Waiting – Week Three – Shocked

IMG_1455Here we sit at the end of three weeks on the heart transplant list and things have change dramatically from week two. It seems that I had barely posted the last weekly update when I went to weigh Little and found she had gained a pound from the day before.  I am supposed to report such things and so I called the hospital and let the transplant team know.

The next day Little had gained another two pounds and her face had started to look puffy, so I called to let the doctors know. This trend continued and we ended up going a day early  for our weekly check-up at the clinic. Her heart’s inability to pump at full strength was allowing fluid to gather in her body and enough had gathered that the oral medication was no longer absorbing and doing its job. So we were kept for “24-hour observation” and put on IV diuretics. By Wednesday morning Little started feeling better and we enjoyed the time hanging out together (see recent post regarding the dog.) As good as she seemed to feel, Little’s lab results that day came back showing that her kidney function was not getting better and another day of IV diuretics were ordered.

Friday looked very different. It became obvious first thing that Little didn’t feel well. Her coloring was off, she had no interest in eating, no energy, and she was complaining of her stomach hurting. I went down to do a bit of laundry and got a call to come back upstairs; Little had what they thought was a seizure. This experience was enough to get everyone on board that something was truly wrong and they started running tests. First news? C Diff – this increased growth of bad bacteria is caused by antibiotics killing off all the good bacteria in one’s system. Little had antibiotics last month when her second pacemaker was put in and so, two weeks later, we find ourselves dealing with C Diff. This explained her tummy issues and fever.

As the nurse was walking out of our room after explaining those results, I began talking to Little about what I was going to order for dinner. All of a sudden an alarm began to sound and I looked up to see the nurse rushing back in and beginning compressions on Little while yelling orders into the hall.  I checked the monitor and it read a heart rate of 258. I sat down on the couch and began to pray.

As the room filled with more people and the CPR continued, I got up, walked out into the hall, and found a place where I could stand out of the way but still able to see the monitor. Zoey, a familiar nurse came and stood with me. She placed a hand on my arm and told me that she was going to stand with me and I thanked her without taking my eyes off that monitor.

Let me tell you something before I share what happened next:  I remember when I was getting married and was given the advice to take a minute during the ceremony and look each of my bridesmaids in their eyes. I remember thinking that this was a moment in my life that would define so many more and I should make sure to truly SEE it so that I would be more likely to remember details.

For some reason THIS is what crossed my mind as I was standing in the hall watching the 30 medical professionals surrounding my daughter’s bed. For some reason I realized  that this might be a moment in my life that would define so many more and I should make sure to slow down, look, and truly SEE it so that I would be more likely to remember details. As I looked I was touched to see the faces of so many who have cared for us over the past four months; Zoey, Chantal, Liz, Katie, Jess, Claire, Jesse, Elissa, and Bree are the ones I can recall at the moment.  These were people who weren’t just in that room doing their jobs but they were fighting for Little’s life… they CARE for my baby girl. It was such a comforting realization; beauty in the midst of horror.

And then I looked back to the monitor and saw the number I recognized: 90. You could feel the tension break and I remember hearing Zoey sigh, “okay”, then there was laughter.  That’s right! From those surrounding her bed there was laughter. Elissa, the superhero who saved the day, made eye contact with me and said, “She says my hands are too cold” … at that I felt my own hands stop shaking.

Turns out the defibrillator in her pacemaker had to shock her four times before her heart began to beat again. Turns out that when her pacemaker’s data was checked they found out this was the second time that day her heart had been shocked! The other time was mistaken for a seizure.

God, in His goodness, had already worked so that Jeremy and the kids were on their way to the hospital; they arrived about 20 minutes after this all took place. We hugged, we cried, we talked, and Jeremy went to Little’s side. After a couple of hours they returned home and after a couple more I quit crying and finally relaxed enough to rest.

Little spent today sleeping in CICU. Jeremy came back down and spent the day with us and we even had friends come from home to pray and just BE WITH us. After they left we took time to talk through “next step” options that the doctors shared with us and then took turns staring at our sleeping daughter.

