Long Overdue (mini) Update + Upcoming Fundraiser Details

Hello Team Neely! It’s 7am on a Sunday morning and I am going to attempt a proper update before the rest of the household wakes up and the chaos begins.

First, I wanted to thank some wonderful friends - Derek Ortiz and Vince Saucedo - for putting together an amazing fundraiser for Neely! There will be live bands and a silent auction (with some super cool items)! I can’t imagine how much effort it takes to organize something like this and we feel so blessed that they would do this for our little girl out of the kindness of their hearts. See details below – it’s going to be a blast!!!

I was just reflecting on this yesterday – about how there really is this team of incredible people that surrounds us and keeps us going. More on that later.

Obligatory apology here for not updating this website in any kind of a timely manner. I have noticed that this is pretty common for folks going through an extreme medical situation. We all start off posting a lot and then as time goes on, the posts become fewer and further in between. I know I’ve spent some late nights reading about kiddos in similar situations to Neely and then the posts just kind of stop and there are no more details.

It’s like, in the beginning, you are staring at this empty garden. Someone or something has just come through and completely annihilated everything – it’s devastating. You can sit there often and reflect on the emptiness and hope that something will come along and help you rebuild. Then after a while, you start planting again – a tiny little seed of normalcy. And just when you think something has taken root, another disaster comes. This happens so much in the beginning. Life is in turmoil. Nothing sticks, nothing grows.

Time goes on and you figure some things out. You figure out how to better tend to the seed, the soil. How to keep most of the bad stuff away. Little tendrils of hope begin to sprout and the next thing you know you’ve got a big ol’ garden to tend to. Maybe it doesn’t look like your neighbor’s garden, but it’s full of life and full of beautiful things.

This is our journey. In the beginning, we sat back and watched as our girl went through one disaster after another. We’ve watched her almost die more times than any parent ever should. We spent months in the hospital with our girl going through surgery after surgery and crisis after crisis. Looking back, it was those months that gave us the right tools for our “garden”. For example, back then the idea of doing a sterile dressing change on Neely’s central line seemed terrifying. This is a catheter that goes directly into her heart - not something to mess around with! Well, months of being in the hospital meant that we were in the room when those wonderful nurses would do dressing changes. Once we got home, we decided to do it ourselves. Home health used to do dressing changes, mix IV meds, and draw labs. We do all of that now.

It’s truly the first thing I would tell anyone at the beginning of this journey – learn how to do “the things”. It is scary. It is not easy. It is intimidating. You may stumble through it. Do it anyway.

Things take root and life takes over, as it does. There’s less time to sit back and reflect. We worry less about line infections and more about laundry. It’s a blessing.

It’s also my long, possibly convoluted, metaphoric excuse for why I don’t update more. I’ve got a beautiful garden to tend to and less time to reflect on what it took to get it that way.

Which brings me back to Team Neely. Whenever I take the time to think about how all the little pieces fit together, I am amazed. I have worked at Texas Oncology for almost 10 years and have met the most gifted and kindhearted people. That’s a joy in and of itself, but then I think about how fortunate it is that I have people to call on with lab questions, nursing questions, pharmacy questions, insurance questions, etc. They are dear friends and they truly care about Neely. We would not be here without them.

And then there are the people who can’t do those things, but send us that random “how are you doing?/thinking about you” text (you’d be surprised how much those little pep talks keep us going). The ones who send Josh home with tons of food so that we don’t have to worry about dinner. The ones who randomly decide to undergo the HUGE task of putting together a fundraiser!

There’s also the friends we’ve acquired along the way, that are on their own journey. Mamas you’ve never met, who live 1400 miles away, who will call you at midnight and talk you through the things they’ve learned during their own journey. Mamas you meet in the elevator and know right away because you’ve seen their kiddo’s Facebook page. You bond instantly.

Then there are the people in the offices – the doctor’s office, the home health pharmacy, etc – that know us. They escalate our call. They give us their personal cell numbers or emails so that we don’t have to go through too much bureaucracy to get to the right person. They actually take the time to answer our wacky questions and sometimes even appoint a team of people to work on an issue.

And also, how blessed are we to work for people who are so genuinely interested in Neely’s well-being? The people we work for have been so understanding of how crazy things can get with Neely.

I could seriously go on and on and I wish I could write a lovesong to all the people who make this life possible. Our cup truly runneth over and please know that we are so thankful for all the love, support, prayers, well-wishes, and patience.

But maaaybe you didn’t come to read about mushiness and poor metaphors, haha. So how about an update on the little diva that this website is about?

Neely is 3 ½ and is just as wonderfully whiney and annoying as any 3 ½ year old you know – which is AMAZING. She’s very little for her age – like barely in the 1st percentile on the growth chart. Her 22-month old baby sister is almost the same height and actually weighs a little more. People often ask us if they are twins.

She’s a silly little bundle of energy and can mostly keep up with her sisters. She’s back on 16 hours of TPN, with an additional hour of saline before and after, so a lot less time off “leash”, so to speak. She walks around with her little backpack full of IV fluids and doesn’t really think much of it. It’s all normal for her.

The medical stuff: She’s had a lot of bleeding issues and managing that has been tough. This is most obvious when she is bleeding into her ostomy bag. We think she may have some sort of weird seasonal allergy because when the blood is coming from her intestinal tract, it’s usually sometime between June and November. That happened in 2014 and 2015. This year, once we got past that, she started bleeding from the stoma itself – the opening into her ostomy bag. It was very prone to injury and she would just bleed so much. Her labs were terrible and she required quite a few blood transfusions. She recently had surgery to “re-envision” her stoma. She’s also getting Procrit injections twice a week because her EPO level was so low. Things seem much better now and we’re hopeful that we can keep her hemoglobin up.

