A Little Hiccup & Christmas Cheer

What a Week!

We started the week out with Ms. Maggie recovering nicely from surgery.  She seemed to enjoy being extibated and was again starting to go down on her oxygen support in hopes of moving off that machine so she could begin taking bottles!  They even mentioned to us that as long as al goes well she would move to the red team (discharge team;))!  

We were thrilled with her progress and enjoyed celebrating all the good with a visit from my Auntie Anna and Gino;).

Nothing like goofing off in a Crate n Barrel display with your sister- ha!

Lil Miss enjoyed her first cuddles with Auntie Anna.  I enjoy so much introducing Maggie to my siblings.  They all seem so comfortable with her petite-ness and 'acessories' as I call all of the tubes and wires coming from her;).... thank you Aaron, Abby, and Anna for being excited with me through all of this!

Nothing like some good-ol'fashioned cookie decorating.  What do you do when you have no cookie cutters?  Improvise with cookie snowmen;).  And what do you do with a VERY excited 2-year-old when it comes to icing and sprinkles?  Just let her HAVE at it!  Squirt icing she learned is so easy to use and FANTASTIC... but shakers of sprinkles- she unloaded one WHOLE container on her snowman and just kept on truckin- ha!

Thank you, Anna & Gino, for your incredible patience and sharing in Harper's Christmas Magic.  Her face as you surprised her at school, saw Christmas lights with her, watched Polar Express, and decorated cookies with her was priceless... and an incredibly uplifting memory I will always have- so amazing!

Right after Anna & Gino said their goodbyes, Ms. Maggie took a little turn.  We noticed she was struggling more and more to breathe and just seemed exhausted.  It was discovered she had significant stridor which is a cough and difficulty breathing.  The stopped her feeds, gave her breathing treatments and started her on steroids to help with the inflammation in her throat, but the cause of it is slightly unknown.  She had a rough couple days as her little body began to calm down from the stress of breathing and then she scared us as her heart rate significantly dropped and would not go back up.  After running numerous tests to rule out scarier issues, it was decided the extremely low heart rate was just a side effect from the steroid given to control inflammation in her airway.

She was one episode away from being intibabted again and I'm telling you I was just by her bedside hoping and praying we wouldn't have to go back down that road.  I even whispered to her, "all I want for Christmas is to keep that tube out of your throat"- she listened.  Thank goodness it never got to that. She was a rock star... she may have been sleepy, but just knowing there was a possibility of that tube going back in her throat snapped her out of it ;).

After a few scary days, she seems back on track.  She's sleepy and a little cranky, but she's back eating and her breathing support is back at a more manageable level- so grateful!

So, as we begin this Christmas week we cannot help but smile: both our girls seem content and happy- what more could we ask for?

We wish you all a very Merry Christmas.  I hope it is full of love, family, and a little Christmas magic ;).

Love, 

Pete, Amy, Harper, & Maggie

The Magic of Christmas....

Gosh, I don't know if it is having a 2-year-old this Christmas season or the reflection over the year we have had, but I am overwhelmed by the magic of Christmas...  

I think these past few months have forced me to slow down, and breath in all the beauty of this world.  When tragedy happens and you start to come out of your 'dark place' there is this sense of gratefulness of what you do have.  I don't know how to explain it, but I find myself enjoying the simple and pure moments with my family and my children.  I am one of lists and busy schedules.  I enjoy purpose in a day and thrive with a plan.  I think when tragedy strikes, no matter what the shape or form, it helps you clear the fog, loosen up the reigns a little, and enjoy what you do have.  Maybe I sound like a Hallmark card- ha -  but that's the only way I can describe how Pete and I are feeling.  

I would be kidding to say celebrating Christmas knowing my family will forever, physically, be separated is easy.  It is a tough, tough pill to swallow.  It really bites, but man-oh-man, I'm telling you little Ms. Harper just snaps me right out of that funk.   I'm telling you- Christmas with young children is out of this world cool!  May seem crazy, but I am completely overwhelmed by Harper's utter wonderment in the 'beautiful lights' she calls them EVERY time we see Christmas lights, her jaw wide open as she saw her first snow covered trees this past week, and the magic of Santa... it all is so unreal.  I am happy to slow it all down just to enjoy the excitement and pure joy she has in all that Christmas is.  It helps to have her through the tough stuff- I'm so grateful.

