Post-Op 2.4

The arrival of August means the arrival of my new planner and I want to use this new feature I added to help me remember God’s faithfulness throughout the next year.  At the top of each two-page spread is this square where I can spend time recalling what I am thankful for from that week. We’ll see how long it lasts, but after two weeks I am at 100% and I’ll rejoice in even that small victory.

IMG_2086Let’s take a moment to recall that we were discharged from the hospital on Thursday, August 2 at noon. As Little would say, “It was so nice.” Friday afternoon Little’s arm began to swell, Saturday at noon she had a fever, and Saturday by 2:00 PM we were back in the emergency room with questions about rejection and a swollen/painful arm. This picture shows it as it first began to swell, but by Saturday night her entire forearm was red, hot, and twice it’s normal size. Tests showed no change in heart function and blood cultures showed no growth, so it was decided that the infection was, in fact, limited to her arm. After two days of antibiotics and great improvement we were discharged once again.

How did I see God’s provision in that little escapade? Well, Marlice just “happened” to still be here with Bubba and KB and so we were able to head straight to Children’s with no drama. So thankful for Marlice’s visit with us. She brought laughter and fun as the children transitioned back to home and lightened the load on more than one occasion.

This first week out of the hospital post-transplant has been anything but normal. Little’s appetite is, well, … little. Between the weeks of Cdiff and the twelve medications that all include nausea and vomiting as possible side effects, her tummy is a bit sensitive. We have been trying to learn just how much she can eat and when to be okay with her not eating. We have decided milk is just not an option in this season and we have had three sick-free days. Fingers crossed for three more!!

We’ve been learning about eating habits and building new habits that involve medications. I got a fancy and fun pill box to help and a new app on my phone for an auditory reminder. So far doses have changed both Monday and Thursday because that’s the day they test the levels in her blood and she hasn’t met her goal yet. Soon things will even out and we’ll be able to find more of a rhythm. Some of the medications will fall off; the first to leave us finishes tomorrow!

Physical Therapy will be a regular part of our life here. Little went twice this week. The first day she worked super hard and by the afternoon her legs were giving out as she walked. Emily, the PT, took things a little easier during the second session of therapy.

We had our first follow-up clinic visit on Thursday morning and Little got a double thumbs up from the nurse practitioner and the cardiologist. They gave us permission to drive home for the afternoon so that I could train the woman hired to do my previous job. Little got to spend the afternoon at home with the family and even got to see a couple friends that stopped by when they heard she was around. I walked Mindy through the job ins and outs and then grabbed my family and we had dinner ALL TOGETHER for the first time in MONTHS.

img_2134-e1534010964269.jpgOverall it has been a nice week. I am seeing more glimpses of Little’s personality each day and there has been laughter and smiles – so good for my own heart. I am learning when to let her rest and when to push her to move. She has a new fear of being alone that seems to have come from the time in the hospital and the trauma experienced there – another opportunity for me demonstrate compassion and patience. After being “on-call” all day all week, it has been a blessing to sit and chat with my dear friend Claire who came to visit.

Logistical updates: We have an apartment and will move in on Monday!!! I think I already wrote about the Cardiology Department’s apartment. I have been holding it with an open hand knowing that life changes in a moment, BUT it looks like it’s empty and clean and will be ready for us Monday morning. Our time at the Ronald McDonald House has been a blessing. On most days there are meals provided by people from all over the city. There have been therapy dogs on multiples days too!! Little’s immuno-suppression has kept us from using the tickets to the Rockies games and the Broncos game tonight, but I am astonished by the opportunities provided by generous people caring for those in a time of hardship.

Things to pray for:
1. Dwayne’s continued adjustment to his new home in Little.
2. Little’s health – able to eat, no more vomiting, strength, no sicknesses that could trigger rejection!
3. We are working to figure out Little’s schooling situation now that we are post transplant and know the need. There are many details that need to come together.
4. Wisdom for me as I parent Little in this unique set of circumstances.
5. Wisdom for Jeremy as he parents two others in their unique set of circumstances.
6. I would trust and lean into my Heavenly Father.

