Monday, July 28, 2014

Transplant fixes everything --- or not....

Please don't misunderstand me.

I am beyond grateful for Annabelle's chance at life that her new-to-her heart provided. Without it, she would not be here today.

But it's (I think) a common misconception that a heart transplant is a "fix all" for heart problems. After all, her sick heart is gone, replaced by a healthy viral heart that is whole.

But this past week has reminded even me that transplant, while a miracle, introduces a whole different set of struggles.

Annabelle has been struggling with cdiff all summer. While it stinks (and she is more susceptible due to her not-stellar immune system) we can deal with it. It is "minor" in the grand scheme of things, even though it felt major at the time.

But meanwhile...three other transplant kiddos I know are having some very severe struggles, all of which make me very thankful for a relatively minor blimp on the radar.

Little Nicholas received his heart in March of this year, and is currently at Vanderbilt, fighting a type of rejection with all he's got. Over the last few days, he's been in very critical condition, and as of the last update, remains that way.

Sweet Hope has been waiting in Cleveland, OH for a heart these past months, and earlier this week, she got her miracle heart! I watched her mom's facebook page and cheered her on as she received her miracle, but then also watched as her mom posted updates of her struggles post transplant, her body not adjusting well to its new occupant. As I type (Sunday night) she is in very critical condition. She had over an hour of CPR the other day, and they are unsure of the extent of the damage to her brain and kidneys that caused. She's also having regular seizures as a result.

And I just got word that a little boy near and dear to our family's hearts, baby (I mean-- big boy!) Witt, is back in the hospital. Witt was the first child I knew to receive a heart transplant, as we were in the ICU when his heart came, and watched their struggles and triumphs from across the way. I've gotten to know his parents, and they are just amazing people. Well, Witt started running a high fever and was brought in to the hospital. They thought it was pneumonia, but he had no other classic symptoms. Then they thought it might be a dreaded condition called PTLD (basically, transplant induced lymphoma, but it is SO much more complicated than that.) But they have all but ruled that out at this point, going back to probable pneumonia. Regardless, pneumonia stinks in any person, but transplant kiddos have a SUPER hard time kicking stuff like that.

These three sweet ones need lots of prayers this week, and I know their families would appreciate it!

As a note, Annabelle seems to be doing SO much better. While not back to complete normal, she is certainly on her way and the medicine seems to be helping. Mommy is REJOICING and praying very hard that the short bit of summer remaining before school starts would be filled with HEALTHY kiddos and FUN times.

I feel like this is a bit of a bummer of a blog post. My apologies for that, as I try to keep it light hearted most of the time. (I'll do a funny one on Thursday, I promise!)  But ya know? I guess that's life, right? Sometimes it is raining, and sometimes the sun is shining.

I'm so thankful God is on his throne and working in all kinds of weather!!!!

Thursday, July 24, 2014

That Crazy Perspective Thing - Three Years Later


Her 1st birthday....
Three years ago yesterday, July 23rd, 2011, was a day I'll never, ever forget.

Annabelle had just celebrated her 1st birthday a few days prior.

The night before, she'd been a little puny and we'd toyed around with whether we needed to take her to the ER, but her oxygen level settled down and we figured we could wait and call cardiology in the morning to get their opinion.

In the middle of the night (early morning on the 23rd) Annabelle started screaming. She cried and cried. I did what I knew to calm her down, but nothing was working. I rocked, I let her cry it out for a bit. I gave her a pacifier, but it just kept getting more frantic. When rocking her, I started to really look at her and frowned. It was dark in her room, but something wasn't right. I turned on the light to realize that my baby was BLUE, and all the classic signs of respiratory distress were there.

I screamed for my husband to come in there. He woke from a dead sleep (he's a sound sleeper) and stumbled in, and helped me check her oxygen level.

My heart panicked when I saw those horrible numbers.

40. My baby was satting FORTY!

She was on oxygen 100% of the time anyway, on a low flow, so we cranked it up as high as it would go, 5 liters.

Her O2 sat climbed started climbing, so we got her carseat and started to frantically get her buckled in to take the 45 minute trip to the hospital.

But then her levels started to dip again, and she stopped crying, her eyes glassed over.

My heart was racing and my hands trembling as I grabbed my phone and called 911 for the first time in my life. All the time I spent in the hospital kicked in. I explained her Sats', her history, her non-responsiveness, but that her heart rate was still normal. I have no clue how I got all of that out in a way they could understand me.