With that being said, this past week has been a do-sie for Pete and I.  I don't know what my deal was, but last week I was a nervous wreck over little Maggie.  I don't know why it was this particular surgery that got me... you would think I would be used to the needle pokes, various diagnosis, setbacks, and the roller coaster of it all, but for some reason I was just sad.  I just had had enough of the crazy this little baby has endured and went into a bit of shutdown mode... I just couldn't handle watching her be intibated again as I knew how much she hated it.  I couldn't handle knowing she had to go through another rough patch.  Her little body just didn't need anymore.  I know how bad that sounds... I should toughen up and be the momma she needed, but it was a rough one for me.  Seeing your baby awake with bright eyes and cooing and then the next like this- intibated and not moving- ugh... it was rough.

Even though Mommy went kicking and screaming, Maggie did wonderfully through the almost-3-hour surgery and the doctors felt confident they had stopped the issue happening with her eyes- amazing!  Oddly enough, with the little ones, the harder part is the recovery.  Anesthesia takes them down and it can take days or weeks to really wake up.  So, the days following her surgery we spent as much time as we could with her talking and reading to her, but her body was so stressed from the procedure that she wasn't tolerant of light, noise, being touched... really anything.  Again- I had a hard, hard time.  

And then Sunday came.... Ms. Maggie woke up and was madder than a red hornet.  She no sooner opened those peepers than she tried ripping that tube out of her throat and kicking like crazy.  After doing this for the better half of a day it was decided she was probably ready for that tube to be taken out;).  With Daddy by her side, she went from madder than heck to completely calm as they pulled the tube out- love!  Harper and I just happened to be there as well, so with Maggie awake, we brought Harper to her bedside.  Harper chatted with her for a good while and Maggie turned her head and just stared at her- it is one of the most beautiful things to watch.  Harper rubbed her hand and kept saying, "You're ok, Maggie.  I'm right here".  Love these sisters!

Needless to say, since Sunday, this little girl hasn't touched much of her bed.  We have Ms. Maggie right back where we want her- nestled in our arms- cooing her heart out;)

What a whirlwind but we feel back on track and enjoying all that is getting ready for Christmas.  We wish you a WONDERFUL Christmas-Prep Week;).  We hope you all are enjoying the magic that is this time of year... 

All in an Hour's Time...

What a day.... another day in the NICU for sure....

In the beginning of the hour:

I was rocking Ms. Maggie as she had just had her bi-weekly eye exam.  She hates those darn things, so I was enjoying doing my 'Mommy Thing' and calming her down with a pacifier, a gentle pat, and a soft rub on her forehead... she seemed to enjoy our moment together and I thought it was so cute how she turned herself so that her face was snuggled right into my arm- this mama was in Heaven.

The doctors came by to do their morning round and were beaming with good news.  They first briefed us with all that was going on with Maggie: she was moving up at a productive yet steady speed with her feeds (up to 17 ml today:)) and was pooping like a regular newborn.  Yes, I do mention poop, but as I mentioned before... we'll take it... we like lil miss doing things just like a regular 37 week baby;).  With that they said the sentence we had been longing to hear since the moment we began this journey:

"We don't have a crystal ball, but we feel confident in Maggie's health in that she can be moved off the acute care team to that which prepares her for discharge.  We feel that you both can breathe a sigh of relief.  We have made it over the big hurdles and it's no longer a life and death matter."

I just sat there staring at them.  I had to take a few deep breaths and swallow back the tears wanting to burst out of me.

As parents, going through the excitement, loss, grief, frustration, and just being scared-to-death feelings that we have felt lately- just makes you want to squeeze your children that much more.   I couldn't help but just squeeze little Maggie and tell her how proud I was of her.  At the end of the day, through all the crazy of this journey, all I want is to be able to squeeze my children and tell them how much I love them.  You want them to be ok.  You want them to not feel hurt- to get better if they're sick- to be happy- and bottom line, to know that you love them more than anything.