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Post-Op List


The past few days have been crazy with me sitting and watching one tube after another being disconnected from Little. She went from having 14 pumps running at once to nothing at all over the course of four days. It’s astonishing. And now we have been discharged. I am overwhelmed with thoughts so I’m going to make a list …. I know the Bible says that Laughter is a good medicine but I would argue that making lists runs a close second!!

1—We took Little to the emergency room for the first time on February 24 and she was discharged, post transplant, five months and nine days later.  Looking at the calendar, over 50% of those 5 months were spent IN the hospital. When it came time to be discharged this week I found myself battling between rejoicing and mourning. Little and I have been relating to many of the doctors and nurses consistently over these months and it is hard to think we won’t be seeing them regularly in the future. “C”, “M” and several other nurses are getting married this fall and it has been fun hearing about their plans and parties. “S” trains horses and a foal was born and weaned during our experience. “N” just dyed her hair and what was meant to be silver turned out green . . . I hate I won’t see how that turns out!!

It has been interesting to see how some things which may seem common-sensical to the un-traumatized mind have snuck up on me. Of course we were going to have to say goodbye to hospital staff but I didn’t really realize it until the time came. This seems to be one way the Lord “provided a way of escape”  so that I can endure and not be “tempted beyond what I can bear.” When you are rejoicing over your daughter’s new heart you have less time to mourn over lost relationships … you still mourn but it’s tempered by the joy.

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2—Little was discharged Thursday and when we walked out of the Cardiac Progressive Care Unit (CPCU) she said, “Look! I’m walking!! I’m not as wobbly anymore!”  As we got out of the elevator on the first floor she exclaimed, “Here I am! I haven’t been on the first floor in YEARS! I mean AGES!” While we were waiting for Jeremy to bring the car around she quietly said to herself, “It is just so nice to be in the sunshine.” And then as we drove down the road she said, “I just love driving and looking out the window.”

img_2073.jpg3—Our friend Marlice is here for a few days.  She made plans to come and help way back before we knew what would be happening at this stage of life and her visit has probably looked very different from what she anticipated. She spent one night at the hospital with Little so that we could be a the RMH with KB and Bubba. She has taken KB shopping and listened to KB talk and shopped for groceries and listened to KB talk. Marlice kept our kids for a couple of years in St. Louis and it has been a joy to see the lovely woman she has grown into; joy upon joy.

IMG_20814—We are presently living at the Ronald McDonald House (RMH) but we have an apartment to move into next week. The cardiology department at Children’s was gifted one apartment on the backside of campus and it “just happens” to be coming available when we need it! The department reps met, discussed, and decided to offer it to us so that our family could all stay together when necessary. We didn’t even know this apartment existed and we are overwhelmed by how the Lord has provided for us once again.  NOT surprised that He did…just blown away by how!

5—We left the hospital with twelve medications that Little has to take so that her body won’t reject Dwayne and won’t contract specific viruses, etc. Many of these will taper off over the next three months, but for now it is a bit overwhelming. Two of the meds (immune-suppressing) have to be given at the same time every day and night and I see a new watch with multiple alarms in my near/immediate future.

img_2064-e1533355828566.jpg6—So many people have been so kind and generous to our family. From crazy socks to People magazines, to a stuffed Alaskan moose, a battery operated candle (perfect for the hospital), gift cards, lip balm and more. I shed tears with every package and wonder how my heart can feel so full at such a time as this.

7—School supply shopping is looking a bit different for us this year and I am sad about missing out!  KB’s teacher is buying all their supplies and we are just writing her a check and Little won’t be going to school for another couple of months and she uses an adjusted list anyway. Bubba’s supplies are being provided by the mentoring program he is a part of. WHAT??? So I went out and bought three $.25 one-subject notebooks and new “potty post-its” just because I could.  #iloveschoolsupplies

I’ll stop here for now.  I just don’t want to forget even the littlest thing during this crazy time in our lives … like how I am typing in the dark because I am sharing one room with my daughter who falls asleep by 8:30 PM! These entries are my journal, but even more, my own personal Ebenezer! Cue lyrics:

Come, Thou Fount of Every Blessing
Come, Thou fount of every blessing,
Tune my heart to sing Thy grace;
Streams of mercy, never-ceasing,
Call for songs of loudest praise.
Teach me some melodious sonnet
Sung by flaming tongues above
Praise the mount, I’m fixed upon it
Mount of Thy redeeming love.

