Zoe Grace: Forever.

{forever holding our hearts}

It has been two days since Andrew posted the following on Zoe's Facebook page...

"Today we met with Dr. King (pediatric cardiologist) and Dr. Huffman (neurologist). They aren’t feeling as though Zoe will be making a recovery this time. The damage to her brain is too severe to get the Zoe we all know back. She needs heart surgery to survive but her neurological state will not allow the surgeons to operate and she does not qualify for a transplant. We now, as parents, must decide the best option for our beloved daughter and family. We've asked for prayers of peace, we thank you all who have offered those on Zoe’s behalf and ours. We need them now more than ever."

Although we had sensed that this would be the end result, actually hearing it from our doctors was heartbreaking. How do you accept that your daughter's journey here on earth is over?  How can you be certain that it is her time to go?  I have been asking these questions over and over again in my head.  But, what I wasn't doing was asking my Father in Heaven those very same questions.  It was my husband who told me to pray about our decision and wait for peace.  It has taken prayer and time to know in my heart and soul that Zoe is ready to move on and that although short, her time here with us was significant and meaningful.  

She has touched so many lives, including ours with her spirit and fight for life.  What pain her body has been through in her 4 1/2 months of life is more than most individuals do in a lifetime.  She survived open heart surgery, infection, stroke, numerous pokes and medications.  She has shown us miracle upon miracle, from the day she was born.  It is an honor to be her mother... to protect and carry her for 9 months... to sit at her bedside day after day in the hospital and care for her for the few short months we were able to have her home.  I will cherish my tender memories of rocking her at night, smooching on her delicious cheeks and snuggling her on my chest.  I am blessed to have her sealed to me and my family for time and all eternity.  I know with every fiber of my being that we will reunite and the next time I see her, she will be without pain and suffering.     

Zoe has taught me patience and understanding.  She has inspired me to never give up and always fight for what I believe.  She has taught me that the most valuable gift in life is family.  Our time with her has been precious and sacred, but I can't even begin to explain how much I will miss her.  My heart aches every minute of every hour for this little girl.  How can I let her go?  How can WE let her go?  My only comfort is that families can be together forever.  We are a forever family.  

{When changing the tape on her breathing tube, we got to see her sweet face for the first time in 4 days}

We started explaining to Londyn that we will have a few more days with Zoe and then she is going to live with our Heavenly Father.  I told her that we would all miss Zoe and that it is okay to miss her, but she will be happy in heaven and we will see her again someday.  Londyn was quiet for a few seconds and then said very softly, "I'm going to miss Zoe so much, Mom."  Lulu is only 3 years old and I know she can't fully understand all of this, but I know that she is feeling sad.  Yesterday, we did hand and foot prints as a family.  Londyn loved the idea of doing a craft project with her sister.  After we got home late last night, we were tucking Lulu in for bed and she popped up and said, "I want my picture I made with Zoe on my wall."  Andrew put it up on her wall and she got out of bed and looked at it for a few moments.  She smiled and was then able to go to bed.  My heart hurts for Londyn as she has always loved her sister.  She always wants to show Zoe her freshly painted nails or pictures she has drawn.  Often times when she is doing something fun, she says "Zoe is going to do this with me when she gets bigger."  I hope and pray that her heart will heal along with ours and that she will never forget her baby sister.

 

We also had Chelle from Momentoes come in and do castings of Zoe's hands and feet.  It was such a beautiful experience to watch her preserve every little detail about her tiny fingers and toes.  I will cherish this special keepsake forever.  

Another special moment was when we got to hold Zoe for the first time in 6 days.  Scooping our little angel up in our arms was a little piece of heaven.  It felt so warm and familiar.  

I asked our nurse Erika if it would be possible for them to move Zoe from a crib to a bed, so we could snuggle up and sleep with her.  Without difficulty, it was done.  Since yesterday, we have been able to feel her breathe... smell her skin and hold her close to our bodies, as if we were at home in our own bed.  

Many tearful visits.

