Thank you

The day Lucia was born (pictured above) was the best day of our lives.  In the past 3 months, so much has happened and we have so much to be thankful for.  If you are reading this now, YOU are many of the reasons we are thankful.
When Lucia was diagnosed with PKS,  Jason and I were not sure who (outside of our immediate family) to tell or if/when to do that.  I shared with some of my dear friends, and their words of encouragement helped me more than I ever imagined.  I knew I had amazing friends but this took everything to another level.  I encouraged Jason to reach out to his friends as well because I knew he would need it too.
The emails, calls, facebook and texts became a lot to respond to on a timely basis...so we decided to create a 'blog'.  Having only visited one other blog once, we weren't really even sure what a blog was or how to create one, but this seemed like the time to learn.  Jason and I had no idea how many friends, family, friends of family, friends of friends and strangers would care to read about our precious little girl.  Thank you for caring about our daughter and for sending us your energy, faith, and love.   Every single day we are touched by love and it is truly amazing.  Thank you.

We have such a big week ahead and it would be hard to imagine going through it without all of your support.  Lucia has appointments with the Pulminologist, Cardiologist, EarNoseThroat Dr, a swallow test, and getting the results of Lucia's sleep test from last week.  Next Sunday seems so far away...
Thank you all again for caring, sharing your care, giving us hugs, sending your love, and lifting us up for our little angel, Little Lady Lucia.  We'll update the blog as soon as we know more.  If Lucia decides to laugh or does something extraordinary, we'll update then too :) .

Thank you Renee for visiting and for Lu's sweet nightie, thank you Becky Powell for your kind message, Claudia for your fun book and card, Phil and Anna for your gift, Taryn and Tim for your message, Coco for your email, Gretchen for coming by after our rough night and not only dropping off a sweet treat but moving my car and paying our street sweeping ticket, Calvin and Becky Hemphill for your beautiful card and sweet gift, Josephina Luevano for your amazing card and adorable hat, Laura for Lu's manicure,  Danielle Adams for your message, and all for taking the time to read this and to care about little lady Lu.
As a college friend, Lizzie Spehar, wrote in a card for Lucia "When life gives you a hundred reasons to cry, show life that you have a thousand reasons to smile." You all help give us those smiles to share with our little Lu.

God Bless,

Jules, Jason and Lu

You look at Little Lu...

Just when you think you're going to have a bad day, you look at little Lu.  That is what I think as I look down at our girl, who's just woken up for the day and is full of love and light.

The sleep study last night did not go well from OUR perspective.  Lucia was in a crib with wires attached to goop on her head, some apnea bands around her waist, stickers to her chest with wires, a pulse ox on her foot and eating through her button, all at the same time- who could sleep well with all of that icky jazz?  We were up for most of the night trying to get her comfortable, paci in, paci out, legs kicking, cold little hands under the blanket, little hands out of the blanket, carefully situating sleep positions to not detach anything, side sleep, back sleep and unfortunately a whole lot of no sleep.  
Jason and I were in a queen bed next to her.   If you've never had the pleasure of having a sleep study, the rooms are not bad, kinda like a 2 star hotel room, not a hospital room.  They want you to sleep so they make it as comfortable as possible.  But even so it is not home.

The tech said don't worry,  they were able to get data they needed with the few hours of sleep she did get.  We got home around 6AM this morning.  We cuddled Lucia and she slept soundly in our big comfy bed until almost 10AM..she usually wakes around 7AM.

Needless to say it was starting out as a not-so-good day.  I can't say I'm not scared or sad.  But up we go, shower, dressed (in a dress, that sometimes can make you feel better), and Lucia on her diaper changing pad to get her ready for the day.  Standing over her,  a few tears trickling down my cheeks as I take off her pj's, she's still half asleep,  I look down at our little girl and feel sad, AND THEN she opens her big blue eyes and looks outside at the glistening sun- happy as can be.  
Just when you think you're going to have a bad day, you look at little Lu.

