Thursday, December 12, 2013

I'm back

Miss me?

The last I left off, we were checking into the hospital for Bailey's first CF admission.

Reading together on Taylor's birthday, October 7, the night before we checked in.

I thought often about writing a blog post to document what has happened since then, but I just couldn't.  I didn't want to come back to this blog and see the last entry I wrote.  It was such a sad, sad time for us as a family, those few months before Bailey's admission.  We tried so desperately to improve her lung function at home.  We were consumed with her CF and how to help her, and it didn't work.  The doctor thought it was time for an admission for a CF "tune-up" where they administer heavy-duty meds to try and kill the bacteria that is most likely the cause of a lung infection and decreasing lung function.

This was taken after she finally came out of her sedation stupor.  Bailey had to go under sedation for them to surgically place a PICC line so that she didn't have to keep getting IV's placed in her arm.  The blessing was she received her PICC the very next morning after she checked in...some kids wait days.  She had no side effect other than the sedation made her act like a sad drunk.  As a mother it was heartbreaking because she kept trying to tell me something as she cried but I couldn't understand her words.  She was so frustrated and kept crying to me and I couldn't make sense of it.
 I was so thankful when she came to.  Now that I know what to expect next time won't be so bad.  

Fast forward...

The hospitalization didn't work, she got worse.  All told, from the start to her decline to the end of her hospitalization she lost 20% lung function which is quite significant.  Not to mention we didn't know if she would even further decline, how do we stop this freight train?!

But.  There's always a but, right?  A lot has happened in these last few months, good and bad.  And I am focused on the good, because the good is wonderful, and life will be awfully hard if we always focus on the bad.  I tend to, as a natural worrier.  But I am trying to change, and always see the good first.

Can you tell she'd been crying?  My sister in law made a huge box for Bailey of gifts that "every time you need a
boost, open a present."  Bailey needed a boost after her first dose of IV's!  This box - along with all of the other gifts, cards, meals, texts, calls...were one of the "good" things we experienced while at CHOP.  

So some good is...we became even closer as a family.  In particular, there was one very rough morning in the hospital that Bailey and I shared.   We were clinging to each other in her bed and crying, we were exhausted, fearful, in pain.  But from that we had a very deep talk that I will always hold dear in my heart.  My girl and me, coping, sharing, suffering, healing.  All at once.  We were both struggling with why Bailey has CF at all, why is this her trial. Why were her friends right then getting ready for school and she was hooked up to an IV pole unable to leave her room.  I said I didn't know.  I'll never know.  But the Bible doesn't say we were created to have fun, comfortable lives.  As a parent of course we want that for our kids.  But God knows more.  He knows what helps us to be the people He knows we can be, and He knows what will advance His kingdom.  Bailey and I really rested on the assurance that God loves us and we don't have to understand how He works to know that He loves.  That is the fact the Bible DOES tell us, over and over.  To know that Bailey was going through a trial, and analyzing her faith, and becoming an even stronger believer through it was beautiful to see, and it helped me with my own belief.  I confessed to Bailey that I have been a fair weather friend with God at times.  When my blessings are easy to see I am full of gratitude and shout His name with praise.  But when I am deep in hardship, as watching your child suffer is a hardship, I question Him and doubt His goodness.  I wonder where He is and how He chooses who to help.  What I need to remember is that His blessings may be harder to see but they are always there.  He is always working for good, even when we can't see it and that's when faith comes in.

I was also able to see a side of Taylor as a sister that warmed my heart.  Taylor didn't have empathy as a toddler, we had to painstakingly teach her to care about others and be selfless at times.  Well, she certainly has empathy now.  I am so grateful to see her deep love, care and affection for her beloved sister.

I had an even deeper appreciation for Kevin as a father, husband, provider.    He worked very hard while also taking care of Taylor and trying to see Bailey as often as he could.  He didn't blink twice when I said I wouldn't be working during this time and would therefore not be bringing in any money.  Kevin always has a servant's heart, he is always first to offer to help.  But during our hospital stay he was even more gracious, more helpful.  I fell in love with him more.

What else good happened...well, did you hear we met Selena Gomez?

What a silver lining that was.  The power of social media!   After Bailey's first week in the hospital, I traded with Kevin and went home for the weekend to be with Taylor.  Driving back to CHOP on Sunday night, I was thinking of our upcoming Selena concert that Friday.  My in-laws gifted the girls tickets to Selena's concert as their birthday gift and we were so thankful CHOP grants one-time passes during hospitalizations if you're healthy enough.  Bailey would be allowed out for the concert.  I was thinking wouldn't it be neat if Bailey got to meet her.  I envisioned her going back to school not as the "sick kid" but as the girl who met Selena Gomez.  Cool.  I called my father-in-law, knowing that they know someone that works at CHOP.  That was a dead end.  But I went to sleep thinking about how things can go viral quickly on the was a long shot.  I didn't even have a Twitter account.  The next day, I wrote on facebook how I thought it'd be so neat to meet Selena.  A friend (shout out - Grace!) suggested I write to Fox29 and another friend (shout out- Lil!) made a facebook page "Help Bailey Meet Selena Gomez This Friday Night".  I started a Twitter account and tagged Selena asking if Bailey could meet her.