A few days later....
A few minutes later, a paramedic barged through our door. He didn't even take time to look at her, just grabbed her in her carseat, grabbed her oxygen tank, and ran to the ambulance, me running behind.

They jumped into the back of the ambulance, yelled at me that I could ride with if I wanted, and a moment later, were racing down the street.

The first few minutes were a blur, but I remember hearing the paramedic tell someone on the radio that they would drive her to Vanderbilt.

Then a moment later, he dove for the radio and a flurry of activity and shouts came.

Instead of Vanderbilt, they drove to the nearest hospital and met the lifeflight helicoptor. When I got out of the ambulance, I finally looked at my then very blue daughter in the back to see paramedics giving her chest compressions and trying to blow air into her lungs.

I stood there, arms clasped around my body, shaking.I didn't know how to pray. I didn't know how to think. I just... I just stood there.

Finally the lifelight doctor came out and told me she'd stabilized Annabelle, got her heart rate back up with some epi, and had intubated her in the ambulance. They would immediately transport her to Vandy Children's.

The helicoptor pilot told me they don't usually let parents ride with, but he would let me if I promised to be calm.

I promised, and I was.

No one ever did figure out what exactly happened to Annabelle that night. One doctor said maybe it was pneomonia, but that was a guess, and not really super likely. They treated her for rejection of her heart, just in case, even though it was not a classic case. We just know that for some unspecified reason, her heart wasn't functioning well, her lungs were completely full of fluid, and my sweet daughter had almost died at home.

We came home around 2 weeks later.

Thankfully, that was the last "big" scare we've had. Since then, we've wrestled with an unimaginable number of virus's, spores, bacteria, and other issues that have kept her in and out of the hospital.

And go figure.....

July 23, 2014... 3 years later!
Yesterday, on the 3rd anniversary of that most horrifically scary day.... we found ourselves headed to the emergency room at Vandy Children's.

Thankfully, it wasn't anything nearly as scary. The thinking is that her CDIFF has made a comeback, because the night before she was vomiting and having grossly watery stools again to the point that she'd become dehydrateed.

Sitting in that room almost ALL day tonight... it was amazing to think how far we've come from those times early on.

I'm so thankful beyond words that we're not dealing with something more serious right now. I can look back and remember those scary times and realize that these blimps in the road are nothing in comparison.

Perspective is a crazy thing.

I gotta tell ya though: While I'm super thankful and having this perspective yesterday really helped me to deal and cope better...

Cdiff still stinks.

It really really does.

(and yes, for those of you familiar with cdiff... the "stinks" pun was totally intended.)


Discussion: What has God used in your life to give you perspective?

(I'm writing this in the middle of the night, by the way... because they allowed us to come HOME instead of admitting her, but I have to give her fluids every hour, as she IS dehydrated and we need to get some water in that girl!! zzzzz... it's gonna be a long night!)

Monday, July 21, 2014

HAPPY BIRTHDAY ANNABELLE!!!!

She's coming!!! (7/20/2010)
I can barely type this post without tears streaming down my face.

Four years.

Four years ago yesterday, I woke up after a night full of contracts and questioning if my "water" was still intact and went to work anyway. A quick visit to the doctor to make sure meant we were headed directly to the hospital, 2 weeks before my due date, and 6 days before our scheduled induction date.

At 11:15 pm, July 20, 2010, my 4th princess was born.

It was a day I'd anticipated but feared.

At the time, I had no clue if yesterday would ever come. If I'd ever be able to see my daughter's first week, first month, first year, much less a 4th birthday.

They worked on her for a few minutes, as she was much bluer than they wanted. Finally, they got her breathing well enough to put her against my cheek for a too-short kiss, then whisked her to the neighboring Children's hospitals.

Hours later, even though it felt like days, I was finally able to make the journey across the walkway to see my sweet baby girl.

She was hooked up to all sorts of foreign tubes and wires, but despite it all, she was my beautiful little girl.

7/21/2010 -- my first time holding my baby!!
At first, they didn't let me hold her. Hindsight, I would have demanded it. She wasn't hooked to a ventilator. Really, there was no good reason I couldn't hold her. I know that know, but I was so green, so scared.

We were told to expect a 4 to 8 week hospital stay. That was the norm.

She had a 80% survival rate for that first surgery. An 80% chance of going home.

Never in a million years, however, would we have anticipated staying in the hospital for ten long months.