It's going to be a good day.  Daddy working, two dogs, two girls, and two dresses.  Thank you, once again little Lu, for picking us up.

Night Night

All hooked up and ready for bed at RMHC.   

Night Night Little Lu.  We pray that you sleep soundly tonight and every night.  

We love you so much.  

Mommy and Daddy

Bloom Lucia, Bloom!

Lucia was admitted to Rocky Mountain Hospital for Children/RMHC at 1 month old on May 26th, and released from RMHC on June 4th.  She is on oxygen, is monitored on an alarm when she sleeps to alert us of drops in oxygen/desats, she is on some medications, and eats through her g-tube, she is not allowed to eat anything orally.  She has had numerous doctors appointments since but some of the follow ups are on a 'wait and see how she grows' plan.  Some of the 'wait' is over and now it's time to 'see'.  Tuesday night we'll spend the night at RMHC in the sleep apnea area to have her second sleep study.  On June 2nd she showed very severe sleep apnea so we pray that has significantly improved.  We will find out the results in 7-10 days...   The best case is her obstructed apnea has lessened and she won't have to have any surgeries.   If it has not then we will discuss jaw surgery and or a tracheostomy.

The following week, on August 3rd,  we'll have another swallow study to see if eating orally is in her near future.  

Jason and I have been scared of this week and now that the time has come-we THINK we are ready.  We are ready to see what Lu needs to get through these problems.  And as my friend Laura said,  at least there are options.  As bad as the options may seem, at least those options exist to hopefully make Lucia's breathing easier!   Lucia has had 4 consecutive nights of great sleep, meaning little or no alarms.  That is amazing progress and we hope it's a sign of her apnea improvement as well... they are tied together but not completely.   Sounds confusing and it is to us a bit too.  

Lucia will be just 3 months old on Tuesday.  I'm watching her as I type and can't believe how cute she is, how big she's getting, how much Jason and I have learned, how sweet those cheeks and nose are, how much she has gone through, and how it seems like a just a month has gone by and at other times a year...and those toes, those cute cute toes..  

Little Lu little Lu,  We hope that your muscle tone has improved to help your breathing and that you will not have to endure anything painful and too difficult.  You are just a wee little girl and we love you so much.  Whatever lies ahead, we pray that it will make you feel better and help you grow as God intended-strong and beautiful.  One of our friends, Katie Garces, gave us a card for Lucia with this saying- 'every flower that ever bloomed, had to go through a whole lot of dirt first' and she added "BLOOM LUCIA, BLOOM'.  We agree-BLOOM baby girl..we'll help you through whatever dirt it takes to get you there and we know it will happen...

Thank you Brian Flood for your generous donation to PKS Kids, thank you Billy for your inspiring and genuine yoga classes, thank you Aunt Ann for your gift and card to Lucia,  and thank you all for your thoughts, messages, prayers and support.   Lucia would also like to send her love to her new Italian friend, Giacomo.  

Peas!

Those of you that know me well know that I have a love for peas but this brings a whole new meaning to them.  Someone we have never met works with our dear friend, Elyse.  She apparently noticed Elyse following Lucia's blog, she started reading it too and MADE a gift for Elyse to give to our family.  It is soft, very detailed, beautiful, cute and extremely thoughtful..  It is 3 peas (each about the size of a large grapefruit) in a pod-HAND KNIT!!  It truly signifies family.  God created each of us differently and we are bound by marriage and now have given birth to a child. We really are three peas in a pod.  No matter what happens we will do our best to support, lean on, and cuddle each other for our lifelong journey.   Thank you Maura for reminding us of our team and purpose together.  Lucia, Jason and I can't wait to meet you.  Your gift is incredible.

Pictured from top to bottom:  Jason, Juliet and little Lu

Thank you Shanna for a delicious meal on Tuesday night.  Thank you Uncle Dennis and Aunt Peggy for a card and article that meant sooo much to us.  

Hugs and Peas to all.  