Her liver numbers have been steadily increasing. Her bili is in the 6’s now. You can definitely see the jaundice - yellow in her eyes and a little in the skin. This happens because the lipid component of her IV nutrition is harmful to the liver. I think a serious discussion about an Omegaven clinical trial will probably happen with her GI doc soon.

Her kidney numbers are also yucky. She only has 1 kidney and it doesn’t appear to be fully functional We’re not really sure about anything when it comes to the kidney and we’re just hopeful it won’t get any worse.

That’s the super short version, of course. Things could be better, but they could also be a lot worse!

While all this is going on internally, Neely still acts like any other little kid would. If you or I had a hemoglobin of 5.7, we’d likely be in the hospital feeling horrible. My girl? She’s running and giggling through the waiting room while they get her blood transfusion ready. If you or I had a recent surgery to cut down a part of our intestine, we’d probably be asking for more pain meds and spend a couple of days in the hospital. My girl? Within a few hours of the anesthesia wearing off, she asked to sit up so she could play with stickers. She had morphine available every 2 hours and she only needed it once. She was discharged from the hospital the next day. She’s amazing.

Yesterday, she asked me to play some ballerina music, so she could dance. With her curly black hair in a messy bun, her white onesie, and white tights, she looked every bit like a little ballerina. She grabbed the side of the coffee table and kicked her little leg back and said, “look at me mommy!” I suddenly got emotional watching her kicking her little legs and spinning around the room. Look how far we’ve come.

Okay, I have so much more to say, but babies are waking up and I’ve got a house to clean. Thanks for your patience with me and I hope to see you at Neely’s upcoming fundraiser! Love you all!

At Children's Hospital of Pittsburgh

Checking stuff out at Third Man Records

Neely's first trip to the beach!

An unexpected reunion with her NICU "boyfriend" Bryce

Happy 2nd Birthday!!!

Gosh, what’s it been?  A year?  I guess it’s about time for an update then!  I’m going to drink some caffeine, forgo the whole “sleep” thing, and attempt to actually write something.

So much has happened this past year.  To sum it up, we’ve lived our lives almost like a “normal” family.   I would say the highlights were sharing Neely’s 1^st birthday with many of our dearest friends and family, having Neely’s g-tube removed, Neely walking and talking, Neely re-learning how to eat, adding another sweet little baby girl to our family, and (drumroll, please) ……Neely not being admitted to the hospital the entire year!!!

In fact, as of this moment, Neely has been out of the hospital for 1 year, 1 month, and 15 days!  That is, as my Laney would say, “cwazy business”.  I think the only time Neely set foot in a hospital this year was the day her baby sister was born.

That’s pretty surreal considering the “hospital crawl” we did during her first year of life.  In my multitude of to-do lists on my trusty iPhone, I had one list titled “Goals”.  One for Neely and one for me.  Hers was “stay out of the hospital for 6 days”.  That’s how it began.  Then, “1 week”, “10 days”, “2 weeks”.  “1 month” felt too hopeful, but she met that goal.  Somehow we got to 6 months and I got nervous leading up to the 6 month follow-up appointment with her surgeon.  When he first scheduled that 6 month follow-up, we both joked that we’d probably meet again sooner (in the hospital).  I was super excited to walk in with Miss Neely for that appointment! 

By the grace of God, we made it to April 29^th and celebrated an entire year free of hospital visits.  That is AMAZING considering the kid has a central line in her chest. 

Here are some fun* facts

# of sterile dressing changes Josh and I did:  >52

# of petty arguments during dressing changes: >10

# of times I mixed Neely’s TPN (IV nutrition): >360

Unusual places I mixed TPN: in a Labor & Delivery room, in the baggage claim area of the Pittsburgh airport, in a Pittsburgh hotel room

# of times we disconnected/reconnected Neely from/to her meds: >365

Unusual places to disconnect/reconnect Neely: at the gate - while waiting for a plane, at cruising altitude somewhere between Pittsburgh and Austin, in the rug section at IKEA

# of times Neely has complained about any of this stuff: <20

(*okay, those facts might only be fun for me and my hubby)

Yes, my girl definitely exceeded her original goal.  As for me?  My only goal was to finish ironing a stack of laundry and … well … yah.  Not so much.

Being hospital free has allowed us a comfortable layer of normalcy.  We can take little risks like buying a week’s worth of groceries.  Or HUGE risks like deciding to have another baby.  Everything takes a lot more time and a lot more planning, but you could probably say that about any family of 5. 

In a lot of ways, the things we experienced with Neely’s 1^st year have made us into much more confident parents.  There are many moments where something happens with Neely’s central line, ostomy bag, or something else and we have to quickly come up with a solution.  Those are the “thread the needle” moments where we have to separate our emotions from the task ahead.  Stuff like that is not easy, but it’s an important part of our goal to stay out of the hospital.

For example, one night at around 4am, we heard Neely crying.  She never cries at night unless something is wrong.  Sure enough, she had vomited all over herself and her crib.  Usually, vomiting is one of the first signs that she has a line infection.  Josh and I internally freaked out, but on the outside we were methodical.  We comforted her, unwrapped her swaddle, cleaned her up, took her temp, checked her diaper, and listened to her heart and lungs.  I noticed her breathing was irregular and seemed labored.  I felt that pit in my stomach, imagining a hospital visit was imminent.  I decided to listen again and after a while, realized she was holding her breath so she could suck on her binky.  She had a stuffed nose!  (By the way, she has the tiniest nose ever.) 

