3 Steps Forward.... BIRTHDAY TIME.... then 2 steps back...

What a great week we had with Ms. Maggie!!

3 Steps Forward for sure:

1) Maintaining her heat and stability while I hold her!  I held her for 2 hours at one time- whohoo! She is just over 4 lbs now so I think that is helping keep her warm;).  She seemed to really enjoy it and was so content- love her!

2) Before this week she had a tube in her mouth, going down to her stomach, to suck out the un-used stomach acid.  They took that out and put a feeding tube in through her nose that can let any air out of her belly, but will also be used to start feeding her soon!  Sounds wonderful to us and she seems to like it MUCH better!

3) She was able to tolerate a visit from the proud Big Sister;).  Harper came in for a visit last Friday dressed as part of the medical team in her white jacket and stethoscope;).  Harper was so excited to sit next to Maggie and talk to her, but then our hearts melted as Maggie's doctor came in and showed Harper how to use her stethoscope to listen to Maggie's heart- so cute!  

...and then her doctor helped Harper hold Maggie's hand- amazing!  It was the first time the girls had interacted like this.  It was precious to see and you could just tell that Harper was in Heaven.  Maggie seemed to enjoy it just as much- she was totally content while her Big Sister talked and "played" with her- makes my heart happy.

A huge thank you to the doctors, nurses, and other staff that helped give our girls some 'Sister Time'... it made our day and was such a special time for us as a family of 4 to be in the same room together- LOVE!

Maggie had such a good morning that we decided to take a few family pictures, including the one above, for our Christmas card- so fun!  Yep- she's our perfect little Christmas gift;)- so excited to see how much she will have grown between now and the holiday!

of course I couldn't get a pic of everyone looking- lol... but at least the birthday girl is ;)

Since Maggie was doing so well, we decided to head to Indy as a family (first time we've done that since the triplets were born;)), to help my sister, Abby, celebrate her birthday!  We enjoyed being there to help Abby celebrate by enjoying yummy food, games, and of course her company;).... what a much needed family trip!  

And of COURSE, Harper enjoyed all that Nana's house has to offer: fun toys to play with, so much attention, and of course... a doughnut here and there- hehe!

HAPPY BIRTHDAY, ABBY!!!

So happy we got to be there to celebrate your last birthday as an O'Connell... so excited for this next step in your life- 2014 is going to be amazing!  Luv ya, sister!!

 Upon returning to St. Louis, we then took 2 steps back with Ms. Maggie....

We called over the weekend and although all seemed well with her, she just seemed more sleepy then usual and was dropping her heart rate more frequently.

When I came into visit her yesterday, she seemed to really be struggling and was just forgetting to breathe, which in turn would make her heart rate plummet.  After a couple scary spells of that, it was decided to do some tests and figure out what was going on.  She was basically telling us, "I don't feel well!"  

They were able to stabilize her last night: gave her blood and started antibiotics.  

This morning it was confirmed that all cultures and tests done came back negative: they cannot find an infection or virus that caused Lil' Miss to go downhill, but all that they did to help her last night has brought her back up for sure... thank goodness.  She opened her eyes for us today and squeezed our fingers so we know she's starting to feel better....

In the meantime we are hoping for these cute smiles again soon!  They are putting the rest of her bowel studies and feedings on hold for right now to get her back to feeling like herself.  We hope she'll be feeling like having a Thanksgiving meal here soon for sure!

Thank you all for your thought and prayer through this past weekend.  We appreciate you helping support us when our little one has her scary moments- means so much!

We hope you all enjoy the preparation for Thanksgiving.  I know we are spending the time reflecting on all we have to be thankful for this year;)

Making Memories...

It has been a relatively quiet week with the Lee family here in St. Louis;).  I hesitate to use that term as we never know when things may change, but it has been a nice family-filled week making a few memories which is always wonderful!

Maggie had a lower GI study, to take a look at her large intestine, early last week.  She did so well with it, and the results of the scan were wonderful!  We were so optimistic as we thought that feeding her- very slowly;)- was coming next.  It was then decided by her surgical team to hold off on feeds, let her move all the contrast through her intestines (aka: poop all the neon out;)), and then do an UPPER GI study (where they put the dye into her belly and watch it move through her small intestine).  Well, Lil' Miss may be rockin' it these days, but her bowels are very immature and slow moving.  They had hoped to do the next study today, but Ms Maggie still has some neon up in there;).  So she and I had a little talk today in which the bottom line was two words: POOP PLEASE!  Her doctors are also tweaking some of her oxygen support settings and some of the medicines she is getting.  She is being pushed a little and doesn't always react the best... today she seemed a little off, but I think she may just be a little tired from being pushed so much lately.  She's not all for this growing up thing like we are;).

So, as I wait patiently (not a virtue I do well with most of the time- hehe;)) for her to poop out the rest of the dye and seem a little more tolerant of her changes, we enjoyed some moments with her as well as spent time with family and friends this past weekend....