 

{My nieces: Megan, Kaylee, Jen & Samantha}

{Nieces & Nephew: Kayla, Kamry, Mary, Emma & Kyler}

Each one of these tender hearted kiddos wrote Zoe a letter.  Each one brought tears to my eyes.  They also played this song and said it has always reminded them of Zoe.

 

{Uncle Todd}

{Dr. Flath, the OB and family friend who delivered our sweet Zoe}

 

We have been struggling with the decision of when to take our baby off of life support.  How do you make that decision?  How about never?  Although comfortable and not feeling pain, it is selfish to keep her hanging on any longer.  Her poor body has done all that it can.  We want to give her peace and rest.  I have been fighting with the question of when... when will I be ready?  But that is not my decision.  It is Zoe's.  

Andrew's mom composes a beautiful piano piece for each grandchild and last night we crawled into bed and listened to Zoe's song.  It starts out so sweet and fragile, just like Zoe.  It then works up to a deep and strong middle... which reminded me of the struggle and pain that Zoe has suffered.  The song then finishes with a beautiful and almost heavenly ending.  We both shed many tears from beginning to end, followed by peace in knowing that she is ready.  She is ready now.  

In a couple of days, we will let our angel Zoe Grace get her wings.  She will return to the arms of our Father in Heaven and finally be at peace, once again.  

Our family has been blessed by the kind thoughts and prayers of many, all over the world.  Zoe has touched so many lives and we are grateful to have been a part of her miraculous journey.  

Zoe Grace: Peace.

Today was a very humbling day for Andrew and I.  We snuck into the back of another wards' sacrament meeting to partake of the sacrament and reflect on our family... on our girls.  Every night, I leave the hospital feeling so beaten down and then I return in the morning with more optimism.  But today was different.  I still felt somber and discouraged.  

Shortly after we arrived at the hospital and we met with Dr. Metrick.  She explained that Zoe is showing signs of seizure activity on the right side. Considering her seizures were on the left side when she had her stroke 2 months ago, this could mean that she has injured her brain on both sides. They gave her Ativan at about 11:30am and are restarted Phenobarbital for the seizures.  Dr. Metrick said that it is possible that the minimal movement we have been seeing has been seizures or reflexes. She is getting a 24 hour EEG to monitor any further seizure activity and also looking for any improvement in the brain since her last EEG.

After speaking with Dr. Metrick, we met with the Intensivist for the floor, Dr. Champion.  She was very kind and compassionate, wanting to know how we were feeling and if we had any questions.  She said she would advocate for us as parents and our confusion with both Neurology and Cardiology, as we expressed that both teams have different opinions and plans.  When I asked if there was any possibility for her to come out of all this, she said that if Zoe does indeed fight through this coma, she will not be the same Zoe that we know and love.  

Pieces of our hearts were taken today.  We wept over our sweet girl and in each others arms almost the entire day.  After many tears, Andrew and I discussed the reality of Zoe's condition.  We are both beginning to grasp the idea that Zoe's journey might be coming to an end.  She has fought a good fight, shown us that miracles do come true and strengthened us in ways we never knew possible.  No matter the outcome, we want peace for baby Zoe.   Not only peace for her body, but peace for her heart, spirit and soul.  If she is meant to stay here with us in this life, we will cherish each and every moment.  But, if it is her time... we will have faith and accept that it is in God's hands.  

{tender moments}

{Nana Brendi and Papa Tom flew in this evening.  We are so grateful for their love and support}

{Big sister Londyn}

Compared to previous hospital stays, Londyn is now very attached to her baby Zoe.  A few days ago, Londyn was walking around the house, yelling "Zoe.... Zoe!  Zooooooe!"  I told her that Zoe was at the hospital and she said "I am ready for Zoe to come back home now."  When seeing Zoe during the last few visits at the hospital, Londyn has gotten excited and said "Zoe's eyes are open!  She's looking at me!"  Tonight we were snuggling her in our bed and I told her that I had missed her.  She said "I miss you too... and dad... and Zoe."  It breaks my heart to know and hear how much Londyn loves and misses her sister.  

