A picture's worth a thousand words...

Lu has been in such a great mood!  More smiles, more awake time with her big blue eyes and lots of movement- WE LOVE IT!  We have realized that on paper our little Lu may look like a bit of a mess-BUT in person she looks like a million bucks- well a million bucks is not even a good description-a beautiful, our most beautiful shining star we've EVER seen!  

This saying was on a card we received about a week ago from my aunt Vici.

'You thought your heart was full, but then you found out there was a little empty space, just waiting...waiting for her.'  

You have filled our hearts Lucia-more than we ever could have imagined! 

We LOVE you so much baby girl!

Dates!

Not long after Lucia was born, Jason and I had dinner at Jason's sisters house with her family.  Ashley, her husband Lee, and their daughter Kayla moved to Denver a week before Lucia was born.  They had been looking for the right house and work situation to move from LA and it worked out perfectly that they moved when they did,  an answer to our prayers.  We are Godparents to their almost 1 year old daughter, Kayla and they too are Lucia's Godparents.  Needless to say, we couldn't love them more as family and great friends.  In the past 2 months they have not only been an incredible support but they have given us great advice and one thing in particular has really stuck with us.  
They told us that being a great parents is putting your marriage first.  When you and your partner communicate, take time for each other, show compassion and love to each other, and even yes, go on dates, even when you think you shouldn't leave, the rest falls in place.  Your child/children see and feel the love between the two of you and that creates a loving foundation.   Thank you Ashley and Lee for being the family and friends that you are - words can't express how happy Jason and I are that you are here.

So.....Jason and I are still taking time for each other.  We have been on a few dates alone, including Saturday night,  without Lucia (I begged and eagerly received pictures of Lu via text messaging throughout the night-that was the prerequisite) and we missed her dearly and talked about her most of, if not all of the time, but it was nice to remember what brought us together in the first place and what brought us together had now created our Little Lu.

This week we continue with our second week of Physical and Occupational Therapy through Denver Options and we have a couple specialty doctor appts- cardiology and audiology (nothing that has us worried).   We are also planning on more smiles, maybe some lulu rolls and many more hip hip hoorays!

Thank you Zapatas for an amazing care package, the charm has been on my neck since I opened the box.  Thank you Priests and Slaytons for delicious meals, and Sara Grace and Nate Jackson for the thoughtful and adorable gifts for Lu.  We are praying for our friends, the Golds this week as their daughter with PKS has a very important appointment on Tuesday-we love you Lizzie!

xo Juliet, Jason and Lucia

The Hunt Family below-Lee, Ashley and adorable cousin Kayla

A surprising treat- a Lulu Roll!

Yesterday Lu was doing some tummy time and mommy walked out of the room for a minute-when she came back Lu was on her back?!  So.. I decided to video her to see what transpired...and low and behold a Lulu Roll!  

Hip Hip Hooray!

Lucia had a big doctors appointment yesterday - a hip ultrasound followed by the evaluation of the US by one of our favorite doctors, orthopedic doc, Laurel Benson.  Laurel was very pleased with the results!!!  We have a follow up appointment in 3 months and will monitor her little hips until the full bones have formed but for now we are VERY happy- a big hip, hip HOORAY!  

Shortly after Lucia was diagnosed with PKS Jason and I had an appt with Laurel.  We are so grateful that Brandon, our pediatrician directed us to her.  Laurel came into our room, gently picked up Lucia and calmly and simply asked us what was going on.   For the next hour or so she talked to us about special children, how we were Lucia's best advocates, how to organize all her medical information, how not to take 'no' for an answer, and in no time Jason and I were in tears and feeling more inspired and ready to stand up and deliver for Little Lu.  This was not a time to mourn our daughters diagnosis.  This was a time to get organized, be proactive, thorough, and rejoice!  Laurel passed on a little story that someone had shared with her.  Special needs children start out as spirits and they look down from above and carefully choose their parents.  Lu chose us, Jason and I!  We think about that often and feel so special when we look at our little Lu.  

We also must share something else- LUCIA HAS SMILED!!!!!!!!!!!!!!!!!  In the past few days we've gotten at least one big smile a day and its not a smile that turns into a frown and then a grunt and then a stinky diaper,  its a smile that lights up the room and melts our hearts.  Thank you Lucia for choosing us and thank you Dr. Benson for your time and guidance, it was the best jump start we could have ever received for this journey.

