Monday, October 10, 2016

It's my party. I can cry if I want to.

This past week has been an emotional one, but most of the emotions came out of a full heart.

Thursday was La Petite Belle's 16th birthday.
She spent the majority of the day before crying. I tried to comfort her, but ended up crying myself.
No one should have to spend their 16th birthday in the hospital.
She was overwhelmed with emotion and her situation.
She vocalized to her father and me that she never imagined that her sweet 16th birthday would look like this. She envisioned that she'd be dressed in a beautiful dress, hair done up, makeup on, surrounded by her friends, dancing at a Cinderella-like ball.

That's not what her day looked like.

She didn't wear a beautiful dress, nor makeup. Her hair wasn't done up either.
But, I dare say she was the most beautiful I have ever seen her.

Let me give you a little more insight into who our La Petite Belle is ... she is the most generous person I know. Her heart is big. Her love for people is humongous.

For her birthday, she wrote individual invitations to her nurses to come by her room (yes, she's was able to sit up in the bed and use a pen to write ... progress!). In the invitations, she stated, "no presents." When I asked her why she wrote that, she said it was because they already do so much for her. She just wanted to bless them.
She wanted to give everyone cupcakes, and achieved her goal of getting in the wheelchair to roll around the unit to hand out goodie bags to all the staff. Other nurses even came up from PICU to see her and wish her a happy birthday.

Little did she know, that we were jumping through hoops behind the scenes to allow her to see Roxy Belle. She's only been able to see her once since admission date, January 5th. Dogs are not allowed on the BMT unit obviously because of the patients' low immune system. However, La Petite Belle is not like the typical BMT patient and over a year post-transplant. A visit was organized using PAWS (Pets Are Wonderful Support). We encouraged La Petite Belle to get back into the wheelchair a second time, despite her exhaustion from her exciting day, and surprised her in a room outside the unit. It was emotional and amazing.

That was on Thursday, her actual birthday. She spent a lot of time in the wheelchair and visited with lots of people. It was a good day.

But, that wasn't the end of it.

We continued our charade for the next two days.
Two of her absolute favorite people from our home town came and spent the night with her. More tears came when they showed up Friday evening out of the blue. Beau and I were able to get out together.

The best surprise was to come on Saturday, the following day. We invited friends and family from home, plus new Texas friends to celebrate our girl with a surprise party.

Yep ... more tears.

Our sweet girl was so blessed by the love expressed by so many.

We are beyond proud of this 16-year-old beauty and consider it a privilege to be her parents.

As far as an update goes on La Petite Belle ... as you can see, she has made some major strides just within the last week. We see her getting stronger every day. She works hard, despite how painful it is. Of course, she still has a way to go before they will release her based on her strength. La Petite Belle is also continuing on dialysis four days a week. We're praying and believing each day that these kidneys will recover and get stronger as her body gets stronger. La Petite Belle is beginning to try to eat again. She eats small bits at a time, but her stomach issues definitely seem better. Lastly, please pray with us that this blood clot is completely gone so that she can get off this Heparin drip. The doctors are planning a repeat CT to check to see if it's gone within the next couple of weeks.

The road ahead isn't clear and it's been such a long journey. We are already looking to next year and what that may hold for us ... jobs, another place to live, La Petite Belle's medical care/hospital visits & schooling, new deductible, and even needing new health insurance (if you can believe that ... yes, we're going to have to find new health insurance). 
We don't know what each day holds, but at least we know who holds each day. And, He loves us.
Thanks for lifting us up and supporting us through this. We appreciate each and every one of you.

Thank you for your continuing to pray, stand, and believe with us for our girl's complete healing!
If you would like to financially support Katie's (aka La Petite Belle) journey to healing, you can find more information here:  All funds go to cover medical bills and expenses.

Friday, September 30, 2016

Stop Saying " ... if it's God's will ..."

I can understand how someone who doesn't know God can say such a thing. But, for the life of me, I can't understand why those who know God and have been devout Christ-followers for many years can utter these words.

I received, yet another text recently, from a well-meaning person with these words in it regarding my daughter's healing ... "if it's God's will."

