Life as We Know It

Goodness have we already been home for a month?!  I cannot believe our littlest munchkin has been home with us for that long already!  What a wonderful few weeks it has been: moments of happy, with a slightly shorter fuse {surely from sleep deprivation;)}, and some crazy.... and ya, a little more crazy- ha!  I know Lil' Miss is so small, but between her and her big sister, my stay-at-home-momma days go quickly.  

When I picked one of my friend's brain about her 'schedule' with her kiddos she said basically she keeps kiddos happy and has many 'attempts' to accomplish things- I agree 100%!  It felt good to know that someone else feels like they hop on a hamster wheel on a daily basis as well;)- thank you, Megan... Yes, I have officially begun the 'Momma +2' stage of my life... lots going on;).  Honestly, though.... who am I kidding?  I am eaten up the happy chaos that surrounds me day in and day out....

 The Moby!  This thing is sweet;).... Never had one with Harper, but the things you can accomplish with two hands- amazing!  Strapping the youngest to you allows you to accomplish much more;)!  I've decided it's a must!  Allows me to feel a little more in control...

 Until there are moments like this... yes, this was one of Harper's 'naptimes' last week.  When she went to bed the room was neat and tidy and blinds closed.  I went in to check on her 40 minutes later... she actually WAS finally asleep, but it looks like fun was had during her quiet time... I'm telling you she was quiet as a MOUSE, people, as she reeked havoc on her room- goodness!

 ...so, to help keep the energy levels more reasonable;)- we started Harper in gymnastics!  She loves it so far- thank goodness- and is working on her forward roll- adorable, but she's so proud of herself when she does it.

 Someone enjoyed her Saturday hike with Daddy.  Really trying to have undivided time with Harper continuing to do NEW things... a little challenging, but her excitement to spend time with either Pete or I one-on-one makes it worth the extra planning!

One of the main reasons Harper wanted to come back 'to her big house' was to be back with her 'furry sister'.  These two spend so much time together- Emma is getting a run for her money these days having us all back;).

 But THIS is what makes my heart so happy.  Yes, we are on a bit of house arrest, but seeing the love these sisters have for each other is priceless.  I find them together like this ALL the time!  Harper encouraging Maggie as she does tummy time {or talking quietly to her as she falls asleep mid-exercise- ha}

Harper is ALWAYS there to comfort her, with nummies {aka: pacifier} in hand....

...or to simply hold Maggie's hand as she falls asleep- LOVE!

 ...and then, as if it cannot get any better- Daddy comes home to spend some cuddle time with his girls.

Look how cute that face is without oxygen... this was just after bath and I was getting the new tubes in order, but I HAD to snap a pic of this adorable 'tape free' face;)

It has also been wonderful to have a couple of Harper's friends over to play.... we're enjoying being back to playing outside.... 

and playing dress up;)!

Life as we know it may have its sleepy moments, but we're enjoying getting used to our new normal: lots of playtime, home made meals, and being together as a family.... 

 ...as happy as I am, I really am missing these little angels.  I remember telling Pete that the death of our munchkins really hadn't had a chance to hit me with all the crazy that happened just after losing them, but now that the dust has settled and there are more quiet moments, my heart is beginning to ache for them.  I know they are in a better place and their lives, although short here on Earth, were powerful.  Jack touched so many in just 3 days, and Nora had us all wrapped around her little finger in her 11 days, but man oh man.... what I would give to be cuddling them all together.  It's this weird feeling I have: no matter how good of a Momma I try to be, how much I work to be a better person, nothing- not one thing I can do, can bring my babies back.  Its just a strange and tough concept to grasp.  

Thank you to ALL of you who have been patient with me these last couple weeks as I try to work through the emotions of losing 2 of my children.  I miss them tremendously and am continually working toward finding my new happy.  I used to be so naturally happy and I am finding it hard... my guard is up and as much as I want to take a deep breath, let it go, and move back to pure happy... I just don't think it is possible.  I am paving a new happy without instruction;)....

Life as we know it: so different yet so blessed.

