Lulu's Butterfly Birthday

In Londyn's 3rd year, she aged much more than any 3 year old should.  She learned and saw things that I hadn't in all my 26 years.  Selfishly, Lulu's 4th birthday means a lot to me.  Zoe had just been discharged from her week long hospital stay the day before Lulu's 3rd birthday party.  It was a miracle that Londyn was able to have her sister there to celebrate.  I remember having one of those blissful moments where I had Zoe in the front pack and Londyn was blowing out her candles... and all felt normal for a brief moment.  I cherish those memories.  This year has come with many challenges to find ourselves in a new light and rebuild from the rubble that settles after child loss.  Heavenly Father really knew what he was doing when he blessed me with Londyn.  She is at such a fun age and a really good, easy kid!  Without her, I don't know how I would get out of bed in the morning.  I don't know if I would have the desire to try.  It is because of this little joy in my life that I have every reason to get out of bed and continue with my resolution to FIND SOME FUN! She deserves to be a kid and and experience all of the beautiful things that this life has to offer.  We all deserve to find joy in this journey, no matter how many roadblocks come our way.

*****

Londyn has been determined to have a butterfly themed party for months now.  I was a little hesitant to start planning because she has never really expressed an interest in butterflies before.  I was worried she would change her mind!  Even if she did... my motto is, "You get what you get and you don't throw a fit!"

Lulu was lucky that 12 out of 13 girls were able to attend her party.  She is really lucky to have so many girls her age closeby!  This was a treat because it is rare that they all get a chance to play together at the same time.  Because really... what sane person has a playdate with twelve 3 to 4 year old girls?  Oh... this one! (minus the sane part)

Decorations 

Butterfly PB&J's

Decorate Butterfly Wands

The biggest hit was the Little Heart House.  We bought this used playhouse last Spring and planned to revamp it for Londyn and Zoe.  Our plan was to decorate it with pink and red with hearts. Our was from inspiration the darling houses on Martha's Vineyard.
Since we don't know how long we will be in this home, we decided to make it more generic for future residents to enjoy.  It is still a work in progress but we got the bulk of it done over the past two weeks.  We surprised Lulu with it completely transformed for her birthday!  Inside we put a play kitchen with table and chairs.  When she saw the kitchen, she said "A kitchen in my heart house?!  It's what I've always wanted!"

She loves it!

It was fun to watch the girls play in the house because it was like a classic clown car.  Girls just kept piling in!  I was amazed they could all fit and actually play!

{Butterfly Candy Bags}

who knew a clothespin, snack sized plastic bag and pipe cleaners could transform into a cute little butterfly!

Lulu's friends all gave her such lovely things.  She is such a lucky little girl.  Not because of all her gifts but because she has so many sweet little friends.

Thank You's & Hugs

At the end I gave each girl a butterfly net and tossed foam bugs in the air for them to catch.  Some of them couldn't get enough of this game!

The past 4 years with this little butterfly have been the greatest blessing.  

We love our Londyn Joy.

Innovative Dance Recital

Lulu has loved every minute of dance at Innovative Dance this year.  She showed off of star quality at the end of the year recital on June 22nd.  We were only allowed to record during dress rehearsal, but she was the cutest thing on stage during the big performance.  I love my little performer!  

After recital I took Lulu to her favorite restaurant Red Robin for her usual... mac & cheese.  

While waiting for our food, I snapped a few of Londyn's staple faces.

Like mother, like daughter...

Who would've thought 24 years ago, I would be posing in my tap shoes just like my daughter.

Just Yesterday

It's hard to believe that a year ago today, our 2 month old baby Zoe was back in the operating room for her Gastrostomy Tube.  This is what I wrote on June 23rd, 2012...

I am sitting here in the Pediatric Intensive Care Unit at Randall Children's with Andrew and Zoe... waiting.  What was supposed to be a simple procedure and overnight hospital stay has turned in to so much more.  I don't even know where to begin... 

