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