Duh. Of course it's God's will to heal. God's will is ALWAYS healing.

If you know God, then you know His will.
If you don't know God, then everything is nilly-willy, up-in-the-air "theology."

When you say, "if it's God's will," you don't believe in the power of prayer. In fact, you don't believe God listens at all, much less intervenes in our lives.

Saying, "if it's God's will," means everything we're taught about prayer doesn't matter. 
It's like saying, "Well, you can pray as much as you want, but God's going to do whatever He wants to do regardless."
So, then why pray? What a waste of time that would be.

The Bible always points us towards bringing our requests, prayers, and petitions to God (Matt. 7:7; James 4:2). In fact, the Bible says to pray about EVERYTHING (Phil. 4:6-7).
Why would He ask us to do that if He were going to simply disregard them?
What kind of god would ask us to pray, to ask, all the while knowing He wouldn't listen?
That's not the God I know.

The God I know doesn't just hear, but listens.
The God I know sees, and is moved by our honest pleas.

God's will is ALWAYS for life and never for death.
God's plans are ALWAYS for good and never for evil.
That's His will, so we never have to say, "... if it's God's will," as if we're giving Him an out in case things don't work out the way we think is right and good.
He doesn't need our help, nor an out.
We just have to understand that His ways are ALWAYS higher than ours.

Trust me, I've spent the last year and a half trying to understand His will and make sense of the details of our lives. God and I have had some real honest conversations, some real hard conversations. I've learned to not even waste my energy or brain space on trying to understand or answer the question, "why."

Jesus taught us to pray. In His prayer, He said, "Thy will be done on earth as it is in heaven." He could pray this with confidence, knowing who the Father is and that His will is perfect.

As Christians, we need to just take that phrase out of our speech. We need to commit ourselves to prayer, knowing full well He is working on our behalf.

Ok, I'm off that soapbox.

September is now ending and we move onto a new month, a new season, and yet we are still fighting alongside our sweet La Petite Belle. Still in the hospital. Tired beyond belief. Relying on God's strength to sustain us and get us through to the other side of this.

La Petite Belle has been suffering from pancreatitis, but it seems to be resolving as I write this today. Her vomiting/nausea/pain isn't as intense as it has been. She continues to try to push through the pain and work on regaining her strength with physical therapy. We are also trying to keep her consistent with this, regardless of how she feels when it is therapy time. La Petite Belle remains on a Heparin drip to get this blood clot dissolved. The GI doctors will also be conducting a motility test this coming week to check out her digestion. She hasn't eaten in over a month and shows no signs of hunger, which is not her norm. Her doctor seems to think she has some type of abnormality regarding her motility. The most disheartening thing to us now is that her kidneys seem to be sleeping yet again, and she's back on dialysis four days a week. The kidney doctor said she was "worried" they wouldn't recover. We are trying to remain hopeful that her kidney function will return a second time.

Your prayers are so appreciated. Please pray that her kidneys will, once again, make a complete recovery and prove the kidney doctors wrong. Also, pray for continued healing of her stomach and GI tract, and for this pancreatitis to be completely gone. Pray for strength for her muscles and bones and this blood clot to disappear.

Thank you for your continuing to pray, stand, and believe with us for our girl's complete healing!If you would like to financially support Katie's (aka La Petite Belle) journey to healing, you can find more information here:  All funds go to cover medical bills and expenses.

Monday, September 26, 2016

More About Hope

I've learned a lot about hope over the last year.

Hope is not a wish.
It's not a desperate desire for something to happen.
It's not even a dream for the future.

Hope is so much more than wishes, dreams, desires, and lofty goals if your hope is in the right thing.
If your hope is in something constant, reliable, and good, then hope becomes an assurance.
That's what hope in God is. It's an assurance. Hope in anything else is just fairytale wishing.

Remember this old hymn:
Our hope is built on nothing less than Jesus' blood and righteousness;
I dare not trust the sweetest frame, but wholly lean on Jesus' name.
On Christ the solid rock I stand, all other ground is sinking sand.
All other ground is sinking sand.