The little engine that could

About a week after Jason and I announced we were expecting we found out some friends of ours were also expecting and were due just a week after us!  We emailed, texted, talked on the phone to share pregnancy updates and we even discussed renting a house for a destination wedding we were to attend for mutual friends on February 21st.   Our expecting friends never made it to the wedding.  On February 7th,  Avery Shaw Richter arrived at only 27 weeks and weighed only 2lbs 7oz.   For 115 days Shaw was in the hospital with circumstances beyond words.  Shaw endured spinal taps, brain surgeries and more.  He and his parents, Candace and Michael, fought for his life, prayed and never gave up.  On May 21st,  miracle warrior little Shaw was released to go home.   He still has a long road ahead, and we keep Shaw in our prayers.

They too updated their friends and family through a blog that Jason and I followed.   This past Saturday night, Michael was in town for the night and we gathered together with friends to visit.  Michael handed us a little gift from their family to ours.  Jason and I were speechless and still are so moved.  Here is what their letter said:

Jason, Juliet and Sweet Little Lu,

Not by choice, but our little ones are kindred spirits...logging hospital time, alarms, monitors, wires and countless prayers.  Their paths and destinations are not known, but both babes are cradled in an infinite amount of love and support.  

From Shaw to Lu, we give you our most precious gift...Nash's (Nash is their 2 year old son) choo-choo train.  While small and insignificant to most, each one of us have clung to this train in prayer during many dark days. Nash brought it to Mommy in the hospital and Mommy clung to it on scary days and lonely nights as she longed for home and for a healthy delivery.  Daddy held it in his hand during Shaw's delivery- and for 115 days, it rest in the crib of Shaw until he was healthy enough to come home.  Along the way, Elyse sent an angel that we included on our train.  After, we referred to Shaw as 'our little engine that could'.  

And so we pass it on to Lu. It is 'on loan' from a special place in Shaw's nursery to guide through dark days and offer a reminder that you remain in our prayers.  You have such a beautiful family.  We love all 3 of you.  

Candace, Michael Nash and Shaw.

Thank you Candace and Michael for being the friends you are and have been.  Thank you for loaning us your most precious gift-we know it truly is.  It now sits in Lu's crib and though it is so tiny, we know how much love, tears, fear, prayers, energy and hope it carries.  We love your beautiful family too, so much.

Thank you to Anna again for your great visit- she's leaving today to drive cross country to her parents in Cincinnati.  Lucia had a good week - continued physical and occupational therapy-working on trunk and neck strength to help develop her muscle tone..and yesterday we saw her GI doctor and we'll be increasing her daytime feeding amounts via her button and eventually cutting out her continuous night time feed.  Her g-tube/button is healing great and I think she's even starting to guard it with her tiny little hand- so cute.

Much love,

Juliet, Jason and smiley little Lu

A spoonful of Sugar!

Late Wednesday night one of my dearest friends came to visit,  Anna Sugarman.  We met through a mutual friend and we were room mates when I lived in Manhattan Beach, CA-just outside of Los Angeles in 2006.  Anna is one of the most unique individuals I have ever known.  After living with Anna for just about 6 months with my dog Frieda, I mentioned to Anna that I felt a strong desire to go to Africa to volunteer.  Within seconds she offered to take care of Frieda and without that I could have never gone. She loved and cared for my furry child for 4 months.   When you meet Anna she seems almost too good to be true- beautiful on the outside and amazingly, just as beautiful on the inside.  Her positive outlook is an inspiration to me and not to my surprise, Little Lu immediately took to Anna, as does everyone whose life she touches.   On Thursday, Anna and Lu were hanging out and Lucia smiled not once, not twice but FIVE times-in less than an hour (the picture above is of Lu holding Anna's hands)!  Anna's been volunteering in Honduras and traveling for the last year and a half so I hadn't seen her since our wedding in Mexico last April.  She has been such a ray of sunshine to have around again.   Thank you Anna for being the special person you are and thank you for adding a GIANT spoonful of Sugar to Lucia's life this week.  It is obvious at just 3 months that Lucia loves you just as much as Jason and I do.  Lucia is definitely feeling the love all around her..

