Wednesday, July 20, 2016

The Question No Parent Never Expects To Be Asked

Since I've last posted, La Petite Belle has been back to ICU twice. We're currently there today. The last visit was short. We had gone back up to the BMT floor, and then less than 24 hours later, La Petite Belle had another GI bleed.

This bleed seemed to be worse than the one that sent us down here about a week ago.

We went through yet another traumatic transfer down to ICU ... extreme blood loss, blood being pushed, calcium being pushed, very low blood pressure, non-responsiveness, paleness, and then vomiting.

At one point, she went into "v-tach" ... leading to the crash cart being pushed to the door, and doctors and nurses rushing in. To say it scared me is an understatement. They pushed more calcium and bicarb and she leveled off. They think it was due to her electrolytes being all off balance, so probably not a true "v-tach".

With that all said and done, the ICU doctor posed this question to us:
"If this happens again, and Katie's heart stops, would you want us to perform CPR?"

I felt like my heart was the one that had stopped.

For some reason, I just stood there, staring at him. I couldn't even comprehend the question. I didn't understand the question. I looked at Beau and K Belle, who has been here for her break, and still didn't know what to say.

The doctor said, "You don't have to answer right now. I just know you guys have been here a long time and have seen a lot. I have to ask the question."

Beau looked at me and said, "Yes, do CPR. We're not ready to give up yet."

Of course, the answer is yes.
I don't know why I couldn't say it.
I was worried ... Would this be the way God would heal her? Would He want me to say yes? What if I said the wrong thing and God wanted to take her home? What if I messed up this very important answer?
Of course, save my daughter.
God knows what our answer would be. He knows we want our child to live and not die.
Honestly, He can move regardless of what our answer would be.

Thank God we didn't have to worry about CPR because the incident didn't happen again.

La Petite Belle's bleeding seemed to subside soon after we got down to the ICU, just as it had before.

Yesterday, she had another upper and lower scope, number four to be exact. Same old search for answers. However, this time there was an area at the base of her stomach that they were able to clip, a large ulcer. They weren't able to see past that area so they said if there were other areas, something else would have to be done. But, if this was the area, which we're praying it was, then it's clipped.

Her stomach is still very fragile and sensitive and did bleed as they took biopsies. The base of the stomach seems to be the worst. Her esophagus and colon looked great, as did the very end of her small intestines. It's the area in between that they were not able to see, but somewhere between that ulcer and the bottom of her small intestines is where it all improves. I hope that it's right after that ulcer!

Biopsies were taken to check for viruses and GVHD status. Not sure when we'll get all that back, but believing for a good report!

The day La Petite Belle was sent to ICU the time before this was also the day K Belle came in from Australia for a visit during her break. Although it's been disappointing that they haven't been able to spend as much time together as La Petite Belle had wanted, it's been so great to have K Belle here. 

La Petite Belle made a sign to welcome her sister home even though she had a large GI bleed that morning.


As soon as La Petite Belle saw her face, she started crying. There have been numerous moments during this visit of them just holding hands and La Petite Belle caressing K Belle's face and hair. She loves her so much and misses her immensely. K Belle seems to be a huge comfort to her and really helps to calm her.

K Belle has spent as much time at the hospital as she could, even staying the first night, all night in this chair since there are no beds in the ICU rooms here.


Beau and I got to spend some of our own time with K Belle as well. Again, not as much as we'd like, but some time nonetheless.


Right now, La Petite Belle is back on the list to go upstairs and, in true 8th-floor style, they're full again. So ..... we wait here again. We were hoping that she would have one sleepover night with her sister, but the doctors just left the room, saying there are still no rooms, leaving La Petite Belle disappointed yet again. K Belle leaves tomorrow evening. I expect there will be many more tears from all of us at that point.

Beau and I are headed back to our hometown this Saturday for a benefit being held for our sweet girl. I am hoping she's outta this room tomorrow so that the friend we have coming from Lafayette to stay with her while we're gone will get some good hangout time with her.

