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

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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Week One – At 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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Check 2 – And Away We Go

The list is complete! All the boxes have been checked. The EP gals came by and we are ready to go!! Little has her pump all hooked up! We are waiting on a little red wagon and then we are in the road.

Didn’t realize how much I wanted to go until they said we could and my heart reacted. It has been a long two weeks.

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