Thank you too for some very special cards and gifts we have received- our families,  Auntie Irma, Suzie and Sam, Aunt Vici and Uncle Rod-such a special gift,  the Nicholsons, Aunt Katy, Heidi, Lucy, Lizzie S, Rosie W, J, Klopfers, Schreiners, Holzhausens, Nora S-she loves her sheep, Beth W, Gilles, Hootmans, Lisa P, Tate, Slaytons, Gretchen T, Le Pughe, Richters, and Billy and Traci, Monica, Greta and John for the delicious meals.   Thank you also for all the facebook messages and texts.  And thank you to Jennifer, Jeff and Areceli for the beautiful Hawaiian flowers which are used in the picture- i couldn't help myself... :)  

And Lu's special friends that she has not yet met, Kingsley, Lizzie, Lily Tangerine, Reese and Lyla.

Happy Fathers Day

About 2 weeks after Lucia was born, Jason called and told me he would be home in about an hour,  he had something special to do for Lu and me...   He got home about an hour and a half later and seemed disappointed.  I asked him if he found what he was looking for and he sadly remarked that it didn't work out..    He later told me he went on a search for tulips to plant in our front flower bed- he had planned to replace all our flowers with tons of grown and beautiful tulips.  If you don't know, as Jason didn't, you can't buy grown tulips to plant, you have to plant the bulbs and then they grow...   The story below was posted on a pks website about a mother and her special needs child,  after you read the story you'll understand.    We layed in bed one night reading it, hugging, crying and smiling at our new little baby that we snuggled in our arms.

Welcome to Holland by Emily Perl Kingsley

When you are going to have a baby, it's like planning a fabulous vacation to Italy.  You buy a bunch of guide books and make all your wonderful plans: the Coliseum, Michelangelo's David, the gondolas in Venice.  You may even learn some handy phrases in Italian.  It's all very exciting.

After months of eager anticipation, the day finally arrives.  You pack your bags and off you go.  Several hours later, the plane lands.  The stewardess comes in and says, "Welcome to Holland."

"Holland ?!?"  you say.  "What do you mean Holland?  I signed up for Italy!  I'm supposed to be in Italy.  All my life I've dreamed of going to Italy"

But there has been a change in the flight plan.  They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease.  It's just a different place.

So you go out and buy new guide books.  And you learn a whole new language.  And you meet a whole group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy.  But after you've been there awhile and you catch your breath, you look around and begin to notice Holland has windmills- and Holland has tulips.  Holland even has Rembrandts.

But everyone one you know is busy coming and going from Italy...and they are all bragging about what a wonderful time they had there.  And for the rest of your life, you will say, "Yes, that's where I was supposed to go.  That's what I had planned."

And the pain of that will never, ever go away, because the loss of that dream is a very significant loss.

But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, and very lovely things about Holland.

Jason, Lucia could not be a luckier little girl to have you as her daddy.  Happy Fathers Day to my husband and to the father of our precious little Lu.  We love you so much.  

Altitude schmaltitude

Turns out Lucia's little lungs did not like the fresh mountain, high altitude, thin air.  We planned on spending the rest of the week in Vail but Tuesday we had a change of plans.  Lucia had several desats, trouble breathing with congestion and coughing from about 1am-9am on Tuesday.  We called her pulmonologist, Margarita (she rocks!)  around 3am and she advised us to up her O2 to 1/2 liter but at 9AM she was still struggling so we took her to Vail Valley Medical Center.  Another round of wires, some tests and examination and turns out little Lu has a touch of pneumonia.  We are safe and sound in Denver now and will give her meds to make her feel better.

Hopefully we are out of the weeds and the meds will kick this stinky pneumonia's ass.  It was a rough day of no sleep and high stress BUT today, Wednesday, we are feeling much better and Lu appears to be feeling better already too.

Home sweet home.
The dogs were happy to see little Lu...

Lucia Elizabeth Dawkins, Fresh Mountain Air

7 weeks old and Little Lu is on her first vacation-and boy does she deserve it!

Before I go any further I need to comment on Lucia's full name,  Lucia Elizabeth Dawkins.  My mom, Elizabeth, had more than deserved having my daughter carry her name, but after the last 6 weeks words can not express how thankful I am to my mom.  Thank you mom for helping me in more ways than any daughter could ever ask for- cooking, cleaning, showing up bedside at the hospital at the wee hours so I could sleep, helping me through doctor appointments when Jason could not be there and so much more....  Jason and I don't know what we would have ever done without you.   After two months of help and love, my mom heads back home to Ohio next Sunday and mom, you have no idea how much you'll be missed.

Last thursday, my mom, Lucia and I left my house around 10AM and were home around 5PM.  We managed 2 successful button feedings in the car, 3 doctor visits and gathering a lot of information.  Two of the visits went as well as they could have.  The ENT doctor was the first and the hardest.  Lucia seems to be doing well but we have not fixed her breathing problem.  In 5 weeks she will have another sleep study to see if her sleep apnea has improved from the severe category, we are praying each day that it has.  If Lucia is still having severe apneic episodes at that study we will have to make some very tough decisions.  Either jaw surgery, a tracheotomy or both.  I can't even believe I am typing that last sentence about our baby.  We will cross that bridge when it needs to be crossed.