And now I am going to go seek out sleep for myself. I’m going to fall asleep singing the following:

When trials come no longer fear
For in the pain our God draws near
To fire a faith worth more than gold
And there His faithfulness is told
And there His faithfulness is told

Within the night I know Your peace
The breath of God brings strength to me
And new each morning mercy flows
As treasures of the darkness grow
As treasures of the darkness grow

I turn to Wisdom not my own
For every battle You have known
My confidence will rest in You
Your love endures Your ways are good
Your love endures Your ways are good

When I am weary with the cost
I see the triumph of the cross
So in it’s shadow I shall run
Till You complete the work begun
Till You complete the work begun

One day all things will be made new
I’ll see the hope You called me to
And in your kingdom paved with gold
I’ll praise your faithfulness of old
I’ll praise your faithfulness of old

Keith & Kristyn Getty
Copyright © 2005 Thankyou Music


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Little Loves Dogs

During our three months of off-and-on stays at the hospital it has become quite normal to see multiple nurses AND doctors standing around Little’s bed with their phones out. They are all showing her pictures of their dogs and answering these questions:

1. What’s your dog’s name?

2. Is your dog a boy or a girl?

3. How old’s your dog?

Some get asked about the breed but most of those she knows on sight. Most visitors offer up a story without her asking.

Her nurse today, Sarah, was so tickled by Little’s obvious passion for the canine crowd that she called down and set up a date with the therapy dog in the building. Turns out dogs aren’t allowed on our floor for various reasons, but Little was allowed to go down and meet Nikko, the seven-year-old male Portuguese Water Dog, in the staff lobby. She happened to be wearing the PERFECT T-shirt.

My sister-in-law called this a “sweet mercy” and she is right. It’s another sweet reminder, in the midst of so much brokenness, that He loves our girl and meets her right where she is.

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From The Gospel Coalition site:

I was going to put a link here but time passes and links get broken and I wanted to remember this OT’s story. It fleshes out something my brother said to me recently: I was commenting on one of the hospital’s staff and Andy softly reminded me to be kind and that it must be difficult for them too. That they were caring for Little and growing in affection for her and I needed to be gracious as we all struggle through this. This article drove his words home.

My Daily Fight at the Hospital

JUNE 18, 2018  | Kelly Mott

What do you call a mom or dad who is now childless? There are words we use, like widow and orphan, to describe others who have lost a family member. But the loss of a child is so uncommon and unexpected that there isn’t an English word to describe it. A couple I know lost their daughter on Easter. In the midst of everyone’s celebration of new life and resurrection, they mourned their unnamed loss.

Their baby girl, Ella, was a dear patient of mine whom I’d worked with off and on since her birth nearly a year and a half prior. I saw her roll over for the first time; I witnessed as she reached for her favorite toy, a pink Oball; I was part of the audience the first time she blew a kiss; I celebrated her progress. In fact, I fought with the other therapists to see her whenever she was admitted. But she had a complex medical situation, so when she contracted an infection, it overwhelmed her delicate body despite her brave fight.

I loved her.

I mourned. I’m still mourning, months later.

Risking Deep Connection

I am a pediatric occupational therapist. I work in a local hospital helping the littlest of patients grow, develop, play, and heal. I massage tight muscles, mobilize swelling, improve endurance, and promote strength. I have the privilege of working with amazing babies and parents in tenuous situations where length of days is not guaranteed.

How do I work in this job surrounded by sick little ones? How do I perform occupational therapy in the hospital setting knowing that some of my patients won’t see adulthood, or even their first birthday? I work in faith. I know that no matter how lengthy a life is, it is full of significance.

Several years ago, I was talking to my parents about the sadness that comes with my job. My dad’s wise response has always stuck with me:

As your father, I dislike your job. I hate seeing you in pain. I wish you weren’t surrounded by such loss, and I want to protect you from these feelings. But as a father, I want you there. If it were my child in that hospital, I would want someone there who cared as much as you do. So, I both want you to quit your job and work there forever.