Well, hearing that news caused a rush of feeling and emotion.  If I wasn't cradling baby girl in my arms I would have leaped into the doctors arms with a huge hug.  My baby girl was "graduating" as they dub it in the NICU- truly amazing.

As the hour continued I thought through our journey and even in the past week all that we had enjoyed with Ms. Maggie:

Daddy and I are now officially on duty;): we bathe her, take care of diaper changes, temperature reads, weighing her, cleaning her up, changing her clothes, and anything else they'll allow us to do.  We love the simple tasks of feeling like her parents;).  And PS: she is officially out of preemie clothes!

Cuddle time with Uncle Aaron... accompanied by some smiles.  

Pretty sure she wanted Aaron to rub her forehead all day;).

....and then some cuddle time with Nana: of COURSE there were more smiles involved;).  "Nana, rock me, rock me;)"

So, lost in daydreaming I was.

And then the hour continued....

The eye surgeon came back to do a follow-up eye exam as something was concerning.

My heart dropped and the lump formed in my throat.  I knew her.  I'd seen her other times with other babies as they came back from surgery.  She meant there is a problem.  She meant that Maggie needed surgery.  I just kept thinking... please, I just want to rewind to 45 minutes ago... we're graduating tomorrow- this is NOT happening.

And then it was confirmed: Maggie had a condition called ROP.  The long and the short of it is that the blood vessels in her eye are not growing appropriately and therefore are growing a little haywire.  This is the main cause of blindness in premature babies and can turn into such without proper treatment.  They can perform a laser eye surgery to help, but unfortunately it kills tissue in her eye causing her to have permanent vision loss.  She will hopefully retain some sight, but will have a tunnel vision sense of sight and more than likely will wear glasses.

So what does this mean?  Emergent surgery on Wednesday morning that takes a couple hours to help stop the blood vessels from going haywire.  She will be re intibated and we will stop her progression of eating temporarily.  She will be on a combination of medicines for the surgery and we just have to wait to see how she comes off of them.

Graduation will be put on hold for Ms. Maggie.  She has another hurdle and although I am sad and scared; I will show her my brave face as I want her to have hers on.  I just want my baby to have some peace.  For us to be able to enjoy a little happiness for longer than an hour.  I know its so silly and selfish.  I know we have so much to be grateful for, but it just hit me that this is the first life-long issue that we know for CERTAIN she will have and it felt like getting punched in the gut.  I can't change this for her and I just have to help and guide her through this.... 

Of course, the whole rest of the day she's been right in my arms.  I couldn't let her go knowing there was a problem and knowing what she is about to go through...

God does work in mysterious ways and He knew that this was going to be a tough day for us.  A couple of Pete's friends he used to work with happened to be in town and had previously invited us to dinner.  As Pete and I, near tears, drove there I knew we both had our heads spinning.  But God knew... we both needed a hug and support and He provided.  It was wonderful to visit and to have the beautiful reminder that we aren't going through this alone- so amazing.

So, after a Daddy-Daughter carousal ride and a fantastic dinner with friends we go to bed again grateful... for the beautiful thing that is family and friends during this chaos.  And knowing that through all the crazy emotions we felt today; through the excitement, loss, grief, frustration, and just being scared-to-death feelings that we have felt all in one day- we still were able to kiss and hug both of our girls good night.

Just another hiccup to overcome... we wanna keep those peepers seeing this beautiful world she's apart of;).

Almost 3 Months Old!!

Can it be?!  She's just a few days away from being 3 months old!

Well she's choosing to celebrate in style:

big girl bed.... check

5 lbs 3 oz.... check

eating 3 ml every 3 hours.... check

Such a big girl!  Here are a few pics from the last couple weeks of lil miss;):

"No thank you... I'm not up for exercising today", says Maggie to the physical therapist.

love her expression and the way she's looking at the therapist- ha!

 

Once upon a time....

Harper's first sisterly duty accomplished!  She read her sister a little story- adorable!

Harper visited Santa this year!  

This is a huge accomplishment as the last couple years she has completely FREAKED OUT when I asked her to sit on the big man's lap;).  She was shy at first, but after a hug, she sat in his lap and promptly asked for a book about dinosaurs- ha!  Wow- she's dreamin' big;).