Here I raise my Ebenezer,
Hither by Thy help I’ve come;
And I hope, by Thy good pleasure,
Safely to arrive at home.
Jesus sought me when a stranger,
Wandering from the fold of God;
He, to rescue me from danger,
Interposed His precious blood.

Oh, to grace how great a debtor
Daily I’m constrained to be;
Let thy goodness like a fetter
Bind my wandering heart to Thee:
Prone to wander, Lord, I feel it;
Prone to leave the God I love.
Here’s my heart, oh, take and seal it,
Seal it for Thy courts above.

By: Robert Robinson, 1735-90

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No More Waiting – Amazing

The Lord has done great things for us, and we are filled with joy.” Psalm 126:11

It’s funny to sit down to type up the events of the past few days because every stage was “steady as she goes” and every minute was surreal. Every step was laced with peace and hesitancy. Our minds are having a hard time grasping that one week ago our Little’s heart stopped five times in one day and this week her heart is pumping with such ferocity that you can see her chest rising and falling. It is truly amazing.

The beginning of this phase of our journey found me sitting down to get some work done in the CICU family lounge. Jeremy and our Coordinator came walking in with funny looks on their faces and I had just enough time to get nervous before they announced in unison that we had an offer! SO MANY EMOTIONS all at once and quite a few intense thoughts pounding through my brain! Little had been so sick they hadn’t been sure they would accept if an offer were made. The donor’s family would have just heard such devastating news of their own. What do we do first? Should I put my computer back away? Jeremy steadily explained that Little would be getting a CAT scan in four hours to check and make sure her colon and brain were well and then the transplant decision would be made. It was exciting but there was a hesitancy because the answer could be no. I sat down and did the work I was planning to do – steady as she goes.

They took Little down for the scan at 4:45 PM.  She was so sick that they didn’t need to give her medicine to help her stay still! It had become obvious to me that each day her heart was getting worse and worse and there was an unexplainable peace as she went to radiology – THIS was His perfect time for Little.  It was going to be time for her to go be with Him or time for her to get a heart. It was surreal. I mean, we went downstairs to get some dinner and the phone rang while Jeremy was standing at the salad bar. Dr. A told Jeremy that the scan looked great, we were going to accept the offer and the operating room had been scheduled for 4:00 AM. We paid for our food and walked over to a table, our heads shaking the entire way.  We were thrilled … amazed … hesitant.

Just because we accepted the offer it didn’t mean Little would get the heart. They had to go get it and check it and they could reject it all the way up until the moment it was supposed to be sewn in.

What did we do next? We called all of our family and told them the news! We went upstairs and kissed Little goodnight! We went to the RMH and went to bed! That’s right! We slept from 9—12 PM and then returned to the hospital at 1 AM to give Little the news and make sure we didn’t miss anything.

I am sure that anyone I tell this story will be wondering what Little said when she found out about her new heart. I think they will be disappointed, but will better understand how sick she was at the time. She had her last episode of vfib on Wednesday night and had been sedated through Sunday. During that time we had stayed away because the sound of our voices made her blood pressure go up and she would start to cough and then there was risk to her sick heart. She had been awake one day but we had only made short visits because of that same response/risk. When we came in to give her the big news we found out that she had yet to sleep a wink that night and when she saw us arrive it had the opposite effect this time – she relaxed and snuggled down to go to sleep.

We went in and leaned over her and said, “Little, before you fall asleep we want you to know that we think they have found your new heart.”  Her head popped up and her eyes got big and she said, “Did they really?” We smiled and let her know that we think so and so we were going to get her ready for surgery and get her sleeping, but we won’t know until after she’s asleep if it’s the right one. She said, “Okay” and snuggled back down and fell asleep – “Steady as she goes!”