But, wait ... verse two is even better ...
When darkness veils His lovely face, I rest on His unchanging grace;
In every high and stormy gale, My anchor holds within the veil.
On Christ the solid rock I stand, all other ground is sinking sand.
All other ground is sinking sand.

That second verse is my true life story right now.

I recently read a perfect visual of what hope in my unchanging God looks like. Holly Wagner (Find Your Brave) compared hope to floaties ... the floats you wore on your arms as a child to help you stay above water.  As a child, I trusted those floaties with my life. As a mother, I trusted those floaties with my children's lives. When those floaties were on your arms, you weren't going down. Not at all. They kept your head above water and they kept you from drowning.
I trusted those floaties. I would not sink.

Hope in God looks like that floatie. 
I trust it. I put all my confidence in it.
I know that He will not allow me to drown.
He will keep my head above water.
I can swim here and there ... shallow water, deep water, roaring water. Whatever the water is like, He will keep me afloat.

That's not to say I won't get wet or water up my nose or in my mouth; better yet, I might have to dodge a shark or two, and probably a multitude of jellyfish. There will be many, many times I have to remember to take breaths and remind myself I'm not going under.

Most importantly, I have to not allow my floaties, my hope, to get punctured, causing the air to release. Because if that happens, I will drown.

And, if I'm being honest, that's sometimes the hardest part ... keeping my floaties full of air.

Keeping your floaties full of air is something only you can do.
Keeping your heart full of hope is your responsibility.
You have to be the one who fills yourself up with all the hope that is found in God alone.
You have to read God's Word every day. 
You have to remind yourself daily of who God is and who you are as His child.
When you don't do these things, anyone can poke a hole in that hope floatie of yours. Or you can just allow the air to seep out by not carefully guarding that precious hope.

This Scripture is in the "Notes" section of my phone. I read it constantly.
I will never forget this awful time, as I grieve over my loss.  Yet I still dare to hope when I remember this:  The faithful love of the Lord never ends! His mercies never cease. Great is his faithfulness; his mercies begin afresh each morning. I say to myself, “The Lord is my inheritance; therefore, I will hope in him!” The Lord is good to those who depend on him to those who search for him. So it is good to wait quietly for salvation from the Lord. (Lamentations 3:20-26)

I'm learning and living this lesson of keeping hope alive.
I have been stuck in moments of despair and hopelessness. And, I know that happened when I allowed myself to start sinking and forgot that I had floaties on the whole time.
I'm far from perfect and have had some real talk with God this year.
I can't say that I won't have more moments of sinking and splashing frantically about in the water. Honestly, I can guarantee that these moments will come.
But, when they do, I won't drown because I know my hope is in the One who will NEVER allow that to happen.

Hope in Jesus is not a wish. It's an expectation.
It's a "I know that I know, that I know, that I know He won't fail me" mindset.
It's where "everything will be okay" comes from.
It's a promise that can't be broken.

Our hope is firmly in our incredible, loving, powerful, just, merciful, unchangeable, grace-giving, healer, and ever-present Father God.

With that said, we continue to be hopeful that our sweet La Petite Belle will continue to recover. 

UPDATE: We have moved back up to the 8th floor so that's definitely a step forward again. The fungal infection has cleared. 🙌It looks like her kidneys are going to need time again to recover so she is on intermittent dialysis 3-4 days a week for 4 hours at a time. She's pretty miserable during this time. We are praying & believing for her kidneys to recover swiftly & heal. La Petite Belle is also on a Heparin drip to treat this blood clot in the vein where her dialysis catheter is. We are praying for that to also clear soon. La Petite Belle does continue to vomit & continues to try to eat a bit here & there, but with not much success. The doctors think it's related to her stomach needing to re-learn how to work again. We are praying for her stomach & GI tract to completely heal & work the way God designed it to work. And, lastly, she has lost more strength from being in the bed again for so long. We are praying she regains her strength & can stand so that she can get out of this hospital & begin to live her life again.

Thank you for your prayers and standing with us for complete healing for our precious girl.
If you would like to financially support Katie's (aka La Petite Belle) journey to healing, you can find more information here:  All funds go to cover medical bills and expenses.

