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Somewhere Over the Rainbow

2/27/2012

4 Comments

 
Snap Shots of the past few days that I will never forget (in no particular order):

Looking up and seeing my Boss just “pop in” the day of Zoë’s surgery to let me know that everyone is sending along prayers and good thoughts.

The big grin on Dr. Lee’s face when he told me that Zoë’s right ureter was reconnected to itself.

Finding out that Dr. Shamburger called 6 East to check up on Zoë the day after surgery, even though he was off site preforming another surgery.

The big smile that Dr. Hong had for Zoë as he watched her sleeping.

Blondine’s laughter when she got to see Zoë, and her hushing and praying for her when she was crying.

“Hanging out” with my brother, and him being a great distraction during the surgery.

Dr. Shamburger telling us her appendix was removed, and how it makes her more like me.

Watching my brother pet Zoë’s head while she slept, and not leaving her side for over two hours.

My mother holding Zoë’s hand while she slept, and humming to her.

All the late nights that Zeppo stayed late so I could get some rest before I was to be up again with Zoë.

The first time I got to feed her after nearly 5 days, and how happy she was to be on my lap.

Zoë getting a stuffed Piglet from a Nurse who said, "Zoë has to have it."  I question if Zoë really NEEDS a Piglet, or if the Nurse just NEEDED to give her one.  *smiles*

Sitting on my pull out bed watching her heart rate and breathing numbers on the monitors for hours.

Seeing her sucking on her two fingers for the first time. (Hoping that she won’t make a habit out of it), and wondering if she will be a Lefty since she seems to be left dominate at the moment.

Listening to Zeppo read the BFG to Zoë in the PICU.

Having a pair of musicians come and sing lullabies to Zoë, and how attentive she was.

Having Dr. Seefelder tell me that it was “embarrassing” that he was unable to get all of Zoë’s lines placed with out
poking her so many times, because he should be better than that, as it is his job.  Even though it was Dr.  Seefelder’s talent that allowed her to come off of the breathing tube after a 14 hour surgery.

Listening to Dr. Hong, and Dr. Diller tell us about what was happening as the surgery was taking place. 
 
Having a beautiful conversation about faith and belief with a lovely Nurse who has such a big heart, and amazing
belief.

Getting a hug from a Nurse who was so happy to see me that she hugged me, even though nurses are supposed to be more objective.  *smiles*

Listening to Israel Kamakawiwo’ole sing Somewhere Over the Rainbow over and over and over again…because I have my own room with Zoë and I can.

Tonight:

Tonight is an amazing night. Zoë’s stomach is no longer being suctioned, and the tube has been removed.  She was also able to nurse.  She slept most of the day.  She is feeling a lot less pain, but is defiantly acting for the first time more like someone who just had major surgery.  None of the nurses, or doctors are worried about all of the sleep.  They are happy that she is resting and repairing herself, and is not agitated.

For me, it is SO hard to not be anxious about her not acting like herself.  On one hand I know that her resting is the best thing for her, but on the other hand it is so hard to see her so sleepy, and not awake and smiling. So I am trying my best to use this quiet time to get some rest and relax, and not be anxious.

Now that I have a room for just her and me it is much easier to go about my daily routine, with the mommy things I have to do that require privacy, as well as just the personal stuff, like showering.  I also am alleviated of fears that Zoë will catch germs from a roommate (the last of which had a nasty phlegmy cough that made me cringe and wash my hands every 5 minutes).  I also don’t have to worry about Zoë waking up and screaming any more.  If she chooses to melt down at two in the morning I can now put on some music and sing her back to sleep.

So here we are at the end of a great day.  Zoë is doing what she needs to, to get better, and I am doing what I need to, to feel better.  During my super extra hot, and ridiculously long shower I could not help but think that my life is truly blessed.  I have a beautiful daughter, a husband who is taking care of everything outside of our hospital world, and I have amazing support from my boss, and coworkers to allow me the time I need to care for my baby.

I don’t know how people do what I am doing without that support.  So for all of you out there tonight reading this.  Thank you!  I am only doing as well as I am because you are my awesome support.  
 
Tomorrow we will be one day closer to Zoë feeling better, and getting better.

Until then…

This post is brought to you by Mr. Kamakawiwo’ole.  

Love and Hugs!

Well like all things just as I was about to post this Zoë woke up screaming.  It appears that she is a bit backed up….so we are hoping for windy old man farts, and big poops tonight.  Zeppo is doing a bit of Reiki and massage, and I was doing the hand on belly and gently shaking to stimulate movement, while the nurse is infusing valium to help relax the bowel.  Hopefully something will work….

Seems like it may be a long night tonight…

Surgery just informed us that she will be getting her stomach tube back...boo...  Some steps forward, and some steps back.  Do si do, and here we go!
4 Comments
Colleen Joubert (aka Mom/Memere)
2/27/2012 09:22:57 pm

If Zoë is half as beautiful as you, she will be gorgeous.

Reply
louann broadmeadow link
2/28/2012 09:08:16 am

Thank you for sharing Mr. K's rendition of Somewhere over the rainbow, so beautiful! Glad you and the Zoe have your own room now you can both relax. Here's to praying for a major fart and poop session for mi nieta.

Reply
Bill from woodbine
2/28/2012 10:33:20 am

What a wonderful article above, There is no love like a mothers love and it shows! Not taking anything away from Zeppo, but I believe what I just said. You have been an inspiration to people who read this, encouraging for other mothers who are or may be in such a difficult situation and handle it as well as you. God is good, prayers still going up.

Reply
Darlene Dame link
2/28/2012 09:56:09 pm

Praising God that you all can have a bit of your "own-space" again. Praying that Little-Warrior, Zoe can keep battling the fight and that you all will be sustained & have strength for each day. Our love and prayers are with each of you!

Reply



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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.