I think my favorite moment between then and surgery happened just before they took her away. Our pastor had arrived to pray with us, which he did, and then he read the verse that Little has been calling “her verse” since Easter. Ezekiel 36:26, “And I will give you a new heart, and a new spirit I will put within you. And I will remove the heart of stone from your flesh and give you a heart of flesh.” As he read it Little’s head popped up for the first time and she said, “Who is reading that?” I stepped over to her and said, “That’s Mr. Hoskins. Did you hear him reading your verse?” He stepped into her line of sight as she was talking and it went like this, “I did hear him – heeeeeeeeeey!” Her eyes lit up and she half-smiled before putting her head back down and shutting her eyes again.

They took her back to the OR later than planned and we went to the waiting room to … wait, of course, and to field phone calls in-between updates from the nurse:

  • “We have her cleaned up and ready – we are just waiting for the surgeon.”
    • “Hey Andy. They just took her back. It should take 6 hours -ish.”
  • “She is open and ready – we are just waiting for the delivery.”
    • “Hey Mom. We just watched them walk by with a cooler. It’s here. We’ll know in a bit if they plan to accept it.
  • “Her old heart is out and she is on the bypass machine.”
    • “Hey Anna. Oh, my baby girl is on a table with no heart at the moment.”
  • “They have just a couple more sutures but her new heart is already trying to beat on it’s own!”
  • “It’s done! She looks great! They are closing up the incision.”
    • Text to Family, “Done.”

We weren’t allowed to go back and see her for several hours.  Her blood pressure was all over the place and they needed to get her settled in her room and everything in place to help get that under control.  When we were allowed back they gave us a stethoscope to listen to her heart and that is when I finally cried. It was so loud and strong and there was such relief and gratefulness mixed with such agony and sadness.

They told us they expected her to be asleep for a day or so and neither Jeremy or I wanted the anxiety of watching them fight with her blood pressure and so we went to our room and went to bed. Turns out she woke up before we did and we arrived at the hospital the next morning to find the breathing tube gone and her sitting up in bed playing with the iPad!!!!!!!

IMG_2010The Lord has done great things for us, and we are filled with joy.” Psalm 126:11
Little facts to remember:

  • Her sick heart was gray and done. They said it just laid flat when they took it out. The Lord sustained her until the perfect time.
  • They don’t tell us about he donor and that is by design. I don’t think I will ever look at our girl without thinking of this mystery person/family and it is better that there isn’t a lot of information to go with that.
  • Her new heart is BIG. The Lord used “Jabba the Heart” (Little’s sick heart) to make space in her chest cavity for “Dwayne” (Little’s healthy heart). He knew her donor and He knew what she would need and He made a way. The heart has been adjusting to it’s new home and will continue to do so. For now her organs are getting a LOT of blood flow where there had been very little. Her feet are actually warm and you can see the blood in her veins.
  • When she woke up she asked for Root Beer.


What now?
I am a bit nervous that folks will stop praying and we need prayer now as much as ever. They say that the transplant is not a cure – you are trading one chronic illness for another. Next week we begin discharge education and we will learn about the medications Little will take to help her body not reject “Dwayne”. There are foods she can’t eat and foods that will be important for her to eat. She’ll be completely immuno-supressed and we’ll need to learn what that means for her and our family and how we live. We pray that Little doesn’t reject “Dwayne” and that Jeremy and I can retain all the information they throw at us next week.

I am struggling more with anxiety now than I did pre-op. I’m realizing that while I was saying “My hope is YOU alone” I was putting quite a bit of hope in that new heart. The Lord has taken that out of the equation and there is nothing left to hope in but Him. I pray that I will trust Him – He is obviously trustworthy.

We have to stay in Denver for three months once discharged and so our attention now turns to making arrangements for that. The RMH will only let you have two children … we have three … and so we are making arrangements for an apartment so the family can be together more easily and often. We are praying for those details to fall into place.

IMG_2029KB and Bubba are in KY with my Uncle’s family now and will return next week. We pray that they have a good time, are safe, and get home safely.  We are praying for them as they adjust to this new phase of life too. I pray that this will build compassion and flexibility instead of bitterness and frustration.

We long to walk in a way worthy of Him. We are thankful for those who have gone before us and lived lives worth emulating – none of them have had these exact circumstances but that’s why we live by principles derived from Truth. We are thankful for those who are praying for us as we navigate this amazing road to which He has called us. And so thankful for the multitudes who have prayed with us this far. It is humbling to see the Body of Christ at work in such a way … it’s amazing.

