Tuesday, August 15, 2017

Be Brave - Whatever Your "Brave" May Be.

Be brave. We made t-shirts with this message, we posted about our brave girl and all the big things she's done over her short lifetime, we plan on making a big painting of it in her room. It's become an anthem for us, and we've caught ourselves so many times NOT being the brave ones.

At the beginning of summer, we asked our small group to pray for us as we walked through the decision of sending Bryleigh back to preschool. 

We signed her up last year to try and work on some social anxiety she was having, and we saw her grow leaps and bounds over the first semester, despite her dad traveling weekly for work, her mom being in the hospital and then on bed rest, and becoming a big sister...not to mention a flare up that lasted nearly the entire semester and left three grown adults (sometimes four) in tears at the end of any given day.

But the second semester seemed to go downhill instead of up, her anxiety came back with a vengeance and getting her to school and church each week was almost impossible. And then came her allergy diagnosis at the very end of the year, which made another year of preschool seem almost impossible. How would she ever handle parties and treats almost daily that she just couldn't have? That's a lot of responsibility to put on a 3.5 year old.

As our small group continued to pray for us, and as we prayed, I began to hear God telling me, "Just trust me, Carrie." How could we cheer and praise God for so many others being brave and we not do the same? I felt like such a hypocrite when I realized how much fear I was holding on to as I paraded around in my pretty yellow shirt telling everyone how brave Bryleigh was, but withholding I sure wasn't!

At that moment, we knew we had to trust God with His plans for her and we began to get B ready for school (completing paperwork, buying cute clothes, occasionally chatting about it with her...and potty training.)

We felt good about the time we had, knowing we had most of the summer to be committed to potty training now that we KNEW she was going to school and this was our final road block.

But instead of it being a road block it ended up being a dead end. It's not "blog worthy" nor do I feel like eloquently describing what it was like to work on potty training Bryleigh, other than it just isn't the right time for her, and no one has to really understand or agree with that.  It sent her in to full on anxiety and a flare up.

When our girl got sick two years ago and we took her in to the pediatrician, we honestly expected a diagnosis that day. Based on what we were telling them, things went in overdrive and lots of things started happening all at once. In those scary early days we begged God for negative test results, praying against parasites, bacterias, infections, etc. We had no idea what was going on, but I knew I didn't want my baby girl to have anything anyone was throwing at us. We were thinking (read: hoping) she had a major stomach bug or virus of some sort that would work its way out of her body, and then life would go back to normal.

I catch myself WISHING one of those had been positive. A quick answer with an exact solution and an end in sight. But call after call led to lots of "negatives" and "abnormal" testing meaning something else was going on. 

We went from thinking things would be normal in a few weeks to thinking it would take a few months, we'd get some actual answers, and then move on with life, back to normal, raising our little exactly as we'd always pictured/planned. (I know, don't tell God your plans...forever learning that one.)

We're two years in with lots of questions still (and thankful for every.single.answer we've received to date), daily ups and downs, and praying that this next year will be a big one of learning for us - learning about our babies' bodies and how to best feed them so that their insides work the way God intended. (And learning how to use a potty, like all the time. 🙄🙃)

So, we ended up making the super difficult decision, and our girl won't be having any "first days" with her friends and teachers this year. I've cried quite a few tears, and I'm sure more are to come, but we just really feel like it's best for her where she is right now. It's no longer about being afraid for her, although we will always be nervous and absolutely cautious, we DO trust Jesus with His care and plan for her. Now it's about what is absolutely best for her: keeping her on track with healing her body, adjusting to new diet restrictions (that are actually only three months along!), and taking a no-pressure approach to potty training.

We are looking forward to seeing all of our friends at BSF on Thursdays, day dates on Tuesdays, and a little home learning during the other days to make sure she stays on track. We will be soaking up time before our "little girl" gets a little bit bigger, and I know her baby brother will be so happy to have his partner in crime around 24/7.