Thank you for continuing to pray, believe, and stand with us for complete healing for our sweet girl! We're just catching our breath each day and moving forward onto the next day. God continues to prove Himself as a faithful Father, caring for us all as we walk through this journey to 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, July 5, 2016

New Mercies

The faithful love of the Lord never ends!
His mercies never cease.
Great is His faithfulness;
His mercies are new every morning.
Lamentations 3:22-23

That last line of these verses has been playing over and over in my head.
It's something we, as church-going people, hear all the time.

His mercies are new every morning.

New.

Every morning.

Not the same mercies He extended to you yesterday.
Or the day before.
Or the day before that.
And so on.
And so forth.

His mercies are new.

His mercies are the mercies that you need for that day.

When I buy a new dress, it's one I've never worn before ... one I've never used. It's brand new.
That's the same with God's mercies.
He gives you mercies ... not just a new mercy ... but, plural ... MERCIES.
Think of how many new mercies He bestows on us each day that we are not even aware of.

His mercies are immeasurable.
How many thousands of mercies has He given to us every day? New mercies, not old ones.

Every morning, my prayer has been that God would grant us new mercies for the day ... mercies for our sweet girl and her healing. He knows what she needs. He knows what we need.

I'm beginning to wake up every morning, thanking God for the new mercies He will give us for that day, knowing He will take care of us.

Today actually marks six months that La Petite Belle has been inpatient at Texas Children's Hospital. In the past, I heard people say they'd been in the hospital this long and I thought there's no way I could do that. But, here we are. You do what you have to do.

We made the best of our time here yesterday for the Fourth of July. Beau and La Petite Belle made decorations for her room. I prepared some snacks that she could eat. And, we all just did our best to distract ourselves from the situation and La Petite Belle from any pain or discomfort.


We see La Petite Belle grow in strength every day. Today, she was able to scoot herself into a wheelchair, with some help. Her physical therapists said she wasn't ready. Her legs still aren't strong enough to stand on. However, she insisted that she could get in the wheelchair. And, she was right. Despite what they told her, she did it, even wheeling herself some through the unit. The fact that this girl is tenacious is definitely to her benefit. And, most definitely, if you tell her she can't do something, she will push harder to show you she can.

Physical therapy usually wipes her out for the day and she napped all afternoon.

We continue to wait on these kidneys to wake up fully. Her levels haven't been too bad and she was able to only do three hours of dialysis on Saturday rather than the usual four. The next step would be to be able to transfer her to only three days a week. She has had tiny bits of urine so we'll be thankful for anything right now.

She still has quite a bit of pain. This is the hardest thing for us, as her parents, to deal with and continue to watch her face. We pray every day that this would subside, that she would continue to grow stronger, and God's healing would be complete in every part of her body as He grants her new mercies every day.

Thank you, once again, for your tremendous support and prayers. We love you all and thank God for you.

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, June 29, 2016

What does it all mean?

I have written before that I DO NOT believe that "everything happens for a reason". I have also written about how I don't ask "why" anymore.

There really are no answers when hard things happen in our lives.
We WANT there to be answers, so we search for meaning. Obviously, there HAS to be a reason for everything that happens, right? Wrong. Life happens. God is always in control. And, the "meaning" comes from how we handle the journey. The "meaning" comes from the choices we make as we seek an all-powerful God to lead us and help us navigate the bumpy, winding road. God always shows up. He will never leave us stranded.

That's where we find ourselves today ... stranded ... like an old, broken-down car on the side of the road. We are broken, out of fuel, hoping to get back on the road again. The road of life for us lately has been filled with huge potholes and we've ended up at very unfamiliar destinations. 

We continue to press on, but our hearts are quite broken over the loss of Beau's new job. Yes, he lost his job. We honestly thought we had found a new home with new family and friends ... a new home for our baby girl once she leaves this hospital. I am in total shock over the situation.
I'll let Beau's Facebook post speak for us:
I have been steadily employed full-time since 1995. This past Saturday, that all changed. I will not go into detail as to what happened, to protect the dignity of all involved, so please don’t ask. Suffice it to say, I was doomed from the start.
I do still have a part-time contract job that I am doing for a wonderful church in the area.
I am low, hurt, and confused. I want to be the best husband, daddy, and provider I can be, and the admiration of my family means everything to me.

