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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Waiting 1A – Week Three – More


Now that we have “moved in” the nurses got together to decorate Little’s IV pole. Imagine the spectacle we create as we walk through the lobby.

I have been thinking for days about the update I “need” to write about last week.  I keep putting it off because it all sounds like complaining. I know, I know — every day can’t be easy,  but God has been so present in every step of this journey and I just couldn’t write until I was able to write with that Truth in the foreground.  I had just about given up and then today happened.  One thing after another happened and what words echoed through my mind? James 4:6A, “But He gives more grace.”

Last week a hard taste of reality determined that we change the way we are counting our wait time.  Technically we have been on the transplant list six weeks, but I had a conversation that made it obvious there was a need to adjust expectations. One of our doctors is on the national heart transplant board (or something like that) and I asked her to help me come up with a rote answer I could give when people ask how long we will be at Children’s.  I mean, let’s be real – there is no way to predict when/if Little will get a heart! The One who holds the future is the One who knows these things, but that’s a lot to explain every time I am asked and people really just want a ballpark figure and not a theology lesson, right?

So, Dr. Melanie told me that the average time on the transplant list for a 1A is 2.5 months.  I asked if that 2.5 months started when we went on the list in early June or when we transferred to 1A a few weeks ago; she said start counting from the change to 1A. The reality that we can plan for another two months at the hospital jolted me this time even though I have been saying those words for weeks. Maybe it was the seriousness with which she spoke and the fact that she didn’t try to sugar coat any portion of the conversation … either way my mind went spiraling and my emotions took a hit.

“But he gives more grace.” We had an inordinate amount of visitors last week. I had so much fun I forgot to take pictures with many of them! I actually called down the hall to get Hart to come back for a photo! Each visitor asked good questions and let me share, but each visitor also made me laugh so that my spiraling could take a break. Little also got a gazillion cheer cards (the volunteers think she must be famous) and it was music to my ears to hear her reading the promises friends quoted. So many Christ followers sharing with her that they are trusting Him to care for her. It was more than we deserved.

And then Little got sick. Each day we did a little physical activity and then I would watch her condition worsen as the hours passed. Finally, on Wednesday, she just plain got sick and couldn’t stop getting sick. The doctor ordered an echocardiogram and an EKG and they took blood to see the levels of her electrolytes.  She finally just wore out and fell asleep.

It was at that moment that I was hit with another hard reality – a fact I had thought of before but jolted me this time in a new way. This might be “it!” Little might not get a heart and I might be sitting in this hospital room watching her die. She was throwing up because we exercised and her heart was so busy getting blood to other places it couldn’t pump enough blood for her stomach to work properly. There’s nothing we can really do about that but wait for things to slow down and the blood to be redirected. If she doesn’t get a new heart this will become more common place and that’ll be it. See Becky spiral.

“But He gives more grace.” This time grace was a weekend at home. Grace was given in a 6’3″ frame. I left the hospital on Friday and drove home in a tired fog but was greeted by my husband who let me emote and then reminded me of all the options that still remain between us and losing Little. Jeremy left for the hospital and then grace was given in the form of a church hymn sing! Then brunch with a dear friend who cried with me and laughed with me while we talked about the serious and the silly! Then grace was Appetizers and Oceans Eight with other sweet friends! And finally a quiet house with a queen size bed!

Then I went to church on Sunday and I sat by myself while my family is spread all over the states; I felt myself slipping. Then we sang “Before the Throne of God Above,” which I used to sing to Little every night as I rocked her before bed. I felt myself falling. And then my dear friend Steve announced that I had resigned from my job as Parish Administrator and proceeded to say so many kind things about me. One might think that was the Father giving more grace but I didn’t see it because I was spiraling.

I spiraled as I drove to the hospital in ridiculous traffic and through the rain! (Sidenote: We see so few storms out here. I tell my sister that Coloradoans driving in the rain resembles Alabamians driving in the snow.) I didn’t sleep through the night last night – every  beep on the monitor setting me off. They weighed Little this AM and she had gained 2 kilos (4 pounds) since yesterday and I found myself incapable of gaining TRUE perspective.

