The Night Before Surgery…

I can barely swallow.  “I should be crying, but I just can’t let it show.  I should be hoping but I can’t stop thinking…” I guess because I pride myself on being strong… on being able to calmly handle even the toughest of times.  But this is my daughter! My two year old daughter is having major surgery tomorrow morning!!!! I’m trying hard to imagine her after the surgery strong, healthy, laughing, glowing, playing… but I’m choking.  What if… What if…?  I can’t write my fears or even acknowledge them.  I… I’m choking.  I feel this pinching, tight, squeezing behind the skin on my face.  My muscles trying everything in their power not to sob.  My shoulders glued to my ears.  My hands on my face.  I’m breaking down.  God! Please protect my precious child.  Please help her to come out of this surgery strong and healthy.  Please help her to understand.  Please give her strength.  Please give me strength.  I envision her after the surgery stronger than ever… laughing and playing, learning and growing.  I envision us traveling the world together, exploring and spreading love and compassion to all.  Alexa has such a beautiful soul… naturally so kind… so thoughtful.  She deserves to live a long, healthy, happy, fulfilling life.  This world needs her.  I NEED HER.  Thank you God for giving us the strength to overcome this surgery… Thank you. thank you. thank you.  I know… I know… I know she will be okay.

The Big 2 Birthday Weekend!

We had a great, but quiet birthday weekend.  I was able to choke back my pain for the most part.  Pain not only in regards to Alexa's surgery, but also pain accumulated from so many other angles over the past week.  Most of the chaos I just don't understand, but as hard as it is, I tried to let go of it all and focus as much as possible on Alexa and her happiness.  But honestly, my suffering is so great right now, I am going to have to upload the birthday photos in a few days from now and recap the “All About Alexa” Big 2 Birthday weekend later.  I am too encompassed with her surgery tomorrow morning… I have a knot in my throat the size of a softball and I just can’t focus on anything else right now.  Once I know she is okay, I’ll update the birthday blog…

Pre-Op

Surgery is scheduled for Tuesday, April 19 at Joe DiMaggio’s Children’s Hospital, 4 days after Alexa’s second birthday.  The surgery is expected to take 2 hours with a 2-3 night hospital stay and a total of a three week recovery.  Doc believes Alexa will be ready to run around and play again less than a week after coming home from the hospital, but I am advised to try to keep her resting for another week to two weeks.

The surgery is a c-section cut across her lower abdomen.  Doc will perform a ureteral reimplantation on both ureters.  The surgery changes the position of the tubes at the point where they join the bladder to stop urine from backing up into the kidneys.  After surgery, she will have drainage tubes and a catheter for 2-3 days and could most likely experience painful bladder spasms.  She will be given morphine and other drugs through IV tubes which can make her nauseous and vomit.  Heart and respiratory monitor lines will add to the chaos.

I’ve been staying up late at night reading other mothers’ blogs about their little girls who recently had the same surgery.  Some stories are what I expect based off of the Doc’s description and other written material on the surgery.  Other mother’s speak of uncontrollable pain, irregular heartbeats, their toddlers ripping their drainage tubes and catheters out, and pain when urinating for 4 weeks after surgery.  Ugh.  So not looking forward to this!

Here’s more info about the surgery… http://www.ucsfbenioffchildrens.org/education/ureteral_reimplant_surgery/index.html

Since my mind is consumed with this while Alexa sleeps at night, while Alexa is awake, I want to forget about it and do whatever it takes to give Alexa the time of her life every day.  Soooo Saturday, I took her to Gumbo Limbo Nature Center and Sea Turtle Rehabilitation Center and Alexa LOVED it.  She was so excited when the Sting Rays jumped up to try “give her a kiss”, the Green Moray Eel swam around the tank showing off her mammoth body, all the sea turtles, Nemo, blowfish, sharks, lionfish… Alexa was more than excited.  Her reactions were so cute I just wish her Daddy or Grandma or even a friend were around to see how these rescued sea life light her up.  Sunday, we spent the morning at the beach collecting seashells, making “shakers”, swimming in the ocean waves and making sand forts with long motes.  Oh and we watched “Finding Nemo” about 4 or 5 times this weekend too.  Really, Finding Nemo again?!?!  Okay Sweetie, whatever makes you happy…

So Grateful for Family, Friends & Friends of Friends

I am so grateful for all the love and support in my life from family, friends and even friends of friends.  From what I hear, the surgery recovery may not be too bad.  I am, of course, still freaking out about my daughter going under anesthesia and being cut open, but like a friend explained to me, she is young and healthy and will most likely bounce back better than an adult would or even an older child.  We have a pre-pre-op appointment tomorrow morning with her Pediatric Urologist and boy do I have a list of questions for him.  I’ll fill you in later.

So, I did end up taking Alexa to a Pediatric Chiropractor earlier this week who claims Alexa does in fact have a slight twist in her upper lumbar region and her left hip pronates somewhat, but I don’t think he can help with this VUR condition.  I don't think it is related.  It was worth a try though.

20 more days till surgery... 20 more days until this VUR condition is gone for good.

I’m Running Out of Time!

Alexa’s surgery is only 26 days away and I am now in full panic mode researching all night, every night for alternative treatments for high grades of vesicoureteral reflux.  All I can find are the typical things our Doctor has already discussed with us that he believes won’t work for her particular case.  My heart is racing.  I can barely swallow.  My mouth is dry.  I’m shaking and choking back tears.  This whole situation is freaking me out!  Tonight I found a fairly new method, still in the research process called Laparoscopy.  Did the Doc talk to us about that one yet?  I can’t remember.  We have a pre-pre-op appointment in 6 days.  I will ask him then.  I’m running out of time!  I’m sick to my stomach!