O Christmas Tree... O Christmas Tree.

Harper is OBSESSED with the tree this year.  She loved hearing all about the ornaments and then of course making up her own stories about them- so sweet!  I am so excited for Christmas with Harper this year.  She is at the age of beginning to understand it this year and I LOVE that.

I have to say, I did get a little TOO excited and started an Advent calendar with her today with little drawers where there is a fun prize or treat within.  Well, someone discovered that those drawers are NOT under lock and key and she opened them each up and oh yes, organized the treats and stickers into two separate piles... WOW.  Looks like I have learned 2 things: activities need to be organized by color or by similarity AND I need a new way to celebrate the countdown to Christmas;)- thank you, Harper!

Lastly, I got to give Maggie her first REAL bath!  She sat in a basin and everything- so sweet!

disregard the fact that my eyes are closed.... I think you can see my excitement (and of course Maggie's;)) as I enjoyed another addition to my 'Mommy Duties'!

My (very sleepy) fresh and clean baby!  Love her!

I Am Grateful...

Thanksgiving 2013

I am Grateful....

I am grateful for love.

I am grateful for faith.

I am grateful for family.

I am grateful for friends.

I am grateful for the journey that is life.

Usually I spend Thanksgiving with those I love, some years with family, others with friends, but always together, enjoying yummy food and a day to kick back and relax (after the cooking of course;)).  Of COURSE, this year was different.  Yes, I was with family.  Yes, I enjoyed yummy food.  But the relaxing part just wasn't there as much (and let me tell you it wasn't for sake of trying;)).  I LOVED being with my family and oh MAN... just being back home with my siblings was so wonderful.... there was just something missing.  

I have been saying that having a little one in the hospital through the holidays would be kind of fun in its own way: new and fun holiday activities, little faster pace to help get through this part faster.... and those things ARE true, don't get me wrong... it's just so different.  So different than I anticipated or WANTED for my family for that matter.

Bottom line: I'm missing my lil family of 6 this holiday season.  As time wears on I struggle with forgetting their smell and the way they looked, Nora so squirmy in her issolette and the way Jack felt squeezing my finger.  I miss not being able to hold them and celebrate these first holidays with them.... the way we were suppose to.  It's so silly and selfish of me as I know the blessings are immense for us this holiday season, I am just having a hard time with the "first holidays" without all my children.  I know they're right here with us as we decorate the tree, see Santa, enjoy a family meal, and root Maggie along as she kicks butt and takes names;), but I just miss them... and it seems especially hard during this time of year.

So yes... I am so grateful for ALL the blessings of this past year, even though two of the biggest ones just happen to be cuddling up in Heaven;). 

I am grateful for...

Amazing friends for Harper....

And amazing friends for me....

...a few of which who were able to enjoy our Pre-Thanksgiving meal;).  I am Grateful.

I know I didn't get to visit with all of our Bentonville 'family', but I cannot wait to be back for REAL soon and give you each a HUGE hug for supporting us through our crazy!

I am grateful for my little angel babies... and my wonderful husband for making their monument look so pretty for the holiday season!

I am grateful for little sister who decided to rock it in a big-girl crib this Thanksgiving!

I am grateful for family... the endless amounts of patience they have with Harper drawing pictures...

....making gingerbread houses....

...and being ok cutting loose with their nerd of an older sister;).  I am grateful.

I am grateful to my little babies and the impact they have had on others, including my youngest sister, Anna, who gave a heart warming speech in front of her high school student body this past week, highlighting all of the blessings within the tragedy of infant loss.

Thank you Anna for standing up among all those people, representing all that is beautiful in this otherwise painful story... thank you:)

I am grateful for family and the amazing thing that is faith.  We have always associated a heart with lil Maggie as it was the shape that formed on her issolette the evening she was born.  We missed her this Thanksgiving, as we drove to Indianapolis to share the meal with family... but she showed us that she WAS with us: while my mom was peeling potatoes, she found this potato in the bag... it was shaped like a heart.  It didn't become mashed potatoes that day, but instead part of the symbolism of the day....

...we have so much to be grateful for....

I hope you all enjoyed a wonderful Thanksgiving week!