We continue to pray... not for a miracle, but for peace.  Peace for Zoe.  Peace for our family.  And peace for our aching hearts.  Regardless of what peace means for us... we ask for peace and only peace.

Zoe Grace: Waiting, prayers and more waiting.

Zoe remains stable today as she continues to fight, heal and rest. She has been closing her eyes to rest more frequently and even grasped my finger with what little strength she has. Zoe is breathing on her own but the ventilator will kick in if she needs extra support. Her O2 sats are in the low 80's and her heart rate is ranging from 120-125. She seems much more rested and relaxed today. 

Dr. King feels that there is no change today from his evaluation yesterday.  But, I am choosing to disagree.  The gentle responses that we see at her bedside throughout the day... every day, minimal but certainly significant.  I see tender mercies and signs that she is hanging on and fighting hard.  Dr. King told us today that she will have another EEG and CT on Monday.  After reviewing those results, a plan will need to be made.  

The waiting is getting harder and patience is running thin.  I miss my baby and just want her back.  When we kiss on her now, she smells like "Hospital Zoe"... strong scents of medical tape and alcohol wipes.  When I got home tonight, I smelled all of her recent clothes and blankets... but couldn't find her smell anywhere.  My heart hurts.  I feel so far away from her right now.  I just want my Zoe back.

Zoe Grace: Time.

Yesterday I arrived at the hospital around 10am feeling refreshed and optimistic.  When I first stepped into Zoe's room, I noticed she was in the middle of an EEG and also Dr. Metrick was doing a neurological evaluation.  With no tone of compassion, she said something along the lines of "I'm Dr. Metrick and I am doing an evaluation on Zoe.  The EEG is showing that there is no processing going on in her brain and the brain waves that are there are very slow.  She is in a coma and it may take weeks, months or never until she wakes up.  Only time will tell."  She then said something to the EEG tech and quickly left the room.  I was floored.  What just happened?  I then looked down at my sweet little girl and her eyes slightly open, glossy and with no response to my presence.  I broke down.  Immediately I needed to call my husband.  I looked at the clock and in about 10 minutes he would be starting his Physics midterm.  The timing could not have been worse.  I knew that if I called or text him about the news, he wouldn't be able to make it through the test.  So instead I called my dad... bawling and barely able to speak.  I regurgitated what I had just been told, he said he would cancel the rest of his patients and be right there.  I also called my mom and she was immediately on her way with my sister Jenelle and my brother-in-law Todd.  At the time, I didn't know if I wanted them all there because all I wanted was Andrew.  But their presence made all the difference until I was finally able to talk to him two hours later.

Once I finally was able to talk to Andrew, I think it hit him like a ton of bricks.  He still had a two hour Physics lecture to get through before he could even make it up to the hospital.  Luckily he arrived in time for us to talk to Dr. Legras (the cardiologist on call for the day).  Even though we weren't able to talk to Dr. King, we were really looking forward to hearing from one of his partners.  Unfortunately, I felt even more lost and confused after speaking with him.  He was all over the board with every possible outcome.

Feeling beat up after Dr. Legras left, we were visited by Dr. Colson shortly thereafter.  Dr. Colson is a Pedatric Gastroenterologist and happened to recently move into our ward.  Although we have only seen him a few times, his visit could not have been at a better time.  Just talking with him about everything really broke us away from the doom and gloom conversation we had just had and turned everything around to a more positive feeling.

My dad's office was so thoughtful and sent us a huge platter of sandwiches, a green salad, fruit salad, chips and even a platter of cookies.  The timing couldn't have been more perfect because almost all of the adults in my family came to support us in the evening and we were able to eat together in the waiting room.  It was nice to be with family, get out of the ICU for a bit and of course, comic relief.

We decided to pick Lulu up from my brother's house and take her home with us for the night.  The best possible medicine was snuggling and laughing with her in our bed.  We looked at pictures and videos of her and Zoe on our phones.

