Life of a Pilgrim

Abundant life

“I came that they may have life and have it abundantly.”

I thought I understood this verse. Then I watched my daughter go through a transformative heart surgery. Read More

The July 4th Turn

Way back in August, I left you hanging with Shiloh’s birth story. It was not my intention, but life with three littles got the best of me. On that last account, I left you, Shiloh having just been born, me desperate to be with her. And I did make it to her room in the NICU that night, and after a few moments alone with her and Daddy, the girls came by to meet their sister. I put on a brave face, stuffed my fear for their sake. Next were grandparents, and then a short while after they departed Jenni insisted I head up to the floor to pump, eat and get some much needed sleep.

I had no doubt Jenni was absolutely correct – and yet, letting her wheel me away was one of the most difficult things I’ve ever had to do. In my head I knew the best thing I could do for Shiloh in that moment was to take care of myself, to ensure I could take care of her. And so I was deposited on the postpartum floor. Empty bassinet. A pump instead of a baby to draw milk from me. My husband a floor and a courtyard – seemingly hundreds of miles – away. In that moment it was all too much. Just thinking of that night in that room sends shivers of emotions down my spine. Read More

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. Read More

Cleaning & Control

My house is cleaner than it usually is (please note, I said cleaner, not clean).

I have a confession to make, when much of life – the big things in life, the things I can’t control – is overwhelming and frightening and unknown I clean. And I organize. As if in rebellion of my inability to control that which really matters, I up my control of those things that don’t really matter. And so I clean the crevices that usually get ignored. Organize drawers. Sort through clothes. Purge. It’s a coping strategy. The good news is it’s good for the house. The bad news is it doesn’t fix my heart.

We came home from our Seattle appointments last week and promptly signed up for life flight insurance. This means should a member of our family need to be sent by chopper over to Seattle for urgent medical care, it won’t financially devastate us. The fact that we are in great need of that insurance devastates me.

We sat in a room, cradling our second miraculous bundle of grace, listening to the warning that a single respiratory illness – just your average run of the mill fall and winter sickness – would most likely send that child straight on a chopper and over to the hospital in Seattle.

“She just doesn’t have reserves. She’s already working hard enough to breathe.”

And for – is it the third? fourth? tenth? – time of this journey I find it hard to breathe.

But we know the truth in the statement. We watch her breathe. Cute clothes stripped away revealing a chest with severe retractions that only lessen a bit when sleep comes. We see the effort of each breath, and our eyes meet sharing the unspoken concern and wondering and fear of parents madly in love. She breathes. Without assistance. That is a miracle in and of itself that we thank God for each day. And really, each one of our breaths are tenuous, never guaranteed. I could breathe my last tomorrow. So could you. But the tenuous nature of breath is shown in bold relief in her little body – leading us to plead each day. For more breaths. For less labored breaths.

There is more news in that cardiology office as well. It’s not just her lungs working hard, that little heart, with its missing wall and unique valves, is overworked as well. Its right side already starting to enlarge a bit. And then there’s another piece of anatomy. A persistent left superior vena cava. We all have a right, but to have a left? That is an anomaly. Not a terribly uncommon one, and in most cases not even a danger. It’s an extra vein carrying deoxygenated blood – usually to the correct location, the right side of the heart. But in Shiloh they’re suspicious that this vena cava is dumping into the left side of her heart. Right now, you don’t see the effect of that as much, because with her common atrium, she already has a mixing of blood and lower saturation. However, the problem comes when her heart is repaired – when a wall is built between her left and right atrium. At that point, we do not want deoxygenated blood dumping into the left side of her heart. However, rerouting that blood flow is a tricky procedure, especially when operating on a tiny infant’s heart.

And so we’re left in a difficult position. The doctors are trying to decide whether it’s better to operate this fall. To bolster her heart to help her lungs through the winter. But they really would prefer if that heart were bigger, if she were bigger. If she were to have surgery this fall, they might not be able to repair that LSVC, meaning a second open heart surgery at a later date.

Oh, and have I mentioned I have another daughter? Who is having open heart surgery on October 5th?

