Our little trooper (update on Avery)

As I mentioned in a previous post, Avery went in for an MRI and CT two days before Christmas.  Which means that on Christmas Eve, we got the news that Avery does indeed need to head into the operating room. :( She was an unbelievable trooper (she wasn't able to eat for about 9 hours by the end of it!), and we're thankful it's not worse than it is... but we're still extremely sad to have to watch our tiny little peanut go back under anesthesia and even more sad that they'll have to remove what they believe to be polyps (semi-common in CF patients, though not usually found at this young of an age) from both her left and right sinuses.  We head in for that on Friday.

Back to Dec. 23rd, I treated Avery to a little cartoon time with her brother in the morning:

 And then VERY hungrily we headed to Children's Hospital.

We were able to get her dressed in her gown and take her to the CT (she wasn't too fussy and thankfully didn't have to get anesthesia for that part)...

But sadly we weren't able to go back for her MRI or for when they put her under.  So it wasn't until about an hour later that we were reunited with our groggy, sad, cranky little peanut.  It was so sad to see her so confused and hungry, but thankfully I snuggled her LOTS and she eventually perked up and chowed down a bottle. :)

And we still snuggled more at home. I love this girl and am so sad she's having to go through all this, but we are hopeful that the end result will be worth it all.  She is so so brave!

Women I'm Thankful For

It's no secret that I'm thankful for so many people in our lives that have - especially as of late - been there for us and stuck by us through good and bad, fun and hard.  This month I was particularly aware of how awesome the ladies in my life are and how incredibly blessed I am to have these friendships. I don't know how I'd do it without them to be quite honest! 

I hosted our small group's 5th Christmas dinner this year (it used to be at Keri's house, but you know, she lives a million miles away now...). It was so awesome for me to prepare a meal for some of the best ladies I know. We had a great time chatting, reminiscing over our year and our friendships, and celebrating all that God has done in our lives and in the lives of those around us.  We've been through SO much as a group, much more than I'd ever wish on others, but I am SO thankful that we have been through it together.  (Of course I wish this picture showed the beautiful faces of Keri and Rachel, because they've been such a huge part of my life for the past five years, but we know they are building new foundations and homes for their families in Michigan, so that's that :) )

And then there's these ladies, who I can't even believe I'm fortunate enough to call friends, let alone neighbors! They take my son at the drop of a hat so I can have a few moments to clear my head, they drop off meals at the most amazing times (i.e. when I have no food), they encourage me to get my butt in gear... and they laugh and drink wine with me, which is just about the best therapy money can buy :) This month we had a little cookie exchange/wine night, and it was another night of great conversation and great friendship.

Here We Go Again - Back to Children's Today

For almost two months, Avery has had trouble breathing through her nose. She started getting extremely stuffy noses but wasn't showing any signs of having a cold (thankfully, as we checked religiously for any sounds of lung congestion). It was awful at first, her sleep was ruined because she couldn't breathe through her mouth well yet, and not being able to use a humidifier due to the risk of spreading bacteria, she had a bloody nose regularly (multiple times a day).  It was sad for her and her parents, that's for sure.

But after several weeks, nothing seemed to be getting much better, and at an appointment with our CF Clinic, the respiratory therapist tried to put a little catheter type thing down her nostrils to suck some of the deep-down snot out.  She got plenty out of the left nostril, but when she tried the right, it didn't seem to go down.  We asked our pediatrician to check the following week during her four month checkup, and he also noticed a narrowing of some kind in the right nostril... so together, he and our CF doc recommended we see an ENT.

The following week we took yet another trip over to Children's to meet with Dr. Prager, a pediatric ENT.  He decided to scope Avery's nose (not fun for the poor girl!!) and sure enough found some kind of mass in her right nostril. :(  Not the best news, but at least we know what's been causing her breathing trouble.  

So today we are heading back to Children's for a CT and an MRI of her nose/brain to see if we can figure out what the mass is and/or where it's coming from.  (We had to be done feeding her at 7:30am this morning and I don't think she'll be able to eat until around 5pm. This poor girl!) There's a chance it could be brain tissue of some kind that got pinched off in development, so apparently there's a chance we may have to meet with a neurologist soon as well.  Either way, we hope to know tonight or early tomorrow, and at that point she'll likely have to have it surgically removed. Again, not the best news, but if it helps her breathe, we'll be happy in the end.  It's just this stuff in the middle that really sucks to be honest.  We are hoping as 2014 draws to a close, that with it her need for so much medical attention comes to an "end".  Trust me, I've learned a lot from this sweet girl already, and one of those things is that a mama's heart is very fragile! I just want her to feel better and to grow healthily, and every bump in the road weighs my heart down just a little bit more.  

 Super happy before the doctor arrived:

 Scope time (i.e. NOT happy):

Happy 4 Months to Avery!

Dear Avery,

You are four months old now! I know you'll never remember being this age (phew!), but we're so happy to finally start seeing some of your personality and joy.  It was a rough first few months, but we can tell you're starting to feel better and enjoying the world around you so much more!!

You're still a super tiny peanut, clocking in at just 10lbs 14oz during your 4 month checkup (1st percentile, baby!), but don't worry, your head is in the 40th percentile, so you've got tons of brains to make up for any lack in stature you may have.  :)  You are smiling SO much these days, and we just love seeing the look of happiness on your face.  Plus, you have a big brother who adores you, and I love catching you stare lovingly at him, too!

You haven't really started babbling or giggling yet, but the doctor said you've had to focus so much of your energy on feeling better, that we shouldn't hold you to the same milestones as other little babes of the same age. You're on your own path! And that's ok with us.  Because we know you are a brave, sweet, loving young lady. :) This month you've struggled with some nasal/sinus issues (we'll be visiting an ENT soon and hopefully getting sleep soon), but we're VERY thankful that most of your tummy issues seem to be resolved (after a visit to the GI and a UGI where you had to drink barium!)  You are seriously a rockstar sweet girl!  Plus, now that your nose seems to be doing a little better, you've been giving us 8-9 hour stretches of "sleep" at night!! Maybe we'll even move you into your crib soon...

You do still love grabbing toys and clothes. Mostly your pink ball and the twisty rattle... along with anyone nearby! You love to smile at anyone who smiles at you, and you love to dance with us :)

Here are some of the smiles I'm talking about... though whenever I pull my phone up to take a picture, you immediate get mad.  I get it, put the phone down mom!!  Message heard loud and clear :)  Just keep these smiles coming!

You've been enjoying seeing your buddies lately! It's fun to see you focus on them and smile!

You took your first nap with your brother last month :) It was quite a trip for your mama to experience!!  You still don't do it all the time, but it's so sweet to see the two of you in your room together!

I caught your brother spying on you...

Sometimes we all cuddle in bed together after daddy goes to work.

 Or you just snuggle in by yourself...

You had your very first Thanksgiving! (Complete with a turkey bib) :)

And now we're celebrating the Christmas season with you! We LOVE it!

Sweet girl, we just love you to pieces.  We're excited to watch you grow and grow!!! (We were supposed to start you on solids after Thanksgiving to give you some extra calories, but you didn't seem to be interested, so we'll start that next week!)

Love,
Mom & Dad