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Waiting 1A – Week Four Ending

The breathing tube is out and Little is awake! She is still a bit groggy and is having a hard time getting comfortable due to residual effects of the medication, BUT she is talking and smiling and we couldn’t be more grateful.

She went 24 hours without a fever!!! Jeremy said they put her back on the cooling blanket this afternoon but he didn’t get the entire story behind what was going on. When we walked in this morning, the first thing she said to me was, “I’m hot and a bit pukey.”  So, even without the fever she was feeling warm and was sweating. We’ll just keep praying against the fever.

The second thing Little said to me was, “Are you going to sleep in a sleep room tonight, Mom?” If you remember last week, she does NOT like when I sleep in another room and leave her at the hospital. This has GOT to change moving forward and so we’re adding that to the prayer list. We have a long road ahead of us and the bed at the Ronald McDonald House are really more conducive to a good night sleep than the couches in her room. I thought I would be done with sleep training by now!

Last news for today – quitting my job became more real and I got a bit sad. I sent out some information for the last time and that was a big deal. And then I saw my boss (the pastor) and he mentioned getting the computer from me this week.  I am cleaning it off tonight so that I can get it to him. It makes everything seem so real and it made me sad. Is it silly that leaving your job can make you long for heaven?

My cousin-in-law (is that a thing?) sent this song to me today and I just LOVED the lyrics! With ALL the paragraphs above in mind, what an incredible reminder this is of the Truth we believe:

“Sovereign Over Us”
There is strength within the sorrow
There is beauty in our tears
And You meet us in our mourning
With a love that casts out fear
You are working in our waiting
You’re sanctifying us
When beyond our understanding
You’re teaching us to trust.

Your plans are still to prosper
You have not forgotten us
You’re with us in the fire and the flood
You’re faithful forever
Perfect in love
You are sovereign over us

You are wisdom unimagined
Who could understand Your ways
Reigning high above the Heavens
Reaching down in endless grace
You’re the lifter of the lowly
Compassionate and kind
You surround and You uphold me
And Your promises are my delight

Your plans are still to prosper
You have not forgotten us
You’re with us in the fire and the flood
You’re faithful forever
Perfect in love
You are sovereign over us

Even what the enemy means for evil
You turn it for our good
You turn it for our good and for Your glory
Even in the valley, You are faithful
You’re working for our good
You’re working for our good and for Your glory

You’re faithful forever
Perfect in love
You are sovereign over us.

— Aaron Keyes

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Waiting 1A – Week Four – Won’t Stop

IMG_1948A quick update:
Little is stable and has had no arrhythmias for 48 hours! They are decreasing the medication that targets this specific issue and transitioning  to a milder version later today. *We won’t stop praying for an absence of arrhythmias.

She had struggles with low blood pressure on Thursday night but it has stabilized as well and she has come off of the medication targeting that problem. *We won’t stop praying for stable blood pressure. 

Little is still lightly sedated but they have removed two medications that were helping her sleep. There are plans to continue reducing sedation throughout the day and there’s hope to remove the breathing tube either late today or early tomorrow. This will be a hard process. She will be delirious from all the sedation and that will add to the discomfort that already comes with having the tube removed. I am pretty sure I am not strong enough to watch all that and so Jeremy has said he’ll handle it and I will probably wait down the hall or in our room.  *We won’t stop praying for Little and for  her transition off the breathing tube to be smooth and eventless. We’ll pray that she will not be scared or hurt.

The immediate concern at this point is that she still has a fever. None of the cultures they have sent away are growing anything and the antibiotics she has been given should have affected the Cdiff enough that the fever shouldn’t be a response to it. There is concern that something is being missed. We were present during rounds today and were able to share with the doctors that Little’s neurological issues have caused temperature regulation to be an issue her entire life. They were actually excited by this information and decided to use aids to adjust her body temp (cooling blanket, etc.) to see if they might help her to regulate her core temperature. If what’s happening is an actual fever, then this won’t really work but if it’s neurological, this could be key! *We won’t stop praying for answers about Little’s body temperature to be  reconciled. If Little’s fever persists we will pray that the source will be discovered and able to be treated. 

