Excerpts from my mama heart

I haven't done this in a while.  A long while. And, really, it's a shame, because the bigger that the kids get, the faster I am forgetting these moments.  The ones that make me want to freeze time.

John is out of town.  He left on Sunday and gets back Saturday.  Today is Wednesday.  Gracie was already sick when he left and Gavin has gotten sick since.  This morning, Preston woke up early and found me cuddling up with Gracie in her room.  He joined us.  We hung out talking with Gracie smiling between us.  She LOVED being the meat in our little cuddle sandwich.  He seemed so old, yet so young and sweet all at the same time - - glimpses into the future and the past all at once.  When I got up to start getting things ready for them both to leave for school, he stayed with his sister.  Her TV was on and he was watching with no sound, reading the captions.  I came back in about ten minutes later (unbeknownst to either of them) to give Gracie her morning dose of Lasix and I could hear him talking to her.  He was half talking and one-handed signing to her while rubbing her back, telling her he loves her, that he hopes she has a good day at school and that he and that he really likes her new room.  Needless to say, I left quietly not wanting to disturb the sweet exchange and to compose myself.  I am incredibly proud of the brother he is to his sister.  I refrained from grabbing my camera... instead, jotting down here, and keeping mental picture that I will remember always.

Preston - Eight

Eight is Great!!!

Dear Preston,

Happy 8th birthday to you, my big boy!  You will always be our first baby boy... our Bubba and Bubby... no matter how big you get.  But today, I can't fight the fact that you, while still a little boy, have suddenly landed into a bigger boy category.  It is so fun to watch you grow, yet so hard to come to terms with how fast it happens.

You are full of energy, smart, compassionate, stubborn, kind hearted, joyful, athletic, quick witted (and a little... sometimes a lot... quick tempered!).  You are a loyal friend... sometimes to a fault.  You stand up for others, even when it means getting yourself into trouble.  You never miss an opportunity to make others laugh... that's been true since before you could speak!  You find such joy in that.  Again, though, you'll do it even at the cost of getting yourself into a bit of trouble if the timing isn't quite right!  And, while you're a goofball to the core, you most definitely have a serious side.  You love reading and escaping into a good book... so much so that sometimes you come out of your room and can't believe how much time has passed. You are inquisitive, love learning new things, and, at the same time, you are a perfectionist and hate making mistakes (ugh... we really are working hard on this and have been for years).  There is never a dull moment with you around! 

You love your family and make it known all the time.  Your heart is so big, so kind and so generous. You are such a good brother to Gracie and Gavin... and even though he drives you nuts sometimes, you love Gavin to pieces.   You wished for him forever and you love that he looks up to you and wants to do everything you do. You guys fight (like you're supposed to), but are truly pals and, considering the age difference, really play well together. Your soul is intricately tied to Gracie, though, as it was just the two of you for such a long time.  She is extra special to you and you feel a deep loyalty toward her and the need to protect her.  You guys still have the same unspoken communication that leaves me breathless... you love looking into her eyes...  and you will giggle at each other without ever having signed a word - - the same as you did as a baby.

You are obsessed with baseball... both playing and watching.  I love sharing our passion for the San Francisco Giants.  But your love of sports doesn't stop with baseball.  You love it all and would spend all day outside playing anything - - as long as you are playing.  You love going to the ranch with Daddy and pretty much ask to go there every weekend, which Daddy loves, too, and I think the fact that you share that with him makes both of you love it there even more.  Every day I am thankful for the little park across the street from our house... it gives you a social life right outside our door - - a place where you can ride your bike, scooter, skateboard, roller blade, play all kinds of ball with whomever is out there to play.  (Ok... and sometimes I can't stand that you can see kids there when I can't take you out!  Thankfully, you are getting old enough that sometimes I will let you play out there as long as I can see you from the front door!)  You are also already girl crazy... in a really sweet way, but I am SO NOT ready for you to care about girls.  Let's hope there is another "girls are gross" stage in the near future!