On Thursday, June 21st - Andrew and I woke up to our alarms at 5am.  We packed up Zoe and checked in  for her surgery at 6:15am.  The procedure started at 8:30am and she was finished by 9:15am.  We were amazed at how short it took to complete.  They took us back to be with her in the recovery room and she was wide awake, making cute faces and breathing all on her own.  

Zoe was so happy to see her Daddy and hear his voice.   Her eyes lit up when she saw his familiar face.

In Recovery

We were then taken up to room 624, where we settled in for what was supposed to be only one night.  Our nurse Amy and CNA Jane were super sweet and accommodating.  

Nana Armitage & Grandma Milne came up with Lulu to see Miss Zoe.  Andrew and I are so lucky to have mom's that love each other.  Those two are trouble together.  

Nana Brendi

Comfy Cozy

 PEG (Percutaneous Endoscopic Gastrostomy) Tube

Feedings through her new tube have been running without any problems

All day after her procedure, Zoe was constantly crying and fussy.  She seemed more uncomfortable than expected, especially because the nurses tried Tylenol, Morphine and Oxycodone.  At about 3:45pm, our nurse Amy took her temperature and she had a fever of 101.4.  This is when we realized that something wasn't right.  They ran a CBC, blood culture and urine culture to look for infection.  Zoe was then given Tylenol and Oxycodone every 4-6 hours and the highest her fever reached was 102.  

From about 6:45 to 7:15am on Friday morning, Zoe had three seizures. They gave her Ativan to quickly stop the seizures, which also made her very sleepy.   

The pediatric team talked with the Neurologist and decided that it would be very rare for her seizures to be related to the fever and they wanted to do an MRI, MRA, Spinal Tap and EEG.

At about noon, Zoe had another seizure in the middle of her EEG getting set up.  This time, the seizure lasted  6 minutes long.  

Taking Zoe down to MRI

We then met with Dr. Leon, the Anesthesiologist who would be doing the sedation for her MRI.  Following the MRI, the plan was to do the spinal tap while she was still sedated.

After only capturing the first 2 series of images, Zoe's O2 sats kept dropping and her heart was out of rhythm, also known as heart block.  They had to intubate her and stop the MRI.  She was then transported up to the PICU, where she had many small seizures all throughout the night.  

After arriving in the PICU

This morning, Zoe made it through the entire MRI and was able to have the spinal tap done as well.  The spinal tap fluid came back negative of any infection, but the MRI showed three noticeable spots.  Two larger spots on the right side of her brain and one smaller spot on the left side.

The larger picture on the left shows three spots on her brain which are shown in white.

Our team, consisting of an Intensivist, Neurologist, Hematologist, Infectious Disease Specialist and Cardiologist all met together and came to the conclusion that from the findings on her MRI, Zoe had a stroke very recently, which is the cause of her seizures.  The stroke was most likely the result of a blood clot, as she is considerably susceptible with her congenital heart disease.  They're plan is to monitor a 24-hour EEG tonight and hopefully be able to extubate her tomorrow morning.  They have also started her on anti-seizure medication called Phenobarbital and an anticoagulant to help reduce the chance of any further blood clotting.  

This was taken right before we left this evening.  Her head is wrapped to secure all of the electrodes on her scalp.

These last few days have been exhausting, emotionally and physically.  Being back in the PICU is almost more difficult than the first time we were there after her heart surgery.  Her condition is hardly comparable, but our love for her is so much more deep and life altering.  When she was in the PICU after her heart surgery, we had barely held her and everything was so new.  We loved her dearly then, but now... after caring for her 24/7, feeding her, seeing her smile, hearing her coos and cries... watching her grow, we are head over heels in love with this tiny little human.  Andrew and I have bonded with Zoe and the feeling is so much more different as we stand at her bedside, because we want so badly to see her eyes light up and her little tongue stick out.  We miss her grunts and the way she sucks on her fingers and pulls at her ears.  We miss our Zoe.