**My sweet friend has known I've been having quite the hard time with all of this, so sad at all my baby will be missing out on this year, and she sent me THIS blog - It absolutely hit home with me, and some of it I could have written word for word myself.  It's a world we live in, and I was thankful to be able to read it from someone else's perspective.**

Monday, June 5, 2017

The Diaper Days

I've started this post before, and never finished it. A post to detail what in the world has gone on since July 4th weekend 2 years ago. I haven't finished before, and I'm still not sure I'll finish it this time, but for now, I'll just share what's on my heart.

What Bryleigh has (and Will seems to have) is not life-threatening.  This is not a fact that is lost on me, nor is it something I ever fail to praise God for. Although it is not life-threatening, it sure as heck has been life-altering.

Our entire world changed two years ago.  Some of it was so subtly and slowly overtime that we didn't even realize. Other changes came in and sort of just exploded in our face.

Two years ago, after a whirlwind weekend at a family wedding, a whole lot of family time, followed by a holiday weekend, Bryleigh started with throwing up and ended with diarrhea. Sure signs of a virus. And for a solid week, that's exactly what I chalked it up to, until we woke up one morning and the diarrhea was so severe, she had filled 7 diapers in a matter of 2.5 to 3 hours. She also had a decent fever going on, so we loaded up and headed to the pediatrician.

She was placed in the "papoose" and a large amount of blood was drawn, followed by a stool sample (thankfully from a diaper she voluntarily gave while we were there), and a urine sample via a catheter. They were looking at everything from E. coli, to a long list of other things (bacterias, etc) and began treating her aggressively for a specific infection just in case that came back positive. It consisted of a shot in each thigh for three days in a row.

All of the testing came back clear with no more answers than we started with, and she still had diarrhea. Severe. For a solid 45 days. It would run down her legs, it would burn her little bottom and leave open sores beyond any diaper rash you can imagine. She was still a "baby" at this point. A very young 18 months old, so she didn't fight us too much, nor could she tell us exactly where the pain was (inside and out).

After exhausting every effort they could and still finding no answers, we were referred over to Cooks GI offices where we had an appointment scheduled for September. 

Over the course of the next year, we made many trips to Cooks Hospital in Fort Worth to work with our GI doctor, and eventually the geneticists as well. We did countless blood draws, urine samples, stool samples, and more. We did a sweat test for Cystic Fibrosis, a colonoscopy/endoscopy, and a Whole Exome test that looked at our chromosomes and every single gene. Most of the test would show abnormalities (elevated levels, blood in stool, sugar in stool/urine, inflammation in intestines, etc) but never enough to lead to actual answers.

One big thing we learned early on was that the cause of the sever diarrhea/mucus was fruit. Certain fruits caused much stronger reactions, but every single fruit causes some type of reaction in Bryleigh, most being immediate. So Bryleigh is no longer allowed to have any type of fruit in her diet (and we can tell when we/someone else slips up in that).

As we made the switch and eliminated the fruit, Bryleigh's problems went from diarrhea to constipation. Bryleigh would try, with no luck, sometimes a hundred times a day. Other times, she would have a little luck, but it would end up leaving her bottom basically burned. We spent weeks at a time doctoring tears in her skin, that sometimes led to infection. Some days we would have to change her diaper 10 to 15 times in a matter of hours. Those were absolutely some of the toughest days of our lives.

I am so thankful for how the mind (and our God) works to protect us.  In the moment, even today, I will ask myself, "How will I ever forget this? How will I ever stop remembering how hard *this* was?" And for the life of me, all of those *thises* I thought would be etched in my mind forever, I can no longer picture. I remember there were hard times. Times we thought we wouldn't make it through another diaper change. And don't get me wrong, I have mental pictures (more like videos) that I wouldn't wish on my worst enemy, but I just don't remember them ALL like I thought I would. 

