To my baby...

To my baby, on the eve of her first birthday.

Dear Bonnie,

One year ago tonight, I rocked your brother to sleep (not easy, by the way, being nine months pregnant).  My prayer as I rocked was that, in a year, you would be the one I would rock to sleep.  And tonight you were.  Oh, how grateful I am for that.

The day you were born, the doctor described you as "feisty."  That was the best thing anyone could have said, because it meant you were a fighter.  What a fight you were in for, but you did it, baby girl.  You won.

I remember vividly the day I knew for sure you were going to come home.  It was July 5, 2012, the day of your repair surgery.  Your dad and I were sitting in the waiting room, waiting to see you after your surgery.  One of the neonatologists came in and we had a ten minute conversation about what your scar would look like when you were older.  It was the first time that one of your doctors had spoken with such certainty that there would *be* a future.

I finally got to hold you when you were a month old, and what an amazing day that was.  Your nurses will tell you that I made up for lost time and held you for hours on end every single day until you finally came home.

Your big brother Henry is so very proud of you.  When I take you with me to pick him up from school, he'll tell anyone who's around, "Hey! That's my sister!", usually followed by a kiss on your head or your foot or whatever's available. Dado and I are proud of you too.  We love that mischievous laugh and twinkle in your eye when we catch you flinging tupperware from the cabinet or trying to put the dog's tail in your mouth.  We very affectionately call you "the villain" because of the normal-baby-milestone-reaching havoc that you wreak.  Now that you're learning to walk, well, bring on the destruction!

My precious baby, you are such a gift.  I pray that one day you will know the great God who brought you through those early months and who still holds you in His hand.  I pray that you will one day know just how many people have been cheering you on from the very beginning.  I pray that one day you can be proud of your scars--I know I am.

Thank you for bringing so much joy to our family.  Thank you for giving me a heart more sensitive to people's suffering.  Thank you for staying with us.  I thank God for every breath you take.

All my love,
Mama


P.S. Here are some pictures from your last bath as an 11 month old :)

Long time no see.

Bonnie is ten (and a half!) months old now.  How did that happen?  She's been doing great lately, and making a lot of progress developmentally.  About two weeks ago she figured out how to crawl, much to her delight.  She had been one seriously ticked off baby for about a week and a half prior to that--wanting to move but not being able to.  So she's officially mobile now.  Yay Bonnie!  A week ago she pulled to standing for the first time, which she's also pretty excited about.  I'm so proud of her, because physical development-wise, she seems to be almost on target.  I should also add that she's started physical therapy once a week since my last post, which I think has had a lot to do with her progress.  You wouldn't really think that an hour once a week could do much, but it really does.

She's been babbling a lot in the past month or so.  It's so great to hear that sweet little voice say "mama."  I was kind of worried about her language development because it took her what seemed like a loooong time to get any consonants in her repertoire.  Henry was an early talker, so that made Bonnie seem even more behind to me.  I think now she's starting to catch up, which is a huge relief.  

As far as eating, she's still getting pretty much all her calories via g tube.  Her oral aversion (which was due to being intubated for so long) is pretty much resolved, so she doesn't mind having food in her mouth, and she (usually) doesn't gag anymore.  Her problem seems to be that she just doesn't know what to do with her tongue to get food to the back of her mouth to swallow it.  I'm sure her occupational therapist (who does feeding therapy) would have a more technical explanation.  I do feel like she's making progress though, and I'm just waiting for the lightbulb to turn on.  Any day now.

Speaking of the g tube, I just wanted to document a little of our experience with it.  First, it's a thousand times better than the NG tube she came home with.  Way more convenient and unobtrusive.  One thing that freaks me out, though, is when she gets all tangled up in her tubing at night.  There's really no way to avoid overnight feeds at this point, because she can't handle the volume she needs if it's compressed into just daytime feeds.  (Did that make sense?)  Anyway, her feeding pump runs overnight, and usually she's so zonked out that it's not an issue, but sometimes when I get her in the morning, she's all wrapped up in the tubing.  It's scary.  Another potential issue is what to do when she's hooked up to her pump during the day but wants to crawl (and eventually walk) all over the place.  Am I supposed to just follow her around with with her little pump backpack? No idea. These are the things that keep me up at night. (Not really. I sleep great, thankyouverymuch.)  But seriously, if any CDH mamas have some brilliant ideas for me, I'd love to hear them.

And now I've got four million pictures to share.  These are roughly in chronological order, starting from a couple months ago.  Enjoy :)

Curls!  This was right after a bath, so her hair is extra curly.

Curls from the back.

My cute chubby baby at the zoo.

My sweet Henry riding a bear.  Yeehaw.

Henry and Bonnie

Bonnie Bee. <ba-dum-ching>

Henry giving Bonnie some love.

Bonnie not feeling it.

Bonnie and Jonathan.  This one just makes me smile :)

Can't have dinner without wearing your hand-knit monkey hat.

Just because he's beautiful.

Henry reading to Bonnie. Love this.

Happy girl!