Daddy and I are beyond blessed to be your parents... it is a great gift (albeit sometimes challenging!!) to be your parents.   It's hard to believe that so much spitfire, smarts and goofiness can be rolled into one little good-hearted boy we are lucky enough to call our son!  We love you so much, Bubba, and can't wait to watch you grow and change (but not too fast!) over this next year. 

"You know what, Bubba?"
"You love me."
"I DO love you.  You know what else?
"I'm special."
"You ARE special.  You know what else, Bubba?"
"I'm important."
"Yes, you are so important to me."

I hope you always carry that knowledge with you wherever you go.
All my heart,

Mommy

Love and Loathe

This photo... while a simple x-ray to you, speaks volumes to me. 
It is an image I both love and loathe.
It is Gracie's spine and was taken on March 19th, 2015.

I love it because it is possible. 
Five years ago (and all the years before that), no one would have believed that this x-ray of Gracie's spine (and more) would be possible.  Five years ago, she was clinging to life, battling four rounds of septic shock in a matter of five months.  Five years ago, the doctors told us (more than once) to prepare for the worst.  That her little body couldn't take much more.  Five years ago, I sat at Gracie's bedside and though I begged her to fight, I also gave her permission to stop.  Actually, if I am being totally honest, I also begged her to stop because it felt so selfish to beg her to fight.  I prayed (though I don't really know to who or how) to let her rest, to take her if that meant that the constant pain, sickness and suffering would go away.  If you don't understand how I could think that about my own child, I don't really care.  You haven't walked in my shoes and you sure as heck haven't walked in hers.  Until your child has coded (on multiple occasions over several years), until you've left the room to simply go to the bathroom and come back to find a crash cart and eleven people working on her, until you've been told to expect the worst time and time again, until you've read and signed DNR paperwork, you can't possibly understand where we were five years ago... or nine years ago... or nearly twelve years ago.  But, that's another post on its own... back to why I love this image.  I love it because it is possible. 

I love it because it shows, in all her glory, how bionic Gracie is. 
She is totally bionic (and she'll be more bionic soon).  Don't be jealous that you're not bionic... she earned this multi-million dollar, one of a kind body.  She fought harder than anyone I know to keep that bionic body.  But in this image, you can see evidence of battle wounds, equipment, hardware... the whole shebang is there, not covered by anything.  The only thing you can't see here are the dozens of scars... and the scars are a lot harder to look at than her x-ray image... the inside is just cool and super bionic.  My daughter is badass. 

I love it because it shows her perfect little child-sized muffin top.
Gracie has fought hard for every pound and every inch of growth her entire life.  I have counted every calorie and every milliliter of hydration that has entered her body since the day she was born.   Just two and a half years ago she was 29 pounds.  Today, she is a healthy 52+ pounds (and counting).  She is growing and gaining and that is nothing short of a miracle.  The amount of tears shed over her feeding issues could solve the drought in California... the number of times she begged (and still does) not to eat, the GI issues, the central nervous system issues, the autonomic issues... the list is long and dense.  Those little rolls of chub are a medal - - a badge of honor.  And they are an insurance policy... they represent the extra weight she needs to be able to put up her next big fight.  And that, I am sad to say, brings me to all the reasons I loathe this image.

I loathe this image because it shows the imperfection in Gracie's spine... the imperfection that must now be repaired. 
It shows her scoliosis.  It shows her hip rotation.  It shows evidence of her kyphosis.  It shows what still needs to be fixed.  The curve, while bad, isn't as bad as many.  But what these conditions are doing to her heart and lungs and general well-being are, without question, bad. The damage that has been done cannot be undone by straightening her out (she won't ever be totally straight).  What we do, by straightening her spine - - fusing it with hardware and keeping it permanently straight (and making Gracie more bionic) - - is prevent further deterioration.  We stop additional damage to vital organs and nerves. We give her body the best chance possible to continue this epic fight it has so valiantly, so tirelessly, fought. 