A normal, boring ol’ stuffed nose.  Thank God.

I guess what’s not normal is that there are certain things we can’t take lightly.  Vomiting, fever, fussiness … it could be nothing or it could be life and death (sepsis via a line infection).  We always have to assume and plan for the worst.  A line infection would be caused by bacteria entering her bloodstream.  This puts us squarely in the middle of the “cleans everything with Clorox wipes” category of parenting.  I am that person you might scoff at for wiping down the shopping cart, restaurant table, or the toy she dropped on the floor at the doctor’s office.  A binky dropped on any public surface requires at least a Level 1 decontamination process of some sort.  She could probably fight off a virus, but it might land us a few days in the hospital to be sure it is just that.  A bacterial infection?  There were at least 2 occasions where we almost lost her.  So buy some stock in the Clorox wipes.

As usual, Neely takes all this medical stuff in stride.  As long as she has her binky, Huggy (stuffed bunny), and Jonah and the Whale video, she can pretty much tolerate anything.  It’s been so amazing watching her grow into this little person.  She has such an easy laugh.  She’ll laugh at herself, laugh at her sister, or laugh just because you are laughing.  She loves to be tickled.  She loves playing with her big sister.  She loves playing dress-up with necklaces and bracelets.  She is a total cuddle bug. 

Don’t get me wrong – like any two year old, she can throw a mean tantrum.  She can scream in pitches that I’ve never heard and her “woe is me!” full-body collapse deserves an Academy Award.  When those moments test my patience, I try to remember to appreciate that she has lived long enough to throw tantrums.

She has accomplished so much this year.  At last year’s birthday party, she was barely figuring out how to crawl.  Now she is walking/running everywhere.  She talks almost non-stop.  Mostly single words for now, but she definitely gets her point across.  Amazingly, she learned how to eat again.  She LOVES to eat.  She’ll try almost any food and one of her favorite words is “more”.  There’s a little drama that happens nearly every night in the Lucquete household.  Dinner is presented to the girls.  Laney (the oldest) cries because she only wants to eat junk food.  Every bite is a struggle with her.  Tears are shed, threats are made.  In the background is Neely asking for more, more, more of everything.  The little girl with only 15cm of intestine.  She amazes me, that kid.   

In other fun news, she recently took her first real bath.  I know that sounds insane at almost 2 years old, but the central line dressing can’t get wet.  After we hit the 1 year hospital-free milestone, I decided that our next goal was to figure out how to get her in a real bathtub or pool.  It took a few long nights of internet research, but I found a couple of products that would work with her ostomy and central line dressing.  The whole bath process took around 3 hours, but it was so worth it to see her splashing around in the tub with her sister.  She had the BEST time.

This led me to the next goal, which was to get her out of long sleeves and pants.  She has always had bad eczema, which is why in most pictures you will see her with arm restraints, long sleeves, and long pants or pantyhose.  That’s miserable in a Texas summer.  I had read that a capful of bleach in the bathwater seems to help kiddos with bad eczema, so I added some to her bath.  Then, I worked with her to take the focus off of her bare legs and arms.  I painted her toes and distracted her with toys.  I’m happy to report that she can now wear cute little summer dresses, sleeveless and with bare legs.  She still goes through her scratchy phases, but not nearly as often.  Actually, the problem now is that we have to watch her super carefully in case she absent-mindedly scratches her central line dressing, but I’m hopeful that we can overcome that eventually.

Medically, she is hanging in there.  She is short and skinny for her age.  She needs iron infusion about every 6 months for her anemia.  She still has eczema, though it seems to be getting better.  She is on her TPN for 16 hours a day (mostly overnight).  Her liver and solitary kidney are okay, but sometimes those labs are troubling.  As I’ve mentioned before, while the TPN saves her life everyday (shout-out to Coram, our home health pharmacy), the lipid component could eventually destroy her liver.

So the race we are running is still the same.  Get the intestinal transplant before her liver gives out. 

People often ask me about the transplant status.  She is still listed as a Status 1 (high priority) for an intestinal transplant.  That means we could get the call at any time.  It could be right now or it could be years from now.  A child somewhere in a specific transplant region has to pass away.  He/She has to be of a specific size and have the same blood type (among other tissue markers, I’m assuming) as Neely.  In that insanely horrific moment, at the lowest point I can imagine as a parent, his/her parents have to decide they will donate their baby’s organs.  If they agree, the harvested organ may or may not be viable for transplant.  If the organ is viable, we may or may not be able to get to Pittsburgh in 6-8 hours (although thanks to an amazing friend, transport should be the least of our worries). 

There’s a lot to unpack in the paragraph above.  A lot of whys and what-ifs.  It’s hard, heavy stuff that keeps me up nights.  Mostly the idea of handing my happy, healthy little girl to a surgeon who will operate on her for almost a full day.  And that if/when she comes out of surgery, she will be in pain, on all kinds of meds, with new contraptions on her body, and all sorts of risks that come with transplant and organ rejection.  She’ll be 1400 miles away from her home, her bed, her sisters, her Gwamma, her uncle.  She’s not old enough yet to understand why we want this for her. 

These are the things I struggle with at night when things get too quiet. 

But that’s heavy stuff and probably not what I should write about right now.

