Monday, October 7, 2013

the other shoe

When Bailey was born, we thought she was "perfect."  I remember shortly after we brought her home, we needed to stay the night at a different hospital because her bilirubin level was still too high.  We brought her in and they couldn't get a vein anywhere but her sweet little round head.  My hormones must not have helped, but I cried like there was no tomorrow.  I felt helpless, scared and all I wanted to do was take my baby home and hold her in my arms, not sit next to an incubator.

Once again home, I counted my blessings to have a healthy, beautiful baby.  She ate, slept, grew... she really was "perfect."

When Bailey was a few weeks old, I remember laying on the floor in our condo living room, as she laid on her sheep pillow mat beside me.  The phone was right there, as I often talked to my mom.  Our pediatrician's office called, and told me Bailey's heel prick test came back "flagged" for CF.  I sat up, my heart tight, my stomach immediately sick.  What is CF?  Is that like Cerebral Palsy (CP)?  Is my baby ok, what is going on?  I had not even really registered that she had a heel prick test, as I wasn't even conscious when she was born...literally I had been under general anesthesia due to complications. So to say I hadn't even given it a thought is an understatement.

The days were a blur of doctor visits, panic, late night research on my computer.  I remember licking her trying to see if she did in fact taste like salt, as that is how they used to diagnosis CF.  I couldn't salty is a baby supposed to taste?!  Bailey had 3 sweat tests all yielded lower borderline results.  A sweat test is when they strap a band around your arm which sends electrodes through the skin to make it sweat, they then measure the salt content in the sweat and high salt is indicative of CF.  In the meantime Kevin and I got tested to see if we were both carriers, which we were.  Knowing our mutations then, we had them do a blood test on Bailey to see if she carried both those genes.

In early December 2003 we found out Bailey did in fact have CF.  I paced the condo crying out.  I held her tightly to me and begged God to please please please take it from her and make her healthy.  Please don't let her be sick, please don't let her die.  Please please please.  Please let her be perfect, this sweet little baby who doesn't deserve this.  Please.

CF is a disease that affects the lungs and surrounding organs.  It's progressive but usually right from the start a CF person displays symptoms.  At birth many CFers need surgery for bowel obstruction, as the mucus is already so thick in their body they can't pass their bowels.  Then, most CFers need to take enzymes each and every time they eat because the thick mucus surrounding their pancreas prevents their natural enzymes from breaking down their food so they can digest it.  Instead, food goes right through them and they suffer from severe malnutrition very quickly.   Many CFers are diagnosed from their failure to thrive as infants.  Even with these fake enzymes a CFer will have many gastro/digestion issues.  Then, they start harboring harmful bacteria in their lungs...the bacteria gets trapped in their tar pit mucus, instead of easily leaving like it does for us because we have thin spit around our lungs.  The bacteria leads to lung infections.  Over time a CF person's lungs get weaker and weaker and more inflamed from constantly trying to fight the bacteria, which of course grows resistant to antibiotics.

I spent those early diagnosis days reading all I could about CF.  And it scared the shit out of me.   But the days, weeks, months were passing and my girl didn't have so much as a cold.  As a preventative measure we went to CHOP every 2 months and did manual chest percussion therapy on her (bopping her with little cups to try and thin the mucus) and also gave her an inhaler treatment a couple times a day.  Now that was hard.  Thankfully, Kevin really helped with treatments because I just about couldn't take the way Bailey would hold her breath when her little mask would get put on her face and her eyes would flare, she'd kick her legs and I just knew she thought we were trying to suffocate her.  I'd sing to her trying to calm her as my tears fell right on her head.

Around her first birthday, I remember telling someone that she is just the BEST baby but I was in a constant state of anxiety because I kept waiting for the shoe to drop.  The CF shoe.  When my baby would suddenly start starving to death and not be able to breathe.

The years went on and we adjusted.  We did preventative care with her but really she was healthier than most "perfect" kids.  We treated her like any other child and went to Disney, waterparks, sat her on Santa's lap, let her play in a sandbox, went on hayrides in the fall.  Why wouldn't we?  Well many CF parents are very scared about these kinds of things, as there have been places that have been proven to grow certain harmful-to-CF bacteria.  Santa sees tons of kids in the winter = germs.  Hay has spores with bacteria.  Waterparks...where do I begin.  Not to mention many CFers are homeschooled and off Bailey went to public.

I never forgot Bailey had CF.  I knew it was in there.  But we enjoyed life and I took such comfort in her more mild mutation of CF, hoping maybe even she would always be mostly asymptomatic.