When Zoe had her first seizure, I was simply rocking her in my arms.  She was fussy and I was singing to her.  All of a sudden I noticed her left fingers and arm thrusting back and forth, along with the left side of her head.  In that moment, I was terrified.  That is something no mother ever wants to see their child have to go through.   That seizure was the first of many and I have felt more and more helpless with each one.  Knowing that my 2 month old daughter, who has undergone open heart surgery, infection, five times of general anesthesia, countless needle pokes, seizures and a stroke... I am beyond amazed at her strength.  Not only is her body tough, but so is her spirit.  My dad said something today that really changed my perspective.  He said that Zoe was sent from God to teach all of us.  I believe that is true and that I have already learned more about life and myself in these past two months than I have in all my 25 years.  Zoe is special that way.  She has taught me everything from faith and unconditional love to sacrifice and the gift of Christ's atonement.

I had a moment today of weakness.  I was feeling the why's and why me's... why us... why Zoe?  I realized that it is that very weakness that Zoe was brought here to strengthen.  I'm nowhere near perfect and none of us are, but when I look into those beautiful brown eyes and hold her warm little body close to mine, I know without a doubt that she is the closest to perfection I will ever know on this earth and in this life.

Bishop Jaussi, Andrew and my Dad gave me a blessing last night.  Two things that I distinctly remember Bishop Jaussi mentioning in the blessing were that I would have strength and that Zoe was surrounded by angels watching over her.  Those were things I really needed to hear because at times, I question my ability to be everything that Zoe needs.  The reality is that I can't do it alone.  I'm not meant to do it alone.  My Heavenly Father knows this.  He has surrounded Zoe with countless angels... her sister Londyn, extended family members, friends, church members, doctors, nurses and more along the way on this journey of hers.

Yesterday, as Andrew was referring to Zoe, he said "Half a heart, full of love."  I cannot think of a more perfect description for little Miss Zoe.  She may have a heart defect, but that doesn't stop her from being one of the greatest blessings in our lives.

Thank you for all of your comments, emails and especially all of the prayers.  We have felt your love and support.. 

Reading these words brings back so much fear and heartache.  My heart breaks for that mother.  I remember vividly the hope and excitement that I felt when we went in for that procedure... and then the terror that was felt when I held my baby as she endured those first seizures.  What breaks my heart more is to know the rest of that baby's story... and how it ended.  This particular event showed us just how much of a fighter Zoe was in this life.  She had survived open heart surgery at 2 days old, a sternal wound infection AND a stroke.  We were able to take her home just a week after that traumatic event.  More meds were added to her regimen, including the heparin shots that Andrew and I dreaded giving her every morning and night.  We were also sent home with twice as many doctors and appointments, but we did it.  She did it.  She fought hard for as long as she possibly could.  The hardest part about the many first anniversaries we will experience this year is that an entire year is passing by without her and our life with her here is getting further and further away.  Every day, I take tiny moments to consciously remember her smell, the sounds she would make, how perfect her tiny nose was, the way I used to hold and kiss her hands, how soft her feet felt when I rubbed them.  I know that if I don't make the effort, I will lose those memories.  The thought of losing those raw moments in my memory of how she felt in my arms or how her eyes looked at me with so much hope and wisdom... is my biggest fear.  I pray that we will always remember what it felt like when she was here with us, touching our lives and others.  

I miss you so much sweet girl.

Father's Weekend

 Father's Day wasn't just a day this year, it was an entire weekend!  

On Friday we went to the Strawberry Festival at Lee Farms and then started painting the "Little Heart House" in the backyard.

Saturday started with breakfast in bed...

We then surprised Andrew for a couple go kart races at Sykart, where our friend Alex met us to join in the fun.

This was Lulu's first time watching Andrew race and she absolutely loved it... which is clear in this video!

Next surprise... 

My friend Erin watched Lulu for me so I could take Andrew to see the new Superman flick.  He has been dying to see it!  It was such a good movie, but the company was even better.

