Holding the rope

We would chant it to each other at the end of a particularly hard or worrisome day. Heart surgery this spring, or early summer. Hand surgery early fall. By the holidays next year, coast clear. Breathe deep. Marathon complete. We would have survived those pivotal first months, the first year, the major operation with two kids whose lives we knew hung delicately in balance. We would have made it through the scary, risky, dark part of the forest – not completely, not ever, out of the woods, but at least to the part of the woods where the sun breaks in and bunnies even dare to frolic.

We had been through one open heart surgery. One heart stilled and put on bypass. One post-operative recovery period – of body, and more difficultly, of emotions. We were in no way looking forward to going back. Doing the dance again. Especially with a much younger child. But we knew we had to do it sometime. And having that sometime behind us, in the rearview mirror, was something we looked forward to.

It felt like we were holding our breath – getting one kid through surgery, getting another baby (one cold away from being life-flighted to the hospital) through cold and flu season. Life stripped down to the necessary, life with three young kids cooped up in the house. Friends well aware of the dangers, who graciously and protectively stay away at the slightest hint or possibility of illness. We can do this. We just have to make it to next fall. We can see the finish line. You can keep running when you see the finish line.

We headed into spring appointments, emerging from the cocoon of winter, of stay away unless you’re arriving on a chopper. We were mentally prepared to start the ball rolling toward surgery. We knew Shiloh wasn’t doing terrific. We knew we weren’t headed for Bella reports of “She’s surpassing all expectations! She doesn’t really need us!” Shiloh clearly exerts so much more effort than Bella just to breathe. She’s dependent on diuretics – with breathing that visibly worsens as a dose wears off. She’s significantly behind developmentally in gross motor skills, largely because she cannot tolerate tummy time.  Her well-being seems to be a tender, delicate balance that by the Lord’s mercy has not been tipped askew by illness.

Her cardiologist at the latest appointment described her general state of health as “tenuous.” That description, while not welcome, was not surprising.

We hoped a repaired heart would be the winning ticket, the get out of jail card, the piece that moves our girl from tenuous to stable. That moves a cold from life-threatening to obnoxious. Bring on the hospital trauma if it will lead us off the tenuous tightrope.

We sat in the room with the pulmonologist, a brilliant doctor whom we had had no need to see with Bella during her first year of life, staring at a side-by-side comparison of our two girls’ chest x-rays. The difference was immediately apparent even to our medically untrained eyes. There’s a reason we watch Shiloh simply fight to breathe each day, while Bella at this age fought to learn to crawl, to pull up, to do all the other developmentally appropriate activities. The pulmonologist confirmed what we had long suspected – she won’t tolerate tummy time, because tummy time suffocates her. With her small ribcage, all her organs are pressed down. She breathes from her belly. Put all of her weight on her belly, those organs get pushed up and into her diaphragm, making it extraordinarily difficult to breathe.

Discussions continued on, about pulse-ox spot checks at home during wake time and sleep time, about the possibility of a sleep study, about whether or not she would benefit from being on oxygen part of the day, about where her sats are and whether those will allow for growth, about the dance between cardiology and pulmonology. And finally about the one question that was burning on our minds heading into the appointment.

We knew some EVC kids simply don’t have the room in their ribcage they need. And consequently, some undergo a rib expansion surgery – a very rare procedure perfected by very few medical facilities. We were hoping to be reassured that this would not likely be a necessity for Shiloh. Instead, we were told at this point it looks like a 50/50 chance she’ll need the procedure. It’s a procedure not done in Seattle, one we’d have to travel for. And the leading physician who performs it is currently fighting his own battle against cancer.

“But at the end of the day, we just have to see how she grows.”

That prayer for a rib cage to grow? Whispered so often while carrying her inside me? We’re still praying that prayer. We plead with you to keep praying that prayer.

We headed from that heavy appointment with the pulmonologist to our appointment with our cardiologist. Me, desperately fighting back tears. My husband asked me for my thoughts. I tell him, “Later. I don’t want to break down yet.” I do that self-preservation move, point my eyes to the ceiling, pout my lower lip and blow up toward my eyes, furiously trying to dry the tears that are rebelliously trying to form.

You see, I’m a worst case scenario imaginer. I like to think of things going as poorly as possible, in hopes that worst case I’ll be prepared, best case I get pleasantly surprised and reassured. I had imagined the doctor saying Shiloh might need help, perhaps surgical help. I imagined it all the while hoping to be relieved the fear, relieved the worry, given permission to kiss that worst case imagination scenario goodbye, put it to rest.

That didn’t happen.

And so I walked into the next appointment repeating the mantra in my head over and over and over, “Don’t cry, don’t cry, don’t cry. Save it for the car.”

We waited a long time for our cardiologist. Waited, because amazing doctor that she is, she was having a long conversation with the pulmonogist before coming to talk to us. She’s all about collaboration. Gathering as much information as possible to make the best decision possible. She had been in close contact with a doctor across the country, the author of a study on cardiac care of EVC kids, probably one of the only doctors who has cared for more than a hundred EVC patients. She came with forms for us to sign, allowing her to pass along echoes, and x-rays, and test results for even more detailed consultation.

