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: www.gofundme.com/Katieg.  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.
video

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: www.gofundme.com/Katieg.  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: www.gofundme.com/Katieg.  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: www.gofundme.com/Katieg.  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: www.gofundme.com/Katieg.  All funds go to cover medical bills and expenses.


Thursday, August 11, 2016

The First Time You Hear Your Child's Doctor Say The Word "Die"

That happened two days ago.

La Petite Belle ended up back in the ICU over the weekend due to another GI bleed. She seems to be stuck in the pattern of bleeding, healing, getting stronger, then, starting over with bleeding again. We have been in and out of the ICU four times since the mid-July. Crazy.

While we love the ICU staff, we really don't want to have to see their faces again. We want our girl stable enough to not have to be there.

Because La Petite Belle's bleeding didn't stop after a couple of days, the GI doctors decided they should go in, yet again, for another upper and lower scope. Tuesday at 1:00 pm, our girl was rolled to the OR for her sixth scope, a pretty simple procedure. The doctors do have to be very careful because her tissue is so fragile and inflamed.

We waited for the doctors to come out with their pictures and to tell us what they found, just like they always do. They walked into the waiting room just about thirty minutes after the procedure started. This couldn't be good. I thought they obviously weren't able to see anything.

The doctors ended up only performing an upper scope. When they looked into her stomach and the opening of her small intestine, they saw a hematoma ... the same hematoma that had been there a couple of weeks ago when clips were inserted to close up a large, bleeding ulcer. The hematoma hadn't shrunk in size. The hope was that her body would absorb it over time. The doctor stated that she thought there was something under the hematoma "feeding it" ... a bleed. We would have to discuss how we would clear the hematoma safely to see what was under there and incorporate surgery doctors into the conversation. The plan was to discuss over a day or two and decide.

Beau and I walked back to La Petite Belle's ICU room to wait for her to get rolled back. We hadn't even been sitting there five minutes when the surgery liaison came in to say the anesthesiologist wanted to speak to us in the one of the family conference rooms. We headed over there thinking he was simply going to update us on what went on with her sedation.

The anesthesiologist began to tell us that as that he had pulled La Petite Belle's breathing tube out and they were getting ready to wheel her back to the room when they noticed her gown was soaked with blood on the right side of her chest. When they pulled her gown back, they saw a very large skin tear (ended up being 6 cm x 20 cm). I've mentioned before how tender, sensitive, and thin La Petite Belle's skin has gotten due to ... you guessed it ... steroids. She's had a few skin tears, but nothing of this magnitude. 

They called for plastic surgery to come and look at it before they put a dressing on it. As they were waiting, La Petite Belle began vomiting lots of blood. They quickly put the breathing tube back in because they did not want any blood to get into her lungs.

As he was telling us this, the GI team came back in, accompanied by the chief of surgery, and our BMT doctor. A decision had to be made. Our precious girl was lying there on the operating table waiting for what would come next. Something had to be done.

We had two choices: 1) Continue down the path we're on where she faces a life-threatening incident every week or two, OR 2) Go in and clean out this area and see if there is a bleed there by an artery or something that can be fixed.

We asked a lot of questions.
We discussed all the options.
We agreed with our BMT doctor, who said we needed to do what we could now. This is where he said that one of these that one of these incidents, if they continue like they are, she may not be able to recover from and die. We also felt like it was safer for her if she were to bleed on the operating table, where it could be managed better,  than in the ICU room or rooms anywhere else.

The surgeon said it was a "very high-risk" surgery and would be considered "emergency surgery." The GI doctor would go in one more time, endoscopically, to see if they could see anything behind the hematoma, possibly try to clear it out, but the surgeons would be standing by to intervene.

Beau said one more thing before the doctors left to see our girl. He said, "I don't know what your faith is and what you believe, but we are people of faith. Would you mind if we prayed with you before you go in?" They accepted. With tears streaming down his face, he thanked God for them and prayed that God would give the doctors guidance during this procedure. He also reminded God of how much La Petite Belle loves Him and that we knew He was a good Father and wanted good things for her.

The doctors shook our hands and headed to the OR. Beau and I went back to La Petite Belle's room to wait. We sat in silence. We cried. We prayed.