When I asked Londyn what she wanted to give Daddy for Father's Day, she said "Cookies and Milk... because he's like Santa!"  Could there be any greater compliment from a 3 year old?

So this morning, we made Andrew oatmeal chocolate chip cookies.  Aside from the break apart cookies, the pre-mixed... add an egg and some butter are as close as it gets to cookies from scratch in my kitchen.  Lulu did everything but put them in the oven.  She even picked out the perfect cookies to serve Daddy with milk.  She was so proud!

Londyn was so excited to sing to Daddy at church but when it came down to the big moment... she wasn't feeling it and just looked out into the congregation.  

It was a special treat to have Andrew at family dinner.  He works Sunday nights so it has been a really long time since he was able to join us.  It was definitely a meal not to miss... baby back ribs, twice baked potatoes, corn on the cob, coleslaw and cornbread... yummm!

A year ago, Andrew was snuggling both of his daughters on Father's Day.  I love this man and am blessed for the family that we share together.  He is my Big-Tall-White-Man, Handy Andy, hard working, Rockstar chugging, beard growing, kart racing, gadget loving husband. He has been an amazing dad to our girls and we love him to the moon and back.

Amazing Grace

Earlier this year I decided to put my dance background to good use and start my own program.  I established a great relationship with our local Senior Center and rented space in their facility to hold my classes.  I wanted to start small and teach one class for each age group with a max of 8 students.  The Little's (3-5 y/o), Minis (6-8), Petites (9-11) and Juniors (12+).  With 32 students, I focused on ballet, jazz and hip hop.

After 5 months of classes, I hosted my first ever recital on June 1st.  We had 9 routines and about 130 guests in the audience.  It was pretty rewarding to see all of the growth in my students from start to finish.  I loved seeing their confidence shine and watching them show off all that they learned.

Having Lulu in my Little's class was one of my favorite parts about teaching dance.  I loved sharing that part of my life with her.

My sister Jenelle also taught dance classes this past year and we did our recital together.  Jenelle and I have shared the love of dance since before I can remember.  We both trained at the same studio, spent 4 years on   the Sherwood high school dance team, both were All-State dancers and then I followed in her footsteps as a coach for the same dance team.   

Andrew was very supportive in my dance classes.  It worked out perfectly because I scheduled my classes on the days that Andrew slept during the day and worked at night.  That way, none of my classes interfered with our time together as a family.  

In memory of my sweet Zoe, I named my program Amazing Grace Dancers.  My intention for this project was to move forward with something new, while taking her along with me.  One of the many lessons that Zoe taught me was to fear less and enjoy life more.  I have lived most of my life with anxiety and missing out on many opportunities out of fear.  Because of my amazing daughter, I have been given a second chance at life with more confidence and perspective.  

Life after Zoe has been confusing.  I still don't know which direction I'm heading, but I do know I'm never alone.  

Although I'm not raising her in this life, it's almost like she's raising me.  

Londyn Joy: 3 years 11 months

My first born will be turning 4 years old in less than a month.  Lately I have found myself fighting with the time passing so quickly, missing my baby Londyn and enjoying every minute of this new stage as a little-big girl.  She is wise beyond her years in many ways and has her tiny tot moments as well.

I absolutely love when she speaks her mind... not saying what I want to hear, but just being herself.  Some of my favorites have been:

"Londyn and I!" - After hearing me say "Londyn and Me."

"I LOVE Facing Time" - in reference to Facetime

"Classical music is my favorite because it's what princesses listen to."

"I don't like boobs... they're all just sticking out!" 

"I want you to play with me because you're my special sweetheart." 

"you should really wear a bra at nighttime, mom... cause I don't like seeing that. "

"I love snuggling with you mama. You're so bumpy."

"That's just hilarious."

"mom, I like you a lot."