The fight between self-protection and deep connection is fierce. Some days self-protection wins out. I see signs of imminent doom in certain rooms: poorly trending lab values, sallow coloring, expanding pumps and machines, and I don’t want to get too attached. There were years when I would pull away and not get too close, telling myself I had to separate to continue practicing. But more recently, deep connection has been winning in my heart and actions. This response didn’t come naturally. I had to confront my own lament before I could learn to view it as an honor to sit with families at terribly tender times—to provide healing and hope. And to grieve with them.

Hope and Love amid Pain

Ella was well loved, a tiny VIP in our hospital. Her memorial service was so crowded there was no place to park. I was mentally prepared for the somber service until I saw the tiny casket and glimpsed Ella’s chubby fingers grasping her pink Oball. It was the toy we’d played with so often in her 17-month-and-three-day life of significance. The toy we used to practice visual tracking, reaching, batting, grasping, and fine motor coordination. The toy I wrote about in my official records of her progress. Suddenly my tears could not be restrained.

Through my tears, I got to hug her crying mom and dad—a real, true, strong, meaningful hug. That hug said that I thought Ella was delightful, and that I really, truly enjoyed her and would miss her. Our physical embrace was the special language of people who had dared to connect to the wonder, joy, and sparkle of Ella’s fragile life.

My job involves serving, showing value, and loving well, especially in times of loss. I don’t believe I could endure this job without my Christian faith. I would be crushed by the weight of lament. I am better at my job when I feel a deep sense of purpose and connection in my relationships with my patients. Braving pain, showing value, and choosing connection are ways I express my faith at work. I show families through my time, actions, compassion, and therapy that their loved one is important, special, valuable, and cared for.

Ella died on Easter, but there is still hope. There is hope in the resurrection. There is hope in hugs that heal. There is hope in the weightiness of deep connection, especially when it is painful. There is hope when we sit in tender spaces full of fears and questions and choose to bravely enter into another’s life and story.

Kelly Mott* works as an occupational therapist in neonatal and pediatric intensive care units. She graduated with a master’s in theology from Reformed Theological Seminary and believes all people are made in the image of God and worthy of care and dignity. She is currently pursuing a doctorate degree in occupational therapy to better serve her patients in the future. [*Note: Due to the sensitivity of her work, “Kelly Mott” is a pseudonym.]

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Waiting – Week Two – Stable

Our Week
It was a good week here – the Lord, in His kindness, peppered our busy schedule with times of rest and relationship. Little got a good report at the clinic on Wednesday and we have spent every day since then trying to balance her diuretics so that she isn’t retaining fluid but isn’t losing too much weight. It’s been a low-key heart week.

I started a study of James this week with a couple of friends. We did an overview of the  book this week and I found great satisfaction in the theme: my Faith in the one true God requires that I live differently. I have peace because I know I am incapable of these works on my own but He enables me to do life in a way pleasing to Him. And there is joy because His blood covers me when I fail. I am really excited about looking at this book in-depth for the first time since college.

We ended the week at the movies. “Our” Orthodontist had a customer appreciation event and treated us all to The Incredibles, popcorn, and soda! We had a lovely time together but I was a bit disappointed with the movie itself. When I attend a Pixar film I expect good fun for the whole family; I didn’t even read up on this one because I made assumptions based on past experience. Well, the intensity of this film was dialed up to eleven (KB hid her eyes more than once), they cursed twice, and took God’s name in vain twice. So, being together as a family = wonderful. The movie = not as Incredible as I’d hoped.

It has taken me several hours to write this because life keeps happening as I type.  Little’s face was all puffy and she was complaining of stomach aches and nausea – these are all bad symptoms and set us all on edge. A little medicine and things have settled back down – I am praying that a good night of sleep tonight will set her up for another good week this week.

Which reminds me … we were given permission to restart Little on her sleep meds at our clinic appointment on Wednesday!!! I squealed with excitement! They started her on a much smaller dose but it has proven to be very effective and she slept until 7:00 AM on Friday! We are so thankful for all who prayed with us for increased sleep.

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Waiting – Week One – A Glance

We have officially been home for a solid week and several people have asked how things are going. It’s good for me to stop and recount what’s gone on so that I’ll have it down the road; my memory is not what it once was!