Thank you Rhoda for visiting last week and for the nice bottle of wine,  thank you Rosie for the sweet gifts, and Michael Dabbs for the generous donation to PKS.

Lots of smiles and love with extra sugar on top,
Juliet, Jason, Lu and Frieda & Blue too!

Why Me?...Life's too short!

Early this morning, I took our dogs to the school field around the corner from our house.  Our weimaraners, Frieda and Blue, were playing with another dog, Tao,  a ridgeback. Actually Tao kept taking Frieda's ball so Frieda kept chasing Tao, who was chasing Blue ...   so the owner and I were just talking and turns out he and his wife had their first child, a baby girl,  just 2 days after Lucia was born!  They delivered at the same hospital and our stays overlapped- even our time in the NICU overlapped..   I asked how it was going and he went on to say 'not well'.  Their daughter got a staph infection and has been in isolation, given meds,  gone to specialists, has the same pediatrician and they even have the same numeric address as us- just 2 streets away.  She is going to be just fine but they have had a very tough start.  I hope our little girls will be friends someday.
He asked us how we were doing and I filled him in a bit on Lu.   When he was talking about his sweet girl he said,  "I think why me, all our friends have healthy babies, maybe because we are older..."  When he said the words 'why me" it felt so strange and I've thought about it all day.  Who knows why me, us or anyone- why not?   No one chooses or deserves to be born with complications or have disabilities.   No one chooses to have problems eating, walking, talking..  No one chooses to have a special needs baby instead of a perfectly healthy baby.  It's something you don't think about or prepare for- it just happens- and why wouldn't it?  There really isn't time or a reason to think why me.   The odds of having a child with a rare syndrome are crazy but they are just odds and it happens and things could definitely be worse.
Since we have gotten Lucia's diagnosis and read about other PKS kids, we do pray that she is in the minority for many of the symptoms- she's able to walk, communicate, have mild cognitive issues, avoids seizures, and most importantly is able to understand feeling loved and that she is just a happy girl.  Yes, we thought that our child would play soccer or tennis, but today we wish with our whole hearts that she is a happy little girl that is able to feel the love all around her.
Little Lu had a great day.  She smiled at me two times and was alert and awake for most of the day.  We hope that she smiles more tomorrow and reaches out to touch our faces and will someday reach for out to hold our hands.  Why does Little Lu have to have such a rough start and diagnosis?  Only God knows the answer to that and maybe Lu knows too.  Maybe someday she will share why she chose us but for now as my father in law, Mario would say, "Life's too short,  Onward and upward!"  We LOVE you Mario!  And yes- Onward and upward Little Lu!  Why not?!

Mario and his sweet, sweet poodle, 15 year old Toby.  

Relaxing Rainy Day

Today marks one of about 7 weekdays that Lucia has had NO appointments since her May 11th diagnosis.  Little Lu pondered "what to do, what to do" and then decided she would just enjoy being a couch potato on a nice Monday rainy day in Denver.

Sometimes no plans are the best plans.

Grocery and BBQ's and Swimming-OH MY!

Little Lu is getting big- 2 1/2 months old, about 13lbs and 23 inches long!  So it was time to give her some new experiences and a weekend full of new adventures.  We decided to have a last minute BBQ with friends on Friday night and with that called for Lucia's first visit to the grocery store- something her mom was bit hesistant to tackle.  After consulting two of her sister-in-laws about the shopping cart/car seat situation,  Juliet and Little Lu headed off to their local supermarket.  It was actually quite fun and not scary -  car seat fit nicely on the front so that Lu's cute toes were just about at chin height to her mom (love looking at those toes)  oxygen tank on board in cart, diaper bag on back, and off we were. Grocery Store-CHECK!