Another 45 minutes later, the surgeon and the GI doctor walked into our rooms, smiling. They said, "Good news!" I breathed a huge sigh of relief.

They GI doctor was able to see the source of the bleed because, apparently, La Petite Belle vomited the hematoma and blood that was covering the bleed. Where the clips were placed, there was an area that was just dripping blood, like a leaky faucet. She cleared the way for them to see the bleed endoscopically after all. No "emergency" surgery was needed. We thank God for that.

It was not the day we expected, but also, not a day that we've been unfamiliar with. We have experienced several life-threatening times with our girl. Scary moments. Moments no parent should have to ever experience. We pray that this was the last of these moments.

I've come to realize that you can be scared and trust God at the same time. Sometimes life is just scary. We know our God is always for us and loves us dearly, and we throw all our trust in Him during these scary times.

Notice this Scripture says "when" I am afraid ...

There are times where we are going to be afraid and have fear. What's important is how we respond to it. We can't drown in fear; we must bring our fears to God, lay them at His feet, and trust.

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: www.gofundme.com/Katieg.  All funds go to cover medical bills and expenses.


Tuesday, August 9, 2016

"Ugly"

That's the word that La Petite Belle used to describe herself. It broke my heart, because all I see is beauty and strength when I look at her.

She was chosen to carry the torch in the hospital's celebration of the opening ceremony of the Olympics. When she asked, "Why me?" The answer was "because you're a champion." She has been working SO hard in physical and occupational therapy, sitting up at the edge of the bed or a wheelchair for three hours at a time, and then at least one other time throughout the day. She's really pushing herself harder and harder each day. There's NO DOUBT that she is a true champion and totally deserved to carry that torch.

I had to sign a photo release form so that they could photograph her. I asked La Petite Belle is she was OK with that. She said she was.

I have avoided posting tons of pictures of La Petite Belle as she's been in this fight because she doesn't look like her old self. The steroids have done such damage to her body ... major damage to her skin and, of course, the "moon face." The swelling will go away with time as she gets off of the steroids, but that will still be slow. And, the scars on her skin will fade, again, over time.

She decided that she would work on fixing her hair and even put on makeup for the ceremony. When she looked in the mirror, she said she was ugly .... that her face was fat, her hair was thin and didn't look good, her skin was covered in stretch marks and bruises, and so on and so forth. 

If she only knew how beautiful she really was.

After I told her that she was definitely not ugly, but beautiful, she said, "Mama, I see the way people look at me."

That broke my heart even more. 
I knew it was true because I've seen the way people look at her.

People don't mean harm, but when they look at her, they see a sick child.
She's so much more than that.

It broke her daddy's heart even more. What he told her was so good ...
"People are shallow. They don't think about what others have been through. I promise you, that anyone who sees you and knows your story, will see only a beautiful young woman who has faced things in her life that no one should have to face. And you conquered it. And, one day, you'll meet a man, and although you may hate your scars, he will love and cherish them, because they will have given him the best gift of his life:  you."

Here's the video of her torch-carry ...
video

I knew that people would look at her and see someone they didn't recognize. But, she is the same person she was ... witty, funny, compassionate, and definitely beautiful. 

As I type this, we are currently back in the ICU for another GI bleed. Because the bleeding isn't stopping, the doctors will do another scope (her 6th one since we've been here) today. We don't know what each day holds here, each moment. One day, our girl is rolling around in her wheelchair passing out candy to the nurses on the floor and spiking the ball to her therapist and the next day severely bleeding with low blood pressures, needing to come down to ICU. Things can change so quickly.

The only thing we do know is that despite how much things change here, our God never changes. His plans are always good. He is always faithful. He always heals. He always loves. He always carries. We are hanging on to every bit of who He is and trusting Him as we continue down this road.

Thank you all again for your love and support. Your prayers mean the world to us and to La Petite Belle. Please pray for a great report again from this scope today and more improvement.
If you would like to financially support Katie's (aka La Petite Belle) journey to healing, you can find more information here: www.gofundme.com/Katieg.  All funds go to cover medical bills and expenses.