“But He gives more grace.” Today his grace came in a phone call from my sister-in-law, Brooke. Turns out there is a camp going on in Birmingham that’s called “Created For A Purpose.” It’s at a church I used to attend and Brooke had called on a whim thinking the camp was next week and wanting to see if there was any room for KB. Turned out the camp has been full for months but Brooke’s phone rang back moments later and our friend Helen told her that there was room for one girl going into 5th grade and camp started today! What grade is KB going into? You guessed it, 5th! It seems one mom forgot she had signed her daughter up for camp and their family went out-of-town for the week. I just cried as Brooke told me that one day KB will be baking and one day she’ll be sewing and one day they’ll be painting… all while learning about the One who created them for a higher purpose.

AND THEN I got this picture in a text from my friend, Anne:IMG_1921

There’s the immediate joy of seeing my friend wearing a hair net *wink*, but the real joy was seeing her arm around our KB and knowing that this dear friend I have known since  7th grade(!) will be spending time with my daughter all week.  And not only that, Anne’s twin brother, also a dear friend through high school, has a daughter who is actually KB’s counselor! For years I have told the Lord of my desire for my kids to be in Birmingham near family where they can have opportunities to learn about Him surrounded by the families of my friends. Isn’t that JUST what He has done here?

This is where I would normally wrap up this post. There are three examples of spiraling and three opposing paragraphs about His grace – it works.  But, because He’s God, He chose to drive it all home today that “He gives MORE grace” and one more paragraph is necessary!

Little got a stack of mail today and was giddy opening a box, a manilla envelope, and a few letters. I was taken by the manilla envelope and its contents. It turned out to be a letter from my college friend, Rayanne. Click on the pics and read the letter and know that my tears started to flow as I read the first sentence of the second page. I was overwhelmed by the beauty of what Rayanne did and then even more overcome by the Truth that our God is the same yesterday, today, and forever. He made Himself known in 1993 and was faithful to His promises for a college senior with college senior concerns. He is present with this middle age mamma and will continue to be faithful to His promises. It may seem harder to believe because I have more concerns . . . but what do we know to be True? “He gives MORE grace.”


**Another expression of His grace is that friends have set up a GoFundMe page for us. We tried to use integrity to come up with an amount that represents actual items on a spread sheet. (Anyone who knows me knows I have an actual spreadsheet.) People keep asking what they can do and so I’ll include that link here.

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Bubba’s Break

I know that I usually write about Little each weekend but I have to take a minute to record what the middle child did on Tuesday.  The first I heard of the drama is on a phone call from my older brother. He called on FaceTime and he was in “serious directive mode” which automatically triggered my panic button because “serious directive mode” is reserved for times of stress and intensity. My daddy was sick… Andrew told me his travel plans in “serious directive mode.” Something once happened with mom and I heard the news in “serious directive mode.” You can see why this call, five days into my kids’ visit, using this special tone could cause red flags to go up, right?

IMG_1847Turns out that Bubba was on the retaining wall by the driveway and he jumped off. He was wearing flip-flops and when he landed his foot slipped/rolled peeling the skin off his big toe and causing swelling that could be a sprain or break. After explaining the situation, Andrew gave the phone to Bubs so that I could assess how serious I thought everything was. His tears were flowing, his foot was swelling, and my heart was aching; I wanted to be there to hug him tight. My only input was that if they thought X-rays were necessary they should wait until the next day so that they could go to the right place and get a better look with some of the swelling gone down.

Andrew had the perfect suggestion: he called a family doctor friend and asked if he would come take a peek and give an opinion. This doctor had done this type of thing for our family once before. When Little was 6 months old and we were visiting Alabama, my mom and sister had a sort of “intervention” in the driveway and told me they really thought something was wrong with my baby.  I was SO RELIEVED.  I had been convinced something wasn’t right for months, but was worried people would think I was over-reacting and so I hadn’t done anything about it.  Mom called this doctor friend and he blocked out a couple of hours the next day to spend with Little and me.

His response to Andrew’s call these many years later was just as selfless and caring. He drove over and did a quick assessment and said he wouldn’t be surprised if three of the bones in Bub’s foot were fractured. He suggested they take him to the orthopedist the next morning for X-rays and thought they might put my boy in a boot for a while. The next morning Brooke took him in and it happened just as the doctor said: X-rays, three fractured bones, and a boot. Bubba called me on FaceTime and set the camera up so that he could walk around and show me how great he handled the boot. He’s doing great.

My HOSPITAL ROOM PERSPECTIVE: As I was sitting here miles away I had two overwhelming thoughts that eventually became only one: “I hate I can’t be there to hug my kids” and “I am just so thankful.”

