8 Months Tomorrow (4.5 Months Corrected)

The Bumpy Ride Continues...

Some days are more difficult than others.  Some days it takes all we have not to be angry.  Some days all I want to do is curl up and pretend this is all a terrible mistake, that I am caught in someone else's nightmare.  Some days...

And then I hear Isabelle squeal or see Zoe smile and I know this is our life ~ and to be honest with you, I would not change it.  Who knows where we would be if anything were to change.

We are blessed.  We have four beautiful daughters.  Yes, Madison left us entirely too early and we miss her every day.  Yes,  Cecilia is still fighting in the hospital and we wish more than anything she could be home with us.  Yes, Isabelle and Zoe will always have to worry about their vision and other issues associated with their prematurity.

However, despite all the bumps in the road, we have four beautiful daughters.  Four wonderful human beings that were created with love.  Four little people who have taught us to be better people.  We are blessed.

Cecilia Hope

Miss Cecilia is still in the hospital, still in Rochester, still too far away from her family.  Day of life 242 and she has never set foot outside of the hospital.  She has never felt the sun on her face.  She has never had the wind ruffle her hair.  She has never met her puppy brother Gus.

But she has fought.  She has fought harder than most will ever have to fight in their entire life.  In 242 days Cecilia has faced fear and death and survived it with a smile on her face.  Despite all the negativity, she is growing into a happy, loving little girl.

She has a wonderful personality, constantly sharing smiles and coos with the nurses and doctors.  This morning when I called in we even had a conversation on the phone.  While it is heartbreaking to us to have to be so far away from her and miss seeing her smiles everyday, the days we do get to see her we are that much more in love with her.

We visited on Tuesday for a Care Conference and before we had a roundtable with another 10 people who think they know what it's like to be a NICU family (and none of them really know because thankfully they have never had a baby in the NICU), Cecilia gave both Adam and I smiles.  Her eyes filled with love and our hearts instantly melted.

I do not doubt that Madison spends most of her time watching Cecilia and protecting her when we cannot be there with her.
 

Cecilia weighed 4.40 kilos yesterday this is 9 pounds 11 ounces.  She is getting bigger every day.  Due to her stellar weight gain, Cecilia's feeds were altered to 80 % enteral (tube feeds) and 20 % TPN (IV Nutrition).  Additionally, Cecilia has been given permission to take bottles whenever she cues.  Her hourly amount is 24 cc (which is almost an ounce) and she has been taking around 4-5 bottles a day.

Cecilia will unfortunately also need glasses like her sisters.  Dr. Brodsky is very proactive when it comes to the girls' eyes, not wanting them to miss potential milestones because they could not see.  Cecilia will have the same frames that Zoe and Isabelle wear. 

Cecilia is still requiring some oxygen and the doctors are running a plethora of tests to determine where we go from here in regards to moving Cecilia off of the oxygen.

Overall, Cecilia is doing well and is ahead of where the doctors anticipate she should be.  Leave it to our little peanut to not follow the standard  :)

Isabelle Grace 

Isabelle is developing her own sense of self and it is delightful to watch.  She is so serious at times and then will give you the biggest smile she has.  She is also slightly impatient and having a difficult time not being able to get where she wants to go.  Just this morning she was having a fit because she had her elbow hitched out and therefore could not roll over to her belly.  I shouldn't have laughed but she was so funny to watch.

Not everything is fun and games for Miss Isabelle.  She has eczema.  A serious enough case that we needed to get some medicated cream for her.  Thankfully the cream is helping!!  I was so worried I had to bother my PA Sister Kristi and sent her photos asking what to do  : /  Thankfully, it was just eczema and the medicated cream is working.

Zoe Elizabeth

Oh Zoe.  Zoe is such a daddy's girl!!  There is no secret that Adam is her favorite ~ He comes home and she fights to see him.  It warms my heart that she is so in love with him.

Zoe has been doing wonderful learning to move about and gripping her toys.  She loves to kick still but has increased her play zone to the hanging toys above her.

Zoe's retina has been staying put!  We are so grateful to the surgeons and specialists for working so hard to save her vision.  She will always need glasses or contact lenses but she will (fingers crossed) be able to see.

Hope, Faith and Love

The past 18 months have been crazy for Adam and I, and for those that love us.  We have had to hope for the best, have faith that despite the horrible things would work out, and love for each other and others through all the fog.  We had a choice to make, a choice we continue to make each day:

We have chosen to be strengthened.  Even in our weakest moments, we choose strength.

With everything that has been going on in our lives, our friends and family (and our framily - to steal from sprint) have had some very exciting times of their own.  We have been blessed with new cousins, Jacob, Emelia, Talon, Seth, Tatum, Benny, Aiden, Trace, Austin and most recently, Sydney Ann.  Special angels in our life have been blessed with babies - Makenna, Jonah and Olive entered the world.  And we are currently awaiting on the arrival of Babies Kuen, Saks, Averill, Glasener and Beckfield.

Our lives have been blessed ~ Thank you for your continued love and support.  We love you.

Adam & daneille

Blessed

 

Cecilia Hope

Cecilia has had many changes since I last wrote.  The biggest change is that she is no longer in the NICU ~ before you get too excited, she is still in Rochester, just located on the Peds Floor now.