Back in the Same Zipcode;)

Wow!  Week One of having Ms. Maggie home is in the books!  We cannot feel more blessed or be happier to have our whole family under one roof- truly amazing!  No hiccups this week {other than the odd effects of sleep deprivation...in giving directions to our home I forgot what street I lived on- and then preceded to give her directions to our apartment when we were in St. Louis- OH.  MY.  WORD.}.

With that being said, Top 10 AMAZING Heartbeats from this week:

10. We can take the girl from St. Louis, but we'll NEVER be able to take the St. Louis from her.  What a bittersweet day, last Tuesday was.  I choked back the tears the whole time I was saying my goodbyes.    It was such a whirlwind of goodbyes and paperwork and packing-oh my!  As thrilled as we were to get out baby girl home, it was tough walking out of NICU Rm. 518.  Our little one's home for nearly 5 months, St. Louis Children's Hospital is truly an incredible place.  The friendships and 'family' we have gained during our stay there is irreplaceable. 

I will never be able to look at Maggie without thinking of the countless hours, love, and effort you all put into caring for her, keeping her happy, and ultimately saving her life- truly amazing.  To each and every one of you wearing a SLCH badge- thank you for all you do.

9. My-oh-my an incredible man Pete is as a Daddy and a Husband.  I get a little zoo-ey when change is upon us, but Pete just sinks his heels in and goes with it.  I am so scheduled and predictable whereas he just rolls with it.  Things got a little chaotic our last couple days in St. Louis, and even after we got home as we all began to adjust- he just took it in stride.  I had my moments of mayhem, but he was unfazed and just helped me to CALM DOWN- something that doesn't come easily;).  I am so appreciative of him putting up with my crazy and how much he genuinely enjoys being a Daddy times 2;)- cannot thank him enough for keeping out family sane in the most insane of moments- ha!

8. Our incredible family and friends.  We were overwhelmed by the homecoming last Tuesday evening.  From the oodles of texts, Facebook messages, emails, and calls to the decorations, freezer stocked full of meals, and sweet gifts for Big Sister... it meant the world to us.  Our family has been supported by so many- including those I've never even met- you all are such a blessing in our lives- thank you for making us feel so special and loved.

7. Dinners: I cannot thank everyone enough for the food we have received.  No kidding, I didn't need to go to the grocery until yesterday!  Some days (ok- lets be real- every day;)) I have met my match and just popping a home-cooked-previously-prepared meal into the oven just puts a smile on my face (and my family's) as we get to enjoy that time together without the fuss- so wonderful- thank you!

6. The priceless gift of my mother: I have always known what an amazing gift she is, but nothing like being completely exhausted, at a near-melt-down moment, and having her there to just take over, help me relax, keep both girls happy, all while having a smile on her face.  

Mom, thank you for spending a week with us as we got adjusted.... REALLY don't know how I would have gotten through it {or what my state would have been-ha} if it wasn't for you!

 5. Having our family all within the same zip code.  Need I say more;)?  It just makes my heart smile to see Harper {aka: Elsa as she likes to be called;)- Frozen much?} dancing and singing 'Let it Go' at the top of her lungs, and then my husband, feeding our little one.... oh man it rocks.  It makes all the tough times worth it just knowing we're altogether again. 

4. Being able to visit my angel babies.  I talk to them constantly, so I honestly always feel like they're always around me, but it was wonderful to actually take some time and 're-unite' the triplets again.  There memorial is beautiful and someplace we'll be taking the girls to for years and years to come.  Felt good having my 'kids' together again for the first time since September... Maggie was snoozing in the car during our visit, but for this Momma it felt good having my babies together.

3. And speaking of kids.... these sisters are connected for sure.  Harper loves everything about her baby sister.  Whether its grabbing a fresh diaper, talking to her during tummy time, or just kissing her forehead- Harper is awesome.  I thought as soon as the 'couple day luster' wore off that Harper would have her frustrating moments, but she continues to enjoy the time she spends with Maggie- I am so incredibly grateful- makes my heart happy!

2. We LOVE Facetime!  We are on 'hibernation status' through the winter.  Probably the hardest part of all of this, as I honestly want to hug each and every person who helped carry us through this crazy time in our life.  We for sure enjoy our play dates via facetime for now;)!

 1. And the very best heartbeat: being able to wake up to this face in our own home....even though our sleepy peepers see her at all hours of the day, it is worth it to see her cute self so comfortable at home!  Love her:).