Last October her FEV1 dipped into the 90's.  FEV1 can go up to 150.  Bailey's baseline was always over 100.  The dip continued...continued...different antibiotics were tried and by then it was summer.   No cough, no sickly appearance.  She always improves over summer due to the ocean and increased swim time so come August we were all expecting to see over 100 again.  Down more.  Over the year she had decreased more than 10% of her lung function when a normal CF decline is 1-3%.  We found out she had finally cultured a dreaded CF bacteria.

The CF shoe dropped.

Since August we have been consumed with Bailey's CF.  More treatments, meds, vitamins, machinery.  CHOP visits.   On Friday we found out it wasn't enough.  Tomorrow Bailey checks in for a hospital stay to get powerful IV meds administered.  The meds will be a 2 week course...we're hoping at the end her FEV1 has shot up and if not they will try something else.  I PRAY this will work and I PRAY she has no ill side effects from these powerful drugs.  I am back to begging God, as I was at the time of diagnosis.  Please please please please please.

So no, I'm not handling it well.  I cry any time I'm alone, and sometimes when I'm not because I just can not help it.  But how is Bailey doing...well, she is scared.  She woke the other night and it was very hard getting her back to sleep. They tried to explain how the meds will be given through a PICC line in her body, which she will be sedated for when it is placed.  I think she is most nervous about that.  But thankfully she sees the good in most things and has planned for a special project she and I could do together.  Bailey is amazing.

Pray for us is your faith that is helping me have faith.  Much love and thanks to you.

Sunday, October 6, 2013

Eight is enough.

Eight years ago at this time I was packing my hospital bag, scribbling out names on paper, throwing up in the kitchen sink, and peeking in on my sleeping just-turned-two year old, who was about to be a big sister.  While it was still dark out, we left for the hospital and I remember turning around to look at the house, knowing we'd be returning as a family of four.

Taylor had a beautiful c-section birth compared to Bailey's traumatic one.  A few hours afterwards, as I held her I knew her name was Taylor Elise...she just looked like a Taylor.  I said, "You're just a Tater Tot aren't you, a little sweet potato."  And it stuck.  She was a beautiful baby and she barely cried as she roomed in with me for those couple days.  Because of having another child, Kevin spent less time at the hospital with me than with my first, so she and I were in the room together, just the two of us girls...buddies.  She took to nursing like a champ and I was one proud, happy mama.

I had no idea what I was in for, really.  I thought I knew, having had a girl already.  Basically I thought that the past two years would just be on repeat, add in a toddler ok a little busier, but I am a grown woman how bad could it be?

Then we came home.

I've shared on this blog before...or perhaps you know me in real life and was witness to it....for years Tate had a hard time.  Now we know she has sensory issues and we are in a great place with it.  But those early years were tough.  I was in survival mode most of the time.  Not to mention of course I also had an older child, who has CF and had to have her different needs met everyday.  Nope they weren't easy years.

But as Taylor grew more comfortable in her own skin, learned some coping skills and how to communicate what she wants and needs...this other wonderful, amazing part of her personality came out.  And we realized SHE IS HILARIOUS.  We are never short on Taylor-stories and we enjoy her antics every single day.  Her laugh is also my most favorite sound in the whole wide world.  I should tape it on my phone to just play it all the time.

At 8:11am (8/11 is my anniversary date too!) on October 7, 2005 Taylor Elise came in to my life...healthy, beautiful, and full of personality.  I had no idea that before she was born my life was so boring.  She adds so much spunk and spice to our family, I just simply can not imagine life without her.  She also has a very sweet, compassionate loving side to her that brings me such peace and comfort.  I adore her.

Tater and her #1 fan, always and forever.
I will never, ever stop being grateful for this beautiful kid and what she has brought to me.  I am drawn to her like a magnet.  I long to see her when we are apart, and I soak up (most) of the time we are together.  She is just a really great kid and if you know her, you can't help but really, really love her.

Happy 8th Birthday Hotter Totters.  Mommy loves you more than anything.  At bedtime tonight you told me you don't want to be eight, you want to stay seven.  Then you went a step further and said you wanted to be a baby again and be one year old.  But I tried to tell you how awesome 8 is, and you have a whole year to get used to it before 9.  Eight is enough...

Mommy will need that whole year to get used to it too.

Thursday, October 3, 2013

in the blink of an eye

Moms of really little kids don't like to hear "if you blink, you'll miss it."  And  "these years pass so fast, enjoy them!"  Those sentiments to a mom, with crusty spit up on her shoulder, a toddler screaming on her leg and her arms full of baby, might not be received in the manner you're intending.   The days when you have little ones can seem long.

But I can't help it, I really have to tell you those days do pass in the blink of an eye.

My Bailey turns 10 tonight.  I remember my labor, her was a long day and a half.  I didn't get to see her be born bc they had to put me under, and when I came to I remember desperately trying to pretend I didn't feel like I was about to pass out again.  I wanted to hold her and never let go.  Ever ever.