Friday night was a fun BBQ with friends, a BBQ at Grampa "Babo" Mario's and Grandma "Nonnie" Linda's on Saturday, and this afternoon we are heading to a BBQ at our friends, the Barretts.  Summer BBQ's- CHECK!

Now,  in between all of the grilling and shopping, we had to get those cute toes wet and cooled down- what better way than a trip to the pool!  After all,  summer would not be complete without a splash in the pool!  So.. Saturday we met Jason's family, including Jason's awesome grandparents/Lu's great grandparents, Nanni and Poppi, at the pool.  They LOVE Lu and her cousin, Kayla and it's so special to see them light up every time we get together.  

Pool-CHECK!

Lu smiling in pool- CHECK, Lu screaming in pool-CHECK!

Summer here we finally come!

Thank you Cheryl and Ken Fleming for the adorable outfit for Lu.  Thank you Cindy, Larry, Shane and Kristen Seely for the cute green rabbit, the Olson's for the awesome Lucia blanket, the Hardings for a generous donation to PKS kids and love to Jason's incredible family for a fun filled weekend!  We love you!  

Nonnie and Poppy- June and Bud Dawkins-Lucia's Great Grandparents!  

A wonderful gift

It has been amazing how many touching and generous gifts Lucia and Jason and I have received since the arrival of our daughter.  Yesterday a care package came from a dear and long time friend, Leigh Bobilya-aka Lucy.  Lucy will be flying out from Indianapolis to visit and help in a couple weeks and is bringing her little girl, Elizabeth.  We were best of friends our freshman year of college at DePauw, then Lucy transferred and we have kept in touch over the past 19 years.  We have not seen each other in over 6 years.  I wanted to share her most amazing care package...hope you don't mind, Leigh.

Lucy made the L pictured above for Lucia.  It truly is one of the MOST BEAUTIFUL things i've EVER seen.  Here is what she wrote on the back.

Dearest little miss Lu
I have loved your mommy for lotsa years, and now i get to love you too!  This L hung in my room when i was little, but it was just a plain and boring L all those years!  When you were born, i decided to give my L to you. But first i tried to snazz it up, so that it might be almost even just a tiny bit as lovely and unique as you!
Will all the love i have to give, 
aunt Lucy.  

Lucy also sent along a gift for Jason along with a card.  The summer after our college graduation, Lucy and I backpacked in Europe.  One of the most memorable excursions was in Holland....although neither one of us were truly into flowers or planning, ironically we planned and made our way to the biggest tulip garden in the world, Keukenhof, Holland located about 25 miles from Amsterdam.  Here is what Lucy's card said....
Jul,
I know these days are filled with love, care, hope, concern, and joy all wrapped up in one beautiful package called Lucia.  You are in my thoughts constantly.  I hope Jason likes the pic- I guess the day finally came that we now know why we went to all that freakin trouble to take those pictures.  God knew you would be back in Holland amongst the beautiful tulips one day down the road.  And now that you're there, I may live in Italy day-to-day, but my love for Holland will never, ever be far away.  Our friendship has survived distance after distance ever since we met, Jul.  Truth be told, I actually see Lucia's birth as a bridge between the distance- called Motherhood.  We will always love our children the same no matter where we live. But I promise you that I will spend the rest of my life studying, learning, and seeking new information about Holland- that way we can travel together for Lu.  
I love you,  Lucy 

Below is one of about 50 pictures we took while at Keukenhof 15 years ago-Lucy framed this picture of me, amongst the hundreds of tulips, for Jason.

Thank you Lucy. Thank you so much.  I love you too and can't wait to see you and meet your Elizabeth.