Favorites:

Song- Just Give Me a Reason by Pink

Book - Gracie

Color: Pink

Activities: Riding her scooter, dancing, singing, playing with friends

Londyn has loved preschool so much this past year that I didn't want her to lose that momentum over summer break.  I decided to continue working with Londyn on her studies.  We spend at least one hour, Monday-Thursday having preschool time.  I told Lulu that she could name our preschool whatever she wanted.  Without hesitation, she declared "Smarty Pants Preschool."  Clearly- she has no issues in the self-confidence department.  

I had Londyn help me come up with different themes for each week.  For our first week, we learned about the sun and lucky for us- it was a warm week and we played in the sun every day!  We start out each lesson with a vocabulary word, writing her name, phone number and birthday.  We then go over the letters in the alphabet and the sounds each letter makes.  After that we do workbook pages on letters, numbers, shapes and colors.  She loves workbook pages and is always eager to get a BIG red star on the top of each page when she's finished.  We end with sight words, a rhyme, song and then a game.  

Londyn LOVES to learn and I hope she can hold on to that passion for a very long time!  In fact today when we were all through with our lesson, I said it was time to sing our "goodbye song" (I love you... you love me... we're a happy family...) She put her famous pouty face on and said "Ughhh!  I don't want to say goodbye to school time.  I want to learn more!"  Seriously... where did this kid come from?

{first library card}

{picture day @ dance}

Londyn had her second visit ever to the dentist today.  Both times she has been so brave!  I can tell she is scared and uncomfortable but she powers through it and let's them complete the exam.  Dr. JJ is awesome and each time we have had an amazing experience with him and their staff!

This week's theme is Recycling, so I took Londyn to return 4 bags of cans and bottles.  She was hesitant at first because of the loud noise but quickly became Miss Independent.  She finished the job, grabbed the tickets and redeemed her hard earned cash!  

I could not love this little girl more if I tried.  I am truly blessed.

Hello, Goodbye.

Hello...

Two days ago we were able to visit with Miss Paula, our Case Manager and favorite person at Randall's.  We delivered Zoe's presents from her first birthday party, including the stuffed penguin that was almost as big as Londyn.

In a strange way, the hospital has become a second home and Paula helped make us comfortable from day one.  I remember the very first time we met her.  We had an appointment scheduled to tour the hospital just a few weeks before Zoe was born.  Our connection with Paula was instant.  She always laughed at Andrew's cheesy humor and with her son being a Marine, we were a match made in heaven.  This was the third time seeing Paula since Zoe died.  It is always a bittersweet reunion because each time seems so familiar, as if Zoe is still here with us being monitored in one of the rooms.  Paula always helped the time pass during our lengthy hospital stays.  She always kept us in the loop with Zoe's plan and even came in on her day off to check on Zoe after her first stroke.  She is a kindred spirit and someone our family will cherish forever. 

Goodbye...

Today was not as lovely of a visit to Randall's.  We visited our friends the Wormer's and their beautiful little girl Delylah.  Delylah was diagnosed at just a few months old with SMA (Spinal Muscular Atrophy).  SMA is a disease that causes the muscles of the body to weaken and deteriorate.  Delylah and the Wormer family have been fighting for her life ever since she was diagnosed.  

Doctors never thought she would make it to her first birthday and there we were, celebrating with them on a beautiful sunshiney Saturday.  Even though she was struggling on many different devices and tubes to make her comfortable, she was there in an adorable tutu allowing us to see the light in her wide eyes.  

This past Wednesday, Delylah's condition worsened drastically and she was rushed to the hospital while unresponsive.  After monitoring and tests, Delylah's brain shows little activity.  This has led Erin and Jasmine to make the excruciating decision to take her off of life support this upcoming Tuesday.  

When Erin called Andrew late Friday night to give him the news, we were both in shock that this was happening to them.  We knew it was in their future, but that doesn't make it any easier or less painful.