And I still don't.  I don't want to let go.

I desperately wanted a girl.  I joke that God said "alright already!" and signed me up for 2.  There is no bigger joy in my life than being a mom.  Sometimes I think about how I really glean too much joy from it, because of how much I fear them leaving.  I have empty nest issues years before having an empty nest.

Bailey made me a mother, and she has taught me more than I have taught her.  I love her so intensely it scares me.

I blinked and she turned 10.

I'm praying her next 10 years are as healthy and full of joy as her last 10 have been.

Wednesday, October 2, 2013

Mama Bear

One of the nicest things anyone ever said to me was that I am a Mama Bear.  It was from a good friend who is very supportive and always knows the perfect thing to say.  But she doesn't blubber on, so when she speaks you know she really means it.

I took that compliment to heart and stashed it away, reminding myself that I am a Mama Bear on occasion.  Yesterday was an occasion.

If you know me at all, you know we have been really struggling with Bailey's decreased lung function. It's quite serious actually, and our whole lives have basically been consumed with increasing her FEV1 level.  She has cultured a nasty bacteria in her lungs that she can't spread to non-CF people, but it hangs out there and flares up causing lung infections.  Her doctor at CHOP is concerned this is what is happening given her decreasing level.  But we're not sure.  She is on a really amped up treatment plan and we are praying on Friday when she gets tested that her FEV1 has come up, indicating better lung health which will keep us out of the hospital.  If it has stayed or dipped down more, we are checking in to CHOP on October 8 for a serious course of IV's, which I am dreading for many, many reasons.  That being said, we are trying to keep her as healthy as possible.

But she goes to public school.  Seems a bit of an oxymoron there, what with so many germy kids all around.  Thankfully, it is on the smaller size with class sizes less than 20 (I think the most she's had so far is 18 for half of a year).  I spoke to the principal, the nurse, the guidance counselor, Bailey's teacher and Taylor's teacher about Bailey's increased medical needs given CF is progressive and it has reared it's ugly head.  I asked that Bailey and Taylor be moved to another desk if there is a sick child near them, I asked that they have their water bottles on their desk so no water fountain, hand washing, etc.  Bailey is also allowed to go to the nurse and have a Gatorade that I supply in the nurse's fridge and she can take her water or drink outside with her, as playing outside makes her really thirsty and she loses so much salt through her sweat.  I ask this every year but this year I asked with THAT LOOK upon my face.  You know, like I'm not asking nicely, I'm telling you this is what I want to happen.  Everyone was so nice about everything and from what Bailey has told me, all of her needs have been met each day.

For the last couple weeks I've been picking Bailey up during lunch to get a breathing treatment in (vest/nebulizer/pills...this girl is a rock star, she hates leaving her friends but skips to my van most days...we'll be able to knock the treatments back from 4 to 3 or 2 if her number goes up).  Yesterday, I dropped her off in time that she still had some recess left.  It was hot, so I gave her an icy Gatorade to keep with her on the playground.  I watched from the van as she checked in at the front door, then ran to greet one of her friends who had seen her and was waiting for her.  I see a lunch aide (Bailey is basically fearful of the lunch aides and now I know why) yell at her to leave her bottle in the cafeteria.  Bailey is running off so doesn't hear but the aide yells louder, "YOU CAN'T BRING THAT OUTSIDE BRING THAT BACK HERE NOW!" so Bailey stops and freezes...I jump out of my car and am running towards the cafeteria yelling OH YES SHE CAN HAVE THAT WITH HER and I say to Bailey go play sweetheart and I stand face to face with the aide.  I ask her if she remembers that Bailey has CF and the nurse had a meeting with the lunch aides letting them know that Bailey is allowed to always have a drink with her and if it's hot it can be Gatorade.  She said ok, well the kids can't bring drinks outside because of the ants.  I tell her I understand, but Bailey will be responsible with her drink and she has been given permission because of her medical need.  My blood was boiling. She said ok, that she must not have been there for when the nurse talked to the staff.  The nurse has told me she has talked with them a few times, but I think I will need to make more of an issue of what Bailey needs, in all areas.

Playing the scene back in my head, me running (yeah, I was that upset) towards the lunch aide and ready to throw down over my kid getting to have a drink with her, I feel I was a bit undone.  If it's true she wasn't there for the talks the nurse has had presumably, then she was within her job and I totally get it.  I don't know why I reacted like that instead of being calmer.  I guess I was furious as I assumed she was there, and did know, and forgot because it just didn't matter enough to her.

I'm not proud of myself for my reaction to the lunch aide.  But I am proud that I know I will go to the ends of the earth to fight for whatever my children need.

I'm a Mama Bear.  And at times when I feel really ugh about everything, I'm going to remember that.