray adorn tan bodies. Grassy mesh beneath naked toes while little ones run wild through the lawn, sweat and humidity curling the infant's hair around its neck while they snooze in their stroller nearby.

But for us, time is standing still. And yet a race all at the same time. It's a race for Chloe to get to 7 plus pounds before her BT shunt surgery, or she can't have it. And she can't live without that shunt. It's a race to see if her PDA stays open that long, now with meds helping. But we also are scared of time moving too fast because we want time with our daughter. We want it to stand still so we can breathe her in. Ever see that ride at the amusement park-the one where you stand against a wall and it spins so fast that g force actually holds you against the wall as the floors drop out below you, so technically you're still, frozen up against the wall but at the same time spinning out of control with nothing below you except the pavement beneath?

That's the ride we're on.