She needs this surgery.  We've known that since she was a baby.  It's not news.  We've been prolonging this for quite some time.  Two years ago her new surgeon (whom we've now grown to really love and respect) recommended we do it that summer.  We asked for some time to let her grow, feel as well as she can (by Gracie's standards, of course), gain some weight... just time.  He, of course, had to go by our decision, as it is ultimately ours.  But he did so while expressing that if the curve progresses, the damage does, too.  Our decision was the right one.  She has gained a ton of weight, has grown a few inches, and, until just six months ago, her back remained fairly stable.  But in the last six months there's been change.  I knew it before I saw the x-ray.  I could see it in her posture.  The time has come.  And I am terrified. 

I loathe this image because it brings to the surface every emotion I've been suppressing regarding this surgery.  Until last Thursday, I was able to tuck those emotions into a compartment called "not today."  My "not today" section is rather large, but it is also useful.  It allows me to be in survival mode when needed, dealing with only the things I have to "today" and leaving the rest to reside safely there until I have time to stress over them, worry about them, harp over them, be angry about them... whatever the case may be.  It's where I stick the crap I don't need to worry about at that given moment.  It's how I stay (somewhat) sane.  I cannot suppress this anymore. This has permanently come out of my "not today" compartment and is screaming loud and clear at me every waking moment.  And surgery won't be until September... it gives us plenty of time to do all the pre-op clearances (and there are many, after all, you don't become bionic and badass without seeing a whole team of specialists) and give Gracie her summer to be in the swimming pool as much as possible.  But, even with six months to go, these emotions are out of that safe compartment and I am terrified on so many levels.

How do we make her understand that she will go in feeling "fine" and come out miserable for weeks, even months, on end?  How do we help her comprehend the gravity of the facts - - that she will spend approximately two weeks in the PICU, she will be on pain medication for another six weeks, she will be forced to wear a brace, she won't be able to go to school, she will need rigorous physical therapy?  We can't.  Not fully.  She won't understand and that just breaks my heart.

How do we subject her to the numerous risks... so many... too many... too grim... to list here.  I can't wrap my head around any of it.  I can't bear to think of the what-ifs.  But, we also can't bear to think of the what-ifs if she doesn't have the surgery.  It is all terrifying and I loathe it.

But the thing that terrifies me the most, is the potential psychological ramifications for Gracie.  She has a way of moving her body, of exercising, of just "being" that is very specific.  We call a lot of what she does "Gracie Yoga."  Her little "bionic" body might not be able to walk independently, but she sure can do some truly amazing things with it.   Her core, even with all the new, extra padding around her middle, is stronger than mine... and dare I say, yours!  (If I was smarter, I would spend 30 minutes a day copying what she does... I could make an ab workout podcast and become an internet sensation!)  Often, the way she moves her body, provides her comfort, stability and the proprioceptive input she so badly needs given all her other sensory deficits.  Her way of moving and positioning is the very thing that she can do to self-soothe. But, all this positioning and work that she does will be impossible once she has the surgery.  I will say it again... "Gracie Yoga" will no longer be possible once she has her spine surgery.  While she is the most resilient person I know and the most strong-willed, taking that power and comfort from her and replacing it with, what will be for a while, unbearable discomfort and total lack of knowledge of her own body, sounds barbaric and brutal - - because it is. 

There is nothing John nor I can do to prepare her for that.  There is nothing we can do to prepare ourselves for that.  We can't know what anything will look like on the other side of this surgery.   My "not today" compartment has been ripped open and too much stuff came flying out. I am terrified to my very core... and that, I loathe.

Gavin - Three

As per our tradition, here you are on your birthday, sitting in the Adirondack chair with a bouquet of balloons!
Happy "3" Gavin!!!

Dear Sweet BooDee, Gav-man, Gav-O... Gavin ~

You are three. I am not sure where the time has gone... I say that with every birthday and every milestone for each of you. But, since you are the baby, it makes it all the more impactful. Daddy and I look at you and just can't believe that three years have passed since you joined our family, making it complete and balancing it perfectly - - in ways we didn't even realize were needing balance and completion.