Wednesday, September 14, 2016

What It Feels Like

Hospital life in general is exhausting. I've posted about it many times. But, life in the PICU is worse. Pretty sure I've posted about that too. It's just the way life is right now and that's what this blog is about ... my life, our life.

The entire purpose behind this blog was to write about our life ... the good, the bad, the ugly. Until now, it's pretty much all been "the good." My goal was that this blog would remain long after I was dead and gone. My children would be able to go back and read about their childhood and how their Mama's brain worked. They would hopefully see how much their daddy and I loved them and remember some great moments. They could share these moments with their children and all the children who followed.

I never imagined the majority of the posts from the last year, actually even longer, would chronicle my sweet La Petite Belle's fight of her life.  My posts were mostly light-hearted and funny, with just a few serious and controversial posts thrown in here and there. Honestly, I miss those types of posts. I miss simply posting about school events, funny stuff my girls said, and recipes. 

Beau and I do not sleep in the PICU. There are no beds in the room, only two of the most uncomfortable chairs in the history of chairs. We have slept in the waiting room multiple times amidst the constant activity and snoring, but we were miserable the next day. Totally exhausted. Eventually, we learned if we wanted to be able to take care of and advocate for our child all day until evening, we needed a good night's sleep (which really doesn't exist for us anymore, but we try). Now that we have an apartment, we are able to go home for the night, shower, and sleep.  

Of course, sleep is always hard. It's hard if we're here and it's hard if we're not. When we're here, it's nearly impossible to get a full night of rest because it's a hospital ... noisy and constant interruptions. When we're not here, we wake up throughout the night wondering what's happening, afraid of the phone ringing. It's just the way it is.

As Beau and I left the PICU, after tucking La Petite Belle in for the night, I described to him what I thought each day felt like:
"Every day is the same. It's the worst sort of Groundhog's Day ever. It feels like there's a tiny man in my chest, just punching me in the heart over and over and over again, all day long until I leave. Then, I sleep as best I can and it starts all over again the next morning."

He said, "You do realize that's not your actual "heart," right?"
(insert smirky face here)
He knew what I meant, but that's what it's like living with a smart you-know-what.

That's the best description I have of how this feels. I'm sure all the parents here would agree with me.

Not only does your heart break for what your own child is facing, but for what other children and families are facing. You always hear that this stuff is hard, but you never truly know or understand until you actually experience it. It's nothing I would want anyone to experience ever. It's hard and it hurts every single day.

It's quiet in our room in the PICU right now, at least for a little while. The only sounds are that of La Petite Belle's favorite album, Hillsong United's, Empires, and the beautiful sound of her breathing.
I never realized how beautiful the sound of breath was until now.

We created an 8-hour worship playlist that plays 24/7. And, then, this morning, her nurse brought in a little boombox with her worship CDs, which included La Petite Belle's favorites.

We sit and wait for doctors. We sit and wait for lab results. We sit and wait for test results.
We sit and wait all day. And, not the good kind of waiting, like for your favorite burger to reach your mouth or the doors to open for the band you've waited to see or for your hubby to get home from work (wait ... is that good for everyone or just me?). The waiting is long and it wears you down. The waiting can be agonizing and it can actually hurt.

The simplest things that you would take care of in regular life become so difficult. The battery in my vehicle died. It's taken us almost a week to coordinate taking it to get changed. Picking up items at the store become a chore. We were going to make tuna sandwiches last night after getting home late from the hospital and realized we had no bread. There's no time for laundry because we're always at the hospital and exhausted when we get home. The dishwasher needs to be unloaded and loaded. The bathroom needs to be cleaned. I think I have a cavity and need to go to the dentist. My Louisiana driver's license expires in a couple of weeks. Roxy Belle needs to get bathed and groomed. And, let's not even talk about finishing up all the unpacking of boxes. In normal life, these things are nothing. But, for families enduring long hospital stays, simple daily tasks become difficult.

I realize if we were in a place where our family and friends were, we would have help. But, that's not the case. We have only a handful of people we know and that's how life is now.

