So from where I last left off I fell asleep thinking that Zoë would have the tube replaced to suction her stomach. 
She did not have to have that done.  After getting 3 suppositories she finally let go of all of her gases and evacuated enough to feel comfortable.  
 
Yesterday morning she was up early and had a rather “normal” day.  Eating, sleeping (a THREE hour nap! For both her and me!), and pooping.  
 
The parade of doctors:

Urology: Dr. Lee clamped Zoë’s Left Nephrostomy Tube yesterday morning!  She is now collecting only in her catheter.  Thursday will be a BIG day for Zoë.  She has a test (hopefully in the morning), to determine how well her kidneys are functioning.  They will put dye into her kidneys via the nephrostomy tubes, and as long as the dye shows up in her bladder (or the catheter) she will have her nephrostomy tubes out!!  Oh how I cannot wait for that test!  Her catheter is soon to follow on Friday, unless Oncology sees a reason to keep it during her chemo treatments.

Surgery: Dr. Shamberger came by and loving peered at her while she was sleeping.  He is very happy with her recovery, and was very pleased that she did not have the decompression tube replaced to suck her stomach.  He felt as though her digestion issues would start to wane as she eats more.  
 
Dr. Shamberger’s visit from today: He is still impressed with Zoë.  He played with one of her toys, and thought it was exciting. *smiles* He asked about how well she is eating, and pooping.  I told him that I never thought I would be so excited about poop. The doctor responded that surgeons have some bazaar interests, and what  is not discussed in pleasant society is a topic of fascination for him.  That flatulence can be an exciting topic. *smiles*  He also remarked that it will be a Big Day for Zoë to get her nephrostomy tubes out, and he hopes that the dye test goes well.  Dr. Hong, and Dr. Diller will be meeting (or discussing) with Dr. Shamberger, and Dr. Lee Zoë’s plan for chemo today.  So we may know more about when that will happen soon.

Gosh do I just love Dr. Shamberger.  I am so very happy that he is Zoë’s surgeon.  If anyone in my family ever needed a surgery I would talk to him first.

Oncology: Dr. Hong informed me that her next round of chemo will be given to Zoë at 75%.  This round is very strong, and he is worried that it could slow down Zoë’s healing process from the surgery.  He does not want to risk her right ureter either.  So he is being cautious.  It is still more chemo than she got the last time (as she got it at 50% before).  I anticipate that her blood levels will drop off quite a bit this time around.

Side Note: Speaking of blood.  Did I mention that Zoë had 1 ½ times her blood volume replaced during surgery?  So right now the majority of blood in her system is someone else’s (or many peoples).  So thank you to all
of those blood donors!  I even if you donate locally and not directly to Zoë you are AWESOME!  
 
Pain Management: Dr.____ gosh I keep forgetting his name.  Let’s just call him Dr. Feel Good.  I told him that I requested to the  nurses that they use the morphine as little as possible (because it slows the  gut functions, and we don’t want her constipated again).  Instead I asked the nurses to use the Valium and Ativan on a regular basis, and hopefully in the next few days work to get her off of the Valium, then the Ativan as well. Although I am not sure for how long, as she will probably be right back on the Ativan as soon as she gets the chemo. 
 
Well Dr. Feel Good was impressed with my requests, and my perception of her pain, and told me my “plan” was exactly what he was going to enact.  So look at that.  I could be a Dr. Feel Good myself.  *smiles*

Nutrition: Has yet to hound me.  Although I am sure they will be trying to stuff food into Zoë as soon as she gets a feeding tube.  It seems as though that may happen today or tomorrow.  I already discussed my hopes for her
nutrition plan, and the woman from nutrition is on board with my thoughts. Operation Plump Zoë Up will have its ups and downs I am sure, but overall I hope that she has more room now in her abdomen to fit the food, causing less
distress.

Lactation: Why not get a visit from them as well.  I will be asking if there is anything I can do to insure Zoë gets as much nutrition as she can get from me.

Social Work: I have not been harassed!  It is a miracle.  I have a feeling the Social Worker from the PICU (who is Awesome) spoke with the head of Social Work from Dana Farber to see what can be done to call off the Social Worker.  I feel so bad that our personalities do not mesh well, but I am not in a position where I have enough time for pleasantries, and sugar coating, and the little sugar coating that I do have is wearing off.  If I find I need help with anything I will go up and speak with the Social Worker from the PICU again, and go from there.

Spiritual Guidance:  I don’t think that I have mentioned much about the Chaplain’s here at CHB.  For most of you, you may know that my religious background was Baptist, but over many, many years I have evolved and explored, and still evolving (faster now probably than ever before).  I was first contacted by Reverend Mary who was wonderful at asking simple non-intrusive questions, and shortly after introduced me to Rabbi Susan who is amazing. (Period)

I have been engaged in many engaging conversations with Rabbi Susan, and I hope one of these days to get the chance to meditate with her (as meditation is one of her practices). 

