Jeremy came to the hospital on Friday and we went to three different meetings concerning the heart transplant process. What we are doing is a time of evaluation as much as it is time to gather information and so the meeting with a social worker and the hours with the psychologist involved a lot of questions for us and probing into our lives. The first meeting was with a nurse practitioner and was more informational and full of very difficult facts.

In between meetings we would head back to the room and check-in on Little; each visit she look paler. That evening she was real sick and she wouldn’t eat. They had slowly taken her off of the medication Milrinone (helps her heart pump) throughout the day and it became obvious over night that her heart wasn’t pumping hard enough without it. Saturday morning they started the medication again.

This restart of Milrinone was a very important event. This decision signified that Lily’s heart was no longer strong enough to pump on its own. With this decision, the relaxed approach we were taking to “being evaluated so we could potentially join the heart transplant list one day” became a more purposeful and immediate need to be evaluated so that Little’s name can go on the heart transplant list immediately.

We do not know what God has in store for our Little and  we are taking one step at a time; the step for this weekend was for Jeremy and I to swap places. It has been nice to be home in my own bed and to see our other two children. It was great to get to worship with our church family this morning and to eat  outside at the picnic table under blue skies for dinner.

Jeremy has been glad to be at the hospital and to have the freedom to ask all the many questions that are swirling in his head. He’s had some concentrated time to do a little  research and reading; he’s also gotten to hug and kiss on his little girl. I’m thankful Andy  suggested the swap before he left to go back to Birmingham; for some reason his voice made it seem more feasible.

The next step is for me to return to Denver tomorrow morning and then Jeremy and I will have meetings from 9AM—3PM on Tuesday.  The next step then has Lily and I coming  home together on Wednesday. She will have a PICC line and a little bag that carries the Milrinone; from what I understand that is how we will live while we wait for the following step. Please pray for our hearts as we navigate this sad time for our family. Please pray for her heart as we try to help her understand what’s happening without creating fear.

A couple of questions have been asked and I thought I would answer them here. I have told Little that it looks like she needs a new heart but that’s as much as we have explained to her at this point. There will be need to be more conversations over the next few days and prayers for wisdom are appreciated.

Little is done with school for this year even though her brother and sister (the school district) won’t finish until Thursday. If she has a heart transplant during the next school year she will need to have tutoring or homebound teaching as she will be out of school for six weeks.

If we pass the evaluation and Little officially goes on the transplant list, she will go on as a “1B” and they say the average wait is 3 to 6 months. During that time we will be expected to keep our phones on us because a heart could become available at any moment. When they call us we will be asked if we want the heart and if we say yes then we are expected to go straight away.

KB and Bubba are both processing this in different ways. I explained to them both what is happening and, in part, what it means and both of them brought it up today in different ways. While praying over our dinner, Bubba prayed for Little’s heart and asked the Lord for quite a few specific things. This morning KB climbed into bed with me and shared her heart about the whole situation. It’s very dear and very emotional.

So many of you have been kind enough to share how much you wish you could help. Right now it is hard to think of tangible ways … outside of your prayers. It’s been three months and three days since we first took Little to the hospital. On that night in February I never would have thought we would be at this point today. They say the wait for a heart will be at least three months and so it is hard for me to wrap my mind around where we might be and what we could need during that time. Words of encouragement are always welcome so never be shy about commenting below.  I’m going to type the lyrics from one of the songs we sang this morning and hopefully they will be an encouragement to you like they were to me.

:: I Will Praise Him Still
When the morning falls on the farthest hill
I will sing His name, I will praise Him still.
When dark trials come and my heart is filled
With the weight of doubt, I will praise Him, still.

For the Lord, our God, He is strong to save
From the arms of death, from the deepest grave,
And He gave us life in His perfect will,
And by His good grace, I will praise Him still.

The surgery went really well yesterday and now our daughter is the owner of a slightly bigger pacemaker with two wires: one that goes into her atrium and one that threads down into her ventricle. It has a built-in defibrillator that will give a shock to restart her heart if it is ever necessary. After putting in the new pacemaker they took advantage of Little being under anesthesia and ran tests to better determine the overall health of her heart. All the results show that it is weaker now than it was when they did the last catheterization a month ago.