The plan with Shiloh right now is watching and consulting. They’re closely watching her weight gain, which despite her rolls is not quite as rapid as they’d like. And thus enter my other full time job night and day – feeding this child as much as she will eat. Our cardiologist is consulting with the head surgeon to get his thoughts on the best way to proceed. When we come over for Bella’s surgery, Shiloh will have another echo. This time they’ll put in an IV with agitated fluid to be able to hopefully see exactly where that vena cava is dumping out. She will also be meeting with the pulmonologist to get a baseline and see if there’s anything we need to be considering to help out those little lungs.

And then we’ll go from there.

And so I clean, organize and purge.

And each morning I get up and I get on the treadmill. And with the pounding of my feet, I attempt to pound out my anxieties. I listen to truth. Piper’s sermons preached two decades ago for such a time as this. I pound in truth, and then I pound out prayers. And then sometimes in the shower afterward heavy hot tears mix in with the water flowing down.

And then the day begins and I try to be faithful with just the next thing. And I wipe bottoms and tables, prepare food, play games, tackle work tasks, and live with the constant refrain in my mind, “There is grace enough for today.” And, “For God has not given us a spirit of fear.”

Because really? The question remains the same regardless of what looms before me.

Do you trust me with your tomorrows? Do you trust that those days have been lovingly ordered, and that regardless of their contents, they can not separate you from me? Do you trust that this life, with all of its brokenness and beauty and heartache and blessing, is not all there is? That the greatest affliction will one day be made to seem light and momentary?

I believe, help me with my unbelief.

Shiloh’s Birth – Part Three

Just tuning in? You might want to read part one and part two of Shiloh’s birth first.

Soon after my water was broken, we bid farewell to our nurse Anna as she came to the end of her shift. We were given an “intermediate” nurse to work with until Jenni came onto shift that evening. Jenni was eagerly waiting at home, having called the floor to tell them that if they had need of anyone to come in early she was more than willing.

Soon after Anna’s departure, the resident returned to check me again. It had been just over an hour and I was hopeful I had progressed a couple centimeters. The epidural was quite effective at the moment, though, so my main labor cues were coming from the high peaks on the monitor. She checked…and announced I was still only at five centimeters. And so we realized that Shiloh…and Jesus…were writing a different story this time around. I texted my dad and said he could bring the girls by when they got up from their naps, since we clearly weren’t going anywhere fast, and joked that Shiloh was waiting to arrive until Jenni returned. Read More

Shiloh’s Birth – Part Two

With cervidil started, and contractions settling into a regular pattern, I grabbed my walking pole with IV’s and monitors and started my pacing of the maternity ward loop. For the first couple times around the block, Jeff joined me, but I soon sent him back to the room for some sleep. He was coming off of two incredibly busy weeks at work, as well as single parenthood and running of the house on his own. The boy was running on near empty, and we had no idea what we were facing in the coming days and weeks.

And so I found myself strolling the loop again and again. At times with our amazing nurse, and dear friend, Jenni, but a lot of times alone. The same loop I had paced countless times in labor with Arabella – that time the majority of the night with our friend and photographer Kristin. This time Kristin was getting a few hours of sleep before heading over to Seattle in the morning to be there for the birth. She had been waiting on the results of the version, but by the time we got Shiloh turned it was too late to head out that night.

With each loop, though, I passed by the vases of red poppies tucked into cases in the wall. The poppies that had brought tears to my eyes when I had first noticed them halfway through the night in labor with Bella. Poppies for our poppy – that visible reminder of the Lord’s presence that showed up again and again during our pregnancy with Arabella. And with each pass this time around it was almost like I could hear the Lord whisper, “I am faithful. I was with you then. I am with you now.”

In the wee hours of the morning, as tiredness started to win its war with me, I let Jenni help me get tucked into bed with numerous pillows to try for a bit of sleep. Contractions were coming regularly enough at this point that cervidil was stopped and the order was put in for pitocin. Jenni said the OB would be in right after the shift change in the morning to check my progress – and while for my sake she hoped she would not be present for the birth when she came on again for the night shift, she would not be disappointed if Shiloh held out for her.