Oh yes. I remember that day, July 20, 2010. I've quoted the number probably no less than 1,000 times (and perhaps double/triple that) to doctors/nurses/receptionists during med check, appointment check in, and calling in with a question.

My life changed with the birth of each of my children. As all Momma's know, it's just a fact. Your life is more enriched, more beautiful, more full, with your child snuggled in your arms. You can't help but change.

But Annabelle's birth changed me on a different level. It challenged me. It broke me. It brought me to the lowest moments of my life, made me face my worst fears.

6 days old... Just hours after surgery,
and less than a day before she crashed and almost died.
The day I gave my life to Jesus made me a new creation in CHRIST.

But the day Annabelle was born, I started the journey to understand exactly what it means to rely completely on the creator of the Universe.

It's not about me though, even as much as God changed me.

Annabelle's birthday is a day to celebrate a life God saw fit to save. A sweet little princess whom God loves, who has endured more pain in her short 4 years of life than I probably ever will in in all my years combined. Who laughs and giggles, even when she's sick. Who does cute things like yell at the door, saying "SHUT uh DOOR" then shuts the door and tells herself "hankwho" (aka thank you) Who tells everyone ELSE "happy birdday" on her own birthday. Who has lots to learn and still lots to catch up on, but has defied the odds and risen above her challenges.

I have no doubt that Jesus was with her in spirit the whole entire way. Cheering her on. Giving her strength, Wrapping her in his arms when she got tired.

Oh my sweet Annabelle. I fail you every single day. I know that. I fall very short on the "mother" meter as to what you need, but oh goodness. You thrive anyway. You love me anyway. You, my dear, are my sweet princess, and I'm so thankful for every single minute God has gifted you to us.

I have no idea what all God has in store for your life. I tend to live it one day or week at a time with you. But I know whatever it is, it will be great. It will bring HIM glory. And oh sweetie. Mommy prays that you come to the amazing knowledge that Christ isn't only your physical healer, but your Savior as well.

So, Happy Birthday (one day late) my sweet baby girl.

Mommy loves you more than I could ever express with words. And I like words. A lot:-)

A few pics of the birthday princess... (we had a small party for her yesterday, and will have another one combined with her cousin next Saturday with more extended family!)

She's come a long way.....


Coloring at birthday lunch is super serious business!

Look, I can break a crayon!!

I can't hear you.... la la la la la!
So it isn't grand... but it was made with love!! (don't laugh at mommy's dismal cake decorating skills!)

She REALLY got into present unwrapping for the first time this year!!

Her "big" present... that is also good therapy to build her leg muscles! She was a little nervous at first, but all my pictures blurred because she was trying to jump to try it out! SO cute!

THIS is how you celebrate a birthday! My carefree little girl!!!!!

This makes me cry. Literally, it was the first year she actually tried the cake! I mean, she just licked it, but she was really interested and kept saying, "Cake! Cake!"

Even opening cards can be super fun!!!

One last present from grandma and grandpa.... she had one good birthday!!

She was literally saying "cheeesee!!!" My big 4 year old girl now!!!!!!

Thursday, July 17, 2014

This Whole Faith Thing....

I grew up pretty much with a Bible in my hand and my rear-end in a church pew on Sunday morning, most Sunday nights, and many a Wednesday night too.

The "faith like a mustard seed" Bible verse should basically have been engraved into my skull considering how much I heard it touted.

When I decided to name the first of my Sandwich novella's "A Side of Faith" I figured the faith part would be simple. (and yes, I came up with the title before the story! Not something I usually do, but I liked the play on words with it's mother book, Sandwich, With a Side of Romance.)

I mean, it's just a wee little mustard seed, right?

Yet...

While faith at its core is simplistic, the execution of such faith is not necessarily so.

See, faith in the existence of God, for me anyway, is easy. I trusted in Him at an early age, I've grown up loving Him, and He's carried me through some of the darkest times of my life. He's met me there when I know I had no power to carry on, and He carried me. His existence is something I accepted and believed a long time ago.

So this isn't the "faith" I wanted to address in my book, not at this point anyway.

But what about having faith not only in God's existence, but in His love? His strength? His power to heal and restore? In His answering of prayers?

What if God did something that was the exact opposite of what we expected/wanted/needed?

For me, He's done this several times in my life, three big ones I can name easily. When He allowed my parents to move me three states away when I was sixteen years old... even though I was leaving all my friends and going to a strange new "world" that I was determined to hate from day one. When He allowed me to miscarry our second child, baby Abigail, which literally tore my young mother's heart in two. And when He allowed my sweet Annabelle to be born with half of a heart and struggle beyond what I could have ever imagined for her every breath.