For now we are in Vail enjoying fresh mountain air and some quality time together.

Thank you for thoughtful comments on the blog, homemade meals, cards, gifts, texts, and your prayers all for our little Lu.  Our little 10lb 6 oz girl with bright blue eyes and the cutest chubby toes feels the love all around her from near and far.

Little Lady Lu-sha

We have had a lot of people ask how to pronouce her name- its just like the beautiful island where we honeymooned- St. Lucia (Lu-Sha).  If you have not been you should go :)

It is a big week-not as big as last week-thank goodness- but every day is new and different AND easier.  After our weekend of receiving all of Lucia's accessories we have started to adjust.  Feedings through her button no longer take an hour to set up, medications don't take 20 minutes to measure, alarms going off don't make us panic-we can tell (sort of) a false alarm vs a real alarm and real alarms have not been frequent- yay!

Jason and I brought home our little girl 4 days after she was born.  She was in our home, cared for and loved and guarded for a month and she was doing great.  Once your child is diagnosed with something different and special you tend to panic when your baby acts like a baby- WHY is she crying, we MUST feed her on the exact minute that the doctor told us,  is there something wrong with her eyes or is the light too bright, is she purple from low oxygen or is it just the darkness of the room... We have to remind ourselves that she is a baby and babies cry, eat when they are hungry, get fussy and don't always look the same- ALL the time.  We CAN do this and there is no perfect 'prescription' from the doctor.  "When in doubt- look at your baby", that is something easier said than done at times but we are getting there...
Lucia is on oxygen 24/7,  she is on her pulse ox machine when she is relaxing or asleep, she is fed through her g-tube when she eats and that is it.   A few wires, a whole lot more finesse and math calculations and we are getting there..

We are half way through our doctor appointments for the week- tomorrow is a big day. The ENT(ear,nose and throat doc), Pulminologist -Margarita Guarin, and the follow up surgery visit with Steve Rothenburg.  Lucia has seen more doctors in the first 6 weeks of her life than Jason and I have seen in our lives combined.   Every visit is scary but every visit we know more and know what we need or don't need to do for the time being.   We look at her progress (10lbs 6 oz),  the sparkle in her blue eyes, and her cute legwarmers (they are so cute) on her chubby legs and we smile and sometimes cry.  She is our nugget and the light of our lives.

Nights and days are getting easier and every day we are more astounded by the outpouring of love that our friends and family are giving.  We have been touched by friends that we have not talked to in over 10 years, or friends that we have never even met.   We have bonded with families of other pks kids and parents of other children with special needs.  It is incredibly humbling to feel the power of prayer and energy.  The world is a good place.  We continue to pray and hope for Lu, that she will not have severe complications, and if she does that we will be able to figure it out.

Lu would like to say a special thanks to her auntie Adam and Lala for watching her tonight, her boyfriend Shaw for sending her cupcakes and good luck to her PKS friend, Elizabeth 'Lizzie' Gold, for her upcoming g-tube surgery.

Love, Juliet, Jason, Lucia and our furry children, Frieda and Blue.

St. Lucia Hospital

We made it home yesterday!  Before we left we got some great news from Lucia's neurologist, Dr. Litwin, that she saw no sign of seizure activity while reading her EEG.  Also, the doctors noted no abnormalities on her spine or brain while reviewing her MRI.  As 70% of the PKS kids suffer from seizures, were very relieved that we don't have to worry about them at this point.  The sleep study did show significant central and obstructed apnea and we hope that will improve over time.

As much as we LOVED Lucia's doctors and nurses at Rocky Mountain Hospital for Children at PSL, we were thrilled to go home.   Shortly after returning home, the home care equipment started to arrive.  Her feeding pump, oxygen tanks, apnea monitor, and pulsox monitor (measures oxygen in her blood) made their way into our house- 5 deliveries and 8 people in all giving us directions on how to operate our infant daughter's lifelines.  After trying to take it all in (more than we've ever paid attention to anything) we geared up Lucia.  2 monitors, a g tube feeding device, and an oxygen tank all attached with various wires and two with alarms-we didn't even know how to pick up and hold our baby.  After a few tears, a little yelling and some deep breaths we situated Lucia in our arms and once again got lost in the love for our little Lu.  Saturday night was not easy but we made it through.   We were also happy to not get any complaints from the neighbors about our new Vegas noises that rang throughout the night.  The alarms do not always ring on emergencies-they can alarm when she simply moves her foot too much or for no apparent reason at all.