I am mostly hurting, because, while I’ve been at work, I’ve left the majority of the heavy lifting of Katie’s care to my wife. Yesterday was an eye-opening wake-up call as to what all is required in the day-to-day. I spent a good part of the day in tears. I had to apologize to Daphne for leaving her with this task as I went off to try to “create a life” for us.
But I’ve realized that our life is with our daughter in the hospital, and so I have decided to not pursue full-time employment for a while, so that I can help take care of Katie. We have some money set aside, so we will just depend on that for a while.
Thank you for your continued prayers and support. They mean the world to us. Pray for me, specifically, to have clear direction, as a man, as a husband, and as a father. I am completely heartbroken over this.
We love you all. I love you all.
So, unfortunately, we are back to square one. 
We are thankful ... yep ... thankful for a few things:
1. The part-time job Beau has
2. Money we had saved up, plus generous donations
3. God's grace

Yes, I see this as God's grace. I know that He's guiding us. We earnestly seek Him for direction. I don't know what the future holds, but He does. So, I will trust that this happened because of His grace and protection. Why it happened this way?? ... No idea. It doesn't make sense to me. Nothing much does anymore, but I trust Him to continue to provide and guide us.

Where do we go from here?
Again, no idea.
We were so close to looking at homes to purchase in the area near this new job. We looked at neighborhoods, schools, etc. Now, where we will live is a mystery. Day by day, day by day ... breathe.

As far as our precious girl goes, we are actually out of the ICU. YES! Imagine that?! We were in our 8th week there. A room finally became available on the 8th floor ... actually the room we've spent the most time in. La Petite Belle has made some great strides and is as tenacious as ever. 

She has been amazing in working with physical therapy. She is sitting up for longer periods each day and I can tell that she is getting stronger. Physical therapy is very painful for her, but she has been able to push past it and does even more than they ask. According to PT, La Petite Belle has a lot of rehab to go through before she can get out of the hospital. As of last week, they said it will probably be another 2-3 months before she's strong enough to leave the hospital. But, the way she's pushing through more and more each day, I'm thinking she will surprise them all like she always does.

While she still continues to have some nausea and stomach pain, her GVHD is better. We pray that it continues to improve more and more each day. The doctors continue to wean her steroids and other meds and have actually discontinued quite a bit of them. They were also able to take her off her intravenous nutrition, which greatly lowered the volume she was getting, allowing her to get off of continuous dialysis.

Our most pressing issue is still her kidneys. She continues to not make any urine, but they have transferred her over to intermittent dialysis. Instead of the 24-hour dialysis, she now gets 4-hour dialysis 4 days a week. 

The renal doctor told us not to be "too hopeful" about her kidneys recovering. Well, that's not gonna happen. We WILL remain hopeful. Hope is literally all we have. 
Like the old hymn says ... 
My hope is found in nothing less than Jesus Christ, my righteousness, I dare not trust the sweetest frame, but wholly lean on Jesus' name ... 

So, yes, I will choose hope despite what anyone says or what we may see right now. I choose hope. Choose hope with us.

Thank you for continuing to pray and believe with us! We appreciate all your support and love.
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, June 15, 2016

The Perfect Formula

I've been praying a lot for La Petite Belle. Every day, my prayers seem to be the same. I continue to seek, to ask, and to knock on that door. I will not stop. I will knock on that door to the point of annoyance. At some point, the door has to get opened for the knocking to stop. I know that if someone were knocking on my door for over a year, I wouldn't be able to stand the sound anymore. 

But, of course, I'm not God and I don't understand His ways most of the time. His ways are bigger than my pea brain can comprehend. I go round and round in my own brain about the "whys" even though I know there are no answers. I go round and round about the "whats" and "hows" and "whens" too, not knowing those answers either.

There are honestly days when I feel that God is silent to my prayers. I know He isn't. I know He hears. But, our circumstances, at times, seem hopeless and just plain sad. The ups and downs are exhausting. There are days I don't know what to think. I try not to let my mind take over too much and to simply take all thoughts captive. That's pretty hard when you're sitting in an ICU hospital room all day, all night ... when you continue to see your child suffering. You question where the "good" is in all of it. And, you know God would NEVER plan this for a child and He could step it at any moment. But, still you wait, knock, and hope.