Today, at three, you are 40" tall (SO tall!) and weigh just over 32 pounds. You know your full name, can spell "Gavin" and are learning to write it - - you do a great job tracing the letters and are starting to slowly make some on your own. You've known your birthdate for several months now and were willing to tell most anyone you know that "my birthday is coming up on February 16th." Of course, your pronunciation is not entirely clear, but, wow, do you have amazing language skills. You speak in very full, detailed sentences and shock us all the time with the things that you say. Here are some notables as of late:

- For at least six months, you've been saying this and is funny to me every single time. "Oh! You startled me!"
- In December, you handed a tape measure to Preston and said, "Measure out Uncle Bob for me, Preston." You like comparing various things to how big Uncle Bob is. So funny!
- In January, I asked you if you wanted to play a game and you said, "I would rather build legos." "Rather"... really?!
- The next day, you correctly used "manhandle" in a sentence. At dinner one night, Daddy was trying to clean you up and you looked right at him and said, "Don't manhandle me, daddy."
- About a week later, we were in the garage and I asked you if you needed help getting your rain boots on over your jammies (to help get Gracie out to the bus) and you said, "No thank you, mama. I can easily do that."
- Earlier this month, you said, "It is quite big for me." Daddy and I were so surprised and not even sure we heard you correctly. Then, on the 12th, you said it again while playing independently on my bed while I was getting ready. Your vocabulary just slays me.

Your manners, just like your brother's, are fantastic (most of the time!). You are quick to apologize and are usually a very good listener. You are, of course, three now, so you have started having occasional moments of "threenager" behavior, but it is fleeting and remarkably correctable. Most of the drama with you happens when you and Preston play together. You two start out playing great together (especially considering a near five-year age difference), but then, suddenly, the world caves in and you drive him nuts, he drives you nuts and I am refereeing. Then, when you realize I am going to separate you if you can't get along without whining and yelling at each other, you tell me, "Mama, I am ok. Preston is not bugging me." Or, "Mama, I am not hurt too bad. We can keep playing." You are too smart for your own good!

You worship your brother. You want to be big just like him. (And, sometimes, you will use words you shouldn't and call him names you shouldn't just because you've heard him say it. He shouldn't either. But my point is, you are exposed to far more than he was at three, so when you bust out, "Leave me alone, you big dummyhead," it shocks me. I am still trying to cope with the fact that this is normal stuff between brothers... not that I condone it, but that you aren't the first little brother to bust out words like this when you're irritated!) On many school days, you are when we are going to get your "best big brother" from school. You visibly deflate when I tell you that we have a couple more hours until he is out. You miss him so much when he is not home... sometimes so much that you'll ask to go sit on his bed and play. But even though you adore him and want to be big just like him, you do not seem to want to be just like him. Your interests, at this point, are quite different than his (even at the same age). Although you like to play with balls... you will kick a ball around for a few minutes, bounce a basketball a bit, maybe hit a baseball or two off the tee... but then you go back to climbing, riding your strider bike or the big-boy bike, riding the scooter, or playing in the yard with all your garden toys. You have a wonderful, endless imagination and can play independently for extremely long periods of time. You like to create, build, tear down, and your toys have the best conversations when you talk for them. You can sit for a straight hour and read book after book with me. We always read at bedtime, but you often want to read in the morning and again in the afternoon. It is hard to list current favorites because there are so many you love. "Little Fox Goes to the End of the World," all of the "Marley" books, all of the "Otis" books and, of course, "I Love You All Ways" from Papa, are some that stick out. But, truly, you just LOVE to get wrapped up in books. In fact, although you enjoy watching some shows and movies (you've already been to the movies several times now!), you will get up, find the remote and turn the TV off to go play or ask to read. If Preston isn't home, you are rarely interested in having it on unless you are tired.

