Dreaded Post - With A Broken Heart

This is a post I've been dreading for a little while now.  Actually, those first pits of dread and fears came sweeping in upon burying Ellie Kate in 2012.  After that, I was often reminded of a truth I didn't want to believe, face or even realize - the truth that one day, unless a great miracle were to take place - Lucy Belle would also pass away.  Mike and I want to share with you tonight, that Lucy Belle has been placed on Hospice Care.  WE want to tell you because there are MANY layers to this news and to this choice, so I truly hope you will stick out this blog post (even with my inevitably, heavy-handed pen), making sure you get a clear picture of where things stand. 

If you've been following Our Blog, you've noticed that Lucy's been suffering for some time now.  We've run test after test after test, mostly invasive, some in-patient and some outpatient; ALL uncomfortable and even painful for Our Sweet Girl - things we absolutely HATE for her.  We still don't have full answers on bladder/kidney pain nor on the endless, sleepless nights full of screeching and painful cries.  But, there have been comfortable times too, as well as somewhat restful nights.  Lucy's still smiling and still finds joy, still showing interest in the things that she loves like her brother, her doggies, her grandparents, her Daddy, taking walks, swinging and being outside (whenever it's not piercing hot); she still LOVES shopping with mommy, loves being in a pool, her friends and nurses, and being around other kids here at home.  LUCY IS A JOY and lives up to her name, "Beautiful Light"!

The hardest truth that's come to light is that Lucy Belle is declining, or maybe it's NKH progressing; probably BOTH.  Our doctors are aware of this and are actually the ones who've brought it to our attention, although we've known in our hearts that this decline has been taking place.  All of us have noticed the progression of the disease and the level of suffering continues to rise, despite our best efforts on all fronts. 

The MOST important thing to us as Lucy's parents, is to know that she is as pain-free as possible.  After watching Ellie Kate suffer SO greatly with pain her entire short life, we promised ourselves and Our Daughter (all of our children, really) we would do EVERYTHING within our power to keep the pain away, even fighting for them to be pain-free, consistently staying on top of the medical teams until they did what we thought needed to be done in order for Lucy to be comfortable.  It's in this light which we've made the hard decision to place Lucy on Hospice Care. 

Friends, obviously this decision hasn't been made lightly, but after visiting with trusted doctors and nurses, as well as the Pediatric Palliative Care team, we agreed with their decision that Hospice would be the very best way to keep Lucy's pain under control. You see, Hospice isn't only end-of-life care but in fact, can also serve as palliative care.  The Hospice Nurse will be able to deliver whatever meds Lucy might need, whatever time of day or night she might need them.  Also, a special pediatrician will be in charge of Lucy's care now, working closely with Hospice and the Palliative Care Team, meaning she will receive the more personalized treatment she needs - the kind we've been praying AND searching for! This knowledge gives us as parents much hope, solace and satisfaction and we know that no other service could bring this type of care, despite the heaviness of it's name. 

It may bring your heart comfort to know this, as it's brought me much comfort in remembering it . . . this is much how we ended up treating Ellie Kate's first year of life which was spent on hospice as well, and as she continued to thrive and survive despite being on Hospice Care, as she defied the doctors yet still needed close attention, including pain medication and palliative care intervention, it really was the perfect coverage and situation for Ellie Kate.  God orchestrated it all without us even fully understanding it at the time and now, when the choice was brought up to us again with another precious Girl, it wasn't difficult  for us to fully understand and remember it benefits, making it so much easier to make the right decision. 

I know the words sounds so tough, HOSPICE and believe me when I tell you that it's incredibly difficult for me to even udder, much less write to you tonight.  I'm crying now, because I didn't think it would be like this, and even though we've known Lucy's quality of life has deteriorated greatly.  Making these choices are sickening - even WHEN you KNOW it's the right thing, even WHEN it's the second time around.  I didn't know these years would go by so quickly, you guys.  I just didn't know. 

Something bringing us great comfort - something we want you to know -  is that Lucy is STILL FIGHTING and as long as she's still fighting in this life, WE will be fighting for her, every step of the way, just like we did with Ellie Kate. We have no plans of backing down on Lucy's treatment, nor any plans of future treatment at this time.  Also, we trust that in this, you respect us as we make our own decisions based off the Holy Spirit's leading and recommendations by our trusted doctors and nurses.  While we appreciate your own experiences, remedies and ideas, we ask you refrain from sharing those with us at this time.  Thank you in advance for understanding this important request.