That's what this feels like.

We each have moments of strength and moments of weakness. Mine are mostly weakness. Beau's are strength.  He's usually the one who looks at me, as tears are streaming down my face, and says, "It's going to be okay."

In my heart, I know that it will be. God is faithful. He has carried us and will continue to carry us. But, it still hurts. It still breaks me to watch La Petite Belle go through a lot of the things she's facing. A mama's heart can only take so much. After all she's been through, there are still challenges ahead. And, like I've said before ... just when she gets a break and it looks like she's moving forward, something happens to set her back ... another problem, another complication.

With that being said, we got another blow of news yesterday. As you know, La Petite Belle has been having issues with this dialysis catheter. She literally has had three catheters replaced in a matter of a week or so. They weren't working. And, of course, we were hoping that dialysis was a thing of the past because of her not needing it for 11 days. But, then this infection hit and obviously affected her renal function. So, she's back on it intermittently for now. We are continuing to pray and believe that her kidney function will return to normal.

But, that wasn't the "blow" I speak of. When the doctor was replacing her last catheter, which is in her superior vena cava (vein going to heart), he saw a clot ... a blood clot in a vein going to her heart. Supposedly this happens sometimes when a vessel is continually "injured" by accessing it over and over again. With a person who doesn't have risks of bleeding, this type of thing is easier to deal with because medicine can be given to break up the clot. Of course, for La Petite Belle, there is a fine line as to how much of a blood thinner she can get because of her bleeding issues. The doctors met and decided that the best course of action would be to start her on a low-dose Heparin drip (blood thinner). They will be checking labs every day to determine if the clot is breaking up and dissolving. They will also be doing an ultrasound of the area to watch the clot. Please pray with us that the clot would dissolve and not become dislodged because that would be very dangerous for our sweet girl.

La Petite Belle is still being treated for this infection and will remain on this nasty anti-fungal medicine at least for another week. Today, she did a swallow test because her nausea and vomiting has not improved much in over a week. Now, we wait on the results of that test as the doctors continue to scratch their heads as to why she has been vomiting since all other tests have come back negative. She hasn't eaten or really been able to drink much in over a week.

Despite things being hard ... really hard, we continue to trust in an unfailing God. All we can do is cry out to our Father. He hears. He sees. He knows.

Thank you for your prayers and standing with us for complete healing for our precious girl.
If you would like to financially support Katie's (aka La Petite Belle) journey to healing, you can find more information here:  All funds go to cover medical bills and expenses.

Monday, September 5, 2016

Our Girl On Drugs

We've all seen those videos posted by loving family members and friends of their loved ones on pain meds after getting their wisdom teeth pulled or some type of procedure. They're quite hilarious.

I've often wondered what I might say or have said after coming out of surgery. Who knows?? It's a scary thought. I mean ... I know my heart and it's only so good, people. I'm sure yours ain't much holier than mine. People say the craziest things and can be downright cruel on pain meds.

But, I have to tell you this ... Beau and I are in complete agreement that our La Petite Belle has just about the purest heart ever.

Over the last eight months, (yes, today marks eight months inpatient here at TCH), La Petite Belle has been on lots of pain meds ... some too strong for any of us. She's also been sedated multiple times. And, listen ... she has NEVER uttered one evil word. We've heard stories of patients saying the craziest things, even cursing at their doctors, nurses, and parents. Who knows what you or I would say in a similar situation? But, the harshest thing our girl has said is "Stop it," and "Stop touching me." Every other word has been pretty sweet. Even when she's been hallucinating due to meds she's been on, her hallucinations have always been so innocent. I guess that's a good thing ... innocent hallucinations. 

Yesterday, as she was loaded up with Morphine and Ativan, and probably a few others, she asked us to pray with her. La Petite Belle has asked this often in our stay here, especially when she's scared or hurting. 

Before we prayed, she asked her nurse, Chelsea (her absolute favorite nurse), if she wanted to pray with us. Her nurse said, "Of course." We all prayed together and before the prayer was over, she whispered "and bless Chelsea," reminding her daddy to pray for Chelsea.