My heart broke for them, for us and each family that experiences the tragedy of losing a child.  Every possible thought ran through my mind and I had to ask, WHY?  Why does this happen?  Why do children have to die?  Why do some parents find themselves holding their children and feeling them take their last breath?  Why do we have to say goodbye?  I prayed that night for peace.  Not for answers because I know those answers are beyond my comprehension and it is far too dangerous to dwell on the Why.

Heavenly Father answered my prayers today through the topics that were discussed in church.  The messages that I heard were made so clear to me that I knew He was sending me comfort through the words of others.  A friend of ours spoke on his experience in losing some close friends to an avalanche and how the grieving families struggled greatly without the comfort of knowing that they would reunite with their loved ones again.  It was then that I knew that my purpose wasn't to question Why? or What if?  But to have faith and exercise my ability to share the peace that I felt when we prayed to know if it was Zoe's time and was blessed with the painful assurance that her work here was done.  Although it will never have been enough time with her, the sacred peace that we felt was without a doubt the most powerful gift I have ever received from my Father in Heaven.

In Sunday School, my brother Kevin taught a lesson on the Plan of Salvation, in which he reviewed the plan that our Heavenly Father has created for each and every one of us to return to Him and those that have gone before us.  I have learned about this Plan many times in my life but today it was made much clearer.  I know that I am a daughter of God and that he sent me here to learn and become more like Him.  I know that I can and will return to Him and our sweet Zoe.  Londyn has told me many times, "but Mom... it's taking SO long to see Zoe again."  Some days this feels more true than others, but I know that Zoe was ready and worthy to return to Him.  I am not there yet.  I still have so much to do and so much more to learn.

All throughout church today, I knew we were going to go visit the Wormer's and see Delylah one last time.  It didn't really cross my mind that this visit might be difficult.  Entering the same floor where we last stayed with Zoe, smelled and felt so wonderfully familiar.  It's odd but that PICU was our home and those nurses were an extension of our family.  As we walked down the hallway to Delylah's room, we saw several of Zoe's nurses.  Bonnie was one of our nurse's after Zoe's first stroke.  After many attempts, she was the only one who could get a blood draw out of Zoe's veins.  She also made a memorable chirping noise that made Zoe light up.  Seeing her made me smile.

We were able to visit with Jasmine and Delylah for a while.  Delylah looked very tired, yet peaceful.  Jasmine told us about all of the events that took place in the past week, leading them up to their decision to take her off of life support.  She proceeded to tell us that they will be donating her kidneys and liver.  She then told us that they plan to donate Delylah's heart, in honor of Zoe.  I was overwhelmed with emotion, almost as if we were receiving her heart ourselves.  The sacrifice that this family is making to make a miracle possible for another is touching beyond words.  Through the pain that they are suffering, they are thinking of other suffering parents and their children fighting for a chance at life.  I hope that they can find some peace in knowing the magnitude of the gifts that they are giving.

Our last moments with Delylah

Jasmine & I

 On my way out, I saw our very last nurse who was with us up until we left the hospital doors for the last time.  I remember being hesitant then because we hadn't ever had her as our nurse before, but she was so kind and gracious with us every step of that very difficult day.  When I stopped to talk to her, she instantly remembered me and said she didn't believe what she was seeing when she first saw us.  She teared up and said we were a very special family and that she will never forget Zoe.  

I thought I was holding my emotions pretty well up until that point.  But I hit my limit and couldn't help but break down into tears.  Both visits this week brought back a lot of very wonderful and very painful memories.  

I met up with Andrew and Londyn in the waiting room.  They were doing a puzzle together when I walked in.  I couldn't control my tears.  I was just so sad for the Wormer's.  I was so sad for us and that Zoe wasn't with us.  In between kleenex's, I couldn't help but snap these photos of my husband and daughter together.  Yes- Zoe is gone but she is the fourth member of our family and will always be with us.  Looking at these two warmed my heart because in the midst of all this tragedy, there is joy in eternal families and the time we still have together in this beautifully heartbreaking life that is mine.