Beau and I talk often about what we've each been praying and about thoughts on our life situation and La Petite Belle's healing.

I told him yesterday that I wish there was some perfect formula to my prayers that would cause La Petite Belle to be healed and outta here ... that maybe I'm doing it all wrong ... maybe my prayers aren't right ... maybe I'm not holy enough ... maybe if I were better at fasting ... maybe I don't rebuke the enemy well enough ... maybe I'm not as close to God as I thought I was ... maybe, maybe, maybe.

I realize there isn't some perfect formula.
But, these days, these are the kinda thoughts I have.

If La Petite Belle's healing hung on how good I was or how perfect my prayers were, she'd be in sad shape.

If anyone's healing was dependent on us, we'd all be in sad shape.

There's NOTHING more that I can do than what I'm already doing. That's hard for me to come to grips with. As a mom, I want to just fix it for her. Every day I have new ideas and questions to ask the doctors. La Petite Belle has told me to stop making suggestions. I just can't help it. The ability to solve problems is what moms do best.

When I look in the Bible, EVERY time people went to Jesus for healing, He did only one thing:
He healed.
Every. Single. Time.
He was ALWAYS willing and never turned anyone away.

And, there was no perfect formula.

In fact, the only things I see each person doing are:
Asking Jesus to heal.
Believing that He would.

That's it.
A lot of the people He healed weren't church-goers (synagogue in those days) either.
Some were even those dastardly Samaritans.
Some were what most would consider unholy and not good enough.
They didn't pray at all, much less fast.

And, what did Jesus do? He healed them.
He told them their "faith" made them well. They believed He could heal.

Basically, we're in the same boat.
WE ALL (especially La Petite Belle) believe Jesus heals.
La Petite Belle's faith has remained strong through all of this. If you ask her today, as she lies in a bed in the ICU, whether she believes God is healing her, she will absolutely tell you "yes."

This hangs on La Petite Belle's ICU room wall.

It's a reminder that the faith we've had all along is the same faith that believes Jesus always heals.

There is NO perfect prayer formula or anything I can do for my daughter's healing than to simply follow the example of all of those healed by Jesus ... Ask and believe.
Seems simple. And, these are the things we do every day.

We do grow weary, of course. This has been a long road and we've been through the gamut of emotions. But, ultimately, I know that I don't see everything, and God does. So, I'm trusting despite what my eyes see. That's actually the definition of faith. Is it easy? Seems like it should be. 

But, in circumstances like this, it is definitely difficult at times. I've cried deep cries and had some emotional talks with the Lord about all this. 
I always come back to the same conclusion: God is good and He is a healer.
I may not ... actually I should say I DON'T ... understand His ways, but I have to trust Him anyway.

As far as an update on La Petite Belle goes ...
She's pretty much the same as my last blog post. The only thing different that has occurred is that they think she might have a bacterial infection. She had very low blood pressure and extreme shaking yesterday. She was also in more pain. Blood was drawn for cultures and now we're just waiting for them to come back. They did start her on a couple of new doses of stronger antibiotics, just in case. Of course, these can be harmful for the kidneys, so they're watching the levels carefully.

Continue to pray for these kidneys to wake up. Again, this is what is holding us down here in ICU, and causing her to become more weak due to her being in the bed for so long. I want to just SCREAM at these kidneys to stinkin' WAKE UP! And, I may have scolded them "in Jesus' name", of course. But, something's gotta give here. Enough is enough. I know that the enemy is loving this and that just makes me even more angry. 

Thank you for all your love, prayers, and support. We are thankful for each of you, who, whether you know it or not, play a part in helping us through this.
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, June 10, 2016

Repetition - A Day in the Life

I could probably title every post I write as "Exhausted."

That's literally all I feel. That would get repetitious.

But, our lives have become just that ... repetitious. It's the same thing every day without much change at all. It was that way on the BMT floor for months, but it's definitely worse now in ICU.