Great Holiday Weekend

Usually for the 4th we make plans to go to back to my hometown of Ohio or to the mountains.  This year, our mountains weren't meant to be so we stayed in Denver and had a relaxing, great weekend.  It was nice to not have any plans to be anywhere or do anything- just quality time with family and friends.   Took the dogs swimming,  pushed Lu a lot in her stroller-love the Bob- and hung out with friends.   The best part of the weekend were Lu's little smiles, of course,  but she had 2 consecutive nights of ZERO desats!  We kept her O2 at 1/4 instead of increasing it and it worked out beautifully.  I also bought Lu a new flower and firefly pink mobile for her crib, (inspired by Annarose Zapata) and she LOVES it - that was the highlight of Lucia's weekend.
On Saturday we talked to another family with a PKS child.   Coincidentally, Jason's family friends have a cousin with 7 year old named Aiden that also has Pallister Killian.  It was uplifting to hear a bit of their story and to listen to some advice.  The most important advice that they gave us was-  'No matter what, it WILL be alright'- that is what Dawn and Eric of Pennsylvania assured us.  They are so right, its just hard to remember that at times.  We feel so lucky to live in America and Denver with so many great doctors, nurses, family and friends.
Thank you Goggin for the great book-love Mother Goose, thank you Aunt Kathy and cousins Elena and Paloma for the fun care package, thank you Gene Foster and Susan and Steve Foster for the sweet gifts, our neighbors David and Aliza for the great cd, Amy, and Bob and Cheryl Montgomery for the really nice cards and for all the very thoughtful comments, messages and calls.  And Congratulations to our friends Pat and Ana Redmond on the arrival of their baby boy, Henry!

Scout

One of the names Jason and I had on our 'list' of names if we had a girl was Scout.  We obviously ending up choosing Lucia and it couldn't be more perfect.   Jason wrote in a journal he bought for Lucia a couple days after she was born,  he plans to give her the journal some day.    I secretly read the first entry and it's one of the most beautiful things i've ever read- here is just a tidbit of it, its about the day she was born  "...a year and a day earlier, we got back from our honeymoon.  We went to the most beautiful place in the world (St. Lucia) .....so we named you Lucia, after the most stunning place on earth..."       Anyway,  Little Lu has undoubtably earned the name Scout as well.  She has already endured soooo much and she does so without much of a fuss.  She is SUCH A GOOD GIRL.  She cries when she needs us to 'vent' her button (kind of like burping), she may fuss when her pacifier plops out of her mouth or when she has gotten numerous shots, but other than that she is our AMAZING little Lu- a happy, happy scout.

In the last couple nights the pulse ox monitor has gone quite mad- alarming us of desats between 15-30 times!  Jason and I really thought it was a bad sensor- which may just be wishful thinking...   I just spoke to the cardiologist and he wants us to increase her oxygen at night.  Her echo on Wednesday showed abnormal high blood pressure in her lungs (she has had this since she was born) he really thought it would have gone down by now.  So, during the day he wants us to give her tiny little nostrils saline to keep them from getting too dry from the increased O2 (kinda like when you get water in your nose-not fun). So our little scout Lu will have to tolerate more saline...she is also still receiving nebulizer treatments with Pulmicort 2x a day to help with inflammation in her lungs-about 10 minutes for each treatment- again not fun.    We'll see how the increased oxygen affects her desats at night and check in with the cardiologist Tuesday.  If she is still struggling we may have to put her on meds to treat that and also try to evaluate her sleep apnea sooner.   We hope that with time will come growth and improvement for her apnea... Right now her next sleep study is scheduled for July 26th.

On a good note,  Lucia's hearing looks normal!  PKS can affect hearing and or cause deafness so we were soooo thankful of those results!  I had to take a picture of her hearing test - she looks like she has joined a tribe with fancy head and ear jewerly :)

We'll take the good with the bad and continue to pray that our little scout,  Lu, starts to feel better with the higher oxygen.

Thank you Dave and Suzie Gardner for the generous gift and sweet card for Lu, thank you Rosenthals for the nice card as well.  It was also so nice to hear from some old friends- Verity, Tara O,  and Stacy A.

Have a happy and healthy holiday weekend.  God Bless America

Juliet, Jason and Lucia