Things I do remember: Bryleigh BEGGING us to stop because the pain was so excruciating. Holding her hair back as she threw up because she was crying so hard from the pain after a diaper change. Dancing with Bryleigh in my room as I held her in my arms because her bottom hurt so bad she couldn't sit down or walk. Watching her try for hours as she would TRY to get anything out she cute, red faced and tears, but still nothing. Massaging her legs, because they had severe cramps in them after those hours of trying. Laying with her in bed and scratching her back after she woke up at 2 in the morning with night terrors. Dropping her off in her classrooms, screaming and crying because her anxiety was so bad she didn't want to leave us.

At some point we hit our breaking point and we knew we HAD to do something different. We had to at least try. Thanks to an incredible referral from a dear friend, we started working with a new doctor in March of 2017. The first appointment was over an hour of us talking, that's it. That did wonders for my anxiety-ridden toddler. She explained things that were happening to Bryleigh over the past two years, without even ME telling HER all that we had seen. Since then, Bryleigh has warmed up more and more to her, and our doctor has now been able to examine Bryleigh. She's felt the intense tightness in her belly. She's felt the reverse curve in Bryleigh's spine. She's explained the severe pain that Bryleigh feels throughout her body on a daily basis, and THAT is why we are working with her.  We have goals and plans in place that change each week as our doctor is able to reexamine Bryleigh and see how things are going.

We are currently using weekly adjustments and homeopathic supplements to try and heal Bryleigh from the inside. We were also able to test Bryleigh for allergies and found that she is allergic to a number of things including sugar, chicken, and eggs. Our hope is that as we eliminate these things and use the supplements, Bryleigh's body will continue to heal.

We hope and pray for specific answers and an actual diagnosis to come at some point. We hope and pray for complete healing in Bryleigh's body, but if these things don't happen, we know that God is good. We know that He goes before us and He will make a way for us to care for Bryleigh in the best ways possible.

And our sweet little Will. We got pregnant with him the very day we got the results that Bryleigh did NOT have Cystic Fibrosis. We hoped that he would be spared from all of the trouble his sister has had, but from the very beginning we saw the same things in him. Our little guy has severe pain with each poop diaper he has, no matter the consistency, and we continue to see undigested formula and mucus in the majority of his diapers. It is our hope that catching his early will allow for earlier healing in his body and far less pain for him.

I wanted to share our story and the journey we've been on over the past two years, and although it's long, it's still the short version of all we've seen. But more than sharing the details and facts in our story, I want to be sure and share all of the goodness and faithfulness we have seen from God.

We have seen answer after answer come to us out of God's love and mercy: strength in the toughest of times, days that ended with sleep to relieve our babies pain, forgetting the difficult memories, Brad home at the exact right moments, help from our wonderful family, a season where my mom was able to live with us, financial provision, outpouring of love from friends, wonderful doctors and nurses, growth in relationships, deepening of faith and trust in Jesus, and the list could absolutely go on and on.

Some days I wish I had blogged every step of our journey, other days I'm so thankful I did not, but I did want to share as much of our story as I could, and I will do my best to continue to update as we learn more.

Monday, April 24, 2017

A Nursery Fit for a Wild Man

It's been a while since I've updated, and this sweet little nursery has honestly been "done" for a while, but I just have not gotten around to getting the details on the blog.

I spent the better part of my bed rest planning and dreaming about this little boy's room, and that meant quite a bit of time surfing the internet for the perfect pieces.  We were able to order some pieces online, other pieces are from a successful trip to Hobby Lobby, some things are hand-me downs and family pieces, and one very special shelving unit was designed by me and built to perfection by Will's Pappy!  I love every single inch of Will's Man Cave and look forward to adding a few more pieces and finishing touches to it during his first year.

Will's hospital room door hanger. Big Sister has one just like it on her door.

