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.