Within an hour or so, Fox29 emailed me and people were sharing my tweet, sharing the facebook page...very quickly this was becoming something.  Fox29 came to the hospital to interview me, and they shared pictures and a video of the girls.

One of the pictures Fox29 aired.  Bailey and I spent a long time talking about this.  I worried about sharing her picture for all the world to see.  I felt that she was vulnerable.  But Bailey was adamant that she wanted to be a "CF face" and if it could help her meet Selena, she wanted to do it.  I agreed that it was an opportunity to raise awareness about CF.  In this picture you can see her PICC, it's that tube thing sticking out of her right arm.  She is also wearing her Chest Percussion Therapy Vest, which basically shakes her to try and thin her mucus around her lungs and organs.

No I'm not adding a picture of me because the fact that I was unshowered and
already on television is enough. But when tv calls, you go.  It was an opportunity I couldn't miss,
even though I desperately wished I had washed my hair that day!

What was happening?!  It was amazing.  Word got to Selena and she said yes!  Her production manager called me on Tuesday evening, I didn't believe at first it was him.  He said, "we heard about your daughter...Selena's stepfather heard, and I am from Philly, so I heard from several people 'hey there's this little girl from South Jersey you gotta help her out'.  So we are and would love for you to meet Selena on Friday night".   I thanked him profusely as my heart raced and I just kept thinking "I can't believe it!"  What I couldn't believe wasn't just that we were meeting a rock star.  I couldn't believe how quickly word spread, and that many people cared.  But they did, so many people cared.  It was heartwarming, and I will keep that feeling with me always.

The rest of that week was a blur of treatments, IVs, tests, surviving, thriving, anticipation, excitement.  We found out a local limo driver wanted to donate his time that evening to our family and take us to the concert.  The girls were almost as excited about riding in a limo for the first time as meeting Selena I think!

The morning of the concert Kevin stayed with Bailey while I went to the salon with Taylor.  We had our hair blown out and got mani/pedis.

We both cried a little together that Bailey wasn't with us, and chose new polish to bring to her at the hospital.  Meanwhile back at CHOP Bailey's fabulous nurse a few days prior had figured out how to precisely time everything so Bailey wouldn't miss an IV dose. We were going to take her oral meds with us to the concert and right before leaving get hooked up to the IV and then again as soon as we got back.  This took a few days to adjust because her meds were every 6 hours and her normal dosing time was right smack in the middle of the concert time.  Her nurse gradually moved the dosing and it worked perfectly.  As she received her last dose my mom and I did her hair and nails.  Fox29 showed up, the grandparents waved us off and we were on our way in the shiny black Escalade to meet Selena.

Carey Limo Service - Joe Reiber - THANK YOU!!!!  A true treat for my girls.

The girls with Shawnette Wilson who was so fabulous!  

We arrived at 4-something.  We checked in and were told a man would call us when she was ready.  Although I was nervous that we had gotten there too early and would have to leave before the concert ended for B's medicine, it ended up being perfect. Bailey and Taylor had the chance to enjoy the sunshine, it was Bailey's first time out of her hospital room in 10 days and Taylor had really missed playing with her sister.  Feeling the sun on our faces, hearing my girls' laughter I thought, "I don't need anything else, this is gift enough.  Thank you God."  We needed that refreshment, that reprieve.  It felt so good.

We had SUCH JOY.

At 5-something we were called in.  We walked with 2 security guys who were so nice.  We took the elevator to the bottom floor and waited for a few minutes outside her dressing room.  We were so excited!

Then her cousin came out to get us.  We followed her through an area that had tons of clothes labeled and on the floor.  Then back to her dressing room, which was lit only by a few candles and there was Selena with a big smile.  Friends, she couldn't have been more lovely.  My girls ran to her and she hugged both of them, genuinely.

I only used my Iphone to take pics.  I didn't want to look like a crazy fan.   And then I didn't put on my flash because I didn't want to disrupt the calm, peaceful vibe she had going.  So a lot of my pictures were dark.