My day starts and ends the same way most every day.

I wake up and throw on some sort of workout pants, t-shirt, and tennis shoes. I pull my hair back into a ponytail and put on only enough make-up to make me look alive. I pack up my backpack and anything La Petite Belle might want from the apartment and head over to the hospital.
(Because she's in ICU, the only option available for sleeping parents is recliners in the waiting room. We used them the first two times we were in ICU and knew that the use of them for an extended stay was just not gonna work. Talk about exhaustion! Every night we return to the apartment to sleep.)

Beau heads off to work most every morning, but is able to sit with La Petite Belle some mornings/days. This is a huge break for me.

I make the short drive to the parking garage and then make the trek to the hospital ... third floor, ICU. I check in and get my daily "I don't have flu symptoms" sticker and my badge that allows me back in the room. Only two visitors are allowed in the room at a time and must have the badge. At this point, I walk in and the receptionists don't have to ask what bed number badge I need. They know me.

I pass through the waiting room. I pass by snoring dads and grandpas. I pass by moms weeping. I pass by chatter filled with medical terminology. I pass by friends and family holding each other, consoling each other. I pass by new parents getting the speech on how the ICU works.

I get to the hand washing station and wash up, then press the intercom button to have the door unlocked. 

I head to La Petite Belle's "room", or should I say "bed" ... Bed 29. Today marks five weeks she's been in this bed.

I talk to her nurse, ask about the evening, go in and let her know I'm there. 
This is the start of her day. She's just starting to wake up.

She gets physical therapy late morning. Before that, there's all kinds of other things that have to happen: she has to get off dialysis, she has to take her oral meds, try to eat a little something, and MOST importantly get her pain and anti-nausea meds before they start. I feel like I have to get with the nurse whom we haven't had in days or weeks and review the plan with them so that they are up to speed on everything. It's SO easy when we have the same nurse multiple days in a row. That does happen, but not enough, in my opinion.

Physical therapy is a chore for her. She's in pain and she's going to be in pain until she is stronger. I'm not sure if I've been clear about how weak our once-super-strong girl actually is. La Petite Belle is unable to hold herself up due to weeks of being in the bed. She can sit up in the bed with the support of the bed, but cannot hold herself up. Therapy for the last couple of weeks was just getting her to sit at the side of the bed with her feet hanging off the bed. The compression fracture in her back has made her pain pretty bad at times, mostly during physical therapy. She has been able to move to the side of the bed with help and support, then hold it for short amounts of time. She does exercises lying down in the bed also to try to strengthen her legs and arms. She's also been having some neuropathy in her feet and toes. That's another thing she gets pain meds for.

Now, the last couple of days, the goal has been to get her from a lying position in the bed to a reclining wheelchair. The therapists physically move her from the bed into the chair that is actually flat like a bed. Then, they slowly begin to elevate her head and back, while lowering her feet and legs into a chair position. This whole process is difficult and painful for her. It's extremely hard to watch and to hear her moan or scream in pain as her parents. There are days when she says she can't do it, but we make her do it anyway. Each day she doesn't do therapy or sit up is a day she gets weaker. Each day she does do it, she's getting stronger.

Today, she was actually able to pass and kick a beach ball while in the chair. This was huge. Every day, they try to push her a little bit more. Even if everything else was going great with her condition right now, we wouldn't be able to leave because of how weak she is. She HAS to be able to sit up and be stronger to leave.

When she gets back to the room, the transfer back to the bed is just as hard as the transfer to the chair. Once she's settled, I try to get her to eat something.

You see, her GVHD has improved. That's something to be thankful for. She's actually been able to eat a little bit. The only problem is she says that nothing has a taste. EVERY SINGLE THING we try of the foods she can eat ... no taste. It's frustrating for her and for us. Eating is something that should be enjoyed and give her some comfort and she's not able to have that. We want her to eat to see how her stomach will absorb nutrients and then her IV nutrition could be reduced. The doctors say she will probably be on IV nutrition for a while until they know for sure she's absorbing. They are starting one of her IV meds orally today and then will check her levels on it. That could be the sign to show us she is or is not absorbing. (My idea ... I told you I'm like a doctor now.)