"Life List" . . .

Once we knew Ellie Kate would be going home from the hospital on hospice that last time, we quickly made a "Life List" which is much like a "Bucket List", but instead is focused on things we believed Ellie Kate would want and enjoy doing before going to Heaven.  With your help, we made a few of those things happen, even though literally within only a couple of days, and we couldn't be more grateful! 

Even though Lucy is stable and we don't expect any major changes ANY time soon, we've decided to go ahead and make a "Lucy's Life List"!  We'd love to accomplish the entire list by her seventh birthday on September 26, 2018.  We're still working on this all-importance list but we know a few things Lucy would enjoy and LOVE at this time . . .

• Going to the Ocean!  We'd love to take Lucy to the Destin area, or somewhere nearby, as Ellie Kate also spent a bit of time there and had a blast.  We took Lucy there on the first anniversary of Ellie's death but since it was unseasonably cold that time, Lucy wasn't able to get into the ocean in any way (although we have great pics of her sweet feet in the white sand!).  Feeling the warm sand and warm waves would simply be a dream come true for us and for Lucy! 
• Going on a boat!  We'd love to take Lucy on a boat ride!  This could be at the ocean or even at a local lake!  She could ride like a typical kiddo and could even get into a tube of some sort.  She loves driving fast and had a blast on the rides at Disney and Universal, so I know she'd love an "active" ride! 
• A pool - this is waaaay excessive, WE KNOW.  We just also know that Miss Lucy LOVES water and it calms her to be around it and in it, even though we don't have access to it much. When she is around a pool, she could stay there ALL day, soaking and floating - it's the only place where her body is free and I believe it helps with aches and pains as well. 
• Meeting Blake Shelton (and maybe Gwyn??) - Lucy LOVES country music, although she likes the guys' voices rather than hearing the girls' (which were EK's faves).  Maybe, since he's from OK, there would be a way to make this happen?  Obviously a sort of pipe-dream, but putting it on the list, nonetheless (EK wanted to meet Taylor Swift, Miranda Lambert or Carrie Underwood but received some special gifts, some autographed instead AND received a personal, taped message from Miranda, just for 'Ellie-Girl'). 

You know, I remember holding my little one-year-old girl, her little chunky legs and her animated face; those blonde, bouncing curls, gazing on her cherub-likeness - I clearly remember, at that very time and many times immediately after, that I had at LEAST SIX YEARS before I even had to WORRY about Lucy's well-being here on earth; before I even had to think seriously of her morality.  I don't know why I thought this as there has been no promise of Lucy's life being only the length of her Big Sister, and quite the contrary as Lucy's life has been spent OUT of the hospital and has been mostly healthy and happy!  Somehow, someway, I had that "worry" timeline in my head and I think of it now as a coping mechanism in some way.   I wish it had gone by more slowly. 

Six LONG years. It's a long time, right?  But it isn't, and we all know it.  And now, Lucy will be six years old this September, which means she is inching ever-so-close to that 7-year-mark which Ellie Kate barely hit (EK turned seven on Dec 4th and died Dec 23rd).  But,  please remember along with us, that Ellie Kate was only on hospice for three, suffered-filled days.  But you know what?  That WILL NOT be the case with Lucy.  While we cannot see the future nor what each day will hold, we do know that Lucy is stable upon admission to hospice, which is very different than Ellie Kate.  We have hope for more than a little more time with Lucy, holding to the expectant hope of more memories to be made, the realistic hope of more laughter and millions more kisses! 

Ya'll.  Whew.  Thank you so much for your support and encouragement over the years.  Thank you in advance for your support and encouragement through this as well.  Thank in advance for helping us work on crossing things off of Miss Lucy's "Life List", and for praying God would work in special ways where it's concerned. Most importantly, thank you for your prayers and petitions on behalf of Lucy's health, especially now. 

With Hope in My Broken Heart,

Ryan

Lucy is Three!

I've been bursting with joy, excited to post about our Sweet Girl this morning!  I'm just overjoyed that Lucy is OURS and that God has allowed her to live to the age of THREE! What an unspeakable blessing!