Bonnie looooves her puppy Zander.  More photographic evidence to follow.

Bonnie with a bow!

Bonnie and Grandmama in Tennessee

"Hallelujah!"

Yet more hallelujah's.

Hanging out in the exersaucer while Dado cleans out the garage.

Two kids in a tiny chair.

See? Loves the dog.

Poke poke.  (Don't worry folks, he's the world's sweetest dog.)

Check it out!

More Zander love.

Every single day I look at this girl and marvel at how far she's come, and how blessed we are to even have her with us.  Love you, sweet girl.

A Year Ago Today

A year ago today, when I was 21 weeks pregnant, Jonathan and I got the news that our baby girl would be born with a diaphragmatic hernia.

It was a Thursday.  The anatomy scan was scheduled for the afternoon.  Earlier in the day, an article on the bulletin board at work caught my eye.  It was an interview with one of the pediatric cardiologists and it was about hypoplastic left heart syndrome (HLHS). I don't know much about this condition, other than it is one of the most severe congenital heart defects there are. Basically these babies are born with only half a heart and have to undergo several repair surgeries to correct it.  The point of this article I was reading is that 25 years ago, HLHS was always fatal.  It's still an incredibly serious heart defect, but at least there's a treatment.

Reading that article prior to my anatomy scan, I remember thinking, "Wow, wouldn't that be terrible? So glad my baby doesn't have *that*."  The irony just about kills me.  I was soooo sure that nothing could possibly be wrong with my baby.

I had lunch with my friend, coworker, and "roommate" (we share an office) Sarah that day.  It was her son's 5th birthday, so we talked about how fast he was growing up and what kind of birthday celebration he would have.  I told her about the article I'd read on HLHS and how glad I was that my baby didn't have it.  Looking back, what was I thinking?  She *might* have. She easily could have.

After lunch I met up with Jonathan at the OB office.  That appointment is documented here, which is the first post of this blog.  It's when our as-yet-unnamed little girl was diagnosed with a congenital diaphragmatic hernia.  The OB doc, who was very nice but clearly knew very little about CDH, set up our appointment with maternal fetal medicine for the next day and told me not to "lose sleep" over this.  I vaguely remembered hearing about CDH in nursing school, but had no idea how serious it could be.

I'm a member of Ravelry, which is an online knitting/crocheting community that has lots of groups and forums on various topics...including a "Due in June 2012" group.  This is what I posted there on February 2, 2012 following that fateful OB visit:

Sooo, we’ll know more tomorrow after seeing The Specialist, but at the moment it looks like baby girl has a diaphragmatic hernia. Instead of her stomach being below the diaphragm, it’s above. Wouldn’t be a problem except that it can cause crowding of the lungs (and heart too, but apparently it’s the lungs we’re more worried about) and cause them to not develop properly. The good news is that we’re finding this out now and not after delivery. The bad news is, little bit is likely going to have surgery soon after birth to fix this. And may end up being a preemie, if more bowel gets up in the thoracic cavity and causes the lungs to get too smushed…might have to deliver early so she can have surgery sooner.
We’re seeing maternal fetal medicine tomorrow at 8:00, which involves some kind of high tech ultrasound, plus we’ll be talking to a genetic counselor. 
So, if you’re the praying type, or even if you’re not, please keep our little family in your thoughts/prayers over the next few weeks. Thanks :)

I have to laugh a little at my innocence (ignorance) here.  My main concern at the time was apparently that she'd have to have a repair surgery.  I hadn't yet even Googled "congenital diaphragmatic hernia."  No concept of the months-long hospital stays, the extended time on the ventilator, the ECMO complications, the narcotic weaning, the feeding issues.  Y'all.  Ignorance is bliss.  Not that I was blissful, but if I had found out all that CDH entails on that first day, I think my head would've exploded.  God was protecting me.

There is so much I could say about God's grace and peace and provision over the last year, but a picture's worth a thousand words.

Through many dangers, toils, and snares
I have already come
'Tis Grace that brought me safe thus far
And Grace will lead me home

Amen. Thank you all for your faithful prayers and positive thoughts for our sweet Bonnie.

How's that baby doing?

You know how when you're supposed to call someone back, and for whatever reason you don't do it right away, you keep putting it off because now it's been too long and it'll be awkward...and so you wait even longer, and it keeps getting more and more awkward?   Or maybe that's just me. I'm not a big phone person.  Anyway, that's my attempt at a little analogy on why it's been so long since I've blogged.  The longer I go without blogging, the more I'll have to write about and the longer it'll take.  And heck, I've got two kids (at home) now. I don't have time!  So I put it off for when I do have time...and by then there's even more to write about.  You get the point.

So I might as well just jump on in with a little bulleted list, which I will attempt to keep in some semblance of chronological order.