We love our cardiologist.

The pulmonologist had been a fire hose. Hard to swallow, overwhelming. Immediately, the water pressure went down in talking to this doctor that knows us, knows our family. Cares for us as a family. She reassures us, it was the other doctor’s first time seeing Shiloh. I don’t think things are quite as bad as he made it seem. Yes, she’s working hard. Yes, her health is tenuous. By all means yes. But if anything? She is doing the same, or a little better than in the fall. She’s not getting worse. That’s huge. Her heart, her broken heart, is not dramatically worsening. We’re doing ok.

Breathe in.

But surgery. She explains how a cardiologist’s natural intuition would be to operate. Get one factor off the table for Shiloh. One thing fixed that we can fix, in hopes that harder things to fix would be improved. Most kids they see? Things aren’t going to get better, they’re only going to get worse, so you might as well go ahead and do the repair.

However, what the doctors in Pennsylvania have discovered, is EVC kids go against this intuition. They do often get better, not worse. In particular, their lungs’ ability to successfully go through surgery and come off the ventilator vastly improves with age. Consequently, if surgery can be postponed, held off, deterred until the child is at least two years old, the success of surgery, of a type of recovery we saw with Bella, is greatly increased.

And so the clear conclusion. Especially with her small rib cage. With her lungs that work so hard. The longer we can postpone surgery, the better.

And in the meantime, the tightrope. The keeping her healthy, keeping her growing – with a broken heart and too small lungs. Help the lungs out by flooding them with oxygen, and you tax the heart even more, pushing her further into heart failure. It’s finding a sweet spot with medication, sats, caloric intake all in the right balance to keep her growing for the next year, year and a half.

And just like that. The finish line we saw? We were straining for, surviving for? The race official told us it’s actually another fifteen miles down the road. And all I want to do is collapse by the side of the road and say, nope. Can’t do it. Can’t run that far. Can’t you tell I’m already out of breath?

Another winter. Another cold and flu season to survive. Bella was going to start preschool, but it now appears the prudent thing will be to keep her home, keep her away from the germs she has yet to have a chance to develop immunity against. The cost to her – our bright eyed, extroverted, live life loud ready to learn girl – that alone makes me want to weep. It’s just preschool. In the grand scheme of life a blip, an easy thing to sacrifice for the well-being of her sister. But at the moment it feels a heavy cost.

We’re tired. We’re tired of tenuous. We’re tired of worry.

In my vague recollection of watching Survivor back in my high school days, I can picture one contest where contestants had to hold onto a rope with weights attached to it. If they released the rope at all, the weights would drop and they would be out of the competition. It wasn’t an obscene amount of weight, and the task at first was easy for all. But as the time dragged on, it became harder and harder to hold onto that tension in the rope. Muscles shook, bodies ached.

If I’m honest, my muscles are beginning to shake. And I know, I’ve got to give up some of the tension on the rope. There’s some tension I must hold. I do have to be observant, I do have to watch respiratory patterns, reactions to medication, pace and quantity and frequency of feedings. There is attentiveness that is required. But the majority of the weight? Comes from fear. Comes from worry. Comes from trying to work out all the scenarios and how as a family we possibly get through them.

And that weight? I can hear Jesus, see him reach out his hand…”Give it to me. You don’t have to hold on to it.”

But it is oh so very hard to let go of.

Today? Today I headed in for a weight check, a weight check needed before Shiloh’s final shot of RSV protection of the season. I could feel the tension in my shoulders as I lowered my daughter on the scale, desperately wishing for a good number. Growth. We need growth. Of all things that’s the one thing that stuck out from that long exhausting day of appointments.

The number flashed up, and my eyes shot to the ceiling. No tears, no tears, no tears. Three weeks time, a couple ounces lost. Not the direction we want.

Shiloh and I head to Costco afterward, me eyes up every few minutes while those passing by coo and delight in the baby perched in the seat of the cart, “Oh what a doll! Look at those cheeks!” And the word pulses through my mind, tenuous, tenuous, you don’t even know how tenuous this little life is…

Home to shoot an email off to the cardiologist. A report of the number I’d much rather ignore, pretend it doesn’t exist.

And the gentle whisper, “Let me take your fear.”

I’d love to tell you I responded wholeheartedly to the offer. That awash with peace I then proceeded through my day with my skip back in my step.

Instead? For most of the day I’ve clutched fear to my chest, acted and believed and felt like I held the strings of my daughter’s fate in my hands.

And so it is on a day like today that I am grateful for the gentleness of my Lord. For the lover of Peters – the lover of those that fear and run and need to be sought after. The lover of those that need to be found on a beach, holding desperately onto a line, arms shaking. That’s my Jesus. That’s the lover of my broken and weary soul. And that’s the hope of my…and my daughter’s…tomorrows.