‘Don’t you know that day follows night, that flood comes after ebb, that spring and summer succeed winter. Hope then! Hope always! For God does not fail you. Don’t you know that your God loves you in all this? Mountains when in darkness are as real as in the day, and God’s love to you is as true to you now as it was in your brightest moments….Come sing in the midst of tribulation. Rejoice even when passing through the furnace. Make the wilderness blossom like a rose! Cause the desert to ring with exalting joys.’

— Charles Spurgeon

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.

Let’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.

Overall 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.

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.”

3—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.

4—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.

6—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