This all came late in the day after telling Chelsea that she was indeed her favorite nurse. La Petite Belle also told her, "I trust you, Chelsea. I know I can be bossy." And, yes, she can.

Nurses truly make or break your stay in the hospital. I strongly believe that they can be your strongest  advocate or not care a lick about you and do the bare minimum. We've had many experiences here with fantastic and not-even-close-to-fantastic nurses. If they only knew what a huge impact they had on patients and their families, I would hope they would all strive for fantasticism. 

There is an obvious difference between nurses who genuinely care and nurses who are just collecting a paycheck.

Chelsea has been our nurse for the longest during our PICU stays. One morning, during our longest stay and when La Petite Belle was her sickest, I walked into the room to find Chelsea sitting next to her. She was charting on her computer, but also chatting with La Petite Belle and they were listening to One Direction.

This is the same nurse who, during this long stay, rearranged her entire room so that she could see the sunlight outside. She showed up with decorations for the room and, when La Petite Belle was longing for an ICEE one day, Chelsea called her fiancé to go and get one for her and bring it to the hospital.

This is a nurse who goes out of her way to provide excellent care for her patient, but also just generally loves her job and cares for her patient. I've seen Chelsea fight for our girl in multiple scenarios. She's cried with me and hugged me. She's bought me coffee and I try to make sure she's loaded up on Hot Tamales and Skittles for the day. I would go quite further and say that this nurse loves our sweet girl.

Chelsea, along with some other fantastic nurses, also decorated her room for first-year re-birthday, which happened the last time we were in PICU. This is creativity here, using coffee filters and urine collector jugs.

To me, that's what nursing is about. I don't know how nurses can separate themselves from their patients like hospitals want them to do. It's an emotional, heart-wrenching job, with gains and losses. But, if every nurse would invest in their patients, they would find even more fulfillment.

Of course, I'm not a nurse. I've just been in pretty much 24-hour contact with nurses for 244 days and seen a lot since we've been here. Having been a teacher, I can't imagine any profession, especially those where children are involved, for a person not to be invested.

So, that's my two cents on that.

La Petite Belle also has some favorite physical and occupational therapists. This same morning her physical therapist, Emily, asked La Petite Belle if she could see because of all the fluid causing her eyes to be swollen. La Petite Belle said, "I can't see you, but I love you."

That's the kind of stuff this kid says.

Now, granted there are moments of frustration and she can be quite bossy and blunt. Not sure who she gets that from. And, she's definitely over all this and that can show in her attitude. But, Beau and I simply love how sweet she is, and how her pure heart shines through right down to her hand-holding of pretty much anyone who will give her their hand ... doctors, nurses, therapists, whoever really.

It's 9:00 pm right now and we are sitting in the La Petite Belle's room in the ICU during her eighth stay. We're currently waiting on whether or not a medication placed in her dialysis catheter will help them do dialysis. This has been the plan all day, but there have been complications during the attempts to do dialysis all day because of issues with this catheter. 

It's been a rough few days. La Petite Belle's breathing continues to be labored. Although she has been extubated, she remains on BiPAP, forcing air into her lungs to help her breathe. Chest X-ray still shows fluid in her lungs & she is oozing fluid from her skin in the areas that are the thinnest. 

She has been off of continuous dialysis as of this morning, but more fluid still needs to be pulled off. Sh was supposed to start  intermittent dialysis this afternoon, but it was unsuccessful because of the catheter site oozing blood. Her blood pressures have been lower than usual, so they are prepared to use pressers if need be once she does finally get back on dialysis. This fluid HAS to come off. The doctors say it's a combination of her kidneys taking another rest because of too much fluid (although she is producing some urine, not as much, but still some) and infection. She has tested positive for two infections in her blood, one bacterial and one fungal. This causes inflammation, which is also part of her fluid retention problem. She has a low-grade fever, and is on antibiotics and an anti-fungal medication. She feels pretty crummy and is sleeping most of the day, simply exhausted from trying to breathe and fight infection. 