No matter the circumstances, we truly believe we are blessed.  We’re thankful everyday for our incredible support system of friends and family.  Personally, I can’t believe I got to meet and marry this superhero husband of mine, who makes me laugh every single day.  I can’t believe how lucky I am to have this wonderful little family.  My crazy Laney, with her beautiful and nurturing heart.  My resilient Neely, with her wise and soulful eyes.  My lovely baby Eilley, with her easygoing nature and sweet cheerfulness.  That’s my team, ya dig?

So we live our lives.  We go through our routines and make all of these abnormal circumstances part of our story.  Part of who we are.  We appreciate the millions of happy moments we have as a family.  We celebrate the milestones and try to block out the giant question mark that comes with them. 

If you are reading this, you are part of our story too.  Thanks for being a part of Team Neely.

Happy 2^nd Birthday to my phenomenonal little rockstar, Neely Jacqueline Claire Lucquete.

Happy Birthday, Neely!!!

Where was I this time last year?  Probably awake, tossing and turning.  Nervous about the C-section scheduled for the following day.  I knew that having Neely would change our lives, but I could never have imagined just how different life would be.

For the past 365 days, I've thought about that massive shift in our world.  The before and the after.  Who we all used to be and who we've become.  Sometimes it was too painful to reflect on.  For a while, I couldn't comfortably look at pictures of all the "before".  It was like watching a sad movie where you already know the ending, and it grieves you to see how happy everyone was before.  How carefree and innocent.  Scenes from the moments before "normal" disappeared forever.

Laney, enjoying her last day as an only child

Neely Jacqueline Claire Lucquete, looking perfectly normal after delivery

As we get closer and closer to Neely's 1st birthday (52 minutes from now), I am letting some of those repressed feelings surface and the tears that flow are happy ones.  The background music to the scene in this part of the movie seems more Rocky-like.

Recently, I've been re-reading some of my old posts on this website and looking at old pictures and videos on my phone and it has been quite a shock.  I can't believe some of those things really happened.  That cute little raven-haired beauty connected to all those monitors, all that tubing, and barely recovering from all that surgery - that was my baby, my Neely.  (I still can't read this post without crying,)

Recovering from 1st surgery

Seeing videos of our time in the NICU takes me right back there ... like PTSD time travel, I guess.  I can close my eyes and get there instantly ... I can smell the soap we scrubbed our hands with, hear the monitors beeping, picture the parking garage, elevators, and hallways with the miles and miles of distance that seemed to always stand between me and that little girl.

And all that was just the beginning of this little journey.  Between then and now, we've had countless surgeries and re-admissions, including a couple of times where we've come very close to losing her.  We've googled a million things we shouldn't and half a million things we should.  We've learned to do dressing changes, mix TPN, and administer antibiotics.  We've discovered a thousand things you can fix with gauze and paper tape.  We learned how to get decent parking at Dell (but darnit, they went and changed it).  

Yes, we've had to take a crash course in all sorts of medical things, but that is not all this year has taught us.  As hard and time consuming as the medical stuff is, it is mostly background noise to the other new world that Neely has shown us.  

(Okay, it is 11:59 and I am going to go upstairs and whisper a Happy Birthday to the most awesome baby ever.  Be right back....oh my gosh, she is so stinkin cute.)

This year has been crazy, but it has shown us the infinite number of ways that people can be awesome.  We've had love and support pour out for us in so many ways, it's just humbling.  Fundraisers at Philips and Texas Oncology, Team Neely t-shirts courtesy of Aunt Keri, dinners brought to us in the hospital, sMiles 4 Sammy bringing us care packages and gifts at Christmas, pastors from CLC praying for her before her surgeries, a custom cape from TinySuperheroes.com, letters of encouragement, donations, Uncles/Aunts/Cousins giving us love and comfort, thoughtful text messages at just the right moment, the social workers at Dell working their magic, visits from friends, a special family who has worked out a way for us to have on-call pilots to Pitt through Angel Flight, superhero nurses and doctors and pharmacists giving Neely the best care ever, Aunt Caty being Aunt Caty, our home health pharmacy (Coram) ... aaah, there is so much more!  I would love to give a shout-out to everyone out there who has done so much for us, but I think you get the idea.  It's a LOT of good stuff.

We have so many amazing friends, such amazing families  - and we really could not have gotten through this year without you.  

Switching gears, for those who want an update on the little Superhero.  Neely is a little over 16lbs and a little over 27 inches now (so about the size of a 6 month old, maybe?).  After my last update, she managed to stay home for nearly 4 months before being taken down by another line infection.  She then had 2 subsequent admissions to Dell (a break in her central line and another line infection).  This was all in a 3 week span, which was crazy after almost 4 months of being home.  She had a recent surgery to remove her g-tube as we were not using it for feeding and it leaked a lot.  She seems to have recovered from that surgery and we are trying to feed in small increments now.  

People often comment about her hair because it looks like we gave her highlights.  She was born with jet black hair, but after her bowel resection it started to turn grey.  Then all of the black fell out (or she tore it out) and she was left with the grey.  Thankfully, her hair darkened again and now the grey looks like blonde tips.

The girls with Aunt Judy - you can see Neely's "highlights" in this one

Unless she is tired or in pain, she is seemingly always happy.  Her eyes are so soulful and sweet.  They are so expressive and inquisitive.  She has 2 little bottom teeth so far.  I don't notice that she is skinny or small until I see other babies her age.  She seems long and lean, just like her daddy.

She has eczema and is constantly itchy, so we often have to put her arms in restraints.  This, plus the leaky g-tube plus the 6 months in a hospital bed have caused a few delays with her motor skills, but I am happy to report that Miss Neely started crawling as of 2 days ago.  