I knew I wanted to do some type of rustic theme, with outdoors, animals, and arrows involved, but I went back and forth with some different color combinations.  After our trip to Hobby Lobby and a quick look in the buggy, I could tell the color pallet was determined - ivory, gold, and wood!  I've added color in some different areas, and might add some more, but I LOVE the neutral look and the feel it gives to Will's room.

We were able to use the changing table from Bryleigh's nursery and then bought our Wild Man a new crib since Sister is still in her's and she'll be using it as a full size bed.  We added neutral colored sheets and changing pad covers (with light green back-ups from Sister's extras).  I knew what I liked in a diaper caddy, so we purchased a woven basket from Hobby Lobby to hold diapers, wipes, and all the creams.  We got SUPER lucky when we realized the wipes reusable box fits PERFECTLY at the back with some storage room underneath and the wipes tucked in at the front.  I LOVE the tree trunk canvas in neutrals and gold that really ties in all the details of the room and ended up being a big inspiration for all the decor.  I purchased it from Hobby Lobby as well.  The lamp shown is a beautiful brushed gold with arrows and a burlap shade, and there is a second matching one in the corner of his room.  These are from World Market and were a perfect fit to our little guy's room.

The shelf is from Target and has some sweet little owls from Bryleigh's "Look Whooo's 2" party, along with a picture from that Will's great-grandpa made.  It will eventually have a beautiful 4 generation picture displayed, but for now, Brad is loving the "punch heard round the world" being on display in Will's Little Man Cave.  There are also two signs and a camping lantern from Hobby that completed the shelf decor.
This corner of Will's world is home to lots more Hobby Lobby items - including the two square frames, the white-washed letters for his name, and the arrow beneath.  Two of my favorite pieces in this section of the room is the book shelf hanging on the wall that used to hold hymns on the back of a pew in my hometown church, First Baptist Church - Sherman, TX.  There is a lot of history in that church for our family, so it is very special to have a piece of that in Will's room.  You can also see a night stand tucked away in the corner, and that belonged to my Granddad.  My MawMaw and PawPaw got the Jimmy Don mountain-metal sign for us, and it is just the perfect fit for this rustic room and our hopes for our boy to be adventurous.
These are just a few close-ups of some of the details from Will's room.
I always love giving my dad a vision and watching him bring it to life!
If you've done much searching on pinterest, you might have seen shelves similar to the ones above...with a cool price tag of about $1100.  NOT exactly in this momma's price range, but thanks to my Pappy, we made it happen for a fraction of the cost.  We were able to find few different units that we liked and things from each that worked well, and my dad was able to design a shelf that fit our price range and was completely functional for our little guy's nursery.  It could not have turned anymore perfect!

That sweet moose and tree on the very top were purchased during my hospital stay and were the beginning of this whole vision.  They'll always be special pieces to me.  The bin at the bottom matches the diaper caddy on his changing table and is FULL of books that Bryleigh had while she was a baby a long with a a whole new set of books that our BSF Leaders showered us with when we came back to bible study.  I will always cherish those!  There are also some books we purchased or were given as gifts along with some more pieces from Hobby Lobby, including the "Be strong & brave" sign, the arrow picture frame, and the "Adventure" mountain piece, and the beautiful globe is from Target.

This just happens to be one of my very favorite rooms of all time.  And the little boy who lives in it happens to be a favorite of mine too!

Sunday, January 1, 2017

A Fruitful 2017

I have chosen a word and a verse to think on, pray about, and live out each year for the past several years - 2014 was endurance, 2015 was joy, and 2016 was intentional.

And let me correct myself quickly, I haven't exactly chosen it as much as I've felt called by God to claim it (or work on it) in my life.

I thought endurance would be great in 2014 because I was starting the year with delivering a baby (talk about the need for endurance!?) and then raising that sweet little newborn, but what I did not know was all the endurance I would need for all that God had planned for us that year (Brad's 3 surgeries, 20 weeks of home health, and the beginning of his weekly travel to North Carolina).