• After her G tube surgery and Nissen fundoplication, Bonnie's life changed in a big way for the better.  The 8 to 12 times a day of projectile vomiting was over.  (Until you've experienced that with your own baby, it's hard to understand how terrible it is.)  She still gags some and can throw up a little bit despite the Nissen, but it's a thousand times better than it was.  Yay for Dr. Surgeon!
• She started occupational therapy in October to work on feeding and slowing down her breathing (chick breathes about 80 times/minute when she's just hanging out).  Occupational therapists are a pretty neat bunch of folks.  Some of their techniques seem a little like voodoo to me, but hey, we're getting results.  Actually, she's still not eating, but after an OT session that involved what appeared to be the therapist just putting her hand on Bonnie's belly in various places for a minute or so at a time, the next day she started vocalizing waaaay more than she ever had before.  So I'm a believer.  Bring on the OT voodoo.
• Halloween!  This was more or less a non-event for Bonnie, but we pushed her around in the stroller while Henry went to about four houses in his super cute dragon costume.

• I went back to work the beginning of November.  It was a glorious day.  Even though Bonnie had been home for two months by that point, going back to work was the beginning of normalcy for me. 
• We've got a nanny who comes to the house to take care of Bonnie.  She has many years of childcare experience, and she does a great job.  I have absolutely no worries when I leave Bonnie with her.  (Found her on www.care.com, for all you inquiring minds.)  Henry still goes to daycare because he loves it, and because Bonnie's pretty much quarantined until April, so it didn't seem fair to keep Henry homebound for that whole time too.  
• Bonnie had her portrait done.  A beautiful CDH survivor named Laycee, who had a stroke while on ECMO, draws these pictures of folks in her own unique style.  We got one done of Bonnie, and I loooove it.  So does she.

• Thanksgiving!  We gave thanks for our miracle baby.  Didn't travel this year because I had no time off, but Jonathan made an amazing Thanksgiving dinner for us.  

• Please notice the progression of chubbiness here.  Once she quit throwing up half her food, she started gaining some serious weight.  Her cheeks absolutely own me.  So much face to love and kiss and squish.  (Funny little side note.  See those little spit bubbles in her mouth?  Whenever Bonnie does this, Henry says, "She's bubblin' up!!!" No idea where he got that, but it's cute as heck.)

• Random illness.  Bonnie ended up with a UTI (urinary tract infection) following a few days of fever, diarrhea, and generally not feeling well.  When babies get UTI's, they usually end up with further testing to make sure there's no kidney reflux (not the actual medical term, but it basically means urine flowing in the wrong direction, which can introduce bacteria from the outside into the bladder/kidneys...which isn't good).  Bonnie had said testing and they found grade 1 reflux (the mildest) on the left.  I'm pretty sure in most cases they wouldn't bother to treat such mild reflux, but because she has a history of renal failure, the nephrologist (kidney doc) thought it'd be a good idea to treat, just in case.  The treatment is prophylactic antibiotics to keep her from getting another UTI.  That means a low dose antibiotic every single day.  They'll check again for reflux in about a year, so hopefully she'll have outgrown it by then and can come off the antibiotic.
• Brother and sister.  Henry loves the heck out of Bonnie.  He always wants to touch her and talk to her, and if she's crying, he'll say, "It's okay Bonnie. We love you."  She is in love with him as well.  She lights up when he comes close and reaches for his face.

• Christmas!  We went to East Tennessee to celebrate with my family.  Henry was super excited about Santa, who brought him a grill (like those little play kitchens, but more manly, or something).  Bonnie had no idea what was going on, but smiled at everybody :)  One of the highlights of this trip for me was seeing Bonnie with her cousin Molly, who is a couple months older than her.  Such cuteness with the baby girls.

And here are a few more pictures from Christmas.

On one of Bonnie's darker ECMO days, I remember praying over these sweet little feet.  Funny how your mind works in moments like that, but what I wanted was for her to grow up to see how those little feet would turn out--like mine (cute...of course) or Jonathan's (cute on a boy, somewhat unfortunate for a girl).  So far it looks like she's in luck :)

• Assorted cuteness.

• General growth and development.  A couple weeks ago, Bonnie learned to sit up by herself.  Big round of applause for that, please.  She was 6 1/2 months old.  Henry didn't sit by himself until 7 months.  Take that, 91 day NICU stay.  She's very social and laid back, sleeps great, and doesn't mind long car trips.  Still not eating by mouth, and no babbling yet...but hey, that's what early intervention (i.e. therapies and such) is for.

So there you have it.  You might be wondering what inspired this blog post tonight, and the answer is that two really nice Bonnie-related things happened to me today*.  That got me thinking about all the niceness that was lavished on us while I was pregnant with Bonnie and through her NICU stay and beyond.  So this mega-post is sort of a thank you for following Bonnie's journey and for blessing us with your prayers and encouragement.  

*The aforementioned Nice Things were these.  First--this morning I got a phone call from a local photographer informing me that our family had been nominated by "someone who wants to remain anonymous" for a free 30 minute photo session.  So so nice.  Second--I had a customer service experience that probably warrants a raise for the person involved.  Big thank you to Jason from Equipped for Life.  He will never ever read this blog, but I'm thanking him anyway. :)