Yesterday our conversation wandered all over the place as it tends to, but my favorite part of the conversation was discussing how important it is to keep your mind wide open.  How it is better to be like a child who is curious and asks questions, and who has the ability to absorb new ideas, than to be steadfast and know everything.  I am curious by nature, I am constantly asking questions, and trying to know more. Mostly because I know I don’t know everything.  I am afraid of the person who says they know everything about something.  I once ended a date with a guy before the date really started because he told me he knew, “everything there is to know about Photoshop”.  I was immediately turned off.  How can you know everything there is to know?  I rather be with the person who says they know a lot, but are learning more every day. (And hey look at that, I am. *smiles*)

The idea of finality is frightening to me.  Once you do know everything…well then what?  I would be completely board if I knew everything.  
 
Speaking of not knowing everything.  Here is a question I asked yesterday.  What is creatinine?  Zoë has had several tests to check her creatinine levels, and I was just curious as to what it is.  Zoë’s nurse of the day was stumped.  She remarked about how she knows if a level is too high, or too low, but not exactly what it was.

So I looked it up:

Creatinine (not to be confused with creatine) is a break-down product of creatine phosphate in muscle, and is usually produced at a fairly constant rate by the body (depending on muscle mass).  Creatinine is chiefly filtered out of the blood by the kidneys.  If the filtering of the kidney is deficient, creatinine blood levels rise.  Therefore, creatinine levels in blood and urine may be used to calculate the creatinine clearance (CrCl), which reflects the glomerular filtration rate. 
  
Or in simple terms: It is a way of knowing if the kidneys are filtering properly.

Which now makes total sense as to why these tests are being done on Zoë with all of her kidney related stuff going
on.

Ah, yet again I am reminded just how much I love biology.

Well I started writing this post sometime early this morning, and Zoë is just now sleeping. We are waiting for an audiologist to arrive to check her hearing. (Some chemo drugs can affect hearing so we check her before and after some treatments).  They do these tests while she is sleeping.  So ssssshhhhhhhhh…… I hope she gets here soon!

Our day has been quite, and I hope for an equally as quiet night.

This post is brought to you by the power of questions.  The more you ask, the
more you know.


Love and Hugs!

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!

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!

Dawn
 
It is a new dawn and the sun is shining.  Outside our window I have a view of a rather ugly building, and a patch of perfectly blue sky with puffy white clouds.  When I was working with my father one summer he told me that as a kid he called these clouds, “big puffers”.  Ever since then I think of them as big puffers.  *smiles*
 
Our day started early, with Zoë waking up at 4 in the morning.  She was uncomfortable and we found out why shortly when she had a big poop.  I promise I will not talk about her poops… much… but this poop is a big deal. 
It was the first one post-surgery which means that her bowels are functioning. Once she was changed up she calmed down.
  
This afternoon her dressing on her epidural failed. So it had to be removed to insure that she did not get an infection.  It is quite a setback to have lost this line because now she can feel her abdomen and legs. Her Pain
Management Team was hoping that she would have this line for about five days.  So instead she is now on
morphine (a drip, and a nurse assisted push).  She is pretty much OK, but there are times when she is moved and she screams out in pain. 
   
Zoë is being very much herself, and has refused to nap most of the day.  At one point she was on the epidural, Tylenol, Valium, Ativan, and anti-itch meds, and she was still awake!
 
So Zoë is down a few lines, the Arterial line is out, and she has an IV in one foot that is failing, so that should be removed soon. She will also have the tube that was is in her nose removed soon, because she does not need her stomach drained anymore.  We are just waiting for the go ahead from the surgery team who is in charge of her at the moment.
 
High Noon
 
I managed to go for a walk just after I ate lunch and I got to graffiti Zoë’s name on a steel beam that will be going into the new addition here at Children’s.  *Smiles*
 
Dusk
 
The big news of the day is that Zoë has been moved out of the ICU!!  So we are back on 6 East.  Our home away from home.  All of the nurses are so very excited that we are back.  I am excited to be back.
 
At the moment she is doing her best to try to fall asleep, but we are sharing a room, and I think she is not used to the noise of a TV.  During all of Zoë time in the hospital to include even the short stay when she was born we have had the TV on three times.  Two football games, and the Super Bowl.  So needless to say the television is not a common noise for Zoë.
 
It is also a huge annoyance for me.  I have no desire to watch television.  My spare time I spend writing, or working on Zoë’s website. I upload pictures, read, or listen to music, and just have some quite time.  Now I am doing my best to block out the noise of loud stupid television shows, and even louder and more annoying commercials. Zeppo and I got rid of our cable, since we are not really there to watch anyway, and I have to say 2 weeks at home without TV was not bad at all either.
 