She loves her binky and her stuffed bunny from "Otha Gwamma" and she thinks her Big Sisto is hilarious.  She talks/babbles a lot and probably understands more than we realize.   I tiptoe into her room late at night and just stare at her.  I know she wasn't born with all her parts in working order, but when I look at her sweet little face, I just see absolute perfection.  

When Laney turned 1, we didn't make a big deal out of it.  She'll never remember it, so why go to a lot of trouble celebrating?  With Neely, it feels very different.  Early on in her little life, we listened to some doctor say that we had the option to not treat her, take her home, and "make her comfortable".  Back then, we dared not imagine making it to a year.  But here we are ... 1 year down and hopefully at least 99 even better ones to go.  So we are going to celebrate because it is a BIG friggin deal!

Thank you all so much ... I hope you will join with us in celebrating Neely's birthday today because you all have had a hand in helping us climb this mountain and reach this peak.

Love and Blessings!

-Kat

A note left by Aunt Judy in our room at St David's

A Message from Uncle Jack:

A year ago today, Neely Jacqueline Claire Lucquete was born without functioning intestines.  One year.  It's so hard to believe that it's been a year.  Especially since she doesn't look a day over 8 months.  And yet, it has been the longest, most emotionally draining, and yet uplifting year I think we've ever had.

It's been difficult.  It's been an unending test of endurance, patience, faith, conviction, and sanity.  If Kat and Josh make it look easy, it's because they're really good at it.  Every day, I'm amazed with the people in this house.  I may not be a Lucquete, but I'm proud to fight this fight with them.  I'm so very proud of Kat and Josh for being the parents that they are and try to be.  It's inspiring how much love and attention they provide to two needy kids who require different kinds of attention and care.  Now, I may help put out some fires (not literal fires) every now and then, but I have no doubt that they could do this without me here...albeit with more yelling.  It's not the ideal situation, but they make the best of it.  The hands that guide Neely and Laney might not always be steady, but they are always true.  And I'm proud of Laney for being such a good big sister.  Someday, she'll be old enough to read this, and I hope that she realizes how big a part she was in helping maintain morale and that always-fleeting sense of normalcy.  (Thank you... Space Doctor Laney Lucquete.)

I didn't spend much time with Neely until she got home.  But since then, I (like many others) have become enchanted by her.  She just looks at you with an all-encompassing love and fascination... And you can't help but want to do everything in your power for her.  And the smile!  To consider what she's gone through in a year, and still smile like that... It still feels like a little miracle.  A couple of days ago, she started crawling.  Those milestones, tiny as they may be, feel like huge victories for us.

When Laney was born. I always felt as though it brought the family together.  When Neely was born, it went beyond that.  It brought our community together.  We have met and been touched by so many wonderful people over the past year.  In the past year, we've seen and been exposed to the best of humanity.  We will never be able to repay the kindness of the friends, family, and strangers who offered comfort and quarter when it seemed like life wouldn't.  And no amount of honorary family titles can do justice to just how much we love each and every one of y'all.

I don't know how this story ends.  I can't... I won't let myself imagine anything less than a happy ending.  And maybe it isn't realistic... But this year has proven that you can't bet against Team Neely.  No matter how this story ends, Neely's ability to bring people together will be her legacy.

Neely turned one today.  And so begins the next verse of Neely's song.  It's stressful to think about what's ahead because the road ahead doesn't get easier.  We know that road will be harder and steeper.  The ground will be rougher and the footing will be shakier.  And maybe this past year was just a small portion of the hardships that come next... But, as with everything else, we focus on the task at hand.  Today we celebrate this long, sad, wonderful, first year.

- "Unco" Jack.

The Official Team Neely T-Shirt

We are very, very pleased to announce that the official Team Neely shirts are on sale.  Shirts are $15, and profits go towards Neely's transplant fund.  The wonderful Keri Jenson is taking orders on these spectacular heather gray shirts until February 15, and they will be distributed once they come in.

How to order:
- If you have a paypal account, sign in, and send a $15 payment to Kerij1028@yahoo.com.  Mark the transaction as a "Gift" under the "Personal" tab.  In the "email to recipient" box, list what size shirt you desire, and it might help to throw in your mailing information as well.

- If you do not have a pay pal account, you can send a check to Keri with your order.  Email her at Kerij1028@yahoo.com for a mailing address for more information.

If you have any questions, please email Keri at Kerij1028@yahoo.com or us at Neelyssong@gmail.com.


Product Reviews:
"$15 for a shirt AND a great cause?!!  Why, that's a steal!  I'm never going to take it off."
- Uncle Jack

"Why, these didn't exist 4 Score and 7 Years ago!  Great product!  Honestly!  It's so hard to find shirts that fit!"
- Abraham Lincoln

Think I might become a Steelers fan when this is all said and done

Trying to find a few moments between the chaos and laundry to update this.  If you are following us on Facebook, then you know we've had a pretty eventful couple of weeks!

We were finally discharged from Dell on November 20th.  We were so happy, but also a little sad to say goodbye to our wonderful friends there on the 3rd floor.  Being discharged and coming home was scary.  Everything had to work out right in order for us to make it to Pittsburgh.  She had to be discharged Tuesday so that she could go to a follow-up appointment on Wednesday.  Then she had to be okay and not need to be readmitted all the way through Sunday for the flight to Pittsburgh.  I didn't even start packing until Sunday morning because I didn't want to get my hopes up too much that we would make it to Pitt.