This morning started out early at 6:30am when our nurse called (per my request) to let me know what Dr. King said after his morning evaluation.  The echo showed that her heart function has improved with the Milrinone.  Other than that, he said that we just need to wait and see.  I fell back asleep and we all slept in until about 10am.
Within minutes of seeing Zoe today, even though her eyes were glossy and not really looking at anything, she was opening and closing them when I talked to her... her hands and feet were trembling and occasionally she would slightly move her right hand and arm.  I was feeling so encouraged and positive.

Bishop Jaussi came by to check in on us and little Zoe.  It was so nice to see a familiar face outside of the hospital world.  He will be back tomorrow to give baby Zoe a blessing.

Later this evening, Dr. King came in at 5pm to talk to me.  He felt that Zoe's condition had not improved and that the slight movements she is making could easily be reflexes and might possibly be the extent of what she will ever do.  He wants to do another EEG on Monday and if the results are the same or worse than the one done yesterday, we will need to start discussing our options.  If she does not progress neurologically, they will not proceed with the heart surgery that she needs to survive because this specific procedure can cause more pressure in her already injured brain, which would then worsen.  If they are not able to do surgery, the question is when and if they should take her off the ventilator and what to do if she cannot breathe independently without it.  If they take her off the ventilator to let her brain injury heal more over time, she would need a transplant.  Because if her neurological state, she would not qualify for a transplant.  I broke down feeling like I had just been punched in the gut over and over again.  At this point I was feeling helpless and hopeless.

 I'm not sure how to even put all of my deepest fears and feelings into words right now.  I am feeling so beaten down.  I don't feel like it is her time.  I don't feel like her journey is over.  I just want to look into her pretty brown eyes and see her again and hold her again.

Zoe has already proven time and time again that miracles are real and that she is capable of so much more than we know.  Only time will tell what God has in store for our little miracle.

  

Zoe Grace: So close.

The following are Facebook updates throughout the day...

Tuesday, August 21st @ 10:44pm
Okay... so I lied. I didnt go to bed early. But now I am rocking my sweet little Zoe and I'd trade this for sleep any day. Especially when I know I won't get to hold her like this... wire and tube free for who knows how long. I love her smell and those chubby cheeks. She is perfect.

Wednesday, August 22nd @ 5:22am
3 hours of sleep and now we're here waiting to be admitted. Its going to be a long day.

{In admitting, so happy for our baby to finally have a healthier heart}

{When our admitting nurse was getting the crib ready for transport, she made sure to have oxygen and a CPR bag.  One of the other nurses asked why she would need those items just to be transported to MRI and our nurse said that she has had complications in the past.  The other nurse asked if it was Zoe and then said "Oh yeah, I was in on the MRI when she coded."  Ugh... little did we know at the time that she was about to do it all over again.  That is the second random nurse that I have heard that from.  Apparently Zoe is well known around these parts} 

Wednesday, August 22nd @ 7:25am
We are now in the waiting room while Zoe is in MRI with sedation. It should be about 45 minutes until we will see her one more time before she is taken to the OR. Breathe in. Breathe out.

{Walking with Lily from transport to MRI}

{One last kiss} 

Wednesday, August 22nd @ 8:21am
Zoe coded during the MRI and was just rushed into the operating room. We just received word that she is stable with a sinus rhythm and Dr. King is doing an echo right now.

Wednesday, August 22nd @ 10:41am
Well the good news is that Zoe is still stable. But the echo showed that her heart function has diminished from the 3rd degree heart block that she had in the MRI. The bad news is that her surgery is being postponed until further notice. They have moved her to the ICU to let her heart rest and recover. When the surgeon tells you that they had to do CPR and "it was dodgy there for a while"... you know it's pretty bad.

{Our sweet lovey in room 520}

Wednesday, August 22nd @ 12:03pm
Thank you for all of your uplifting thoughts and prayers. Zoe looks so peaceful and calm right now. The oxygen support has improved her coloring already. Her sats are running in the high 70's to low 80's with 30% O2. She has been given Ativan to keep her lightly sedated while intubated and Milrinone to improve her heart function. She has been struggling so much these past few weeks that it makes sense for her to need a little "tune-up" before surgery. This sweet baby is constantly teaching me life lessons and with today's events, I hope to learn that good things come to those who wait.