I did not expect any of these.

I definitely did not want them.

And I would have argued until I was blue in the face against my need for such circumstances.

Yet... God was faithful.

Even in the bad, he brought joy.

I met some wonderful people in Minnesota, made some lasting memories (some better than others...) and while frustrated and at the end of my rope, stumbled upon a then-popular Internet Christian chatroom where I met my future husband. He whisked me away to North Carolina and has loved me well every day since.

Though my heart still aches for my sweet Abigail, just three months after she met Jesus, I conceived my little Lacy Emma Leigh. She was my sunshine, my ray of hope, my gift from God. God whispered to my heart that He has a special plan for her, a divine purpose, and I knew that He had brought joy from my suffering.

And Annabelle. Annabelle completely rocked my world. I am not the same woman I was almost four years ago. In some ways I am stronger, having been refined by a fire I never thought I would be able to endure. But in other ways I am weaker, as the fire exposed my vulnerable parts, leaving them bare and gaping. I've learned that being vulnerable isn't wrong or bad, it's just real.

Oh yes, Annabelle changed me. Through her I gained a glimpse of what real faith is.

It's believing in God even when your world is crushed to smithereens.

It's giving your life over to God, with nothing except an eternity with Him as a promised future.

Faith is bowing down, opening up your arms, and saying, "Not MY will but THY will be done, Jesus."

That's what I wanted to show in my book. At least a tiny bit. True, lasting faith is such a deep, raw issue, I knew I couldn't fully touch on it in a short novella.

But Rachel has to come face to face with her own fears. Her own past that she has set aside and said, "Never ever again" to.

She has to answer the question, what if God brings you exactly what you NEVER wanted? (or in her case, the epitome of the type of man she never wanted...)

Sometimes you eventually realize that even though you don't want it, it's exactly what you need.

Let's Chat: 

Has God ever brought you to your knees in your faith?

Monday, July 14, 2014

A Side of Faith: COVER REVEAL!

Oh I'm so excited about today!!

I've been anxiously waiting to be able to share the cover my cousin (aka awesome graphics guy who puts my fledgling Photoshop skills to utter shame) and I have been working on, shining and spit polishing it, all in preparation for TODAY!

Yup, it's cover reveal day for my first Sandwich Novella, A Side of Faith!


I'm so pleased with how it turned out! I absolutely adore my brown-haired Rachel and red-headed Cameron and can't wait to introduce you to them properly!

AND... on that note, I'm please to announce, unless something crazy blows up or my computer crashes or other odd unpleasant occurrence happens between now and then, I also have an official release date to share with you...

AUGUST 18, 2014!

Yup. Just a little over ONE MONTH away!

Of course, we'll also have a big ol' release week celebration on my blog complete with lots of fun stuff!

So mark your calendars and eee! Yeah... I'm just a little excited...

Thank you, all my readers, for your support over the last few years! I honestly could not be to this point without all your encouragement and notes of, "When is your next book coming out?" It has absolutely boosted my courage to get to the point I'm at today!

Wednesday, July 9, 2014

Back from the depths...

Oye!

I've been a neglectful blogger this past week or so!

I promised my kids last month we would "switch" their rooms and do a bit of redecorating. We allowed them to use a little money from their savings accounts (which they accumulate from Christmas/birthday money from grandparents) to let them make their rooms their own. It was well past needed... our house is on the small side for having 4 kids and they were a bit stuffed in like sardines, and had WAY too much "junk" that needed to be sorted out.

My original plan was to do it in small stages throughout the summer, making it a long project. But last week I threw that idea out because I was SOOOOOooo tired of it already and just wanted it DONE.

So I decided that I'd put all else aside for about 5 days and just get it done.

Um. Yes. Things didn't really go as planned.

Things have been so crazy that I didn't even get time to blog... BOO for that.

I've come to realize a handful of things:

1.) Annabelle is a pill. Oh, I knew this already. But during a home renovation, even a small one like we were doing, she is just, well, a pill. Every time I'd go up to the bonus room to work on it, she'd sit at the bottom of the stairs and scream and cry until I came back down. The first few days of my works were done in 5-10 minute increments because of that. I then took to pretending to go "bye-bye" and really going upstairs to work, while big sister babysat downstairs. That worked mildly well.

