One Step at a Time...

Another great start to the day!  After completing our 3 scheduled pee breaks last night we woke up to complete a 4th that almost brought with it some stool.  I've never been so excited to experience someone else's pooping but I was cheering Liv on this morning :)  Unfortunately it was only the sensation and we didn't get any substance but that fact that she's having the sensation is huge!

We just completed another massive milestone in that we were able to complete our first lap around the halls.  This should help jumpstart those pesky narcotic blocked bowls into action.  We're realllllly pushing to get discharged tomorrow and getting our digestion back up and running is imperative.

Dr. Hilfiker just stopped in and really likes what she sees.  She's ordered the nurse to switch the NG tube to "gravity" rather than suction and if Liv does well with this over the next 4-6 hours we can get that NG out of here!  High hopes for sure and it's put us all in good spirits.  The coloring has commenced.....

I'll be heading out to get Jet to the first of two games for this weekends soccer tournament so hopefully we'll have an update with all the great progress later tonight!

Max

Raw & Real...

CAUTION:  The following is an expression of honesty from a mom who is doing all she can.  Offensive language and adult subject matter guaranteed.

It's been a long fucking day. This is day 7 of being contained in a small room, sleeping on the floor, and dealing with...well everything we are dealing with. I'm so grateful for all the good stuff; we have access to this exceptional level of care for our baby girl, our nurses are amazing, Jet is healthy and getting to maintain summer camp, we have so many people who love him/her/us, we have each other,  we have family here, we have family in MO, we have constant offers from friends to help, visitors, gifts for Liv.... the list goes on and really, we are SO blessed in so many ways.

But....

...today has been really tough. I cried ALOT today. Zero sleep makes me less tolerant of anything and everything, and I love our nurses I really do... at the end of the day I am so happy Liv has access to this incredible level of care but I really hate them coming in every 30 min!  Stop poking shit in my baby girl all night! ugh!  I'm going nuts on so little sleep.

She got her Epidural out....

I spent a solid hour carefully removing the tape around the tube in the way only a mommy can. They give you this stuff that helps remove the sticky glue but trust me, its a process and I wasn't about to watch her cry with someone else taking it all off so I did it solo.  It was sort of like ripping off the biggest band aid ever so it took forever just to keep her from crying. The Epidural came out in two seconds. Then 6 hours till her catheter came out. This she felt... and lets just say, she did not enjoy it.

It burned.  She screamed.  And really, there was no comfort for her.  I know she now feels better with it out but damn it if she didn't hate every second of the process.  Then her body started to get itchy (probably because we were off the Epidural and rolling the Morphine solo) and the nurses suggested a quick rinse down.  Welp, no surprise...  she also did not enjoy it and bawled her eyes out the whole time because now, with no epidural, she feels the pain from the surgery and her tummy hurt where that little sucker ball came out.   It was a total battle but one that needed to be fought.

She has been begging for food but until the nose tube thing is clear, they won't let her eat. With the catheter out she has to get up to pee but this is going to be painful (Which most likely means another long night ahead.  Our first alarm is set to go off in 2 1/2 hours at 1:00am) She stopped eating Monday and today is now Friday. I didn't know one little person could have so many tears in them and there is nothing worse than your baby hurting and not being able to do more for them.

I'm a strong woman, but today, I'm feeling really weak. Fuck Cancer.



Okay... I feel better now that I've got that out :)  Thanks for letting me vent!  And there really was so much good today so I don't want to end with me just ranting.  Liv felt well enough to open some of her gifts.  Her Uncle Micah and Aunt Brookie stoked her out with all kinds of art supplies which she LOVED.  We also got visits today from some of our most amazing friends.  My dear friend Amanda stopped by with her precious daughter, Brylie, who has been best friends with Liv for years.  They had the cutest conversations.  We also got a visit from our friends Danielle and Auntie Brandy who provided much needed distractions.  Brandy also dropped off some sweet art supplies and then doubled down with Mr. Frosty's bucks (Probably the quickest way into Blu's heart).

But one of the sweetest things we saw all day was Brandy's cousin, Eric, went to the Pirates game tonight and sent us this photo....

Our hearts just MELTED.  It's so absolutely amazing to know that people are cheering Liv Blu on from all over the world and it's just so humbling.  Thank you Eric, and thank all of you who still reach out and send your love.  You give us strength!

Love,

Carlie

Recovery | Day 2 is a Wrap!

While we may have started the wee hours of the day with a tube being shoved back down Liv's throat, we ended the day laughing with friends and celebrating the fact that Blu CRUSHED her goals for the day!

Bubbles were blown....

Chairs were gotten up to....

And gas was definitely passed!

We had a new day nurse this morning who brilliantly discovered the kryptonite to Liv's soar throat.... Cherry Throat Spray!  This proved to be just as important to her comfort level as any of the other drugs.  After her rough night, a thorough dowsing of the numbing throat spray, and a solid morning nap Blu woke up a new girl :)  She was the most responsive and talkative yet post-op.  Aside from being slightly high from the morphine she was the closest to "Liv" we've seen yet.  It was super exciting!