While we were definitely nervous to be home, we were also super happy.  We love having our two girls home at the same time.  We love not having to drive to the hospital everyday.  I know Neely loves being able to sleep through the  night without someone checking her vitals every few hours.  It feels weird changing her diaper without saving it for someone to weigh.  It takes some adjustment to go back to "normal" where your morning doesn't consist of doctors rounds and your whole day doesn't revolve around the latest lab results.  

Laney's "Swing and Swide"

Laney and Neely, reunited
Thanks, Aunt DiAnne for the matching PJs!

Super attentive big sister

We were so blessed to be home for Thanksgiving.  Josh's sister (Aunt Jenny) was an absolute angel -  preparing an entire Thanksgiving meal AND bringing it to our house!  Laney had a great time coloring and playing with her "Other Gwamma" and Neely got lots of good (gown-protected) snuggles.  There was so much good food!

In keeping with the understanding that we had a lot to be thankful for, we celebrated Thanksgiving again with my parents on Friday.  My awesome mom also made and brought the entire meal to our house and we stuffed ourselves silly again.  My only regret is that we couldn't eat all of the leftovers before we had to leave for Pittsburgh.  So delicious!

Well, by the grace of God, we made it to Sunday without Neely getting sick.  Our flight wasn't until 4PM, so we spent most of Sunday packing.  Packing isn't usually a big deal, but it is when you are going to be 1,400 miles from home and can't say, "Hey Jack, I forgot the (*insert important item here*).  Can you bring it on your way to work?"  I tried to prepare for every scenario.  Ha.

I was nervous about how it would go at the airport.  I envisioned Josh being hauled off to jail if some security person tried something crazy with Neely's meds.  Neely and I had to be specially screened, but it wasn't too bad.  We were able to board early because of Neely's medical condition and had lots of great legroom in the first row.  Since every post I write has to include a moment where I cried like a little baby, I will share with you that as soon as the plane took off, I could not help but cry happy tears.  After months and months, we were finally on our way!  Neely was such a good baby on the flight.  She didn't cry at all and pretty much just slept.  We had a short layover in Orlando, about 30 minutes long.  After finding our gate and sitting down, we discovered Neely's ostomy bag was leaking.  The choice was to let her fly to Pitt with this harsh bile on her skin or go for it and attempt to change the ostomy bag with the remaining 15 minutes before boarding.  Papa said, "We can do this.  Let's go for it."  We put Neely on a little mat on top of a suitcase and laid out all of our supplies.  Like a well-oiled machine, we removed the old bag, cleaned her skin, prepared her skin for the new bag, and stuck the bag on her with a few minutes to spare.  Baby girl didn't cry the entire time and Josh and I both kept our composure even with the time constraint and with people trying to start a conversation.  We got her dressed and it was time to board again.  High five!

Neely did amazing on the second flight also and by then it was her bedtime anyway.  As we taxied to the gate, Josh (as he so easily does) struck up a conversation with the other passengers and everyone told us we were going to love the Children's Hospital.  Everyone was super nice and encouraging.  And that was before we even left the airplane.  After we got our suitcases, we noticed Neely's ostomy bag was leaking AGAIN.  We quickly realized this was happening because we were using a different product and it wasn't holding (an ACE bandage is not as effective as coban ... should have asked for more of that stuff at Dell).  It was pretty late and Neely did not want to be awake, so we decided to mess with it at the hotel.  

We went to catch a taxi to our hotel, but the first taxi driver graciously said she would find us another taxi since she was a smoker.  About 3 cabs down the line, she found one non-smoker.  Even though she wasn't going to make any money off of us, she still helped load up the taxi for the other driver.  Our driver was great.  He was super friendly and told us lots of interesting things about the city.  Did you know Pittsburgh has more bridges than Venice?  Kinda funny that in the last post, my brother wrote, "Pittsburgh is the light at the end of a very long, dark tunnel (and, frankly, who has ever said that about Pittsburgh?)"  In truth, Pittsburgh is literally the light at the end of a tunnel, so probably everyone says that about Pittsburgh!

(This is not our video, but wanted to share this in case you wanted the visual.)

Anyway, the driver asked us about Neely and told us she would be fine.  He also said that the Children's Hospital was amazing.  The people of Pittsburgh are awesome.

By the time we got to the hotel, we were starving, but too tired to do anything about it.  We changed Neely's ostomy bag again and then we all passed out.  The next morning, we had a decent breakfast and took advantage of the shuttle that took us to the hospital.  The driver was also super nice and shared stories with us about other families who had successful transplants.  We told her how nice everyone had been and she said the people of Pittsburgh are really friendly, but it is not the same outside of Pittsburgh.  She wished us well and tried to help us get a dolly for our many, many suitcases.  The people of Pittsburgh are awesome.

Much to Josh's dismay, I had to play Asian tourist and take a picture by the sign.  Walking in the door was a major milestone for us all and I didn't want to miss it.  

This must be his "hurry up and take the picture, woman" face

Neely admiring her wonderful daddy in the admissions office at UPMC.  Her cheeks are about to overtake her nose.

It took us a few minutes to figure out where the admissions office was, but one of the first things that happened was that a very nice woman held the door open for us and our ridiculous amount of luggage.  As Josh got us all checked in, we talked about why we were there.  She was there with her daughter and said, very casually, that her daughter had a liver transplant many years ago, but was not feeling well and probably in organ rejection.  Before I could even express sympathy or concern, she shrugged it off and said it happened all the time and she just needed her meds adjusted.  This was our first introduction to the idea that we were among the experts and that things aren't as scary as they seem.  We talked more and eventually ended up being neighbors on the 7th floor.  She even helped us with our luggage on the way upstairs.  The people of Pittsburgh are awesome.