As for books, your sister is the same way... she will look at books for hours at a time. And you know that about her and bring her piles of them to choose from. It is so sweet. You also will bring her toys, tell her, "Here, Sissy, you can play with this. I think you will like it because it is purple." You often justify your selection... even though she can't hear you and you. Taking care of Gracie is definitely one way that you are very much like your brother... you are always looking out for your big sister and, even though you're not as close to her as Preston is (remember, Preston and Gracie only had each other for a long time before you were born!), you love her deeply and never go to bed without signing "Good night, Gracie. I love you," and giving her a kiss. And, you try not to be offended if she turns away to avoid your kiss. She loves you, too, and laughs at things you do a lot... even when you don't realize it. She counts on you being there to help get her out the door and on the bus on school mornings. She always smiles at you and expects to see you waving as her bus drives off our street. She loves our routine as much as you do. Daddy and I are so proud of the way that you like to help with things Gracie needs and that you pitch in even when you aren't asked. You grab pull-ups, wipes, supplies, you help make her formula (and count all 18 scoops all by yourself), you like to help do her bolus feedings and run and drop everything in the sink after. You are such a good brother to Gracie.

Speaking of helping, you are quite the little worker-bee. You love to help around the house - - laundry, dusting, vaccuming (you follow with your shopping cart and pretend to vacuum!). You also LOVE helping in the kitchen. "Mama, I will go get my stool," and you run to your bathroom to get it while yelling down the hall, "Please wait for me!" Or, if it is a big job, you ask, "Please go get my big stool in your room." (And, just so we are perfectly clear, I will reiterate... this is how you speak... not the pronunciation, but you do speak in these kinds of complete sentences. I don't know many kids your age who do!) Sometimes, when you are wanting to help, I have to take a deep breath and remind myself that you'll only be this little once and that even though it slows me down a bit, letting you help is far more important than time. Just like your siblings, you are so good for teaching me to slow down, take things in around me and enjoy the process, not just the results.

You love going to Tumble Time and preschool.  Sometimes you say you don't want to go, but once you are there, you have such a good time!  You come out of school and after either hugging or high-fiving Ms. Shanon, you run down her driveway and say, "Hi Mama!  I had a great day!"  So cute!  You chat all the way home about what you did at school.

Gavin, you are a beautiful mix of absolute sweetness and spitfire boy. You are cuddly, loving, compassionate, you tell us all constantly how much you love us and that we are the best mommy, daddy, brother, sister, dog in the world... ever. You never miss a beat around here... you know who is happy, who is sad, who needs an extra hug and you readily give it. And in the next minute you are sneaking around with stealth moves trying to "blast" Preston with your Buzz Light Year dart gun or Preston's nerf gun. You play a mean game of hide 'n seek and make amazing explosion sounds. You are funny... really, super funny... a genuine goofball like daddy and Preston, but also with a more serious side. While you are social, you size up every situation before you join in and start playing - - even at the park. It is fascinating to watch. But when you are in your element and comfortable, you are most definitely the funniest little guy around... cracking everyone up with your fun, silly personality. We are so thankful for you, our littlest Swann... the TieBreaker that completes our family.

Happy 3rd birthday, BooDee.
I love you the whole world!
You are my "TunTine."

With my whole heart,

Mommy

Preston did the honors and took this photo!  He did such a great job!

LOVE this with Nana and Papa! 
(And Gracie photo bombing in the back trying to snag Gav's new watering can!)

My boys!
 

You had so much fun at your "party" on the 15th!



See how much you've grown?!

First Day of School... 2nd and 6th grade!!!

How is he already a 2nd grader? 
I am pretty sure we just took his kindergarten picture on this very porch just last week.

Gracie... not nearly as excited as Preston. 
Plus, it is always confusing to have a "reverse minimum day" and go in near lunch time.
Hopefully she will get back in the swing of things when she rolls through the door!
Gavin, as always, was eager to help!

Gracie and Preston both started school today.  Since we start so early here, it always sneaks up on me.  This year, I was so sad that summer was ending - - I felt like we just got into the groove of a really nice summer!  But, the calendar says it's time, so we sent them off to start their new adventures in 6th and 2nd grade.  Their sweet little brother, who is the world's greatest helper (he learned from Preston!), already misses them both terribly... as do I!