2.) I am awful at estimating time. I was thinking a day for painting one room.... But neglected to recognize that the drywall needed fixed, the walls were super dirty and needed cleaned first, the baseboards had to be repainted, and we had a total of 3 colors (including 1 being the slanted ceiling paint) so trimming out each was painstaking. One day of painting turned into more like 4....

3.) My kids are even less patient than me. I went into this thinking they would be excited to help, that since it was THEIR rooms we were redoing, they would be super cooperative and not complain about the work that went along with it. While they did have their moments of goodness, and did help.... let's just say I totally over estimated their level of involvement in this project.

4.) I HATE PAINTING. I love the result... but ohmagoodness. I just do not have the patience for it. If I had a dollar for every time I whined, "Isn't this good enough already???" I'd be a rich lady. And yes, I fully admit, there was lots of whining coming out of my mouth.

5.) Multi-day projects are just not in the cards for us right now. I have no issue taking on a project for a day. Reorganize a closet. Do some task that needs to be done. But this spread out over multiple days thing just isn't for me at this point in my life. I just have too many "normal" every day stuff to juggle. So all that normal stuff has gotten ignored... I have about 5 loads of laundry sitting on my bedroom floor that need to be folded and put away, and about that many that still need washed. My house looks like a tornado just went through it, quite literally. And I've yelled at my kids more in the last week than I probably have in the last year because I just want to pull my hair out and scream. So yes, for all of our sanity, we will be sticking into one-day max home projects for the foreseeable future. 

6.) I drink way too much Dr Pepper when I'm stressed and frustrated. I started last week determined to cut back, but ended up, after a horrific headache that lasted 2 days, drinking more than ever. I'm trying again this week... 2 days in and no headache! I have GOT to stop stress-pop-drinking! On the upside... it could be worse. I could drink beer or smoke when stressed... so in that light, my Dr. Pepper isn't quite so bad, right? *grin*


Let's Chat!

What's the last big home project you've done? Do you enjoy it or are you like me and wish for the ability to hire it out?

Oh, and pictures will come next week once we've cleaned/organized both rooms! The girls are finally getting excited since we can start putting things away!!

Friday, June 27, 2014

BYE-BYE Nap time...

Big sis braided her hair....
We are officially in mourning.

We are (attempting to) wave goodbye to naptime.

Starting in August, Annabelle will be going to school in the afternoons vs the mornings, which means she will be at school during her normal nap time.

Mommy may have wept a little when she got the letter.

I waited until after the kids got back from vacation (aka I had help to keep her entertained all afternoon!) and then starting on Tuesday, attempted to kabosh the nap.

Day 1 went fairly well. A little fussy around 5, but she still refused to go to sleep until almost 10pm, and only then after I laid down on her floor beside her bed. She woke up several times during the night and ended up waking up in bed with Scott and I. (read: Mommy got very little sleep)

Day 2 was a failure. She pulled me into her room around 12:30, did the night-night sign, and hopped into bed. How was I to say no to that? Night was similar to day 1...

Day 3 was the best day yet! A little fussy, but no nap. I put her to bed at 8:30, tucked her in, and daddy played his guitar and sang to her, as is our habit. And.... WAIT FOR IT... the princess WENT TO SLEEP. No getting up 5 times, insisting I sleep in her room with her. I mean, it might be a flook, but hey, I'll take it. She only woke up once during the night, and I took her back to her bed and she fell right back asleep. The only UGH part of this is that she woke up at 6am this morning. 7 would be a little more desirable... but hey, I almost got a full nights sleep. I won't complain!

Part of me is also a little sad because... well... she's my baby. And she's almost done with naps!!!

My baby girl is growing UP!!!

*sniffle*

Time flys when you're having fun and doing fun things like growing!!

Ya know though?

I'm excited. I always thought the milestones with my last child would be bittersweet, and maybe to a point they are.

But with Annabelle... each and every one is a miracle. There were so many days she slept induced by medications because her body was too sick. There were so many days we thought she'd never make her first birthday, or her second.

I live each day with the realization that her life is a gift, a precious, amazing, miraculous gift.

Sometimes I don't ACT like it. I'm like every other momma out there. I get irritated and frustrated at her. There are moments I honestly just want to scream at the top of my lungs. I take for granted the gift.

But I never stop being thankful for it.
I never stop loving it.

Discussion: Oh, it's Friday. We can talk about anything! Do your kids still take naps? How do you handle kiddos growing up? Is it a celebration, or a time of weeping?