  • I am thankful that during these weeks when he can’t swim, Bubba is surrounded by cousins who can help him be creative with his time.
  • I am thankful that he was with Andrew and Brooke and they knew just how to take care of him.
  • I am thankful there are MANY family arms there to hug my kids tight (and Cheelys give good hugs).
  • I am thankful that his injuries weren’t worse.
  • I am thankful KB didn’t follow and hurt her foot too.
  • I am thankful Bubba took the risk and jumped off the wall.  I mean, that’s not really his go-to move and I am kinda thrilled he did it!
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TO DO: Either 1 OR 2 AND 3!


So we have moved into the hospital and are trying to make it somewhat homey for the duration. Jeremy is bringing Little’s duvet down today and clothes have been emptied into drawers. The walls are bare and that’s where you can help to encourage Little during her wait. You could choose between options one and two but we hope EVERYONE will join in on option three!!!

1.  On the hospital website there are “Cheer Cards” that you can send to patients staying here. You can click-through on the link below,  choose your favorite card,  and personalize your message. Then, the volunteers will print the card and hand-deliver it to our room! They ask for the patient’s name… E. Kicklighter.
Click through here: Cheer Cards

2.  Another option is to send a picture or color a picture for the wall. You could send a Bible verse, image of your favorite artwork, or you could click the link below and print and color a heart for Little! You can send them to us at the address below!

Click through here for a heart! (Oh that it were that easy!)
Other coloring options can be found here (or go to Pinterest and go wild!)

Mail your picture here:


3.  Now, whether or not you send a message or picture, we would LOVE for you to send a selfie/snapshot if you are praying for Little. It’ll take just a minute to snap and send and we are going to print them and hang them on a designated space so she can see the faces of those who are bringing her before His throne. You can send your pic through Facebook Messenger or even add it in a comment on the Facebook thread linked to this post. Feel free to text or email the photo as well. And make sure to put names and where you are living too!

By taking a moment to snap a pic and send it on to us, you will help build our kids’ faith and their understanding of the Body of Christ. Thanks for being a part of this journey with us!!!


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Waiting – Week Five – “You Put a Song in My Heart”

I cannot believe another week is gone! Time has flown by this week, filled with to-dos and people – my temperament’s happy mix!

I ended up staying home until Tuesday so that I could do necessary shopping and packing with KB and Bubba. It was so fun to be with them. There was snuggling, reading aloud, the previously mentioned shopping, and even some time alone while they went swimming. Happily, I think Jeremy really loves being at the hospital.  The mixture of quiet, getting to work, serving Little, and helping his family is perfect for HIS temperament. It was a great start to the week with both of us “taking care of business,” as the 1990 song by BTO says.

IMG_3044The first visitor of the week was a teacher Little had in elementary school. Special Ed. teachers make great visitors because they know fun things to bring and make Little engage in each activity. While she was here Little colored a picture, ate a cookie, AND made a necklace!! We love Blythe with our whole hearts and are thankful for the way she continues to love Little even though she has moved on to middle school. She is what Twilight Sparkle from My Little Pony would call a “true, true friend.”

IMG_1551I brought the kids with me to the hospital on Tuesday so they could say good-bye to their sister and the family could all be in the same room for a bit. Everybody did their own thing but my heart was full just being able to put my eyes on all of them at the same time. The nurse took a picture for us. Everyone looks pretty sweet, but one of the kids had just punched another and one had stepped on another’s toes! Never a dull moment with three this close in age! And then there’s the emotion of the fact that I am NOT bending down at all in this picture and seem to be only an inch taller than my kids. Wow. But back to the point… what was the point? Oh, right! My heart was full because we were all in the same room and, in the words of Sister Sledge (1979), “We are family.”

IMG_1556Once the family left for home the Summerall family showed up. The Summeralls were in seminary at the same time we were and lived just a few doors down in campus housing. All of our babies were born within 6 months of each other and, even though it has been almost five years since we’ve seen them, they remain dear and treasured friends. They vacationed in Colorado last week and made a point of spending an evening here with us – such a blessing. Kermit went and got dinner with the kids so that Nicole and I could have time alone to chat.  This extrovert was, as the 1985 song by Loverboy says, “lovin’ every minute of it.”


Independence Day in a hospital is QUIET. We donned our red, white, and blue and talked on FaceTime with the family at the local parade. We passed the time until I had to go to the airport to pick up Aunt Brooke and then the happiness really set it. It wasn’t that Aunt Brooke was here to talk with Little for hours, it was just that Aunt Brooke was here. I have found it interesting to watch our Little over these weeks and learn about what motivates her. She doesn’t need a lot of chatting but she does like having her people nearby. Watching her face light up when Brooke walked in was such a joy.  Why wouldn’t she light up? I don’t know if you have met my sister-in-law but, as the Beatles sang in 1977, “to know her is to love her.”