For the first time she felt well enough to open presents which,  next to eating chocolate anything, is probably her favorite pastime.

She got cards.....

She got a new stuffed kitten (which required immediate nuzzles)...

She also received something that she was really excited about!  (sorry I'm exhausted and don't have a clue what it was but she reallllly liked it LOL).....

She was even lucky enough to get a visit from Mila the therapy dog!

The good times eventually faded in concert with the shelf life of the morphine and eventually we were back to post-op Liv.  She rested once more in the afternoon and made another run at the Liv of old but didn't quite get there.  All the same we're THRILLED with her progress.  She took several steps when we got her out of bed and even crawled back into bed with minimal assistance.  To say she's confident in her own abilities to ensure a successful and pain-free transition to and from the bed is putting it mildly.  She has little faith that someone in scrubs isn't essentially an elf working for the Santa of Pain and as such she has decided that she'll be in charge of all future movements.

Once she was comfortably back in her bed and watching Netflix (hence the late update as my computer was the movie screen) we got a much welcomed visit from our friends Justin and Shelli who brought us equally welcomed Chipotle.  It was nice to sit and laugh and relax even for just a little while.  We also were able to help provide a revelation for Justin in that he is, in fact, turning 37 this year and not 36.... which he had been assuming for the entire year of 2016.  However we weren't successful in tracking down that lost year so if anyone has any information please contact Justin directly :)

Our little Rainbow Butt is sound asleep once again while both Carlie and I marvel at her unbelievable resilience and joyous disposition even in such trying circumstances.  We are truly blessed beyond measure on so many levels.

Good night!

Recovery | Day 2.... First Movement

Morning has brought with it a renewed sense of determination from Liv Blu.  I knew it was going to be a good day when she woke up and after I whispered, "I love you" she gave me a look with her sweet little eyes that simply said, "I love you too."  Who needs words :)

While mama caught up on some much needed sleep I met with our new nurse (who is AMAZING) to go over the day's plans and goals.  Today is all about movement.  We need to get her lungs moving as well as well her body.  The first thing to move however was the IV.  We finally hooked up the port and things are running smooth so we're one step closer to getting both arms completely freed up.  We also were able to get some numbing spray in her mouth/throat and that's been a huge help with the annoyance of the NG tube.  We're very close to being able to actually speak in more than a whisper now :)

The next goal was to get her body shifted in the bed (pictured above) so she can prepare for bigger movements later today.  Liv's typical response to anything related movement or adjustment is one of panic and her expression of that is hyperventilating and, "ow ow owwww!" but she powered through and we accomplished our first goal!  The next movement goal is a big one.  We'll need to get her out of the bed and sitting in a chair.  We're scheduled to make that attempt at 3:00pm today.  I have high hopes because as we were adjusting her in the bed earlier she complained that her little bottom was itchy (due to being in one position for the last 48 hours) and without any assistance she pushed her hips up in the air to adjust the towels and blankets beneath her as well as to implement a vigorous scratch to her butt in an attempt to relieve the itching.  Definitely a good sign considering the muscles involved to achieve the feat.

Nurse Rachael has also given Liv homework (an excellent choice of words in terms of motivation) to blow bubbles once her movie is over.  Liv was immediately inquisitive as to the reason why she had to blow bubbles.  Borrowing from King Julien I explained that her "booty" was itchy because she hasn't moved in two days and the same is true for her lungs so we need to get them moving.  The  explanation made sense and therefore the activity has been deemed acceptable.

Right now she has a very good "coverage area" from the epidural so the pain of the incision, adjacent muscles, and organs effected by the surgery is being blocked very well.  The trade off is that she'll need the catheter for at least another day until she regains control of her bladder.   She definitely wants to go home but she also understands that we need to show the doctors that we are ready to go so she's motivated to get these goals accomplished.

Looking forward to making more strides later today!

Recovery | Night #2.....

As yesterday started to come to a close, Carlie and I were feeling pretty good about things.  Sure the morning started off pretty rough for Liv but that's to be expected given all that she had been through.  By the afternoon and early evening Liv was communicating what she wanted or didn't want, feeding herself ice chips, and trying not to throw the laptop off of the bed when her movie was finished.  All in all a pretty smooth day and we were looking forward to, what had been up to that point, our normal schedule of "vitals" checks every 4-hours and a little time for some Netflix before falling asleep.

We were rudely awakened from that little day dream when the new night nurse came in to give us the schedule for the night (pictured above).  Turns out it's a good thing mama bear got a nap earlier in the day because we were in for a lonnnnnng night.  