She was kind, she was humble, she was gracious.  She spent a lot of time looking at what the girls had made for her and the dog toys.  She signed our CD's and tickets and we talked about our favorite songs she sings.  Taylor remarked that she used to date Justin Bieber (she pronounces it Beaver and I've never corrected her but I don't think Selena noticed) and Selena laughed and said she did for 2 years but that you girls have lots of time before dating.  She also laughed when Tate sat on the floor and started writing her own name on the CD cover Selena was signing.  We joked Taylor could go on tour with her and sign autographs.  Bailey had the biggest puppy dog eyes for her, and happiness just glowed off her face.  I choked up, and Taylor admonished me reminding me I promised her I wouldn't ugly-cry in front of Selena.  Selena and her cousin laughed and said all moms cry sometimes and it's a good thing.  We took pictures, which thankfully her cousin turned the lights on for.  Bailey showed Selena her PICC line and Selena so gently held Bailey's arm.  Selena told her to stay strong and she'd be ok.  I told Selena I thought she was a great role model as I had read of many wonderful things she's done.  I asked her to stay young, stay sweet.  Selena told the girls she hoped they like the concert and thanked us for thinking of her doggies.  We hugged goodbye and said our thank you's and she was off.

Her concert was amazing.  I won't lie to you - I was nervous.  She is a rock star after all, and I think of myself as a more conservative parent.  But she was appropriate and a few times she spoke to her audience in a very positive way, encouraging her tweens and teens to stay true to themselves, be strong, be lovely.  It was a good message.

Towards the end Bailey couldn't keep her eyes open, as a side effect of one of her drugs and lack of sleep had led to painful, bloodshot eyes.  I held her in my lap, praying for her, and thanking God for this night.  At the end of the concert Kevin carried her all the way to the limo.  At 10 years old she is a big girl now, but he did it and it warmed my heart to see my baby still be able to be carried by her daddy.

We raced back and she was immediately hooked up to the IV.  I noticed the nurse wore a mask, which no one had done previously.  I knew Bailey's throat culture had come back, and I assumed then that meant she cultured a bad CF bug  My heart dropped.  I wondered if I wanted to know what it was, after having such a great night, getting such bad news.  But I had to know.  The nurse looked it up in the computer and said, "normal flora" and I almost dropped to my knees.  She remarked that she hadn't looked it up, for some reason she thought Bailey's culture had one of the bugs they mask for, but it didn't.  I gave thanks to God for such wonderful news on that wonderful night.

Bailey was released the following Tuesday, after 2 weeks in.  We decided to take her off 2 drugs and see what happened after 5 more days.  She was the same, and we were all heartbroken.  We chose to continue with our planned Disney vacation and return afterwards.  Bailey was scheduled for testing as part of the drug study she had taken part in and was ending.  If her lung function was still low we'd get a CT scan and a bronchoscopy in the hope of finding the cause of her decline.

SHE WENT BACK UP!!!  Not the full 20%, so not where we need to be yet, but she's on her way.  She's back up about 10% and we are praying that when we return in January she is up even more.  We avoided another hospitalization and the testing.

I am so thankful we are home for the holidays.  She was back at school for class pictures, she went trick or treating as a princess cat, she was at our table for Thanksgiving, she played with her cousin and welcomed another cousin into our family.  She went to a birthday party, she went sledding, she went to school, to church, to the mall to see Santa.  She played with her sister, she played with her friends, we went swimming together at the gym.  She has her chorus concert today; she has a solo.  She is wearing the blouse she met Selena in, and has her head held high.

Sometimes through the difficulties we face, we are enlightened to our blessings in a more special way.  Every night since they were born I have checked on my girls as they sleep.  I kiss their cheek, I whisper I love you.  I stand at the doorway where I can see into both of them and as I shut their doors I feel peaceful and thankful.  This emotion has heightened to extreme gratitude that I have both of my babies warm and cozy in their own beds.  Safe, healthy, happy.  Thank you God.

And thank you to all of you, for caring so much about us.  We love you dearly.  We received an outpouring of love and every single one of you that gave to us, in whatever way, we are thankful.  Team Bailey raised well over $7000 this year for the Cystic Fibrosis Foundation!  That is our highest amount raised to date, even higher than our first year walking when Bailey was just 6 months old.  I know that whenever we give of our hard-earned money, we hope that it is being put to good use.  Let me assure you it is!  Because of the CFF, the median life span is now 41 years old for a CF patient.  When Bailey was a baby the age was in the young 30's.    Before the CFF existed, CF was a death sentence to most, as an infant or young toddler.  Now a very young child dying is the exception, not the rule.  But we want it to never happen, so the CFF is tirelessly trying to develop more therapies and what we really hope for - a cure.  So thank you, supporters of Team Bailey, and thank you to everyone who loved on us lavishly during that hard time.

May you be blessed in return, and know you are loved.

Merry Christmas.

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