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One Hungry Baby

2/27/2012

9 Comments

 
One Hungry Baby
 
Zoë is one hungry infant.  She realized last night that she had not eaten in days.  This caused her to have a two hour crying/screaming fit.  Zoë, I believe woke up from surgery a little older and wiser.  It appears that she has learned that screaming will get her more attention than just whimpering and crying.  She is right of course.  But I figured we would have a wee bit longer before she used this plan of attack to get what she wants.
 
Although she is screaming she is not getting what she wants. Which is SO hard on this mommy. Zoë has resorted to sucking a bit of water off a sponge, sucking on my thumb or hand, sucking on air itself. All of which as you can imagine does not fill her stomach.
 
Late in the day yesterday her nurse said, “So how can we make her comfortable?”  We brainstormed for a bit, then I just said, “Well we can feed her.”  When we as adults are hungry no amount of pain meds, or laying one way or another will help the fact that we are hungry.  This is the same for Zoë only she cannot understand this hunger pain.
 
Overnight she did finally settle down.  It took much longer than I had hoped because we have yet another roommate.  They moved in around 10:00 PM, and although they were on the quite side, it did not matter how quiet they were Zoë flinched and woke to the slightest of noises.  It was not until they decided to go to bed themselves around 12:00 or so that Zoë drifted off into her deepest sleep of the night.
 
About 1:00 I was awake and just anxious because I felt like she was going to pop awake at any moment.  I was told by a nurse that I was, “acting like an ICU mom.”  I responded in an, “OH NO!”  Oh gosh how I do not want to be a hospital parent, one who is desensitized, and “OK” with seeing their child all hooked up to tubes, but I fear that in a way I am becoming that way.
 
My mother wrote an email to friends and family stating how she cannot help but tear up every time she looks at Zoë.  I am like that, but it is only deep down on the inside. I cannot tear up with her all the time. Instead it is my job to be happy for her, now even more than ever.  I cannot have her see me sad, or scared, or upset.  Because she is
all of those things and more.  She needs to see joy, and happiness on the faces of those around her, so she knows
she is doing well, and will feel better soon.
 
So, I smile at her.  All the time.  I sing to her, and I pet her head, and hold her hand, and let her know, “You are OK.” Because she will be that and more.
 
Once Zoë did get into a deep sleep, she really went into a deep sleep.  Early this morning the Pain Management Team returned and they put in an order, and acted immediately, to stop her continuous morphine drip.  Because Zoë is not in as much pain she is able to relax, and she relaxed enough to start having shallow breaths, and her eyes were becoming a bit pin pointed.  She is now on a Nurse Assisted button to help administer the morphine as she needs is. This is a huge step forward in her recovery.  [Side note: She was just looked at and her eyes are doing much better.  Less pin pointy.]
   
Now we will start to figure out her eating.  I am hoping that since breast milk is considered a clear, and gentle on her system that she is allowed to eat.  I was told that if Zoë has some major melt downs she may get what she wants.  So in a way I would not mind her melting down, but oh how much it will pain me if she does melt down, and still cannot get what she wants. I wonder how many parents want their kids to throw a temper tantrum.

 
Overnight we have been listening to her White Noise Album, set on Ocean.  I am starting to feel like we are seaside, I just need a fluffy pink drink, and a floppy hat.  I hope all the water noise is not making our roommate sea sick, hehehe.
 
Morning rounds are beginning.  Zoë will be wakening.  I ordered breakfast, and I hope that I am able to get some of it in me before she is fully up.  Yesterday I learned that I can peal a hard boiled egg with one hand.  I wonder if there is a Guinness Book World Record for how many eggs you can peal one handed in a minute.  Perhaps I should start practicing.
 
I hope you all have a wonderful day!
 
This post is brought to you today by the power of eggs. Mmmm… breakfast.
 
Love and Hugs!
9 Comments
Amy Dame
2/26/2012 09:46:26 pm

Laura, you are GREAT!! :)

Reply
Colleen Joubert (aka Mom/Memere)
2/26/2012 11:28:10 pm

Thinking of you every minute.

Reply
Becky
2/27/2012 12:51:40 am

You are so positive and already a great Mommy. Much love and light.

Reply
Heather Cardone
2/27/2012 02:08:09 am

You continue to amaze and astound me...Hopefully someday soon I will get to meet you.

Reply
Dena Mourtos
2/27/2012 02:34:02 am

Dear baby Zoe....

You are such a brave little girl! Hang in there and keep fighting. You almost look like you are in a cocoon .... You will heal and grown and immerge a beautiful butterfly.... My thoughts and prayers are with you nugget!!! All my love! Hang in there Laura..... we have you in our thoughts at PSC!!!!

Reply
Mary Ellen Winsor
2/27/2012 04:28:17 am

You are amazing!

Reply
Janice Rochefort
2/27/2012 06:28:50 am

Hope the roommates are quiet for you guys. They should have headphones for the TV's. Continue with your loving care...I'm sure it is SO hard for you to keep up with the smiles all the time. You're doing great and Zeppo too. Love you all.

Reply
Dawn-Marie Brown
2/27/2012 10:01:09 am

Laura you are doing an awesome job, you and Zeppo are the strongest parents I know, you have been thru a lot and for you to be so positive about Zoe's health is awesome. Zoe is definitely a fighter thank god for that....Hope Zoe gets some rest and you also...you are all in our thoughts and prayers.

Reply
Colleen Memere
2/27/2018 04:18:41 pm

This came up in my Facebook remembrances. Six years have passed. It’s still all so fresh. In hindsight we know that you didn’t have long in this world together ahead if you. Love to you my beautiful daughter. You are a wonderful mother.

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    Laura is Zoë's mommy.  Forever and Always.

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The Zoë Faye Foundation's mission is to provide support and assistance to children diagnosed with Malignant Rhabdoid Tumors, Atypical Teratoid Rhabdoid Tumors, and Non-CNS Extrarenal Rhabdoid Tumors, and their families; provide pathways to information, financial relief, and raise awareness for rare pediatric cancers, and funds for researchers who focus on Rhabdoid Tumors and related cancers with the hopes of achieving a cure.