Although Lucy isn't officially our "rainbow baby", she comes very close to it.  She was only one when Ellie Kate died, and she has been a saving grace to me, to our family, in so many ways.  Lucy is the baby we didn't know we would have, but she is a blessing God knew we needed!

I remember longing for another baby, but we knew the risks - a one out of four chance with each of our pregnancies to have NKH.  Those aren't good odds, folks.  I spoke to my Dear Friend and faithful prayer partner Dana one evening, and shared with her our desires.  She committed to pray, and a few weeks later, we found out we were indeed pregnant.  How can you get pregnant on birth control?  I don't know, but Lucy is proof that it does happen! 

Early on I could feel this Sweet Baby move inside of me, just as with Ellie Kate.  10-12 weeks is early to feel a baby, but I promise that I felt those girls move that early.  I was thin with both of those pregnancies.  As soon as I felt Lucy move so early, I knew she had NKH.  I didn't want to believe it though, and we of course went ahead and did our CVS testing.

The first time I saw Lucy on that large screen in the genetic OB's office, I knew she was a mover and a shaker  She was this little sprite, all of twelve weeks gestation, moving and bouncing all around in my womb, just as Ellie Kate had done.  Mike and I had several names in our head for this girl (I knew it was a girl because of how sick I was from the beginning and I only get sick with my girls).  We saw this Baby Girl that day and knew she was a Lucy, right away.  "Bright Light" is what she was, bouncing around in there, happy and free.  And her middle name would be "Belle" after a dream God gave me of bringing beauty from ashes.  Oh, how much truth was layered in the name God had given Lucy Belle!

Lucy's birth was exciting!  I was terrified of early labor, and had contractions on and off for months.  I made many trips to Labor and Delivery.  I knew that all of our doctors, the geneticist, the NICU, etc all had to be on hand, and I didn't want to miss that window.  So at any sign of labor, I went to the hospital.  The morning of the 26th, I was tired.  I got the kids to school and went to my parents to take a nap.  I woke up frustrated and hurting, in the same labor pain that I had been in for weeks.  I stood there telling my parents that I refused to go to the hospital anymore until my water broke (which was silly, bc my water had never broken with any of my other babies).  I kid you not, folks - right then and there, my water broke!  In front of my parents, and we laughed and laughed. 

I ran to take a shower and get ready.  After all, I heard all of these stories of girls' water breaking and them having hours before delivery.  Once I got into the shower, it was clear that this baby was coming fast.  I barely got clean and we jumped into the car, Henry and mom in the back and my Dad driving us to OU Children's Hospital.  I was hurting and felt like I would have that baby right then!  This was not in our birth plan. 

We arrived and I got into a room and was already dilated to an "8".  It was less than an hour since my water had broken!  My dear, dear friend Holly Hall was able to come in and take pictures of our labor and delivery.  We had planned this because we didn't know what would happen with Lucy.  Would she stop breathing right away?  Would she cry?  Would we ventilate her?  We weren't sure about anything, but knew God would tell us during the moment.  So, we asked Holly to capture the moments that could be Lucy's first and last breaths.  I am so grateful for these treasured photos! 

A couple of pushes and a sweet cry, and this tiny blonde-haired girl was in my arms.  They let me hold her for a few moments before the team (and literally, there was an entire team in that room) took her to the NICU.  The boys were outside the door of the delivery room and they, along with grandparents, were able to see our girl be taken to the NICU in her incubator.  I stayed in that room, wondering what was happening.  It was such a strange feeling to have everyone gone and to be just me and the nurse. 

I see now that Lucy Belle McLaughlin IS our "rainbow baby", even though she wasn't born after Ellie's death.  She is a reminder that God is good, even through struggles.  The joy Lucy brings gives life and hope to my heart and to the hearts of our entire family.  I don't know what I would do without this precious, unexpected gift of "Beautiful Light". 