These four... (Cooper, Julian, Jamison) plus Preston's buddy, Peyton, and a few other lively boys should keep their wonderful teacher on her toes!
Bless Mrs. Berry... I think all of us moms said a prayer for her when we read the class list!



He just walked in without looking back.
"Have a good day, Bub!"

Giants... We believe!!!

Enjoying another game with my big, toothless boy!

Another date at the yard with my favorite 7 year-old.  Huddy on the mound, watching him warm up with Posey and cheering the Giants on to win the first game in their next big streak!!! We are all about positive thinking!  We believe in our team!

(Update: They WON!!! I blogged this from the park!  They did it!  We knew they could!)

Gracie's Getting A Wish!!!

A volunteer team will be coming out to meet Gracie and interview our family in a few weeks...
they will then put together her wish plan!

It is official... Gracie is getting a wish from Make-A-Wish!  It is amazing... we are so grateful.  I actually cried when we got the call yesterday.  It is such a mix of emotions... you never want your child to be eligible for something like this. But, at the same time, you want them to be able to have something so wonderful given all they've endured.  She was actually nominated for a wish several years ago, but she was so unstable medically and the time just wasn't right.  Now she is in a better place to be able to enjoy her wish. I also had so many reservations about accepting a wish when there are so many other families out there who have a child who also deserves a wish and we have the means to do many things with Gracie.  Thankfully, the Make-A-Wish organization helped me realize that this isn't about what we can provide for her.  It is about something wonderful being done for her - - that there shouldn't be a stigma or guilt for accepting it - - and that because she gets a wish doesn't mean that someone else won't.  Every child who meets the wish criteria gets a wish.   What a wonderful organization!!!



I completed this on Gracie's behalf for her wish volunteers. 
I hope this, along with the slideshow I prepared, gives them an accurate picture of all things our sweet girl loves!

Last Day of School

Once again we find ourselves at the end of another school year.  And, once again, my mind is blown by how much my big boy has grown and changed.... especially all those toothless gaps in his smile!

A Date at the Yard

After four days of caring for our little pacemaker patient, I got to go on a date with my big boy!  It's no secret how much this mama loves her Giants. So, it is no surprise how much I enjoyed my date today with my favorite 7 year old, at our favorite ball park, watching our favorite team.
 


On our way!
He sat in Gracie's car seat so he could be closer to me and so we could talk.
(Don't look at how big he is for her seat... I forgot to adjust it when we left.  Don't tell my husband!)

Me and my boy... in great seats thanks to an old high school friend.

Mr. Snaggletooth!
He could not leave that tooth alone the whole game!

On the way home... exhausted!
And, I'd be lying if I didn't admit that I was a little jealous he got to nap and I didn't!

Pacemaker Change

Yesterday I drove our happy-go-lucky, feeling-well Gracie girl into Oakland to have her pacemaker changed.  No matter how many surgeries (this was #41) or how many times under general anesthesia (this was #29... not counting "procedural sedations"), we never, ever hand our daughter over without a pit in our stomachs.  It just doesn't get easier.  It also doesn't get easier trying to help her understand that she is going to sleep feeling well and will wake up in pain... or managed pain.  That stinks beyond explanation.  It always feels like such a betrayal to her.  All I can do to remedy that is be by her side and do everything within my power to care for her, advocate for her and love on her. 