IMG_1561Brooke went to FoCo to help the kids finish packing and brought them back down on Thursday for me to take them all to the airport. It took AN HOUR for them to check one bag and I got a text from Brooke just minutes before 2:00 PM telling me that they were JUST getting into the line at security!!! Their flight was to leave at 2:30 PM!!! I had this moment where I prayed and considered… here I am trusting the Lord for a heart for my daughter and trusting Him to do miracles for her … would I trust He could get them through the security line and onto their plane in time? I have to say, the plane situation seemed less probable than a heart transplant, but I chose to ask in faith and demonstrate that faith by NOT planning what to do with everyone if they had to wait three days for the next flight. Look at the time on this message from Brooke:

As they sing in Fiddler on the Roof, “Wonder of wonder, miracle of miracles!” Besides getting to the plane on time, the luggage they were told wouldn’t arrive for three days also made it on time! Hallelujah!

IMG_1567Our friend Lola and her daughter Maya came to visit that afternoon with yummy watermelon and berry cobbler. Little had physical therapy while they were here and Maya was sweet enough to do squats with our girl and help with throwing the beach ball they wanted Little to catch. Lola showed Little silly videos of animals and there was laughter and fun, which is great because Cyndi Lauper made sure the world knew that “girls just wanna have fun!”

Some of this I am writing for my own benefit – so that I can look back and remember who was here and how the days were spent. I do know that others come here (or are sent here by my mother) to read about Little’s progress and to find out how to pray. It’s good for me to take moments to focus on this as well, especially when the weeks are slow and it doesn’t seem much is happening.

So, while all of these people were coming and going all week, Little’s body was quietly fighting her C-Diff and on Friday her tests came back negative for the bacteria and we were taken off “precautions” and can finally leave the room! Also behind the scenes, the doctors were sending off blood to continue testing for antibodies that will help them assess Little’s compatibility with heart offers. AND this week we did four days of PT and each day Little persevered and did a great job.

So she LOOKS well and her body is better than it was two weeks ago, having successfully fought the sickness in her gut. Physical exertion has been the reminder that the part of her that’s “broken” can’t be seen. Today we took the elevator down and started laundry together before walking back to the room. When we made the return trip to get the clothes from the dryer, Little got dizzy and I caught her before she fell. When we got back to the room she told me her legs felt asleep and she needed to wake them up! During the week she ended each PT session pale and exhausted; one day she even got sick.  She smiles and laughs but we sing with Christopher Walker, “Give me a new heart, O God!”


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Waiting – Week Four – Mercy

IMG_1532We are back in the Cardiac Progressive Care Unit and attempting to adjust. Little seemed to turn a corner on Saturday and glimpses of her “old self” dominated the day. There was laughter and smiles and sweet conversation over puzzles. It was a joy to see her feeling better and enjoying the events of the day – a mercy.

IMG_6691Monica and Debbie cleaned my house AND left food in the freezer. They picked up medication, played games with the kids, and Debbie even took KB shopping for the shorts she so desperately needed! SUCH a blessing. Friday is Jeremy’s day off so he stayed in FoCo with the kids and sent my friends down for the day.  We went out to lunch and sat and chatted into the night.  Again …. SUCH A BLESSING. His mercy.

The big news for the second half of this week is that Little and I will be living at the hospital until she gets a new heart or goes to be with Jesus. The doctor’s have come to appreciate the nuances of Little’s care and the speed with which her health can deteriorate and so they are uncomfortable with sending her home. As long as we remain in the hospital she can remain a 1A and be monitored in order to minimize surprises. While we would both rather be home with our family it is obvious that this is the best option; the next step He has directed us toward.  Speed and safety =  mercy.

IMG_1530I pressed the doctor and finally got a commitment to this plan on Thursday and with this news came a slowly growing panic about what to do with our other two children. I found myself awake at 1AM typing an email to my brother.  He had mentioned that my sister-in-law and niece were eager to come out and help and so I asked how soon they could arrive. My phone rang during the 7 o’clock hour and Andy and Brooke smiled at me through the screen while offering to come get our children and drive them to Birmingham for a few weeks. That began a 24 hour conversation that ended with plane tickets being bought last night and my children heading to Alabama on Thursday for the month of July!!! A mercy.