As soon as we walked into our room, we were hit with this view.  

Sorry, Dell ... you can't beat this view!

Our nurses were great.  Neely had an eventful day: chest X-Ray, an Echo, labwork, and EKG.  We met several people that day and were repeatedly told about how busy we would be in the next few days.  Neely would undergo a lot of tests and we had a lot of people to meet.

Tuesday, Neely had a barium enema, and an ultrasound of her kidney and abdomen.  They also took more blood - like a LOT more.  15 cc's a day is a lot when your baby is prone to anemia!  Josh and I had a pysch eval with the social worker extern, Louise, and a very long meeting with the transplant nurse Bev, who explained the entire transplant process.  We learned so much from her.  I think they expected us to feel overwhelmed with the information, but Josh and I felt so much more at ease after talking with Bev.  To be sure, the transplant process is long and complicated and no walk in the park, but we saw pictures of patients who had gone on to live happy, "normal" lives.  Here are just a few of the things we learned and continue to reflect on:

*One of the best things we have going for us is having Laney as the older sister.  Neely will learn so much just from watching her and trying to keep up with her.

*Neely will be as "sick" as we allow her to be.  Meaning, if we raise her in a bubble and call her a "sick kid", that is the role she will assume.  She will be dependent on us all her life.  We should not raise her to be any different from Laney just because she has medical issues.

*There is a point, several years past transplant, that several of the tranplanted kids start to pass away.  This coincides a bit with kids hitting their teenage years and with families becoming less vigilant about follow-up appointments and anti-rejection meds.  After several years of doing okay, it is easy to become complacent.

*Intestinal transplant is a relatively new procedure.  Lots of kids have blazed the trail for us and each year there are new insights into how transplant affects you emotionally, socially, and physically.  As these transplant kiddos get older, a whole new set of problems emerge.

*The divorce rate is high for transplant parents, but patients do a lot better with "intact" parents.

Oh, we learned so much during that presentation.  I think we were allotted 2 hours, but ended up taking up about 4 hours of Bev's time.  She is brilliant and has been there long enough to see transplanted kiddos grow and thrive and have babies and go to Rome and play football.  It was a great meeting.

We also met GI, who said it might be okay to start oral and g-tube feedings again.

Wednesday, we attended a support group.  There was only one other family there, but I have to say we learned a lot from that family - a mother and daughter.  It was interesting to meet different parents, see their parenting style, and see what effect the parenting style had on the child.

We met with Diana (behavioral pediatrics) that day also, and had a great talk.  I think it was meant to be more of an info-gathering conversation, but Josh and I probably talked her ears off.

Mommy and Boo-Boosies

Another view from our room

Lots of great stuff happened on Wednesday.  Neely drank formula from a bottle and started her g-tube feedings.  We walked her around the hospital a bit and everyone just fell in love with her (like always).  Josh had, by this time, new friends all over the hospital (like always), so we had fun walking around.  We even felt comfortable enough to leave Neely to the nurses' care while we went out on an actual date.  Though we vowed not to talk about anything medical, we didn't make it past the soup and salad before we started discussing the day's events.  We were so happy to be in Pittsburgh, so happy to meet all the brilliant staff, and so happy to get some time to ourselves.  That night, we probably stayed up until midnight just talking.

At midnight, Neely was sleeping peacefully and had a normal temperature.  At 2AM, Neely started to cry a little.  Not a full-on cry, so I let her soothe herself off and on for about 10 minutes.  Finally, I got up to check on her.  She was radiating heat.  The room was hot and she was swaddled, so I quickly unwrapped her and tried not to panic or wake Josh.  I took her temp ... 103.  The highest I've ever seen her.  Josh woke up and we tried cooling her down and hoped it was nothing, but I already knew.  A rectal temp confirmed her fever.  They tried Tylenol and took blood cultures immediately.  Neely was miserable and I started to shut-down for a few minutes before I could compose myself.  Josh and I took turns holding her.  She felt miserable and didn't want to be put down.  We were so tired, we could barely keep our eyes open.  The Tylenol did nothing for her fever.  They tried IV Tylenol, but it barely made a dent.  She was fussy and crying and angry and miserable.  They started her on antibiotics, but those didn't seem to help either.  Without knowing what the infection was, all they could do was put her on broad spectrum antibiotics and wait for the cultures.  Having been through this entirely too many times, we knew they were doing all they could, but living in that moment is so unbearable.  Watching your baby in pain is a gut-wrenching experience.  The way she looks at us ... almost pleading for help.  And we can do nothing but wait.

temp is 103, waiting for meds to kick in

holding her is all we can do

The doctors came in and I just remember them looking at her feet, saying numbers.  "What's the cap refill?  4?  5?"

"It looks like she's septic, her heart rate is so high, and her blood pressure is all over the place ... it will be better for her to be in ICU"

I hate to even remember that moment.  I just remember putting my head in my hands and losing it.  Septic.  Oh God, please don't take her from us!  We were doing so well.  Please, not  like this.  Not so far away from home and from all those who love her so much. 

They nurses were so kind and encouraging.  The wonderful PA, Tammy, assured us that this happens all the time and that she would be in great hands in ICU.