So... one week in the books and we've stayed fed, have managed to actually GET sleep, and have spent many happy moments together.  I consider that a win:)....  Cannot wait to continue this next chapter of our lives;)!

A Perfect Gift

It has been an eventful week with Lil Miss Maggie and Harper.  Daddy has been in Bentonville with work and Mommy has been 'manning the cave' ;).  The girls have kept me BUSY!  I sit down to do an update and usually scroll through pictures of our family time trying to pick a few choice pictures, but this time there was no choosing- there were only a couple- goodness!  Yes, I think I am beginning to learn what life with two little ones is going to be like- not much rest let alone a moment to snap pictures!  

Of course there are always heartbeats and hiccups...

Heartbeat

Pete & I had a discharge meeting this week with the teams that have cared for Maggie during our time in St. Louis.  We went through the MRI results of her brain, discussed the possibilities for her future, and discussed those things that will be necessary when we are home.  It all-in-all was a nice meeting but I know for me as her mother, going over what she has suffered through was tough.  In these types of meetings there are so many numbers and statistics but nothing is set in stone.  Maggie is Maggie and even though some crazy things have happened in her young life I know deep down she has tremendous potential and we will do whatever we can to make sure she feels loved, encouraged, and respected her whole life.

Slight Hiccup

Maggie was off oxygen for almost a whole day, but baby girl got tired and just wasn't eating as well.  They put her oxygen back on and although it is a teeny tiny amount, it is making a difference and she is back eating well and gaining weight and that's ultimately what we care about.  

As I mentioned before, bottle feeding for a preemie is an exhausting and slow process for the little ones.  Maggie is taking bottles and breast feeding very well, but she gets tired quickly.  Although she continues to increase her volume it is slow.  With that being said, we have also decided it would be ok to take her home with the feeding tube.  Our hope is that when we are at home, on our own schedule, that she will get rest she needs to increase her stamina for taking more and more bottles;).

Bottom line: Ms Maggie will go home with a few 'accessories' as I call them, but she is comfortable and growing with them so we will be ok adjusting to them for a little while;)...

GREATEST HEARTBEAT EVER....

Tuesday, February 4, 2014

Our little miracle will be exactly 5 months old.

Our baby girl will be going HOME!

We cannot believe we're in the last couple weeks of our time in St. Louis, but our little one seems more than ready to see what Arkansas is all about.  We cannot be more excited for all the crazy chaos, learning, and next stage of our life with all 6 of us back in the same county- we're thrilled!

We look forward to doing lots of this- minus the yellow gowns ;)....

...and even more of this- "burp for Daddy" ;)

I am beyond excited to take her home, but this past week has brought so many emotions.  I guess I just always anticipated this all to be different.  I haven't spent more than a couple nights at a time in our Bentonville house since the babies were born and I dunno.... I'm so nervous to be back inside those 4 walls trying to 'pick up where we left off' as I don't really know how to do that.  Everything has been so busy-busy since the little ones came into our world and our focus has always been on our family- going through the motions, sticking together, while hoping and praying there would be a happy ending.  

Well- that happy ending is upon us and I find myself teary again.  It's a mixture of tremendous gratitude for all the blessings in our life but also of sorrow as I continue to grieve the physical loss of my angel babies.  I know I'll see them when I look at Maggie.  I know I'll see them when I think through all beautiful moments I did have with them.  I know I will miss them.  Missing them is so hard some days. How do you keep going through those down days?  I honestly have no idea, but I do know I'll continue to put one foot in front of the other and find happiness and joy in the blessings around me.  So while this Mommy deals with the swirl of emotions, I know that our little family cannot ask for anything more than being able to walk out of that hospital with Maggie- it is truly a miracle...

and honestly the most perfect gift.

Happy 5-Month Birthday Baby Girl & Welcome Home;)... we're almost there!!

Getting Our Ducks in a Row...

I am so apprehensive to even begin this post as I am still trying to let it all sink in that our journey is inching closer to the next chapter...

As this week goes on, we are learning more than ever about all that is going on with Maggie and what "home life" will be like.  I know I have been anxiously awaiting these moments with her doctors and nurses for some time now, but honestly... it seems surreal- like wait, we're not actually getting READY to go home with her, right?!