Our girl has fought SO HARD. To end up back down in PICU, after her GI issues were getting better and she was getting stronger, is such a disappointment.
Please continue to pray for our sweet girl. She is tired.
She is a fighter. She is our hero. 

If you would like to financially support Katie's (aka La Petite Belle) journey to healing, you can find more information here:  All funds go to cover medical bills and expenses.

Friday, August 26, 2016

"Don't Lose Yourself."

That was what one of the nurse managers told Beau and I a couple of days ago.

"Don't lose yourself."

That statement stuck with me.
But, there's no way not to lose ourselves in our current circumstance.

When you have a child who is battling sickness and fighting for her life, there's nothing else that matters.

Your identity gets put on the back burner. 

Your only identity is found in being a mom or a dad. You identity is found in being a protector and advocate for your child. You simply become "Mom" and "Dad." In fact, that's the name that you are referred to by everyone in the hospital. The staff doesn't call you by your name ... only "Mom" or "Dad." That is our identity.

You do lose yourself.
You don't even remember who you were, much less know who you are anymore.
You don't remember what dreams you had.
You don't remember even what future you had hoped for.
You don't know who you are or care about that.
You only care about being that mom or dad your child needs.

One of the hardest parts of this year has been finding time for Beau and I to spend together outside of the hospital. We have had some moments thanks to family and friends who have offered help, but I can totally see how times like this can put a great deal of stress on marriages. Not only do we need to be strong for La Petite Belle individually, but, also as her parents, we need to continue to strengthen and nurture our marriage. How does that happen in our current situation? It's hard. It's not easy to get away from the hospital, especially both of us at the same time.

We do make it happen from time to time, but mostly when we're away from the hospital, we're each alone. Despite the fact that I may have sat at the hospital with Beau all day, I still send him texts when I'm away that say, "I miss you." I do. Sitting alone at an empty apartment just makes you miss your family even more. But, we know we each need breaks from the hospital, even if it's just to sleep.

Let me tell y'all something that I've discovered about myself ... I need sleep. And, if I don't get the sleep I need, I turn into someone I don't recognize ... a mean bean for real. Seriously. No joke. Something that may not have bothered me the day before when I had gotten a good night's sleep, will cause a conniption fit in me on the day after a night of sleep at the hospital. So, there's that ... not a good quality when most of your nights are sleepless nights.

My identity has become pretty simple:
I am child of God.
I am a wife.
I am a mom.

That's literally it.
There are no other titles I hold anymore.
Those are the only titles I have to work on every day and the only ones that matter.
There was a time when I did have goals and dreams for myself, but those have faded away.
There were times when I agonized about God's calling on my life and whether I was doing what I was supposed to be doing, doing the right thing. Now, there is no doubt.
This is my calling. This is my life.
I don't know what the future holds for me. I don't know what the future holds for my family
I only know Who holds the future and I trust Him.

Every day, I am learning to embrace the ministry that God has put in front of me. I am trying desperately to be content in a circumstance I would wish on no one.

When I lose myself, I just have to remember that God knows who I am. He knows EXACTLY who I am, actually better than I do. My identity is only found in who I am through my relationship with Him.

Here's an update on our sweet girl ...

La Petite Belle has spent the last week on the 7th floor. Her main struggle right now is pain and getting that under control due to this new wound and more downtime in the bed. Although she has pain, she's still working as hard as she can with physical therapy and occupational therapy. She actually says she likes working with them and wishes it wouldn't be painful so she could work harder.

Our girl hasn't had any "big bleeds," as they call it here, and she went five days without needing a red blood cell transfusion. That's great news!

But, the best news of the week is that she hasn't needed dialysis since last Saturday. She is producing much more urine and her kidney levels have been holding at a better range. While her levels aren't normal right now, they're a lot better than they were. We still have to be cautious about her fluid intake and follow this renal diet when she does eat. The doctors are monitoring her every day to determine if she will need dialysis for that day. So far, so good. We are hopeful and praying that these kidneys make a full recovery and the dialysis catheter can be taken out.

We thank God for His guidance and healing. We thank God for the strength He gives us through this. We thank God for simply being a good Father to us, His children.