My word for 2015 was one God repeatedly showed me I needed to work on - JOY.  I had very little of it in my life, and I just felt extremely negative all of the time.  I chose to claim that word and study it throughout the year, including reading "The Greatest Gift" by Ann Voskamp, where I began to track my #1000gifts.  It was a game changer for me, and although I still need work in that area, I know God did a great work in my life because of that word.

Some years I fall flat on my face.  I didn't FORGET about my word for 2016, and certainly did not forget my verse - {And whatever you do, in word or in deed, do everything in the name of the Lord Jesus, giving thanks to God the Father through Him. Colossians 3:17} - but I certainly didn't make any of the efforts I intended to in order to live intentionally.  Although 2016 is behind us, my goal for 2017 is to be a little more intentional with all that God has given me and called me to - as a wife, a mother, a friend, and a daughter of the King.

Those three words came to me over the course of months leading up to the end of the prior year, and I really expected it to always go that way.  I figured God would always put something on my heart to work on or claim for the upcoming year, but lately, all I've heard is radio silence!! I've prayed and prayed, and here we are, 4 days before year end (as I type this...) and I didn't have a specific word as of 8:00 this morning.  I'd been thinking about a few and praying for some direction, but nothing was really standing out to me the way it normally does.

That was until I was standing in my bathroom, ticked off at my husband for something that Satan was turning in to a much bigger deal than it actually was, and I thought, "Boy do I need some patience.  Maybe THAT should be my 2017 word?!"

But have you ever prayed for patience?!  I'm pretty sure I did as a 6th grader and I'm still getting the lessons thrown my way, 18 years later...I could give you a laundry list of the things I've "waited on" or "waited out" or "patiently endured."

Over the past week, I've also considered a few others, like LOVE, and JOY, and PEACE...and then it hit me...FRUIT.  I need each of those areas to improve in my life. I WANT each of those areas to improve in my life.  I want my life to bear the FRUIT of Christ, showing love and joy and peace and patience and kindness and goodness and faithfulness and gentleness and self-control.  (The irony is not lost on me that my word for the year is a word that - in different context - has rocked our world a bit over the last 2 years...)

Over the years, I have loved studying the passage in Galatians chapter 5 that discusses this very topic and plan on studying it over the next 12 months - and each month I'll focus on one of the words.  So here's to a LOVING January, a JOYFUL February, a PEACEFUL March, a PATIENT April, a KIND May, a GOOD June, a FAITHFUL July, a GENTLE August, and a SELF-CONTROLLED September.  And I'll swing back around for a second round of those words for the last quarter of the year...you know, the Holidays when you could use a little more of each area! ;)  Here's to a year of FRUIT in 2017!

Friday, December 30, 2016

2016 - A *CRAZY* Year in Review

You know all those memes and funny Facebook posts (and some not so funny) about 2016 and how crazy it's been - like how can there be so much good and so much bad at the same time, like how we REALLY need 2016 to be over and for 2017 to be a little better behaved?! Yeah, that's SO us!!  God has given us SUCH good gifts in 2016 and we made some incredible memories, but to say it's been a tough year of growth would be an incredible understatement.

10.  Life with our big girl!  It is such a blessing to be Miss Bryleigh's momma and daddy.  She is such a joy and we have loved watching her grow up over the last year, which included turning 2, going to her first movie, starting school, and learning all kinds of things!  (Here's to hoping year 3 sees the end of the pass and the beginning of panties!)  I am thankful for the little beautiful life God blessed us with when He loaned us our Bryleigh Girl.

9.  Diaper Daze.  Along with growing and learning, our big girl had a tough year with all of her tummy issues.  She had lots of appointments with her doctors at Cooks and several different tests, including a sweat test to rule out Cystic Fibrosis, an endoscopy and colonoscopy, and a big genetic test.  We spent a lot of the past year focused on trying to find out what was wrong with Miss B and how to help her, even without a diagnosis.  Although we are ending 2016 just like we did 2015, with no diagnosis, we are PRAISING THE LORD that these last weeks of 2016 have been (mostly) tear free when it has come to changing diapers and all things diapers related.  God is so good!  I am thankful that God is faithful and He sustains us, even on our toughest days.  I am thankful that He knows Bryleigh's tiny body inside and out. (And insurance. I'm STILL thankful for insurance.)