The rest of the day includes waiting for doctors and trying to make La Petite Belle comfortable and distracted. The days are long.

(in the corner of her room where I get to sit every day)

(my view every day)

The nurses are great and one amazing nurse rearranged her whole room to give her a different view. Now, she can see out the window. When her BFF came to visit yesterday, the nurse had bought decorations for them to use to brighten up her room.


That was a great day. I thought seeing her friend would make her super emotional. She had cried the day before the visit, saying, she "always wanted to be a role model for her," and "like a big sister because she didn't have that like she did" with K Belle. I promised to bring her friend over for a very long visit when La Petite Belle makes it outta here.

She misses her friends and her people from back in Louisiana so much. Visits are a bright spot in her long, dreary ICU days.

I don't think I realized how much La Petite Belle has changed until I saw my friend's reaction when she saw her yesterday. To me, she looks like she has been looking the last few months, but I see her every day. After months of not seeing her, it was emotional for my friend, who has always been close to my sweet girl too. I don't think La Petite Belle thinks she looks much different. She knows she's changed, especially thanks to steroids. Her puffy face is the most significant change that people see.

As she rode in the wheelchair on the busy third floor yesterday, out in public, for the world to see, there were pity stares. It didn't bother me at first. We got that when she lost her hair or had to wear her mask. It wasn't a big deal. But, at one point, I just wanted to scream ... "This is not who she is." When people look at her, all they see is a very sick kid. They wonder what's wrong with her, what's her story.  They feel pity. I don't blame them. But, I want to tell them, "She's SO much more than this!" I could give you a list of things that describe her, but "sick" is not one of them.  Just writing about this makes my eyes swell up with tears, so let's move on.

Sometimes La Petite Belle is up to watching a movie, sometimes nothing. Some days she just wants to nap. Last week, she gave herself a manicure. But, every day I encourage her to do something. Sometimes I succeed; sometimes I don't.

By evening time, Beau arrives at the hospital from work. We talk, try to spend more time with our girl if she's up to it. Shift change happens. We make sure La Petite Belle is good and tucked in ... make sure she's got her phone, her bunny, her eye mask, and any other things she might need overnight. We tell her, once again, how AMAZING she is and how GREAT she's doing. We read her devotional and pray before she goes to sleep.

We make the trek back to our parking garages and head back to our apartment. At that time, I know I have a good hour or two to eat, bathe (FINALLY a good non-hospital tub!), maybe do some laundry, clean up a bit, and watch some TV.

Then, I go to bed and do the same thing the next day.

As for more of an update on La Petite Belle's progress ...
Yesterday, a meeting was held between the BMT docs, renal docs, ICU docs, and physical therapists to create a consistent plan for her care, to make sure everyone was on the same page. I was brought in there at the end so they could discuss it all with me. 

The plan is that she needs both physical therapy and dialysis every day. Those are her biggest issues right now ... acute kidney injury and overall muscle wasting/weakness. 

Of course, the kidney issue is really starting to worry me. I know I shouldn't worry, but that's really hard for a mom to not do, especially in our situation. I fluctuate between worry and strong confidence every day. I know God is in control. I'd just like Him to control it my way if that could be possible. But, I'm trusting in who He says He is ... loving, good, mighty, all-powerful, sovereign, righteous, faithful, Provider, and ALWAYS Healer.

Until La Petite Belle is able to produce urine (yes, she is not peeing right now and really hasn't since she's been in ICU ... hence, the fluid overload) or they are able to reduce her IV nutrition and meds, she will have to stay on the CRRT (24-hour dialysis), only coming off for two hours each day (minus weekends) for physical therapy.

Thank you for continuing to pray and stand with us for our amazing girl's 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.

Sunday, June 5, 2016

Five Months

It's hard to believe that today marks five months since La Petite Belle has been inpatient at Texas Children's Hospital. Really hard to believe.

I still have to remind myself daily that this is real. Our life has changed. And, changed drastically.

I walk outside and immediately think of how much La Petite Belle would enjoy the sunshine, fresh air, birds chirping, and the smell of freshly cut grass.