I drove her in and John met us there.  Before he arrived, the cardiac team - - Gracie's cardiologist, the CVICU nurse, the surgeon, the Medtronic rep and the anesthesiologist - - all gathered at her bedside and informed me that today she would likely be having open heart surgery to replace her ventricular lead.  (The surgery, as scheduled, was to replace her pacemaker generator only.  Since it is implanted in her left abdomen, it is a fairly "easy" surgery that doesn't actually involve the heart - - other than monitoring, of course.  The leads, on the other hand, are implanted directly into the heart and run to the generator.)  I nearly fainted.  Really... I felt the beads of sweat instantly appear on my forehead, the blood rush from my face and my heart instantly raced.  "We DID NOT sign up for open heart surgery today," was all I could think.  I am SO NOT prepared... neither is John and, most certainly, not Gracie.  They went on to explain that they noticed some "noise" in the testing on that lead and that they would run further tests prior to surgery, but that I needed to be prepared for them to also replace the lead.  The leads are the originals placed in August of 2004.  They are nearly ten years old and it makes perfect sense that there might be an issue... it's actually a question I ask all the time.  "How much time do you think we have left on these leads?"  They've never mentioned an issue... and certainly didn't mention one in our pre-op appointment.  The answer has always been a version of, "In some ways she is so lucky that she doesn't grow much and that her activity level is not typical of a child her age, otherwise she would have outgrown her leads and her twice-repaired/re-built valve."  I always take that comment as a good cardiac outcome, but really, would much rather her be more active, bigger and have needed one extra surgery to replace something she'd "outgrown."  Anyway, it took another 30 minutes or so, but they finally determined that the need to replace the lead was "unlikely."   Good grief almighty.  I was exhausted at that point and they hadn't even finished prepping Gracie for the OR. 

Then, the nurse laid another doozie on me... "Did you bring urine?"  Me... still reeling from the massive surge in my blood pressure, "Um... urine?  No...?"  The nurse (super, duper sweet... lucky for her, because I was already done and we hadn't even started!) said, "We are supposed to get urine for any patient Gracie's age and older to check for pregnancy prior to anesthesia.  If you didn't bring any, we will have to catheterize her."  Oh. HECK. NO.  This "policy" was news to me.  It was also preposterous.  And, while I am perfectly willing to bring in urine if I am told to, I am not willing to put Gracie through a catheterization while awake due to the negligence of the pre-op team who failed to provide me with this information.  So, I told the sweet (again, lucky for her) nurse that they are welcome to catheterize her once she is out (which, of course, defeats their entire purpose) or they can forgo the urine and trust the fact that Gracie is not pregnant.  She then earned double-sweet-stripes by fully supporting my decision - - not that I needed her approval, I was standing firm.  But knowing she was in Gracie's corner made me feel so much better.  Thankfully, after some bantering back and forth amongst the team and the hospital "powers," we (docs and I) signed additional disclosures and agreed to move forward without poking and prodding at Gracie for some potty (which I had also argued they'd be hard pressed to get considering she had been off fluids for hours!). 

And then, after all of that chaos was settled, in saunters my husband.  Seriously... the man missed it all!  I had been through a virtual emotional roller coaster and he walks in as the dust all settled!! How does that even work?! Ha!  All that matters, though, is that all of the hoopla prior to surgery was the only hoopla for the rest of the day.  Surgery went well, they reconfirmed in the OR that they didn't need to replace her ventricular lead, and she spent one (long) night in the ICU.  Children's Oakland has an open-floor ICU... something we are definitely not accustomed to.  There are only curtains separating the beds, the lights cannot be dimmed enough for Gracie's liking and it is SO LOUD.  The sound, of course, did not bother Gracie, but not being able to control the lighting around us was horrible.  She just kept signing "light" over and over.  I didn't really want to leave her side for a second, but I wasn't even allowed to have a water bottle at her bedside, so I was forced to hydrate outside the unit.  I am just so thankful everything went well and she only had to be there one full day/night... because any longer and I might have gone nuts!

We are home now and Gracie is asleep.  I am hopeful that her pain will be well managed with the meds we have in our makeshift hospital.  She was very feisty on the drive home as well as when we arrived... all of her energy spent fixated on trying to remove her surgical dressing.  The fear of infection is huge for us given her history, so keeping her little germy hands away is crucial.  She understands that she is not supposed to touch the dressing, but she doesn't understand why - - not that it would make a big difference!  She is determined to do what she wants to do whenever she wants to do it.  This girl... the spunk and sass are what I love most and what are, many times, most challenging!  For now, though, she sleeps and ignores that site.