It has been quite a day, to say the least.  After making sure Zoe was okay, I went home... took a 2 hour nap, spent a couple hours laughing and playing with Lulu and then headed back to the hospital.  I should be sitting here in the ICU with my sweet baby and her improved heart, but instead I am sitting here... wondering if the  last 14 hours were just a really bad dream.  Unfortunately, it was all very real.  

After looking back at this entire day, there is actually quite a bit of silver lining in this patch of fog.  It is very clear now that Zoe is extremely sensitive to anesthesia, having now reacted with heart block in the attempts of two MRI's.  They were able to get a central line and an arterial line, which are both extremely beneficial while her condition is more critical.  Those lines will make anesthesia much easier when they do go ahead with her heart surgery in the next few days.  Her O2 sats have been so low lately that it is possible that her body and especially her heart needed some rest before undergoing surgery and especially being on bypass.  Right now she is probably more comfortable than she has been in a long time.  Her body is getting some relief and this resting period can only improve her chances of a successful surgery and recovery.  Zoe is continuously reminding us that we are on "Zoe Time" and that she is running this show, whether we are prepared for it or not.  

As of right now, she did spike a fever of 102.5 this afternoon, which they think is probably an inflammatory response to the heart block.  They are doing a blood culture and a respiratory culture, just to keep their bases covered in case the fever is from some kind of infection.  Although it is very unlikely.  Both her blood gas and acidosis levels have normalized.  She is finally back to her baseline.  Our main concern is the damage to her already fragile brain and heart.  Talk of a possible brain bleed, decreased heart function and increased regurgitation of the common valve have been thrown out there.  At this point, we just have to wait until both organs are tested thoroughly before attempting surgery again.  

I spoke with Dr. King this evening and here is the plan: 

1. Keep her on Digoxin, Milrinone, Lasix, Ranitidine, Phenobarbital and Lovenox.  D/C Lisinopril until after surgery.  
2. CT and EEG tomorrow morning
3. Resume feeds tomorrow morning
4. Echo on Friday morning
5. Possible surgery on Friday or Saturday

Zoe Grace: Hope for a better tomorrow

Even though I want to get to bed early since 4am will be here all too soon (plus I need to get up at 1am to switch out Zoe's feed from formula to Pedialyte), I will not be able to sleep without blogging today's events.

Zoe and I headed to the hospital to meet with her surgeon Dr. Iguidbashian (aka Dr. John) and do all of her pre-op testing.  I wasn't sure how I was going to feel today but after speaking with Dr. John, I am feeling very positive and at peace with this next stage.  As opposed to the preference of our cardiologist, Dr. John is most comfortable doing the Glenn at 4 months, rather than 6 months.  He explained that by 4 months of age, most babies have grown out of their shunt that was placed in her first surgery and the significant decline that we are seeing in her condition is probably a result of that growth.  He also eased a lot of my concern when he said that this procedure will minimize the leakage from the common valve, if not repair it completely.  He was not overly worried about the condition of her common valve and said he has seen much worse.  If they do see that it has worsened significantly during the pre-op echo tomorrow, they might consider a valve repair, where they would add sutures to the leaking site.  Dr. John didn't feel that this would be an issue, but wanted to let me know it would be an option.  My favorite part of our visit was when he told me that the death rate of her first surgery was 10 times greater than the rate of the Bidirectional Glenn.  We made it through that, so this next one will be a breeze!  This procedure is shorter in length and much simpler as they will disconnect the shunt and redirect the SVC to the pulmonary artery.  This will allow her single ventricle to function more naturally and less blood will mix.