A quick update on Little Miss:

She is doing well with her bottles; she took her first full one last night, and today I got to feed her, her second full bottle- so cool!  She is a crazy eater and is showing all good signs of being ready and eager to eat by bottle- love it!  They are continuing to wean her oxygen and she is down to .3 liters which is wonderful and she seems comfortable.  Her bowel issues have cleared themselves and the only remaining issue is a hernia where one of the drains was previously placed.  We will come back when she is bigger for that surgery as it doesn't seem to bother her much and surgery likes babies bigger;).  Her eyes are doing pretty well; the ROP is at bay right now although there is still a little blood in her eye it's nothing concerning at this time.

With that being said, everyone is gearing up for her departure from St. Louis Children's Hospital sometime within the first couple weeks of February.  We are so excited yet freaking out a smidge;).... just so much swirling around in my head right now!

"Thanks for visiting me, Nana", squeaks Maggie:).

I promise she really does open her eyes... it's just during those times I am gabbing away and we're 'getting to know each other' and I never think of snapping pics- those peepers do open- I promise;)

It's crazy... I sit back and think through this journey and I always just prayed for the next hurdle and for God to give me just one more day with my little ones.  I had no idea what the future held and maybe as a way to protect myself, I just thought on small terms- "oh how amazing it will be to see her little peepers", "holding her will be a dream", "I'm pretty sure I'll be grinning ear to ear just to give her a bottle", but now we're talking about her LEAVING St. Louis, leaving in a car with JUST Pete and I, and going HOME with JUST us.... I mean, are they for REAL that they think we're capable of this;)?!?!

So ya.... that's about where my brain has been much of this week.  But when I stop 'totally freakin' out man' I just about start crying... what an amazing miracle we have been given and the rest of my life will be spent appreciating life so much more than I ever did before.  Friends rock.  Family is a precious gift. And prayer is an unbelievable source of strength.  I have learned so much these past 5 months and am eternally grateful for the village (ok, let's be real- the cities;)) that have helped us and lifted up our family, carrying us through this crazy time.  

I know that this journey is not soon over.  It's not over when we sign discharge papers.  It's not over when we say our emotional good byes or even over when we walk with that carseat through the door of our home, but somehow knowing my family will be sleeping all under ONE roof for the first time since September makes me melt- I am READY for this next chapter.  Sign me up for it all: the sleepy midnight feeds, the messy house, the big-sister adjustment (who knows how that's going to go;)), and the beautiful exhaustion of being a family altogether again... I can't wait.

Here goes nothing- lets get those ducks in a row and work towards the best gift ever.... giving baby girl her PERMANENT address of Bentonville, AR....

A Year for the Books...

2013

Another year past....

Packed with memories...

Packed with love...

Packed with moments that leave me forever changed.

I know we have all had years where we sit back and think on December 31st, "Wow, that was a do-sie!"  The past few for me have been so fun, yet far more simple as I look back now.  There have been bumps and those where I really looked to my family and prayer for support, but it felt like joining hands with the important ones in my life got me through... we always came out better.

This year was different.  I think it as of yet is the one where I had the happiest moments and the saddest- all within 12 months time.  Don't get me wrong: marrying my very best friend and the birth of my first daughter are 2 of the most amazing days of my life, but this year...for the first time in awhile... I let go... I was so vulnerable to anything and everything that happened and for that reason the moments of this past year were made up of incredibly pure emotion.  I experienced pure shock, joy, pain, sadness, love, honor, and above all a closeness to God and His beauty- all in a way I have never felt before.  

Pure shock: the fluttering of 3 beautiful heartbeats on a screen; while feeling my husband squeeze my hand so tightly... we were going to be a family of 6!

Pure joy: seeing Pete's face the moment he was told the energetic baby on the screen was his son- amazing.

Pure excitement: Harper's face as she waved around the ultrasound pictures of Jack, Nora, & Maggie... exclaiming to everyone she was a big sister.  And those quiet moments when I would feel those 3 moving with such energy inside of me- unreal.