There have been a couple great spiritual lessons and conversations that have come out of this crazy week. It seem that last week at youth group KB asked everyone to pray that she and Bubba would get to go to Birmingham this summer.  Bubba responded that he wasn’t even going to pray that because he knew it would never happen.  When I told the kids about the trip on Friday, KB squealed and clapped and said, “I prayed and asked God to please let us go!!” Bubba raised he hands and said, with awe in his voice, “It’s actually happening.” What a joy to see their eyes opened to the power of prayer and their faith encouraged in this way. A mercy.

Another encouraging conversation happened today: there had been multiple comments made about things we haven’t done this summer and I found myself answering, “I had planned for us to do that but Lily’s heart situation took a turn.” After the third or fourth time this came up I realized my tone had taken on a whining flavor and I stopped to regroup and remind us all of what we knew was true. I reminded them of all the times we had talked about us making our plans BUT…  and KB finished, “the Lord directs our steps.” My heart soared and we talked a bit about all the plans we had for this summer and the steps the Lord had chosen for us instead. KB was thrilled that the Lord planned for them to walk all over Alabama this summer and Bubba said, “We can just plan to try to do these other things in 2019.” His mercy.

“The steadfast love of the Lord never ceases.
His mercies never come to an end.
They are new every morning, new every morning.
Great is thy faithfulness, O Lord.
Great is thy faithfulness.”


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Words From Her Mother


Little basically just slept for three days straight. I mean … wouldn’t you? Cardiac arrest? CDiff? Diarrhea and vomiting? Sounds like sleep is a good idea, right?

I will admit – sleep may be the most peaceful thing a person can do but it was so very hard to watch. The term “looked like death” took on a whole new meaning for me and every beep of her monitor sent a jolt through me. I have a crick in my neck from snapping my head to check her heart rate! But she stayed stable all weekend. Her rest allowed me to process and develop a more healthy understanding of just how sick Little is.


When Little wasn’t sleeping she was retching. Her body ran out of things to actually throw up pretty early on and she had a stretch or two when she would retch for an hour+. I only mention this because it led to my loosing my temper for the second time in this journey. “Cost/Benefit Ratio” is a phrase used quite a bit around here and so when they refused to give Little any medication for her nausea because of its potential affect on her heart I understood. When she retched for an hour and a half and couldn’t go to sleep I informed the nurse that the cost/benefit ratio had shifted and they needed to get Little medicine now. To her credit … she did.

They have now taken Little off the two medications that were given to help her heart stabilize.  Her heart has remained steady and the sleepiness and retching has gone away with the meds! Praise the Lord!


The Lord has been gracious throughout this journey and I can only recall a couple of times where the stress has seemed to mount and overwhelm. Understandably, this weekend was one of those times. I could feel the tension in my chest but really knew something had to give when we had a particularly trying nurse on Monday.

It was between 7:30 and 8 AM and Little was still asleep; I was still lounging on my bed/couch. The nurse came in and told me I needed to have the goal of having the shades up by 9:30 AM and that I would need to comb Little’s hair and brush her teeth that day. Instead of it rolling off my back, I was feeling patronized and having to take captive some pretty harsh thoughts. It was evident that stress was reaching a critical level and so I called in back-up (Jeremy) and we swapped places.

images-4It was great to spend a night in my own bed, hug our other two children, and shower without flip-flops! KB slept with me and thought it was hilarious that I sat up ready to help Little with a barf bag in the middle of the night . Tuesday was full with laundry, getting an oil change for the van, taking KB to the doctor, and getting a filling for myself before heading back to Denver for a date night with Jeremy!! Sounds like it wasn’t restful but it was just enough to get me ready to head “back in”.


And how did I get to have a date night with my husband while our family is living in two cities??? Two of my dear friends flew in this week to help with the house and kids.  Monica came in yesterday and stayed with the kids last night. Debbie flew in this morning and Jeremy picked her up at the airport on his way back to Fort Collins. The kids are thrilled to have them here and may be struggling to remember that these are MY friends not theirs!!!IMG_1483.jpg

**I wrote this whole post and left off the biggest news. Little was moved to 1A on the transplant list. She isn’t on machines but the dangerous developments of the weekend allowed for her to be made top priority as an “exception”. Praise the Lord for this and how it may speed up the process of being chosen for transplant.  His will be done.

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