After breakfast the OB came in to check me and I was pleased to find out that I was at four centimeters, even though the pitocin had yet to be started. That was hung and soon after Kristin showed up. Kristin had brought along her friend Anna, who over the next 24 hours would become likely a lifelong friend to us as well. From her experience last time, Kristin knew she would be too tired to drive home safely alone after the birth, and so set about to find a good companion for the journey. Anna, a fellow heart warrior mama, seemed to be the perfect fit – Kristin knew she’d be comfortable with the long hours in the hospital.

Soon after the arrival of Kristin and Anna, my dad showed up with the girls for a morning visit. In this way, this labor was so different from the last. While I had a great amount of peace while laboring with Arabella, I was so focused that I didn’t really want visits from anyone. This time, though, a visit from my two littles was the perfect distraction.

I hugged the girls goodbye with a little bit of tightness in my chest, knowing that all of our lives were about to be changed in the next few hours – I just wasn’t sure in which direction. But I knew things in our family would never quite be the same again.

And then began the laboring and waiting. We swapped life stories with Anna, I paced the room some. Friendships began to be forged, laughter flowed easily, as well as hope as past faithfulness was shared. A bit before lunch one of the anesthesiologists showed up. They were concerned if they didn’t turn my epidural back on soon, the current placement might not be effective. I really didn’t want to have a third epidural placed, but asked if we could wait just a little longer so I could have lunch and also do some “spinning babies” exercises with one of the nurses trained in the method to try to get Shiloh in a bit of a better position. The anesthesiologist agreed and said she’d come back in a couple hours to get the epidural going again.

And so I ordered lunch and set to work on the exercises – which were particularly fun with the labor girdle I had on. I had my last supper, and my nurse Anna (who was amazing as well – and had been hand picked by Jenni) helped get me settled into bed. The epidural was turned back on…without great effect. The anesthesiologist returned to do her test, and soon discovered it wasn’t working at all on my right side. She decided to dump in one more dose of medicine to see if she could get it working on both sides. If that didn’t work, they would have to place it again. The minutes ticked by, and nothing happened on my right side. She came back to check and then said she’d talk to the attending and then come back to place it again. Thankfully, just after that visit things started to go a little numb on my right, so we stuck with that placement.

Soon after the OB returned to check me. I was measuring at a 5 and Shiloh was in a good position, so they decided to go ahead and break my bag of waters. This was another strikingly different experience than what I had with Bella. When they broke Bella’s bag of waters, she was floating so high that there was a large team of doctors, nurses and residents in the room in case we had to rush into an emergency delivery. There was one person on an ultrasound, one resident with her hand you know where feeling to make sure there wasn’t a cord prolapse, a nurse emptying my bladder with a catheter, and the doctor pricking the bag with a long needle and slowly letting the fluid drip out. And that list of participants doesn’t include the large team standing by “just in case.” It was one of the most tense moments of the delivery, and for me one of the scariest moments.

This time around, just one resident came into the room. Throughout the day, there had seemed to be an atmosphere of ease and confidence among the doctors and residents. Unlike last time, we were not constantly asked to recite what was going to happen after birth, and how our baby was expected to be doing. In fact, that wasn’t even discussed once. There was no meeting with the neonatologist, or anyone from the NICU team. Everyone knew we had been here before. They knew that we knew the spectrum of possible outcomes. And yet there was part of me that wanted to say…you do know there’s no guarantee? That this baby may not thrive like Bella did?

But in this moment, the relative ease and peace of the procedure was welcome. The resident did a quick ultrasound to verify Shiloh’s position – which meant my girdle was removed, this time for good – can you see the joy on my face?

Once our girlie’s head down position was confirmed, she pricked the bag, allowing Shiloh to smoothly engage herself in the birth canal. Breaking my water with Bella the last time had sped up labor incredibly – about an hour and a half later she was born, so I expected a similar result once again. The resident, knowing my history, said she’d come back in 45 minutes or so to check where I was at.

To be continued…