She’s sleeping right now so peacefully.  We have a video monitor so I can see Alexa as I type this.  I’m not sure why I still use this video monitor since she is now close to two years old and hasn’t awaken in the night for a long, long time unless she’s sick.  But I guess having her real life image next to me during the night helps me feel like she’s literally by my side.  I miss her at night while she sleeps in the other room and sometimes secretly wish we continued to co-sleep.  Right now Alexa’s in her bed, in her room, all snuggled up next to her kitty blanket and her favorite little brown bear that we ironically received as a gift from the hospital when she was first diagnosed with this condition.  At 6 months old, we spent 5 days in Boca West Hospital on IV’s as they ran brutal test after brutal test to determine the cause of her extremely severe kidney infection.  The bear was with us the entire time.  This little stuffed bear used to wear a T-shirt with the name of the hospital on it.  The second we returned home from the hospital, I took off that bear’s Tshirt and threw it away never wanting to be reminded of that experience again. She’s snuggled with the bear ever since.  He’s traveled with us to St. Maarten, Antigua, Italy, France, Monaco and Texas. Little did I know that little brown bear would spend the night with us in the hospital another 4 times before she even turns two years old for the same damn condition.

I have decided to try something completely random tomorrow… I’m going to call every Pediatric Chiropractor within 75 miles of us to see if they have ever treated a toddler with VUR and if so, were they successful.  I found nothing about this in my online research, but I did find Pediatric Chiropractors are treating kids with colic, ear infections and even asthma now.  If Chiropractors can cure kids with digestive and respiratory conditions, why not a urological abnormality?  In my research I learned nerves near the end of the spinal cord (the sacral level of the spine) control how the urinary system works.  Maybe Alexa’s sacral level of her spine is slightly off and just needs a little adjusting to fix the vesicoureteral reflux.  Am I crazy?  Am I stretching this a little too far in my desperate attempt to find an easier, less traumatic, less painful way to cure my little girl?  Well, if you think I’m crazy, so be it.  I don’t give a fuck what anyone thinks about my actions right now.  This is my baby!  My precious sweet innocent little girl and I am determined to thoroughly examine every conceivable option to ease her pain and avoid possible unnecessary open surgery.  I can barely swallow.  I’m running out of time!  There’s sooo much weight inside my chest pulling me down right now.  I can’t breathe.  Ok… I’m turning off the computer now.  No more research tonight.  I’m going to try to get some sleep… with the baby monitor just a few inches away so I can feel like she next to me.

Because… Today Is All We Have

FEW! I can finally catch a little breath, but only a short one.  George is upstairs packing to go away on a 3 week work trip (St. Barths… then Italy, Spain, France, Germany and Holland) so I want to spend some time with him tonight before he goes.  Since my last blog we packed up two months worth of crap in two hours, flew back to Miami and have had a whirlwind of a week trying to find balance in our chaotic stateside routine.  Why does it seem like there really is never enough time in the day when in the states?  I frequently find myself up at 6am and going nonstop until midnight (or many times even later).  I can barely catch a breath.  If I have 10 extra things on my daily “to do list”, I am lucky if I accomplish 4 in addition to my paying job(s), my fulltime motherhood job, my housework job, school and all the other daily crap that comes up.  I miss the relaxmosphere of the Caribbean.

Despite the USA chaos, every morning I wake up grateful for a fresh, new day and try to live it like it’s my last.  I try to be grateful for everything as much as I can.  I try to be mindful and aware.  I’m purposefully kind to everyone (or try to be) and truly feel love in my heart for everyone and everything.  If I am lucky enough to go for a run, I imagine zapping everyone I pass with loving energy from my energy reserves and imagine the sun reenergizing my entire being with every breath I take.  If something frustrates me, I try to find the good in the situation and let go of all disappointment or any other negative feelings as soon as I notice the feelings are there.  Yes, I do have to vent them out sometimes, I’m not perfect, but after venting I begin to allow those negative feelings to dissolve as quickly as possible.  Because… today is all we have.

…I’m going to miss my baby while he’s gone and worse, Alexa is going to miss her Daddy so, so incredibly much.  I hope you enjoy the random pictures of Alexa.  I'm off to spend my last few hours with my hubby for a while.  A little separation is good sometimes, but 3 weeks!  That's just so long.

Good News!

Good news!  The Dutch St. Maarten Doc tested Alexa’s pee this morning and it is clean.  She still needs to finish the meds though, 3 more days, just to be safe.  Alexa felt so good today we took her on a boat ride.  She loves boat rides.  We anchored off of a random beach, jumped into the turquoise water, swam to shore and enjoyed spectacular gourmet food on the beach cooked by an amazing Chef in an abandoned bus.  Wish we would have found this hidden treasure sooner, but hey, we have something new to look forward to for next time.

After the Doc and before the boat ride, Heather, Margarita, Jamie and I scurried off to a gorgeous beach front yoga class in Grand Case.  Words can’t describe how beautiful it was.  But the car ride back was the highlight.  I haven’t laughed that hard in a long time.  Boy did I need those laughs.  I’m so grateful to have girlfriends.  What we would do without them?