When I wake each morning, I think about how I'd love to hop up and cook up some breakfast for her and plan what we could do for the day.

I think about how we never got to go to the movies or shopping to spend her Christmas money, as planned, after Christmas, because she got sick.

I look at all the social media posts about her friends getting their driver's licenses, going to dances, and attending summer camps, and it makes me sad that she's not getting to do those things.

These are the kinds of thoughts that run through a mama's head on a daily basis when her child is fighting for her life in a hospital bed for what seems like an eternity.

I still cry. A lot.

I wish it wasn't so. I wish I could be much stronger. 
I will never get used to this kind of life that we're living. I will never get used to seeing my daughter hurting. Never.

As Beau said last night, while I was crying yet again, "You're just a mama."

So true. I'm just a mama who wants her child healthy, not hurting, enjoying a normal life.

That's all.

I try to be positive.
I ask the doctor's for the "best case scenario."
I find things to be thankful for each day. I encourage my daughter to do the same.

But, this doesn't get any easier.
Time doesn't help. It makes it worse. It makes it harder.

Don't get me wrong. I still trust God. I still believe He's here with us. He's not forsaken us. He's holding us through all the hurting and all the pain. Why His plan doesn't look like the good plan I have in my head I'll never know. But, I have no other choice than to trust a loving Father, who is always faithful and always good.

But, it doesn't make things hurt any less. It doesn't make me less exhausted. It just gives me hope that there is something better and beautiful coming no matter how impatient I am waiting for it.

{Sidenote: If ONE MORE doctor utters these words, "we just have to be patient" or "this is going to take time," I'm going to throat-punch them. Ok ... probably won't throat-punch, but I have told them to NOT EVER say those words to me again. Yes, I have. Each doctor. Every doctor. Every new doctor. Because dadgummit, I HAVE been patient. I mean, do we really have a choice? Don't worry, the doctors love me here. I just peaced-out rounds here in the ICU with, "That's all I have for you today" like I'm in charge. I got laughs so I think they get me.}

La Petite Belle is still as sweet as ever. Each day, I see more and more of how thoughtful she is. She started working on doing her nails. This was a two-day event due to how shaky her hands still are from the steroids and how her vision is somewhat blurred from the other medications. But, she got them finished and each day offers to do the her nurse's nails "if she has time." It's cute and funny because her nurse never has "time" because she's so busy taking care of La Petite Belle. I told her I'd rather the nurse not sacrifice her care because she's giving her a manicure.

I also try to focus on how many other people and parents who are going through and fighting similar battles. I pray for them. I hurt with them. That's what we do when we're in this kinda life. We see each other and we truly know each other's hearts.

So ... here's the latest update on La Petite Belle's progress ...
Yes, we are STILL in ICU. The reason we're still in ICU is again because of her kidneys and this CRRT (Continuous Renal Replacement Therapy) that can only be done here. She seems to go off and on. She did tolerate the intermittent dialysis, but they were not able to pull as much fluid as they would've liked to. So, now she goes on CRRT for two days and off a day, mainly so she can get some good physical therapy in. Since she's been here, our very strong girl has gotten very weak. Right now, she needs help sitting up without the support of the bed. So, physical therapy is working with her to get her to sit up on the edge of the bed with her feet hanging off, working on trying to get herself to hold herself up. Meanwhile, I forgot to mention in the last update that she has a compression fracture in her back that she's dealing with, so there is some pain with the sitting and moving around. The fracture is caused by ... you guessed it ... STEROIDS. I have developed a love/hate relationship with steroids. They save lives, but damage many other things in the process.

Speaking of steroids, they are continuing to wean them. Today, she will reach half the amount she was originally on. That is all good. Like I said before, her GVHD seems to be improving. We're taking baby steps toward drinking and eating tiny amounts of food that is easy on the stomach.

Her skin is also super sensitive and damaged from the steroids in many areas. As she gets more vitamins and the steroids are weaned, this should improved.

The main issue right now is getting these kidneys to work. It's been a month now that they've not been functioning. This needs to happen in order for us to move forward. And, as long as she's on CRRT, she has to be in ICU, so no moving to another floor until then.