 

Oh Father, you are SO GOOD!  Your plans are ever-unfolding before us and they are too wonderful for our comprehension!  Thank you for the life of Lucy Belle.  Thank you for the love, joy and hope she brings to my heart as a mother.  Thank you for the light she brings to her Daddy and to her brothers.  Thank you for allowing me to love another special little girl - for entrusting me with such an incredibly special gift, design directly by you.  Your ways are not our ways, and I am so grateful.  Bless my daughter on this, her third birthday.  Be close to her heart.  Allow her to always she you physically around her, to see her angels physically protecting her.  Let Lucy know how much you love her, Jesus.  Let her grow and soar developmentally!  Let her know just how much she is loved.  Allow her to feel safe and secure.  Oh Father, I ask that you give Lucy a long and healthy, happy life here on earth.  Help us as her parents to give her what she needs and to teach her about your love for her, always pointing her to Christ.  Thank you for this precious, most Beautiful Light. 

 

It's Her Birthday!

It's Lucy's 2nd birthday!  Can you believe it?  Our Lucy Belle turned two years old today, and I couldn't be more proud of our girl.  It seems like yesterday that my water broke and two hours later, we had a baby girl being whisked off to the NICU.  We were uncertain of what was to come then and yet, when we first laid eyes on that petite blonde baby, we were full of hope and anticipation.  The same is true to this day.

Lucy Belle means "Beautiful Light", and Lucy truly is a light for me.  I had no idea how much of a blessing, how much of an encouragement, how much of a life-line that Lucy would be to me.  She shines light into the dark places of our hearts.  She reminds us of the beauty that comes from being broken.  Truly, I don't know what Mike and I would do without Lucy - especially during this time of loss.  Lucy gives us hope and she reminds us of Ellie Kate in almost everything that she does.  It's an indescribable blessing to us.

Today was filled with appointments, all of which went rather well.  The doctors are a bit concerned with Lucy's rapid weight gain.  She's gained two pounds in one month!  Don't get me wrong, I LOVE seeing a little chunkiness on those cute thighs. She even has more energy because of that extra weight!  But, we don't want the rapid gain to become a pattern, and with the metabolic issues coming along with NKH, we need to keep an eye on it.

Little Lucy also has had a major increase in seizure activity, numbering about 20 seizures a day that we see (we know there are many that we don't notice or that are not visible) .  As you know, NKH is just such a mystery, and the doctors truly don't know what causes the increase in seizures.  Has it been her ear troubles?  Is it her gut?  Are her metabolic issues causing a problem in breaking down the anti-seizure meds?  Is it progression of NKH?  Is it because of her rapid weight gain?  No one knows, like I said.  All we can do is rule things out, which is why we checked her glycine levels today.  Those results may give us a bit of direction.  We are also upping some of her anti-seizures yet again in hopes of slowing down the seizure monster.  Please pray that the seizures will slow down and leave little Lu Lu alone.

We are also still having to use pain medicine to help with Lucy's crying spells.  These "crying spells" are just unexplainable, which is maddening.  Is it seizure activity?  Sometimes, yes.

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In closing tonight, I leave you with Isaiah 35, which was given to Lucy and our family for this coming year.  How faithful is our God, even when we are not!!  

The Ransomed Shall Return - Isaiah 35, ESV

1 The wilderness and the dry land shall be glad;

the desert shall rejoice and blossom like the crocus;

2it shall blossom abundantly

and rejoice with joy and singing.

The glory of Lebanon shall be given to it,

the majesty of Carmel and Sharon.

They shall see the glory of the Lord,

the majesty of our God.

3 Strengthen the weak hands,

and make firm the feeble knees.

4Say to those who have an anxious heart,

“Be strong; fear not!

Behold, your God

will come with vengeance,

with the recompense of God.

He will come and save you.”

5 Then the eyes of the blind shall be opened,

and the ears of the deaf unstopped;

6 then shall the lame man leap like a deer,

and the tongue of the mute sing for joy.

For waters break forth in the wilderness,

and streams in the desert;

7 the burning sand shall become a pool,

and the thirsty ground springs of water;

in the haunt of jackals, where they lie down,

the grass shall become reeds and rushes.

8 And a highway shall be there,

and it shall be called the Way of Holiness;

the unclean shall not pass over it.

It shall belong to those who walk on the way;

even if they are fools, they shall not go astray.

9No lion shall be there,

nor shall any ravenous beast come up on it;

they shall not be found there,

but the redeemed shall walk there.

10 And the ransomed of the Lord shall return

and come to Zion with singing;

everlasting joy shall be upon their heads;

they shall obtain gladness and joy,

and sorrow and sighing shall flee away.