After our appointment, we met with our pre-admitting nurse Rebecca for a weight check and to go over tonight's meds and feeding schedule.  She informed me that we actually need to check in at 5:30am instead of 6am... yay?  We then went down to Diagnostics for a chest x-ray, EKG and labs.  The first two tests were quick and flawless, but the labs were painful... as usual.  It took 7 pokes and two IV Team nurses to get only 2.5 MLS out of little Miss Zoe.  That still wasn't enough, but no one wanted to put her through anymore, so they said they would get more blood tomorrow when they start her IV's.  The poor thing was so exhausted.  She has been passed out in her crib ever since we got home.  At least that gave me some time to spend with Lulu before the chaos begins.  She helped me pack her suitcase, we had dinner, watched a movie, played with her doll house and even spent some time out on her tire swing.  Gma and Gpa Milne came by at 7:30pm to pick her up.  Before she left, she wanted to say goodbye to Zoe.  We quietly went into Zoe's room, she gave her little sister a kiss and said "Bye Zoe!  Get better!"  I love that girl.  She prays all by herself now, and always says "Please help Zoe's heart to be healthy and strong."  It melts my heart every time.

Somehow... some way, I am eager and excited for tomorrow to come.  I truly feel that my prayers are being answered, because watching my baby struggle the way she has these past few weeks has been heartbreaking.  She has been working so hard to just get by and as a mother, I want so much more for her.  I want Zoe to know more than just pain and survival.  I want her to know the sweetness of life and to feel that joy that every baby is entitled to.  This next surgery is our ticket of hope.  Hope for moving forward.  Hope for potential and progress.  Hope for a future.

{taken yesterday while I was folding laundry.  I was so grateful to have a simple day at home with my two favorite girls, doing housework.  Who knew laundry could ever be a tender mercy.}

Daddy-Daughter Campout

Andrew had been planning to take Londyn camping this past weekend, but when we found out that Zoe's surgery was sooner than expected... he decided to stay home and spend the weekend together as a family.  Lucky for Lulu, Andrew brought camping to her in our own backyard. 

Setting up the tent.  

Londyn was determined to gather sticks and leaves to put inside the tent.  

In the center picture on the right, she is overlooking the fence into the great outdoors (aka the street)

Polish dogs and s'mores... it doesn't get much better than that!

Our favorite neighbor Bobby and his daughter Lucy came over to join in the campfire fun.  Lucy and Londyn have become besties this summer.  These girls are so cute together.

And the World's Greatest Dad award goes to...
THIS GUY!

Camping in the backyard has more perks than one.  Andrew ran power out to the tent, hooking up a fan for white noise and laptop to watch Rango on Netflix.  He slept on an air mattress and LJ slept on her bed mattress.  Now that's my kind of camping.

While the Mr. and little Miss were sleeping in the backyard, I got to snuggle this cute girl in my bed all night.

Handy Andy: Backyard Additions

Within the last few weeks, Andrew has put in hours and hours of hard work to make our backyard a fun place for our girls to enjoy.  We found some great deals on Craigslist for a play structure and a play house.  With a little TLC and Handy Andy's touch, we now have some awesome additions to the yard.  

Some days Londyn refers to this as the tree house and other days it's her park.  

The cousins came over to get in on the fun!

Andrew added the tire swing over the weekend and Lulu LOVES it!

The play house is my favorite.  In honor of Zoe, we have named it the Little Heart House. 

Todd and Dad came over and helped with the heavy lifting.  It's hard to believe that each side of this house is 300+ pounds.

Interior

(Later, we will add a loft to utilize the high ceilings)

The siding was completely shot, so Handy Andy (having never done siding before) fixed it up in no time.

Andrew has prepped the house for the Fall/Winter seasons and we plan to give it a complete makeover in the Spring!

We are inspired by these houses on Martha's Vineyard.  I can't wait to get started!

(Photos taken in 2008 when in Mass for our wedding reception)

Can I just say... I love this man.

Zoe Grace: He'll Carry You

He knows your heart

He knows your pain

He knows the strength it took just too simply breathe today 

He sees the tears that you cry

He knows your soul is aching to know why 

He hears your prayers each humble word

When you said you couldn’t face another day he understood 

He knows the path that you will find

Though you felt alone he’s never left your side

He knew there’d be moments when no earthly words

Could take away your sorrow 

And no human eyes could see what you’re going through 

When you’ve taken your last step and done all that you can do 

He will lift your heavy load and carry you

He’ll bring you peace and leave you hope

And in the darkest night he’ll comfort you 

Until you know the sun will rise and each new day

You will have the strength to live again

I love this song.  I believe it's words, that He knows her heart, He knows her pain and knows the strength it took just to simply breathe today.