IMG_1968Jeremy and I have checked into the Ronald McDonald House for the time being. The provision this place affords is overwhelming. It’s 2 part dorm life, 1 part hotel life but it is more than I would have hoped for or imagined. Walking through the lobby I just kept thinking how much my kids would love it. *We won’t stop giving thanks for the ways the Lord has provided throughout the journey of the past five months.

SO MANY people have prayed for our Little over the past two days and my heart is full to bursting. Knowing that so many are lifting our daughter before the throne of grace is so encouraging and is having effect. If friends will keep reading and praying then I won’t stop sharing and HE promises He won’t stop answering!

“What a Friend we have in Jesus,
All our sins and griefs to bear!
What a privilege to carry,
Everything to God in prayer!
Oh, what peace we often forfeit,
Oh, what needless pain we bear.
All because we do not carry
Everything to God in prayer!

Have we trials and temptations?
Is there trouble anywhere?
We should never be discouraged;
Take it to the Lord in prayer.
Can we find a friend so faithful,
Who will all our sorrows share?
Jesus knows our every weakness;
Take it to the Lord in prayer.”

—  Joseph Medlicott Scriven

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Waiting 1A – Week Four – Urgent

Tuesday night we went to sleep just like every other night at the hospital. Little snuggled down after taking her Melatonin, I read her a chapter from the book we have been going through, and then I turned off the lights and tiptoed over to my “bed” to read in the semi-darkness. It was a good night. We both slept.

Wednesday morning started like no other morning in the hospital had started. Little was coughing a ton and started throwing up by 5:30 AM. I called Jeremy to let him know that this wasn’t going to be a good day and by 7:00 AM Little had experienced her first cardiac arrest of the day.

She went on to have four more episodes of v-fib (ventricular fibrillation), a.k.a. cardiac arrest, throughout the day with the last being at 7:20 PM. The defibrillator that is built into her pacemaker worked to correct three of the times but once she had to have compressions (think CPR) and once they had to shock her externally. All throughout the day they fought to keep her stable.  They fought over what “next steps” to take. We fought to keep it together.


Bottomline: Little’s heart is WEAK; it’s just done. For now they have her stabilized, intubated, and sedated; they are struggling to keep her fever down. If things take a turn toward the worse the next options are transitional mechanical aides (ECMO and VAD). I am not going to go into all of our thoughts on these options, but trust me there are MANY CONFLICTING THOUGHTS.

We need prayer.

  • Little needs a heart. We have found out that her name has come up on the list for several offers but on most she has been far enough down that someone else took the offer first. Just Tuesday night she was the #1 person on the offer list but the team turned down the heart because it wasn’t a good fit. We are encouraged to know that this is going on behind the scenes and thrilled that the team is committed to her best. We are praying specifically that the Lord would provide the right heart for Little in His perfect timing.
  • We need wisdom. The decisions that loom ahead of us are difficult and gray. We are praying for clarity as we walk and that we would hear the voice of the Lord whispering, “This is the way – walk in it.”
  • We need faith. This is where the rubber meets the road. Will we hold to what we believe or in our sadness falter and allow anger and bitterness to gain a footing? We are praying specifically that the peace that passes understanding will guard our hearts and minds in Christ Jesus.


“Even If”
    “They say it only takes a little faith
    To move a mountain
    Well good thing,
    A little faith is all I have, right now
    But God, when You choose
    To leave mountains unmovable
    Oh give me the strength to be able to sing
    It is well with my soul

    I know You’re able and I know You can
    Save through the fire with Your mighty hand
    But even if You don’t
    My hope is You alone
    I know the sorrow, and I know the hurt
    Would all go away if You’d just say the word
    But even if You don’t
    My hope is You alone.

    You’ve been faithful, You’ve been good
    All of my days
    Jesus, I will cling to You
    Come what may

    ‘Cause I know You’re able
    I know You can
    Save through the fire with Your mighty hand
    But even if You don’t
    My hope is You alone.
    I know the sorrow, and I know the hurt
    Would all go away if You’d just say the word
    But even if You don’t
    My hope is You alone.

    It is well with my soul
    It is well, it is well with my soul.”

— by Mercy Me

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