8.  Our Teams.  2016 was a fun year for sports in our family, starting with cheering on Carrie's Broncos and Peyton Manning in the Super Bowl!  We spent a lot of time at the Ballpark cheering on our Rangers, and it's been such a fun season cheering on the Cowboys.  One of us is happy to have cheered on the Big 12 Champion Sooners, and the other isn't as pleased with how the year went (on and off the field) for their Bears.  We LOVED getting to visit the Nationals' park again and watch two games, including a Scherzer gem!  We even found ourselves cheering on our alma mater (UTA Mavs) in a men's/women's double header.  I am thankful for the fun we get to share as a family, making memories together whether our teams win or lose.

7.  We're pregnant! And it's a boy!  On March 24, we found out that we were expecting a sweet little baby that would join our family around the first week of December.  True to each of Carrie's pregnancies, there was lots of sickness to start things off, but our sweet baby was healthy and growing!  On July 26, we found out the exciting news that the sweet little baby was a BOY!  We had a fun year of dreaming and planning for our little guy.  I am thankful for the miracle of new life that is a blessing and a gift from God.

6.  Sweet Sister.  We weren't the only ones adding to the family in 2016! Our sweet little sister got engaged on July 3, just 2 months after they both graduated from UTA.  Erin has already started working as an ER nurse and we are SO excited for March to get here so that we can officially add Luke to the family.  I am thankful for the little sister I got when I married in to Brad's family and for all the blessings He has given to her!  What a blessing she is to all of us.

5.  A San Antonio Get-Away.  We had a blast exploring San Antonio with Carrie's family in May to kick off a fun-filled summer.  There was time on the River Walk, lots of good food, a trip to Sea World (in the middle of a monsoon), and a 1000 piece puzzle.  I never get tired of seeing Bryleigh with her cousins (and she never gets tired of seeing them).  I am thankful for the fact that God saw fit to put our sweet Tate, Olivia, and Bryleigh in our lives, close in age, so they can grow up together.

4.  BCinDC2016 AND BryleighsTrip.  2016 was an awesome year of travel for our family with a return trip to DC for Brad and Carrie AND our first (and last) vacation as a family of three where we took our big girl down to Galveston.  I am thankful for the time I got to spend with my husband and my little family this year

3.  Bed-Rest Days.  The last quarter of our year was spent in and out of the hospital, complete with a 17 day stay in the antepartum unit at Baylor Scott and White in Dallas when our sweet little boy tried to make his grand entrance at 31 weeks and again in isolation for a few days while being tested for TB and again after giving birth (that part was a much funner stay!).  I am thankful that God sustained us during such a scary and frustrating time.  I am thankful that he took care of and protected our sweet boy.  And I am thankful that we got lots of extra time with our B-dad at home with us!!

2. William Bradley.  Our sweet little guy was born on Thanksgiving Day at 9:00 am after a quick-ish labor and delivery.  We fell instantly in love, as did Big Sister, and our lives will never be the same.  What a gift he is!! I am thankful for the incredible blessing it is to be Will's mom and to get a first-hand look at Bryleigh being his big sister.  What good gifts our Father gives!!

1.  Life as a family of FOUR.  In the short 5 weeks we've been a family of four, we've already deposited some incredible memories in to the memory bank, including Will's first days at home, his first Christmas (and all the fun involved there), his first hotel stay, his first trip to the zoo, and so much more.  We are looking forward to all the adventures that are in store for 2017.  I am thankful for the incredible family God has blessed me with and all of the days and all of the things...every single one of them, no matter how tired, or gross, or long, or "boring" they may be.