Mommy loves you, Zoe Grace.

Zoe Grace: Shocked.

Zoe has been struggling so much these last couple of weeks with random fevers, low O2 saturations (high 50's to low 70's), zero energy, heavier and quicker than normal breathing and turning blue more often when she cries.  It has been WEEKS since we have seen anything close to a smile.  She sleeps all day and all night, only waking up in discomfort to to cough and cry.  

I called our pediatrician last Thursday because Zoe had yet another low grade fever.  She had been getting them so frequently, that I had to call.  Dr. Kao was not in the office, but Dr. Sweeney (who has seen Zoe before) wanted to see her as soon as possible to take a look.  After the exam, he didn't find anything terribly alarming... other than her low sats.  He sent us home and told us he would call Dr. King the next day to discuss possibilities.  He called back later the next day and said that Dr. King wanted us to keep checking her sats and not to change anything.  After a rough weekend, Dr. King's nurse called yesterday to see how the weekend went and how Zoe was doing.  I explained all of her symptoms and the nurse said that we would hear back from Dr. King.  

I got an alarming call this morning from the cardiology surgery scheduler, explaining that after much discussion with our pediatrician, Dr. King has decided that Zoe needs her next heart surgery sooner than later... next Wednesday, August 22nd. 

We will go in on Tuesday for a pre-op appointment to go over pre-admitting and meet with Dr. Iguidbashian, our amazing peds cardio surgeon.  On Wednesday, we will check in at 6am and she will be taken back for sedation at 7:30am.  They will do an MRI at 8:30am, review the scans and then take her to the OR for surgery.  

At 4 months old, our tiny little lovebug has endured open heart surgery, a sternal wound infection, stroke, seizures, gastrostomy tube, numerous pokes and medications and so much more.  We are in for another hospital adventure with the next surgery, and although we knew it was approaching... I was nowhere near prepared for it to be so soon.  

I am grateful that our medical team is mindful of Zoe's condition and would like to be better safe than sorry.  Initially, I was caught off guard with the news and went into complete panic mode.  But after some thought, I am relieved that she is finally getting the next surgery and have all the hope in the world that this will help her to live, rather than just survive this life.  Her body works so hard to just be, that she doesn't get to be a happy baby.  

Our only answer is surgery and more surgery. 

I don't know how prepared we are to do this all over again... not being able to hold her, watching the monitors and dreading the alarms, the tedious ICU stay, hoping and praying to move down to the 4th floor and all of the unexpected curves that get thrown at us.  But most of all... not having our family together and under the same roof.  I know we are all in God's hands and without him, we would not have gotten this far.  But it is going to be so difficult to have Zoe in such critical condition in the hospital, Londyn all over the place and Andrew juggling everything to get through this last term of school.  

We've done it before and we'll do it again.  

Zoe Grace: EEG Results

I received a call from Dr. Huffman (Neurologist) on Friday night, giving us the results from the EEG that was done last Monday.  She said there was good news and not so good news.  The good news is that the EEG showed no further seizure activity (phew!) and the not so good news is that the left side of her brain is slower than the right side.  She explained that this was to be expected as a result from her stroke, but only time will tell the long-term effects.  She will be talking to our cardiologist to coordinate an MRI to be done before she goes in for the Glenn surgery, so both procedures can share sedation.

Our latest tender mercy... having absolutely NO appointments for the next two weeks.  Until the 20th, we are footloose and fancy free!

Londyn Joy: Three, going on Thirteen

We have always known that Londyn is a little sassypants, but she has taken it to a whole new level since she turned 3.  