While all those things are true, today was actually a good day. It was my birthday and Little made a point of telling everyone who walked into our room. The funny thing was that extra people walked in the room today because the people who found out went and told others on the cardio myopathy team and they made sure to come by and wish me a happy birthday. It was actually very special and I smiled quite a lot for being in the position we’re in. (The smile only disappeared when Little would decide to tell folks how old I am now!)

The “Pacemaker Duo ” as I like to call them (two young gals who manage Little’s device), came in this morning and brought me a birthday brownie. My sweet friend Holly had a cake delivered to our room… a gorgeous and huge cake! My brother came by. My husband and children called and sang to me. My mom sang. And my timeline on Facebook was filled with kind messages representing relationships from all the seasons of my life; beautiful reminders of how He has loved and cared for me all my years. Really, I don’t know how one could ask for a better birthday in the hospital!

And Little had a good day. The pacers seem to be working well together and now we are in the situation where we are trying to find medication that works well with her body and pacers.

Tomorrow will not be as fun. Jeremy will join me for the day and we will be meeting with several members of the transplant team. Her name is not officially on the transplant list but the team wants to go ahead and start the evaluation process so that when we find ourselves in that situation things can move ahead more quickly. It seems we are not in “if we get there” mode but “when we get there.” It could prove to be a long and emotional day. Prayers would be appreciated … and not just prayers for the emotional aspect but also prayers for wisdom as we hear the facts and have to begin to process and make decisions together. Just because a transplant is an option doesn’t mean we can take for granted that it’s the right option. We want to honor God in all we do and say, which now includes the topic of heart transplant… and who is prepared for that? It’s not like you think ahead and say, “Maybe one day this will be where I am and this is what would honor Jesus. ” Right?

So that’s the latest. We are still in the ICU but will hopefully move to “the floor” later today.

Don’t know if anyone remembers the last two lines I typed here … I’ll remind you, “I am looking forward to 7 days in my planner with no doctors! Maybe we’ll do something fun that I can write about here.” That was Thursday. You might be wondering, “Are you having fun yet?” No. No we are not.

Jeremy works 4/10s and so he is off on Fridays.  Friday has become our date day and we usually try to go out for breakfast or lunch; when there is a movie we want to see we often try to do that. I had gone out on a limb and bought tickets for a movie last week .. I mean we had JUST seen the doctor so we were in the clear, right? Hardly.

As we arrived at the cinema the doctor called left a message asking how Little was doing.  I called back and left a message saying all was well and headed in to the theatre. We made it through the previews before a call came in from Little’s teacher. It turns out she and Lily had been sitting and talking on the swings and Little suddenly fell backward off the swing. She got up saying, “That was weird. I feel a bit dizzy.”

I called the doctor.
We got our money back for the movie.
We picked Little up from school.
We packed our bags and headed back to Denver per the doctors’ orders.
Seven days became two.

This has been the most frustrating visit because of the sheer lack of information/understanding. Weekends at the hospital are so different anyway but we were here for 24 hours before Little even showed another symptom! They had started her on a new medication and four hours after she took it her heart rate dropped and she got sick; nurses came running from everywhere. She stabled out and then at 1AM had another episode. They changed her dosing and she didn’t have another visible symptom until Sunday night!

I just watched five doctors sit in a circle for 30 min at the desks outside our room. Turns out we’re going to be here several more days. They are going to continue to adjust medications for the next two days and watch to see if they can find a sweet spot that way. If the changes work, we could go home Wednesday!! If this medication won’t work then the next step will be to add a second lead to her pacemaker and that is surgery and who knows what the timeline will look like.

We have two more weeks of school here and then things change dramatically in regard to my ability to be here with Little. We covet the prayers of our Church family.

Please pray:
– For healing of Little’s heart. Wouldn’t that create waves here?
If He chooses not to heal her:
– Medications would work to solve the issues with Little’s heart rate.
– Doctors would know when the time is right to go ahead with a second lead.
– Wisdom for us with how to parent during this time.
– Mercy and grace for Jeremy as he balances home/work without me there.
– Bubba and KB to have understanding of what is happening, patience with
the changes, flexibility.
– My mamma’s heart.
– For Jeremy and I to have faith and to trust our maker.