The night nurse felt confident that even though there was a lot to get done, most of the items were simple meds through the IV and even then Liv's been sleeping through most of her vitals checks so we felt pretty good about sleeping through most of it ourselves.  This proved to be a challenge for Carlie as she was up at nearly every visit from the nurse.  The pinnacle of this insane night was when some time between the 3:00am and 4:00am scheduled stops something about Liv seemed different but the nurse couldn't quite put her finger on it.  

"Oh wait.... where's the tube in her nose?"

Apparently the discomfort and annoyance of the tube that had been inserted during surgery to keep her stomach clear became too much for subconscious Liv and she decided that the time had come to remove it.

F.

Carlie and I have our strengths and weaknesses and even before this experience we've been pretty good at compensating for each other.  She picks up where I can't go on and vice versa.  Watching her baby girl get a tube shoved down her nose and throat was, understandably, just a little too much to take so I worked with the chief nurse to calm Liv enough to reinsert a new tube.  I have to say, it was ridiculously quick and easy (for the nurse not Liv) to get the tube in place.  The lady is an absolute pro and thank god too because I knew we only had one shot at it or else Liv would channel the devil himself and literally tear the room apart if we didn't get it right the first time.

Luckily Liv was able to calm herself down fairly quickly and has been resting since.  The same wasn't as true for Carlie.  It has/had already been a really long night for her and the stress of knowing that Liv would have to endure the tube being inserted was just too much and she needed to take a moment for herself.  She's better now and asleep on the couch but keep pumping her full of love.... she's been an absolute rockstar throughout all of this :)

Recovery | Day 1...

We had a rough start to the morning as Blu woke up to a new reality.  One that included an exceptionally annoying tube in her nose complete with tape securing it to the side of her face.  Also, she was less than thrilled with the fact that receiving her port did not eliminate the IV in her left arm as promised by Daddy Max (my bad!).  "Discomfort" may be a generous word but she wasn't in overt pain.  She was certainly stressed about the potential for more pain so any attempt to touch or move her was greeted with intense panic however a visit from the "Pain Team" brought much needed sedation to calm the nerves.

It took a few hours for Blu to adjust to this new normal but we knew things were heading in the right direction when she whispered, "I want to watch Gumball.  It's on channel 57-23."  A combination of pain meds and Cartoon Network has allowed her to remain relatively calm for most of the day.  Her most recent breakthrough came when mom went to put coconut oil on her chapped little lips and Blu insisted that she be the one to apply it.  This new mobility has now progressed to exploring and scratching the annoying tape on her nose (pictured above), subconsciously outlining her incision, and now she's feeding herself ice chips.  I call that a bonafide success!

Carlie and I have started thinking about the road ahead and what seems to be the inevitable side effects of chemo therapy; hair loss.  We're being told it's a near certainty that she'll lose her gorgeous blond locks and in particular, those bangs she's been working so hard to grow out.  (Some of you will remember that her relationship with her bangs has been "tumultuous" at times LOL)  So we've been wondering... what can we do with this reality to make it more fun(?) or acceptable?  We've thought about looking for fun wigs.... I'll definitely be shaving my head in solidarity (be kind when I look like a drowned rat)... but we're wondering if anyone has any ideas?  We'd love to hear about them!

Finally, we continue to receive so much love and support.  Today several cards and gifts came into the hospital including an amazing bouquet of flowers from our good friends, Brian and Kristen.  Unfortunately, we just found out that we aren't allowed to have flowers in the room :-/  Just a heads up that if anyone was thinking of sending her flowers :)

Continued thanks and love for all of your thoughts, prayers, and cards!

One step closer to home...

Words cannot describe what it felt like to bring Liv Blu back to our room.  It has become our home away from home and, in some small way, it feels like she is back in our bed where she belongs.  She's been in and out of consciousness since leaving the recovery room.  When asked about how she's feeling, we were given the standard symbol of disapproval; thumbs down.  However she did nod in agreement that removing the Sucker Ball was easily a 3 or 4 thumbs up so we feel pretty solid about that review :) So far the major complaint has been a dry and sore throat from the tubes that were inserted during the surgery and there was a brief moment of vomiting but she immediately declared afterward, "I feel much better."  We've all been there :D

She's still in Drowsyville obviously and will be there for sometime.  I know she's super uncomfortable and will continue to be for the next several days but just knowing that we got that massive thing out of her safely makes it so much more bearable.  Discomfort with the knowledge that the Sucker Ball is gone is something I can handle.  The 6 hour surgery was another story!

Mom just laid down on the couch for some much needed rest and I can't seem to leave the chair next  to the bed.  Knowing that we just got through such an important milestone has me on a high you just can't buy.  I've said it before but I'll say it again, I didn't make this baby but damn it if I'm not madly in love with this baby.

I'll end with this... Carlie and I have been so overwhelmed by the generosity of our family and friends and even friends of friends whom we've never even met.  We felt ALL of the positive thoughts, energy, and prayers from you all and we are so grateful.... so, SO grateful for all of it  :)

Thank you!

Max