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:  All funds go to cover medical bills and expenses.


Billie Brinkley said...

"The eyes of the Lord search the whole earth in order to strengthen those whose hearts are fully committed to him." 2 Chronicles 16:9 Praying for a strong heart...

angelbear617 said...

My sweet Gabrielle who just finished her two years at XMC/CLC talks about Katie and asks for prayer for her often. I cannot imagine how hard that is for you as her mother to "be patient" easier said than done when it's your beautiful sweet girl you see hurting. Praying for Katie's kidneys to begin to function as God intended. Praying for peace, strength, and comfort for you. Being "just a momma" is a fierce thing to be. From one mom to another, I get it. To balance the anger, frustration, and exhaustion with joy, peace, and rest must be a daunting task. But we know God is faithful, He who began a good work in you, in Katie, in your family, will complete it. Be stil and know that He is God, sometimes you just gotta crawl into His lap and rest for awhile. Praying Katie gets her miracle. Keep your strong faith it is inspiring to others. No one knows or understands why certain kids are picked for this kind of journey, but His ways are higher than ours and I guess this is where the just trusting Him part comes in. I cannot fathom this journey you are on. Hugs, love, and prayers from one Southern momma to another! May blessings and favor surround you. May His peace that passes all understanding guard your hearts and minds today and every day!
Love in Christ, Lisa Serigny