They quickly took us to ICU and it was organized chaos.  There were at least a dozen people surrounding her and in the eye of the storm was little Neely, crying and looking at me with confusion in her eyes.  Me, repeating "it's okay, baby, mommy's here" like an idiot ... what comfort is that?  The main doctor there eventually asked to speak to us outside of the room.  Never a good sign.  He took us to another area.  Never a good sign.  He told us what danger she was in and said, "it could go either way".  He told us to go and eat something.  In a daze, we agreed and left for the cafeteria.  Like a jerk, I lost it in the cafeteria, Josh looking at me, with all the strength he could muster saying, "she's going to be okay, mama".  He called JD and then his boss, Eddie, who was amazingly supportive, as always.  Then, he made me eat a little.  Out of the corner of my eye, I see Tammy, and feel bad - hoping she didn't see me lose it.  As we were leaving, she caught up to us and told us not to worry and that it happens a lot.  She'll be fine.  I thanked her and hugged her.  Josh said she had a tear in her eye.  The people of Pittsburgh are awesome.  

Back in the ICU, Neely was resting for a little while.  They had placed an IV in her arm and she passed out, exhausted.  The infectious disease doctor came by and added a few more meds.  Our ID docs at home graciously offered their contact info and assistance and we passed the info on.  The lovely girls of 3N at Dell let us know they were praying and sending healing thoughts her way.

Neely had a rough night, but was well cared for by the nurse, Mark.  Neely had one-on-one care, so we felt okay about leaving for the night to stay in a room at the Ronald McDonald house.  It had been well over 24 hours when we finally passed out.  In the morning, we learned that Neely had had a restless night.  The IV Tylenol could only be given every 6 hours, but around the 4th hour, her temp would rise again and she would cry out in pain.  Without Tylenol, all they could do was pack her with ice or use a cooling blanket to lower her temp.  She was already cold from the fever, but even colder from being packed with ice.  We couldn't even put a blanket on her.  She was connected to all this "stuff", so we couldn't hold her.  Because her pressures were so wacky, they didn't want to give her any real pain meds.  Baby Girl just had to try to ride it out.  It didn't look good.  We were so afraid we were going to lose her.  I just kept thinking about how it would feel on that plane ride home, without her.  It was horrible.

in ICU, resting for a few minutes

with Big Sisto & St. Jude

Papa playing Alan Jackson's Remember When to Neely over and over again.  Cuz, I wasn't crying enough, I guess?

Exhausted Papa ... trying to fall asleep on the rail, while standing up

Papa trying to warm up Neely's little feet with his breath

During rounds, the doctors discussed having a PICC line placed.  I don't even remember why now - something about needing another central line for the TPN so we could run antibiotics through the Broviac.  Josh and I kind of argued against it since we didn't even know for sure what her final antibiotic regimen would be.  In retrospect, we were right that she didn't need it.  However, we learned from it in that we now know she can have a PICC line placed.  By the time she got the line, she was getting better.  The bacteria found was Staph aureus, which only required one antibiotic, twice a day for 30 minutes.


Most importantly, we found out that in the transplant team's weekly conference, all of the folks we met during the week decided that Neely was appropriate for listing for transplant.  Neely will be listed Status 1.  This is the highest priority and when we asked what that really meant, the doctor said, "If there was an organ available, we'd do her now".  Due to her size, that could still mean 1-2 years, but she's on the list!!!  Neely getting as sick as she did definitely factored in to what listing status they put her in.  If she hadn't gotten that sick, they might have gone with a Status 2.

feeling better and smiling again

We were moved back to the 7th floor on Saturday.  We figured we'd be in Pitt for another couple of weeks to finish out her antibiotic regimen.  Except, uh-oh, we only packed for 5 days.  The one time I actually pack like a guy and only include a week's worth of clothes!  The hilarious and awesome family we met on our first day offered to take us to Target to buy some more clothes - especially winter clothes.

This lovely family made us laugh and kept our spirits up.  The dad is a hunter, so of course Josh has a new buddy.  I have a feeling these folks will be lifelong friends.

Monday morning, we were told we could be discharged the following day since we could do antibiotics at home. I was too nervous to even tell my family we might be coming home.  Neely can get sick so fast ... I didn't dare hope we would make it home so soon.

We booked the first plane out ... 6:30AM.  Home by 11AM.  There are a lot of details I've missed because it is 3AM again, but I will add to this when I remember them.  Except for the little "blip" in the middle where she almost died, Pittsburgh was everything we hoped it would be.  Not just for the incredible hospital, but because of all the awesome people we met.  We're likely to spend 6 months there post-transplant (if things go well) and that's not such a bad thing.  There's a lot to do before we get to that point, but let's just sit still long enough to appreciate how far we've come.  How tough this little girl is.  How much she wants to live.

The Lucquetes, home again!

Now for a few minutes of sleep.  Have to be up at 5 to give antibiotics!  And laundry ... always with the laundry.

Projects!

if anyone can help with this stuff, please let us know

*If/When we get the call that an organ has been located, we have 6 hours to get to Pittsburgh.  It takes about 5 hours and 45 minutes on commercial flight, with one stop, IF everything runs on time.  We would like to come up with many, many alternatives.  Plan A - Plan Z.  We've got some great contacts already, but more would be awesome.  If you can think of anything, please shoot us an email!  

*Fundraising ideas ... now that she will be listed for transplant, we can start looking into COTA funding, but does anyone have any more fundraising ideas?  There is a whole world of expenses on the other side of this and we appreciate your help so much!  

*Please share Neely's story with your friends and families.  Donations are awesome, but extra positive thoughts and prayers help more than you'll ever know.  During this last episode of sepsis, Josh and I were so comforted by your Facebook "likes" and comments.  Text messages and emails helped us through the worst moments.  The prayers and love delivered us, minute by minute, to a better place.