Daddy got to hold her like a regular baby, all swaddled up, on his chest.  He LOVED it as he could just sit and talk with her and rub her face like he does Harper.  Lets just say, Maggie is quite a fan of Daddy snuggles just like her big sister;).

Speaking of big sister, she is just seeming TOO BIG these days!  She is in preschool now and has magnificent teachers... she is talking so clearly and up a storm; she seems to have something to say about anything and everything and oh BOY does she have an opinion that wants to be heard- I think more than one Lee girl may have a roar! ;)

I mentioned earlier that Build-a-Bear is the store of choice for preemie cuteness!  The NICU pulls items and outfits for holidays from there and as crazy as it sounds those 'bear outfits' are perfect for the preemies!  So, we most certainly had to make a trip out there to make a bear for Maggie so one day we could show her just how SMALL she was;).  Of course, while we were there Harper found a bear, or 2, or 5 that she would like to add to her ever-growing stuffed animal collection.  She settled with the princess bear (of course;)) complete with a magic wand- oh yes!  Harper and her bear, names Princess no less, are inseparable- LOVE!  We had Maggie's bear embroidered to remember this special time in her life- I look forward to sharing pictures when we get it back;)!

I try so hard to get the smiles on film... this is as close as I got today- the end of one but still so sweet!

Thank you, Kessha, for the adorable outfit- it fits her perfectly!

Daddy enjoyed a wonderful visit with his best-friends, Brett & Lowell!  What a LONG time coming... it had been since Harper was about 4 months old since they all 3 had been together!  So great to introduce them to the lil' munchkin and then enjoy the city for a day.

Thank you to Brett, Lowell, and their families for making the quick one-day trip happen... it meant the world to us to see you!

I will switch gears for just a second to share this beautiful story and image... 

Karla is the name of the AMAZING woman who works at the funeral home with which we entrusted the care of our little ones.  She has treated us like family, carrying each of my little ones out of that NICU on the worst of days for Pete and I.  I never knew what to say to the one I would hand off my deceased child too, so I simply said, "Please take good care of them".  She left with tears in her eyes and cuddled my children as if they were her own- meant so much seeing the love and care she showed us in those gut-wrenching moments.  

When I saw her the day of the funeral it meant the world that she brought the babies there in a Hurst; she treated them no differently from any other deceased person in her care.  She came right up to me with again tears in her eyes, and said, "The kids were good; I talked to them every day. Thank you for letting me babysit".  It may not seem like much, but those words meant so much.

When I hugged Karla goodbye that day, I thought that would be it.  Then, I received an email this week where she wrote, "I went by to check on the kids today and this is what I saw.  It looks so beautiful".  First of all, her checking on them as she knew we just weren't able is so amazing.  Secondly, the monument DOES look so perfect.  I cannot wait to head there soon, add flowers to the vases, and sit with my babies again.

I know I will carry Jack & Nora with me everyday, but knowing that they are continually watched by Karla while we are away is something that provides such comfort- she has touched our family in so many ways.  She has helped us to create a beautiful memorial in their honor as well as place for us to visit them- we are forever grateful.

Well, this has been a quiet by nice week... all in all, another week in the books spent with Maggie as well as family and friends- a win for sure!

I end this update by saying- stay warm!!!  Harper is armed and ready for the dropping temperatures.  I wish you all a warm week;).

Hear Her Roar!!!

Two weekends ago, Ms. Maggie had a rough night.  She was struggling through things and it was determined she had an infection.  Because her little body just couldn't go through the stress of infection as well as breathing on her own, she was re-intibated and they stopped her feedings to let her body rest.  

We were worried, but through the course of the next few days she welcomed November back off the ventilator- we were so happy!  Due to the rough turn, her surgery team decided to continue to hold off feedings until a dye study could be done to determine what exactly was going on in her bowel.  This would be the first step in the road of bowel surgery to fix where it looked that her bowel was narrowed from the previously placed drain.

In the meantime we were grateful for a quiet rest of the week as she got used to breathing on her own again and recovered from being sick....

A visit from sister is always fun... Harper loved it- it's so cute to hear their little chats- adorable sisters!

This week I walked in to find this adorable sign on her door- love her nurses!!!

Baby girl turned 2 months old on Monday and she celebrated with an eye exam- lovely;).  The exam is a little stressful on the little ones, but so important because with prematurity comes eye and sight problems, mainly because of the high levels of oxygen support they receive just after birth as well as prolonged support.

Well, since her actual 2 Month Birthday was a little uncomfortable on her eyes, she decided to celebrate a couple days later;):

Today, we got the thumbs up to take her downstairs to have the dye study done to check out her bowel.  I was so anxious as I knew this would begin her new journey with her tummy.

Well, shortly after pictures were seen, we saw this message on the computer screen from radiology:

no evidence of stricture or narrowing- AMAZING!  