Our prayer has been, of course, for complete healing of La Petite Bell's body for over a year now. Our specific prayer right now is that her kidneys would kick back in and work as God has designed them to work. She was such a perfect little baby when she was born. I remember every inch of her being so peachy perfect. I know that God created each part of her and knows every detail of her body. Our prayer is that her kidneys would work again and work at 100%. With this kind of kidney injury that she has (they call it "acute kidney damage/injury"), it can take days, weeks, months to recover. It's already been over a month and we are praying for increased function sooner than later. When you do think about our sweet girl, please join us in prayer for this healing.

Also, pray for strength ... strength in her body, strength in her mind, strength for Beau and me. Any ounce of strength that you may think we have only comes from God. I pray daily for just the strength to get through that day and each moment. 


Thanks for continuing to pray for and with us through this time. We appreciate every prayer, every message, every word, every gift.

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, May 31, 2016

Waiting is exhausting.

My entire day is centered around waiting.

I wake up and wait.
I wait until the time I go to bed.
Then, I wake up and do the same thing all over again.

I wait on doctors.

I wait on procedures. 

I wait on tests. 

I wait on results.

I wait on good news.

I wait on a breakthrough.

I wait for a good day.

I wait for healing.

It is exhausting.

Even when I sleep, I wake up exhausted.
My eyes hurt.
My body is tired despite the fact that I sit all day.
I sit and wait.

I always knew waiting was never easy. This is not the first time I've had to wait in my life. Waiting just seems to be a part of life ... a huge part of life. I just never knew how much it could consume your life.

Obviously this whole process has aged me. I look in the mirror and don't recognize who I see. I'm tired and old. Each day seems to age me six months.

I gave a couple of doctors the death stare when they each said how tired I looked after I had actually gotten a pretty good night's sleep. "You look tired" should be a phrase stricken from the English language. No one ever wants to hear it even if they are tired.

I've been so thankful for some good nights of uninterrupted sleep and a few hours to get a break out of the hospital each day thanks to my parents being here. It's been incredible having help. I always knew having someone here to help would have been huge, but now that I've had it for a few weeks, I'm convinced it's vital. Sad thing is that my parents leave tomorrow and I'm back to doing the majority of this hospital stuff on my own since Beau has to work. Thinking of my parents being gone just made me even more tired.

La Petite Belle is tired, more tired than ever. She's been stuck in ICU for almost a month. Her spirits are pretty low. She's sad and feels isolated from everyone, even her "8th floor family" (as she called them). Lying in bed for almost a month in the same room can be quite depressing. She continues to work with physical therapy when she can and definitely needs to build her strength back up to get out of the bed.



Her kidneys are what's keeping us here in ICU. Until they show that they are gonna step back up and do their job, I have no idea when we'll leave. She is currently off the CRRT (24-hour dialysis) and has been tolerating intermittent dialysis daily (3-4 hours). The renal team is still discussing what the next step will be for her. Ultimately, the goal is that her kidneys would wake up and get to business and dialysis could be less often, and then for her to not need it at all. But, as of right now, we have to wait. There's no knowing when her kidneys will recover. We're praying and hoping for that to happen soon!

We are waiting for that breakthrough that will send us back to the 8th floor and the even bigger breakthrough that will send us home.

I'm hanging on to this Scripture and trusting the Lord for strength to just get through each day:
Those who wait on the Lord (trust in Him) will find new strength.  Isaiah 40:31a

We continue to pray with La Petite Belle and encourage her each day.

She received this precious prayer blanket from a church back in Lafayette.


Each ribbon represents prayers said for her. It lies on her bed and so many nurses and employees say how pretty it is. When they mention the blanket, she says, "You can say a prayer if you want." Of course, they all do ... some out loud, some silently. La Petite Belle continues to express her faith, even in her weakest moments. She's even got the nurses praying! Whether they pray on a regular basis or not, she doesn't care. It's interesting to see the expressions on people's faces when she says they can say a prayer and tie a ribbon. Sweet girl.

Thank you for continuing to pray and stand with us. #PrayForKatieMac

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.