Thank you for continuing to stand and pray with us for a full recovery for La Petite Belle.
We appreciate each and every one of you so much!
If you would like to financially support Katie's (aka La Petite Belle) journey to healing, you can find more information here:  All funds go to cover medical bills and expenses.

Friday, August 19, 2016

Insanity and the Flood

You know what the definition of insanity is, right?
Well ... here you go ...

Insanity - Doing the same thing over and over again, expecting different results.

At least that's the only definition I know and it's exactly the definition I gave the doctors yesterday in rounds. And, that's where I feel like we are stuck ... in this cycle of insanity.

La Petite Belle bleeds.
They get the bleeding under control with meds and by pumping her full of blood.
She seems to be improving, lasting a few days to a couple of weeks.
Then, the cycle starts over again with another bleed.
Repeat. Repeat. Repeat.

Do you see that? Insanity.

If the cycle itself isn't enough, we have to deal with teams of doctors disagreeing on what's causing the bleeding ... Is it the GVHD (which the last biopsies have shown to be gone or very mild) OR is it the results of high-dose steroids? Is it one central spot that continues to bleed OR is it general oozing in areas OR is there another area that's bleeding? 

Those are the questions to which we have no answers.

Another meeting is being scheduled between medical teams ... GI, BMT, PCU (which is the floor we are on now that is the step up from ICU, with the same ICU doctors that are very familiar with La Petite Belle), and a new team, Transfusion Medicine. This last team has followed her labs closely for a while and have started her on a new IV medication that is supposed to control bleeding.

However, La Petite Belle still had a little more bleeding just yesterday after doing well for days. When it will stop, we don't know. What will cause it to stop besides giving her blood products, we don't know. There is so much we don't know, and apparently the doctors don't either. Just as we are frustrated and growing very weary in this process, they are too.

As our lives continue to be turned upside down, almost unrecognizable ... actually, not "almost" ... TOTALLY unrecognizable, we watched as so many of our friends back home faced major flooding last week and the devastation that it caused.

Would it make any sense to you if I said that I wished I could've been in Lafayette as it flooded?
No, it doesn't. Let me explain.

The flooding made me miss home.
The flooding made me miss the people in Lafayette ... my people.
The flooding made me miss my family and friends.
And, I realize Lafayette will always be home to us.

About 16 years ago, we had the same revelation when Beau and I decided to move back to Lafayette after living in Tulsa for six years. Actually, we realized three years prior to that when K Belle was born that we wanted our children to live close to and know our families, our friends, the church we met at, and to be a part of such a unique community. I'm so glad we made that decision.

As I sit in this hospital room in Houston, after a couple of weeks of traumatic events and moving into a new apartment, my heart yearns to be home again. Our girl wants to be home more than anything. When I was unpacking our boxes earlier this week, I had so many emotions about living in this city. While we do love Houston and live here now, it doesn't feel like home.

When La Petite Belle gets down, the only thing she says is, "I want to go home." And, when she says, "home," she means our life in Lafayette, which doesn't exist anymore.

We all miss it so much. My heart feels like it's still splitting in two, despite the fact that we've lived in Houston this year more than we've lived in Lafayette.

All of my hometown friends ... I hope you know what you have there. Appreciate it. Lafayette is a special place with the greatest people on the planet. Go hug a Cajun today ... dem's good people. If only I could transplant all my Lafayette peeps here in Houston, life would be so much more doable. So obviously, it's not the place, it's the people who make Lafayette what it is. #ProjectBringLafayetteToHouston

As for now, we're Houstonians ... we continue to have NO idea when this ordeal will be over nor what life will look like afterward. So, we're here ... holding our baby's hand, praying over her, crying, loving her, hoping, and trusting in a great God.

I love this song because it's exactly where I am right now ... telling my heart to beat again, telling my heart to trust, telling my heart to hope in an unchangeable God and loving Father.
Thank you for continuing to pray, believe, and stand with us for our girl's complete healing.
If you would like to financially support Katie's (aka La Petite Belle) journey to healing, you can find more information here:  All funds go to cover medical bills and expenses.