The first miracle was her x rays showing this a few weeks ago, but this was confirmed by the dye study.  What this means is that there is NO abdominal surgery needed for Ms. Maggie.  Unbelievable when you think just a month ago she had 2 drains coming from her abdomen and surgery to repair was pretty certain.  Her need for surgery was her reason for coming to Children's Hospital in the first place.  For this not even to be a CONCERN let alone a surgery anymore is just unreal!  

Right after that, we learned that her eye exam came back clear which was wonderful.  

We considered today a double bonus for sure.  We are so grateful for all that has been done to help our little girl: the medical AND spiritual support she has received as we KNOW they both are working together to help our little one.

So... next step is to resume feeding her!  We will learn more about when that will happen tomorrow, but her nurses seem to think sooner than later.. so- GULP- here we go!

She is Maggie- HEAR HER ROAR!

The Girls on Halloween

This year Pete and I decided to split our time to allow both girls to enjoy Halloween: Pete stayed in St. Louis with Lil' Miss and I went to Indy with Harper to enjoy her first Trick-or-Treat experience...

Maggie did her second photo op in her costume for March of Dimes to take her picture- so cute!  Our lil' pumpkin for sure!

Of course we did a Halloween lunch out with Cinderella and they even passed out candy- she was in Heaven;)

And then she got to help set up for Trick-or-Treat, Nana style.... ha!  Nana rolls with a treat TABLE rather than bowl... love it;)

Nana & Cinderella

Thank you SO much, mom, for making this adorable costume... Harper had been Cinderella for 2 straight weeks practicing for her Halloween debut;)

And of course.... due to weather, Trick-or-Treat was postponed until Friday.  So Cinderella enjoyed Trick-or-Treating indoors.  She was completely content being the center of attention as she danced and twirled around and played with all the candy- good times;).

We hope you all had a safe and fun Halloween.  We were very relieved to enjoy the holiday full of treats and no tricks;)- thank you Ms. Maggie!

The Flight Home for My Angels...

November 2, 2013

A beautiful Fall day with amazing color.

A day spent back home in Bentonville, Arkansas.

A day spent with all my family together.

 The day my angel babies flew home to Heaven.  

What a bittersweet day it was... never could we have imagined this for our family.  Just a few short months ago Pete and I had laid quietly together, his hand on my belly, as we anxiously talked about the moment we would meet our miracle trio; thinking of their birth and the exciting moments of bringing them home.  Never in our wildest dreams did we envision what September would bring.  Never did we envision spending a brisk Fall day laying our little ones to rest.  Never.

Yet, here we were... hand in hand walking through one of the toughest days of our lives as parents.  I had such sadness within me as I prepared programs, picked gravestones, and made necessary arrangements for this day.  Ugh.  This was just not what I wanted to do, but last Saturday when I woke up I somehow felt peace.  My children were in a better place and as I had chose the words, "A Celebration of Life" for the program, I began to truly feel this day WOULD be a celebration of the beautiful life I had and will forever have with my angel babies.  I looked around at our parents and siblings who all came to be here to celebrate the life of our children- it was amazing.  

Yes, it was hard to see the all-to-small caskets before me when we arrived at the cemetery.  Yes, it was hard to see the hole in the ground ready to house their little bodies.  And yes, for sure it was hard to read letters to each of them, but Jack & Nora... I KNOW this is not the end.  

Angel Babies... you have touched so many lives already and I know that is not coming to an end anytime soon.  You will always be a part of me, your Daddy, and so many more.  I know it will be wonderful to visit you there in Rogers, Arkansas, but I KNOW I will carry you each with me every day.  My heart is fuller and I am better for knowing you and having the true blessing of being your mother.  You two are incredible people and have carried your family in more ways than one.  Your sister, Maggie, has the fight of a tiger in her, but I know she has you both cheering her on from above.  I may have wished you farewell on Saturday, but it is never a real goodbye- you'll be with me always, angel babies....

Here is that day... set to beautiful pictures taken by my sister. 

Thank you so much, Anna.

notice the heart made of the floral arrangements on their caskets... so beautiful

"I love you, Nora and Jack", said Harper without any prompting.

I love how beautiful and pure Harper's relationship is with her brother and sister.  I don't know if I will ever fully understand this bond she has with them, but for now I just listen and watch in awe at how amazing she is in talking to and about each of them- love.

The only true "family picture" we have.  The orange roses represent Ms. Maggie.

I love you babies.... the love for you both seen in the flowers of the family present that day- a treasure.

Thank you to the family there that day to support us.  I realized that night, we came from 9 cities to be together that day.  We cannot thank you enough for being there by our side on such a tough day.  Thank you for the hugs, tears, and laughter you shared with us that day- it means so much.

Love you guys.

And to all of you following our story... even though you weren't physically there with us this past weekend, we cannot thank you enough for the thought, prayer, and kindness you have shown us.  You all are incredible.  To our friends in Bentonville: cleaning and getting our home together for family, cleaning up our yard in a fashion better than we could ever do ;)- thank you.  You ALL have provided us with such support it actually brought tears to our eyes.

We love you all and THANK YOU from the bottom of our hearts.