Last week, Lulu went to Aunt Nell's for a 3-day potty training intensive AKA Potty Boot Camp.  Sergeant Nell had to crack the whip a few times because Londyn was not going to give up that easily.  After several accidents within the first two days, she refused to sit on the potty and could care less about the potty treat insentive.  After a kicking and screaming meltdown on the third day, a switch turned on and she realized that accidents aren't cool.  Panties are the new diapers and ready or not, this WAS happening.  You can just see how much she enjoys being a big girl now.  More often than not, she goes potty all on her own without announcing it to the world.  The only time she wears a pull-up is at night, but has remained dry the last two nights.  I never thought this day would come, but knew it had to happen eventually because nobody graduates from high school in diapers.  Although until the Potty Training Guru (my sister) took Londyn under her wing, I thought she might be the first.  

LJ has also started dressing herself in all sorts of runway-ready combinations.  Whether she pulls pieces from her dress-up collection or her everyday wear, her ensemble is always unforgettable.

We are super lucky to have such fun cousins close by, who have organized two summer camps for kids as fundraisers for sports.  They have been doing 'Kids Camp" for the last few summers and they are always a hit.  I never imagined that my own child would be in attendance, but it has been such a lifesaver for me.  Lulu goes to camp and has such a blast, while I get errands run, naps taken when sleep deprived and one on one time spent snuggling my Zoe.  Lulu always comes home from camp with a huge smile on her face after a fun-filled day with friends and cousins.  

These camps have proven to me that Lulu is more than ready to start preschool in September.  She is so excited!  She also can't wait to start dance class again in the Fall.

Londyn has become quite the little water baby this Summer.  In past years, she has not been too fond of the water but she has really tackled her fears and spent lots of time in my brother's pool, a kiddie pool in our backyard and the fountains in Old Town Sherwood.  This last weekend, we went out on my dad's boat at Hagg lake and not only did Londyn go tubing with Andrew, she kicked around in the big waters with her life jacket on.  

And last but certainly not least, LJ has hit that cute stage where her imagination is constantly running on high. She makes up lots of games and stories.  I catch her playing who-knows-what by herself when outside in the backyard, playing with her barbies and babies and especially with her dollhouse.  In fact, tonight she came up to me with her purse all packed full of toys and "essentials" and said "I am ready to go to Christmas now."  I told her that she would need to wait for a few months.  She paused thoughtfully and said, "I am going to wait at the window for Christmas" and then walked off on her merry way.  

{4 Years}

July 24th was our 4-year anniversary and what did we do?  We spent the day at home with our girls... did laundry... took naps... Andrew worked on homework and then went to class at 8pm.  It was truly magical.  {Insert sarcasm here}

This last Thursday... all the stars aligned and we were able to celebrate our anniversary as just us two. Londyn was at Potty Boot Camp with Aunt Nell, so we dropped off Zoe at Gma Milne's and headed to our 2 O'clock appointment for a couples' massage.  Can we say A-MAZING?!  Our bodies have been through so much stress and tension lately, that massages were absolutely necessary.  Next time, we'll have to go for two hours instead of just one!  After our massages, we headed to an early dinner at Stanford's.  Our food was delish and the best part was that we were in our own little spot with no one else around... no kiddos, no distractions... just us and our yummy food.

With full bellies, we went shopping and snagged a chick flick at Redbox.  After picking up the kiddos and putting them to bed, we ended the night with a low budget, not so great acting movie.  I'm pretty proud of my husband for lasting all the way through the end.

We have been through more as a married couple in the last year than we have in our entire relationship. Ever since we found out about Zoe's condition, Andrew has been the only person that is going through exactly what I am going through.  Of course, men and women cope with heartache differently but ultimately, we have both fallen in love with the same little girl and experience the same heartache as she struggles.  I can't imagine going on this journey alone and am thankful for the strong eternal perspective that we have gained as our family has grown.

{At a wedding 2 weeks ago - always laughing}

{July 24, 2008 - the most romantic day of my life}

{Engagement photo - 4 years later and he still makes me weak in the knees}

{Mimi's Cafe: Our first date and two days before he proposed}