Our little peanut unfortunately aged herself out of the NICU and it is bittersweet - she is healthy enough to go out on the general floor but not healthy enough to come home.  The Peds Floor will provide her with the developmental therapies she needs in order to continue to thrive.  It is hard, though, because she is required to leave her NICU family - the doctors, fellows and nurses who have loved and cared for her since birth.  The adopted family who has cried by her bedside with us, who have watched us sit vigil next to her as we were forced to say good-bye not knowing if she would survive surgery, who have fallen in love with her...We desperately miss our NICU family.


Upon agreeing to the change of location for Cecilia, we were promised her NICU family could still visit her and love her.  However, the change was not and has not been easy.  Miss Patty volunteered to come in on her day off to train the Peds Nurse who would be taking Cecilia and this helped ease some of our (ok my) anxieties. Cecilia ended her stay in the NICU with Patty and Nicole, and no one can take their place.




Thankfully, Cecilia was joined on the Peds Floor by Dr. Ben who began his residency in the NICU on the day the girls were born.  He was a familiar voice on the phone and we knew he loved our daughter.  We have only had one horrible Peds nurse and she was quickly removed from Cecilia's care.  The doctors and nurses are charged with not only caring for Cecilia's medical issues but also, and arguably more importantly, her emotional development.  Cecilia means the world to us and we will not have anyone around her to views her as "just a patient" because she is so much more than that, she is Cecilia.

The transition to Peds has not been smooth from a medical standpoint.  Cecilia unfortunately was exposed to and contracted influenza A on Tuesday, January 28, 2014 - Needless to say we were not happy.  Poor Miss Cecilia was then placed in isolation to keep her from exposing others on the floor.  We had a very sick baby who did not get better right away, in fact she got much sicker.

On Saturday, February 8, at 3:30 a.m. Cecilia stopped breathing.  She was being rocked in a nurse's arms and could not get a breath.  She turned blue and as a result a Code was called on her.  We got the phone call at 4 a.m. and I think Zoe knew something was up because she had woken us up at 3:45 a.m. and could not be consoled.

Thankfully the doctors and nurses were able to revive Cecilia and after a weekend in the PICU (she couldn't go back to the NICU because she was in isolation for the flu - yes I tried) she was doing much better.  She went back to her room in Peds on Sunday night.  Finally on Wednesday she tested negative for the flu and had a second negative swap on Thursday meaning she could come out of isolation (standard procedure is to leave a child in isolation until they go home!!  but given Cecilia's long term stay status we were able to work out a protocol for her to be removed from isolation)!

Happy Valentine's Day!

We took a family trip to Rochester to spend Valentine's Day together so we could all see Cecilia and

Kisses from Iz

celebrate that our little fighter had survived yet another battle.  Cecilia and Isabelle shared a crib to take a short nap together!

We had a wonderful visit with Cecilia but it was bittersweet.  It is so nice to see her but it is horrible knowing we do not get to bring her home with us.  For each "first" the girls have, we do not really get to celebrate because the girls are usually not together and even if they are together we are in the hospital.  Next year the hope is to have all of the "firsts" to celebrate as a family ~ our first Christmas home together, our first Valentine's day home together, our first everything home together.  Can you tell we want to be home together?

Despite having to leave Cecilia in Rochester, we showered her with presents and know we are incredibly blessed that we were even able to have Valentine's Day together after her adventures the previous weekend.

Zoe & Isabelle

Iz wants to find Gus

Gus & Zoe

Our little dare devils!  The girls are starting to explore their surroundings ~ learning more about their bodies, discovering their hands and realizing that if they work at it they can start moving around the room.

Yes you read that right, we have scooters!!  Both girls have found they can roll over and move about if they try.

Over the weekend Miss Isabelle tried to find Gus ... under the bed!!

Gus loves "his" babies and is always checking on them.  Usually he is not too far away from them, however he has not yet allowed the girls to reach out to touch him yet...

Happy Due Date Madison

February 18 - Madison's due date.  She should have been turning 1 today.  We miss her every day and the fact that we were blessed with Cecilia, Isabelle and Zoe does not change the fact that our hearts are hurting over our loss.  Madison will always be our first born ~ she taught us to keep going, to find peace in heartache and to love without fear.  All traits we needed to get through the birth and fear of the girls.  Thank you Madison ~ thank you for making us better parents.  We love you, always have and always will.  You will never be forgotten.

Mary Poppins Needed

 

Adam and I started the process of looking for a nanny for the girls ~ not an easy task!!  We don't just want someone to be there, we want someone who will love the girls.  A sorority sister sat for them last week, first non-family member (blood or NICU), and it seemed to go well - I mean she said she'd like to do it again  : )  Thank you Anja!  Don't worry, we will definitely utilize you again!

She also introduced us to a friend of hers, who we fell in love with, and who will be watching the girls through May 1 when she'll move home to finalize items for her wedding.  Both Adam and I were a little sad she was only available to May 1, but hopefully we will find someone just as fabulous for afterwards.

Thank You

Thank you to those who have stood by us, those who have let us cry, those who have let us vent in frustration, those who have listened and those who have understand when we chose to stay silent.  We are incredibly blessed.

Yes we have struggled.  Yes we have been challenged.  But it those challenges that mold us - how we pick ourselves up and keep going - that make us who we are.  No, life is not easy.  No, life is not fair.  We have been challenged, but we will not be beaten.

Thank you to everyone who takes the time to say an extra pray for us, to go out of their way to help us - by either sending food or gifts for the girls, for a phone call, text or email, by helping out another person who seems to keep a hand - We may not have said thank you directly to you, but please know, your kindness has been felt and has meant more than we are able to say. 

Thank you for your love ~

Adam, daneille
Madison, Cecilia, Isabelle, Zoe
& GUS