Pure pain: The moment I realized my babies were coming 4 months too early... and no one knew if ANY of them would make it.  There wasn't anything I could do to help them anymore...

Pure sadness: holding my infant babies as they passed away.  I swear to you no mother should ever have to do that- single-handly the hardest 2 moments of my entire life.  

Pure love: in these surreal times of your life you realize the importance of those in your life.  From my truly incredible husband to our family, friends, and that crazy love of a 2-year-old.... wow- helps you slow down to take in all that love is.

Pure honor: hearing medical professionals say they cannot explain why Ms. Maggie is where she is today- I can honestly say I am honored to be her mother- she is my hero for sure.  She and her siblings are heroes in their own way, but Maggie... she has proved miracles do happen...

I have been all over the board as far as my faith goes, but I honestly think you cannot go through such a crazy journey without Faith.  It has seen me through trusting in the miracles of this past year, and remaining confident that there is a bigger plan for my little family and my children... one that I still don't quite understand

As I close the book of 2013 I can honestly say I AM better for having gone through it all: the good, the bad, and the ugly.  I am not running into 2014 pumped up and excited about new resolutions and goals.  I am actually taking this year to slow down and enjoy the beauty of family and the gifts we have been given in having each other.  This year I have learned from my children so much, but most importantly that life is an incredible gift- I hope to honor them in the way I live the rest of my life...

So, even though the past year has come to a close I hope to take all the parts of me, gained and lost, and be better.

Usually I sit in front of my computer, flipping through pictures to scrapbook from the past year, but this year I decided to make a little slide show and thought I would add it to the blog to share;)...

Happy 2014.

This free photo slideshow generated with Smilebox

A Holiday Whirlwind!

Wow- I cannot believe it has been 2 full weeks since I have sat and updated!  Our life in a few blurps: Christmas home in Indy with my family.  Come back to sick Maggie.  Christmas in St. Louis with Pete's family.  Then sick Harper.  My family visits in St. Louis.  Stridor back for little sister.  Strep throat for big sister.  Trip home to Bentonville.  Nursery set up.  Back to St. Louis.  Snowstorm.  Little sister 4 months old!

Ha.... seriously we have been 'ping ponging' all over the place with sickness following us... it has been wonderful holiday weeks, but between the sickness and the weather- we are staying on our toes!

So.... here is the LONGER version of the past couple weeks- of course, set to pictures;):

I had mentioned before, the ONLY gift I wanted for Christmas was to keep the tube OUT of Maggie's throat- no intibation for the littlest Lee!  She listened, kept that tube out, and began to rebound from the stridor (irritation in her throat) and reflux.  We cuddled our little miracle baby, hugged all her AMAZING caretakers (who are a true gift themselves;)) and set off to Indianapolis for a quick 18 hour trip home to give Harper a fun Christmas morning...

I hadn't slept at home with my siblings on Christmas Eve since before I was married- it was so fun to be there again.  Of course we HAD to wear matching pajamas- haha!

...and Little Miss Maggie also snuggled into her bed in her Christmas jammies.  Someone looks a little alert.  "Close those peepers, baby girl, so Santa can come" ;).

Harper didn't want to have much to do with jammies.  She was mesmerized by watching the Christmas train with Papa.  I am SO happy Pete got a Christmas train to place around our family Christmas tree... I have such fond memories as a child laying on the ground watching the train come around- I cannot WAIT to do the same with Harper!

 The siblings (+1 ;)) on Christmas morning!

Our little family (-1 ;() on Christmas Eve.... such a fun evening....

love that I don't have ONE picture of the 3 of us together- grrrr- we must have been to excited to pose together- ha!

Needless to say it was a wonderful celebration!  We had way to much fun and stayed up way too late but celebrating this holiday through Harper's eyes made it all worth it.  She enjoyed every part of this magical holiday.... cannot WAIT to do it all over again with BOTH girls next year;)!

So just after lunch on Christmas Day we went home to see Maggie...

.... and the stridor was back with a vengeance and her reflux present.  I was thrilled she stayed calm through an evening to let us celebrate Christmas and equally happy she waited to not feel well until we were home... but it doesn't make her sick times any easier.  We worried at first that she was sick with something, but it all just seemed related to the inflammation in her throat.  They did a scope and took some pictures of her throat which ruled out a paralyzed vocal cord (as far as they could see) and I was thrilled about that... just did NOT want her intibated.  Neither did she it seemed, as she got better with breathing treatments and steroids- whohoo!!