Little has adjusted well to carrying around her little bag of medication; I have been pleasantly surprised. Her mother, on the other hand, has had a harder time! There are so many little steps that have to be taken when dealing with her medicine and I keep messing it up! There are little clamps that have to be shut before we unhook the tubing and we have to unhook the tubing every time she changes clothes. Once the tubing is hooked back up, one has to re-open the clamps so the medicine can be delivered to her heart. On Monday we went to pick up her siblings from camp and I noticed Little looked pale but I didn’t know why. All of a sudden as we’re standing on a hill with all the other families, her bag started beeping. Panic! Turns out I had forgotten to un-clamp the clamps and she’d been without medicine for an hour. Everything turned out fine and I’d like to say it was the only time this happened all week. Truth is I’ve heard that alarm three times now! Hopefully our second week at home will be much quieter.

A harder adjustment has been the requirement for daily baths because of the PICC line. Little absolutely hates getting baths and this change has added a level of… joy(?) to our week. Added challenge? Two wounds that dictate a large part of her body that is not allowed to be wet! It’s almost a game to try to figure out how to get her clean without too much screaming and with keeping her arm and shoulder dry. Music has helped make the time go more smoothly; the soundtrack from Sing has been a great help.

Lastly, sleeping has been the hardest thing to come by since coming home. The sleep medication that Little has taken for years affects her heart and so they had to take her off of it. When we left the hospital they had not put her on any other sleeping aid and so our first nights home were restless. We had a follow-up clinic visit on Wednesday and I announced to a room full of doctors that their top priority was to figure out how to help my daughter sleep! She had been up at 1:30 AM each morning which meant that I had been up since 1:30 AM and it was not sustainable. It took until Friday for everyone to get on the same page and a prescription to be written.

Now it’s Sunday and I have to tell you, Little is still not sleeping well. It is crazy to think that my daughter needs a new heart and my number one prayer request is that she will sleep! As everyone knows, sleeplessness affects every element of life and it is hard for me to be a good mommy and wife when I’m having such a hard time focusing. And then there’s the whole “remember to un-clip the clip so your daughter gets the medicine she needs to live” thing! I plan to call the doctor first thing tomorrow.
KB and Bubba had a great week at camp. FCA comes together with five churches here in town to do a camp the first week of summer. KB focused on basketball while Bubba played baseball and were both encouraged in their walk with the Lord.

We live down the street from the neighborhood pool and the afternoons have been an opportunity for me to grow (as if I need more of those).  I have had to let KB and Bubba walk to the pool by themselves more than once since I needed to be at home with Little, which has meant many prayers on my part and the opportunity to prove trustworthiness on their part. So far so good.

We have no plans for the rest of the summer and I would covet your prayers for our kids. We had to cancel all travel plans because of the transplant list and I need to think for our weeks together. Also I would appreciate prayers for my motivation to live each day well. I know that sounds dramatic but I find myself sitting, reading a book, and waiting for the next shoe to drop. My house is a mess. I have a to-do list glaring at me from the counter. All three of my children need me to be their mother. Please pray that I’ll be faithful.

And so we’re heading into week two… This week holds three dentist appointments, a home nurse visit, two psychiatrist appointments, and another follow-up trip to Denver. If we make it through next week, I’ll let you know how it goes!

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1B – Listed

Just got the phone call.

Little has officially been list with UNOS as a 1B.

The official wait begins now – June 4, 2018 at 3:15 PM.

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More Than Anything – Natalie Grant

I know if you wanted to you could wave your hand
Spare me this heartache and change your plan
And I know any second you could take my pain away
But even if you don’t I pray

Help me want the Healer more than the healing
Help me want the Savior more than the saving
Help me want the Giver more than the giving
Help me want you Jesus more than anything

You know more than anyone that my flesh is weak
And you know I’d give anything for a remedy
And I’ll ask a thousand more times to set me free today
Oh but even if you don’t I pray

Help me want the Healer more than the healing
Help me want the Savior more than the saving
Help me want the Giver more than the giving
Oh Help me want you Jesus more than anything

When I’m desperate and my hearts overcome
All that I need you’ve already done
When I’m desperate and my hearts overcome
All that I need you’ve already done
Oh Jesus Help me want you more than anything

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