Zoë is having a very difficult night.  She wants nothing more to settle down and sleep, however she is awakened by belly pain.  Mostly caused by what we think are gas pains.  An x-ray was taken around 9:30 and hopefully we will know more sooner. Zoë is back on suction…boo (good thing they did not pull the tube out of her nose).  The drain in her incision was also blocked a bit, and was cleaned. Once doing that a LOT of fluid has come out of her abdomen.  The IV in her right foot was also removed.  So she is down to just one IV now in her left foot.  She is laying in bed looking up at a “Get Well Soon” balloon that her birthday twin Sarah sent her, (Thank you Sarah!). Zeppo is leaning over her to try to get her to sleep….or keep her awake by making popping noises with his mouth, and taking pictures of her with his loud camera.
 
Tonight will be a very LONG night.  Her incision dressing needs to be changed due to leakage, so that will surely get her screaming.  
   
I told her nurse tonight that the only reason why she is having issues is because she left ICU.  She wanted to be the center of attention on the 6th floor. Poor nurses probably thought they were going to have an easy night tonight too with Zoë since she normally sleeps through the night.
 
I am off to lay down I hope for at least a half an hour before dressing change happens…
 
Love and Hugs from CHB!
 
P.S. Dressing change accomplished… before I got to lay down…  I have the feeling this very long day will only get longer, and longer...

Here is the grafiti. 

Around 2:00 PM (EST)
Zoë is resting... I use that term loosely.  She has a rash on her face that is pissing her off. As well as a bit
of a fever. We have to hold down her left arm because she keeps rubbing her rashy face.

Around 4:00 PM (EST)
Wrapped up tight so she cannot reach her face.

Around 7:30 PM (EST)
Snug.

And finally a recap of the day:
So Zoe's fever has broken.  She is resting and comfy too now that she has some anti itch meds running constantly.  
  
So when she first was up in the ICU she was not nearly as puffed up as we expected.  From head to toe she had, a tube to drain her stomach in her nose, an IV in each hand, her broviac, the two nephrostomy tubes a drain in the
incision to drain her abdomen, a catheter, an arterial li...ne and an IV in her right foot, and an IV in her left foot. So needless to say nearly more bionic than baby.

The IV's in her hands were removed late last night, which allowed her to bang and rub at her  face.  But also allowed her to be a little more comfortable.  So much infact that she let me sleep today!  Hence my late in the day update.

So what else is going on?  Not much.  The constant ebb and flow of doctors in and out.  Some nurses peeking in from her first stay on the ICU floor.  She has quite the fan club here.  *smiles*

I was able to go visiting the 6th floor today to let everyone there know just how well Zoe is doing, and how we cannot wait to be back on the 6th floor again.  For now she will stay in ICU for tonight, but may move to either the 10th floor (surgery/urology) or back to the 6th tomorrow or the day after as long as she keeps up the good work that she is doing.
  
Zoe is still fighting with the nurses, and will not keep the leg cuffs on (designed to protect her from pulling out the arterial line and IVs).  She is also very alert when awake, and looks around and watches everything.
  
All in all it was a great day.  Now to have a great night.

Love and Hugs from CHB PICU!

P.S. So much more to write but I am going to pass out again.  Much more tomorrow.  *smiles*

Late Last Night...

Just met with Dr. Lee Zoë's amazing Urology Surgeon. He was able to reconnect Zoë's right ureter to her bladder! So she has two kidneys, two ureters, and one bladder! The right ureter has a stint in it, and it will be watched for several weeks.

Even Later Last Night...

Zoë is up in the ICU. She is awake and alert. Looking around and is watching her doctors and nurses. We are
still waiting to see her.

The surgeon was unable to remove the tumor 100% due to it being connected to veins and her colon in such a manner that made it hard for even the best of the best to get it all.

In other news she is now short one appendix, just like her mommy. Dr. Shamberger joked that she is more like me every day. Always good to have a doctor joke after such a long day.

And Later...

And Even LATER...

Zoë is fighting away. Writhing around and kicking even with an epidural and vallum. My long day is coming to a
close. Nurse Julie will be watching over her all night. I cannot wait for Zoë to feel a bit better so I can cuddle with her.

Off to Dreamlandia I go... I hope Zoë will follow me there.

Goodnight!

So Much Later that it is Today...

Zoë was back up around four this morning. She was not herself so she was given tylenol. The pain team is looking
into something to help with possible itching caused by the epidural.
  
She is calm now. I hope she is back to sleep soon.

Up again at 6:30... urology was poking around and agitated her... Awesome Nurse Julie has her nearly out again.

Around 8:00AM

Back to sleep after being held by mommy.

The mass is out!!!!!!

Now the replumbing begins...

Just got the best news of the day! They are proceeding with the excision of the tumor.  They have been working
for the last hour at getting the tumor out!!

Zoë is now in the OR.  She is being prepped for anesthesia.  (8:00 AM Eastern Standard Time)

Zoë is under anestesia right now, and they are getting ready to make the incision.  She has all her tubes and lines placed, and is doing well.

The incision has just been made. It will be one more hour before we know much more. (11:41 AM Eastern Standard Time)

We are down in pre-op with a very hungry and mad Zoë. Doctors should be by in a half hour.

Unhappy Zoë getting ready for battle.

So hungry. Mmmmmmmm.... shirt.