On Friday, Pete's parents came out to celebrate Christmas and Darla got to hold Maggie for the first time!!!  Of COURSE my phone wasn't working to take pictures :(, but it was SO wonderful for Maggie Cloe to be held by Darling Cloe- a special moment for me for sure!

Thank you so much for making the trip out here, Tom & Darla!

Although she was still having some issues with reflux she was feeling well enough to have some family visitors!  When I went in to see her with my family I almost jumped out of my boots- the ventilator was GONE.  It wasn't turned down or settings switched- it was just GONE!  Baby girl is still on oxygen, but she is doing ALL the work herself.  I was speechless!  She went from almost needing re intibating because of the stridor to NO VENTILATOR!  This was a huge turning point for Lil Miss- I was so proud of her and happy to share the fun day with my family there....

My moms sister, my Aunt Karen, met and held Maggie for the very first time!  I was so excited this spontaneous trip worked out and even more touched to see the way Maggie was so enthralled listening to Aunt Karen tell stories of she and my mom.  She even talked to Maggie about how special she was to our family... 

I have to say, Aunt Karen, I was holding back those tears with everything I had.... thank you for the beautiful things you said to Maggie.

Maggie's first cuddle time with Papa.

This was DEFINITELY a moment I had been waiting for since the moment I had her.  Something about your own father holding YOUR children is priceless.  Seeing such a little baby in a big man's arms... yep- it makes me melt.  Maggie was so alert and watched her Papa for awhile and then he put her right to sleep when he rubbed her forehead... she was oh-so-content in his arms.....

right up until she projectile puked all over- GOT to love the life of having a little one with reflux- ha!

Thank you, Dad, for taking the puking in stride and for sharing such beautiful moments with our little one- I was so happy you were there to share in the exciting 'no ventilator' news with me;)

Thank you to Mom, Dad, Aunt Karen, Aaron, and Anna for making the quick trip out!!  Loved seeing you guys- even if only for a few hours!

Following their visit Harper had a cough that just wouldn't quit and just wasn't acting herself.  I decided the next morning that it would probably be best for she and I to take a trip home to Bentonville.  She could re-coup there and I could busy myself in unpacking Christmas stuff as well as get Maggie's nursery together!

We made it home safe and sound, but after a sleep-less night with temperatures rising and coughing fits increasing, I decided to take her to the doctor... where we received a POSITIVE strep test- yuck!!!!!

This is not the news I wanted to hear when having a daughter in the NICU.  Pete decided he should probably head home too just to prevent spreading any germs to our FINALLY healthy infant so we actually were able to spend New Years Eve altogether- all sleeping soundly (some of us medically induced- ha) at 9pm.  Oh yes- we are party animals- ha!

After 3 days of not eating much, not sleeping much, whining lots, and earning the name 'Snots'.... Harper began to rebound so we made it back to St. Louis just in time for the 'Holy Freaking Snow, Batman'.  I mean, Mr. Weatherman... you're killing me here!  It's been almost a week since I've seen Maggie;).

Harper and I enjoyed yet another Mommy Daughter Day....

When it's 10 degrees, snow is much more fun to play with INDOORS!

Although Mommy DID need to dig her car out so we can HOPEFULLY go see Maggie tomorrow.  Oh yes, I had to do so with a plastic bowl- ha!  Got to love apartment living;)- I was so prepared.  Regardless, Harper had fun and we're hoping to try and make it out to the hospital tomorrow as it is a big day.....

 

Little Miss is deciding she would like to celebrate being 4 months old by taking her very first bottle!!!!

I got them to hold off giving her one today in hopes that I can make it out there to give her, her first one tomorrow.  We'll see... I have the 'come hell or high water' attitude right now, but safety is first- I know!  I cannot WAIT to get my hands on her and cuddle her enough to make up for a whole week without ;)!

With that being said, I wish ALL of you a safe, warm, and full-of-love week (as I know sometimes this trapped inside for days business makes us all a little crazy;))....

Happy New Year!