We were so overwhelmed with all the devices on Sunday that we called her pediatrician, Dr Brandon Davison-Tracy, who has been more than a doctor throughout all of this,  he is a saint to our little girl and us..  After going over all the equipment with him he suggested we call the hospital to see if it was all necessary- as he thought it was not.  Fortunately, the hospital made a mistake and we will be able to send one of the monitors home tomorrow.  As for the pulsox monitor, we get to keep that- which is the one that loves to beep/alarm quite often when she's hooked up.  When we are told Lucia no longer needs the pulsox, I will gladly use one of the skills I learned in college and chuck it into the street.  Even so, Jules and I are much more relaxed about all of this after getting situated.  

With all of that said, Lucia is doing awesome.  She hasn't had any of the scary drops in her oxygen levels and her stomach has been taking food down like a champ.  We had a fantastic BBQ tonight-thank you Phoebe and Josh,  and enjoyed being home together as a family.  A week full of doctors appointments await but on Friday, Jules and Lucia are heading to Vail with family and friends for a much needed vacation.  

Again, we'd like to thank everyone for the dinners- a special shout out to Amy and Dustin for a treated last meal in the hospital from our favorite restaurant-Tables,  cards, flowers, little gifts for Lu, blog comments and nice phone calls.  Also, we'd very much like to thank all of the PKS families that have been willing to share thier stories, all of which give us the strength to stay focused.  Many of these families have been through so much, most of which is still very hard for us to imagine but somehow they make things work.  

Love,

Juliet, Jason, and Lucia

Goin' Home!!

Friends and Family,
Barring any unforeseen happenings tonight, we will be on our way home tomorrow.  I wanted to write a quick thank you to my beautiful wife.  Since last Thursday, she hasn't left Lucia's side.  She's managed 5 to 10 doctors visits a day, has comforted Lucia 24/7, and has done it all with a smile on her face.   I haven't seen her upset, flustered, or even tired after not sleeping for the better part of two weeks.  I have no idea how Lucia or myself could do this without her.  Thank you Jules.

While the last month has been trying, we wanted to let you know that regardless of the circumstances, the past six week has been the best of our lives.  There is nothing like holding your sweet little girl, being with family, or visiting with your best friends.  Whatever the future may bring our little family, Jules, Lucia and I will do our best to make everyday count as a good one.  Like Jules says, "We're in it to win it!"

A good friend and mentor once told me to enjoy the passage of time.  Why not, right?

Love you guys,

Jules, Jason, and the only one that hasn't been scared the last six weeks Little Lu.

Wires Galore!

Lucia had 3 feedings yesterday through her new G-tube or 'button'  soooo happy to give our girl some more delicous and nutritious milk again.  She was a bit irritable from the surgery so we are still giving her some pain meds and  comforting her as much as we can.  To determine the root of the desats and bradycardias she is also getting some more tests.  

Last night an EEG for 13 hours-20 little wires attached to her head with wax and then wrapped up like a beehive.  She had 2 incidents of low numbers so we will know if they were seizure related.

Off with those wires and goop at 9AM and by 9:30 we were off to another floor for a sleep study to see if she has sleep apnea.  Seizures and apnea are very common for pks kids so we want to rule them out or treat either as necessary.  

So as I pump my milk,  little Lu is sleeping soundly with more wires, more headwrapping and is also getting fed through her button!  

We'll update the results as we hear back from our neurologist, amazing Jessica Litwin.  

Thanks for the continuous outpouring of love that we are receiving.  Little Lu feels so special already and is excited to meet each and every one of you some day.  

Desats and Bradys...And MILK!

Desats:
Before Lucia had her surgery she had incidents where her oxygen level dropped...a lot- it's called desat or desaturation (under 90 for more than a few seconds).
Bradys:
She has also had a few bradycardia's aka brady's where her heart beats too slow (under 80 for over a few seconds is a brady).
Typically desats and bradys are combined- hers are sometimes and other times not.

Lucia had 3-5 desats in the 30's and several in the 50-70 range since we've been in the hospital along with some bradys (she may have had them all along but we just haven't known).   Needless to say they have all been scary for us-the monitor beeps, and beeps and beeps and when the number on the screen does not jump back up the nurses run in and together we would try to arouse Lucia to breath and we'd place an oxygen mask on her little mouth until she was back up again- usually would take 5-25 seconds- seems MUCH longer.  She has been on O2 since last Thursday and we were hoping the surgery fixing the reflux would solve the desat/brady issue BUT last night proved it was not so :( ...  She had over 5 desats combined with some bradys.  The nurses and I were very attentive to Lu and she usually recovered quickly.  There is something else going on though that needs to be fixed...
So over the next few days we'll be doing some tests with neurologist/pulminologist and more..  BUT on a fun note- SHE CAN HOPEFULLY EAT TODAY :)  yay for breastmilk!
She is also recovering well- sleeping with no fevers or other side effects- Yay again!

more to come and thank you all for posts, emails, texts and more..
xoxo