LOST A SOCK

Two and Three

 

Hello Internet! 

I am Happy Princess Marin and you've just stumbled upon the Princess Marin Show!

 

My mother thinks it a fabulous idea to lay me on this giant ottoman every few days and take ten thousand pictures of how I've grown since just days before, and today was one of those days.  She tossed down my fall blanket and hoped to get some great shots of me in my fun pink sweatshirt and then, you guessed it...  Blech - all over it.

 

And now I will suggest she dress me in something other than this bo-ring white undershirt, so I shall attempt to soak it as well.

 

Dog-nabbit.  Now that didn't cut it at all.

  

Oh look!  A brother is attacking!  Let us see which one it is.

  

It's Jack!

Hello Jack.  You are the more dangerous of the two.  And the one who refuses to wear pants.  

Now don't go climbing on my head like you did yesterday.  I'm warning you.

  

Mom!  Haaaalp!

Put down the camera and save the infant.

 

Aaaaahhh.  Much better.  A safe distance.  A nice, safe, pleasant distance.

  

NOTASAFEDISTANCE!

 

Beware brother!  I will fight you off with my super-clenched fist and terrible grunty noises!

  

Haha, I crack myself up!

 

Ohhh, he has gone...  

Back to playing Noisy Pantsless Superhero Lego Helicopter Baby-Telephone Something or Other.  Do you understand these boys, Internet? 

 

Me neither.  But he covered me with his special blanket before he returned to his toys, which mom thought was very cute.  So I suppose I'll enjoy his noises and antics until he climbs on my head again tomorrow.  That's the way it goes, eh? 

Eight in O-Eight

Today is our eighth wedding anniversary. 

A couple months back when we celebrated our eleventh anniversary as a couple, I really wanted to create a new video for us, as I had done for our sixth wedding anniversary.  But alas, I was scheduled to have a baby the following week and found myself too busy, if you can imagine.

So as this year's wedding anniversary rolled around, I put my nose to the grindstone and my new baby in her swing and worked on it during all of my available moments.

I've been thinking a lot about what we have been through in the last year, because when I say that it has been the most stressful, mind-blowing year of our marriage, you can be certain that it has been the most stressful, mind-blowing year.  There have been high points, of course, but there's been a whole lot of standing knee-deep in heavy muck wondering how to get out and what's next.

When we began year eight, our house had been for sale on the real estate market for six months and we were (unknowingly) just about to have our second purchase agreement fall to pieces.  We had also just moved into our new house, certain the old place would sell in no time flat.  Then we waited nine more months with an empty house, until we painstakingly decided to dive head first into becoming landlords.  During that time I also took on the job of painting and decorating our new house from top to bottom, with a five and one-year-old running around, all while Kevin made a career change that demanded his being away from home nearly eighteen hours a day.  Thankfully, said career provided the means to carry the mortgages and upkeep on both of our houses for such an extended period of time, though sadly adjusting to life without my husband (and the kids without their dad) on a daily basis was, and continues to be, burdensome.

Furthering the craziness, I personally spent one quarter of this last year playing hide-and-seek with day-long morning sickness because - surprise! - after finding ourselves on the Infertility Roller Coaster of Hell's Carnival in years previous, and having decided after the birth of our second child that we were finished having children, we learned that we were pregnant.  After some of the panic wore off, being as how we were in the middle of a true real estate disaster as well as myself playing single mom most of the week, we couldn't be anything but excited to welcome the newest member of our family with wide open arms.

Unfortunately, as things sort of went last year, fantastic news took on its own twinge of heartache and apprehension as we learned that our baby had some sort of kidney problem that would go on to take four months to diagnose.  Marin's birth was met with both incredible excitement and an awful hospital experience, complete with the removal of a large (benign) tumor from my ovary, along with most of my ovary.  Finish that off with KJ starting school, many doctor visits for our baby and a week's stay in the hospital for a bacterial infection, and it really does make for the most stressful and mind-blowing year of our marriage.

All of that to say, we made it.

We still have two houses, and we've turned out to be fine landlords.  Our priorities have been tested by fire and we spend all of our free time as a family, taking infinitely less for granted.  We know for sure that the best things in life are not things at all, and that what really matters is not what you've got, but who you are, and who you've got.  My pregnancy was healthy, our new baby is beautiful, our boys have weathered it all like little champs, and we look forward to beginning a new chapter once Marin's upcoming surgery is under our belt.

Sometimes we could only push through day-by-day or even hour-by-hour during the last year of our marriage, remembering often to thank God for all that was taking place, positive that there are reasons and lessons within it all.  Sometimes we fought, really fought, and took our frustrations out on each other.  And sometimes we held hands and walked the hot coals together, sure that if we had to go through this sort of obstacle course with anyone, we wanted it to be each other.

We have learned so much.  And looking back, I am more grateful for this experience now than when it was all I could do to roll the words off my lips.  We are better, closer and stronger for what the last year has dealt us, and we never could have become this strong version of ourselves, both individually and as a couple, without our year of trials. 

I feel that we are on the precipice of a new beginning, and that the eye of the storm has passed.  Or maybe it's that now I realize that we really do have the strength to keep going, and no matter what happens we're going to be okay - all five of us.

I'm just glad no one gave me an overview of what the upcoming year would be like, at this time last year.  Whew.

Oh Happy Day

Alternately titled: We're FREEEEEEEEEE!

Guys, I have tried to update this thing fifty million times while in the hospital with the mouseless internet, all with the use of the TAB key and the worst keyboard ever known to man, but Mah God every time I thought I figured out how to make it post with the use of TAB, TAB, TAB, TABTABTABTAB TABTABTABTAAAAAAABDAMNYOU it would eat the entry that took triple the normal time to write, thank you worst keyboard evah.

Alas, we have arrived home, and what a difference a week makes.

Quick backstory: We took Marin back to the hospital last Friday, just a few hours after we were released, because she had spiked a pretty good fever.  In all the awfulness the universe could muster, she had blood tests, catheterization and a spinal tap and was then started on antibiotics and admitted.  It turned out that she had a bacterial infection in both her blood and her urine, a pretty serious one that was resistant to the prophylactic antibiotic she's been on since birth, and subsequently the antibiotic she was started on that first night in the ER.

So very luckily, Accomodations were provided by Blue Cross & Blue Shield at the Four Star University of Chicago Spa & Resort, and Marin was cared for by a team of doctors, residents and nurses that were just incredible.  (The docs and residents?  They really do walk around in large white coat-wearing groups just like Grey's Anatomy.  I gave them little pet names in my brain, like Yang and Izzy and Mer and wondered which tiny supply closets they were sleeping in during their twenty-four hour shifts, but then the challenge was to not speak these things aloud in the moments I had to rejoin the world of, uh, re-al-i-ty, as they discussed with me plans of action for my baby and more damn IV's.)

As I had filled you in way back when, my next step last Monday morning was to contact a new nephrologist at the Children's Hospital in Indianapolis.  Fortunately, the only thing I could really do with the odd, odd version of Hospital Internet on TV was to TAB TAB TAB and read.  And after doing plenty of reading about the urologist/surgeon we had been seeing at U of C, I wondered why we gave up on the entire hospital so quickly after one bad opinion from one nephrologist.  (I'll tell you why.  With the news and advice from last Friday?  I was in a panic and willing to stand on my head for the rest of my natural life if it would mean never considering the possibility of renal failure in my baby again.)  

With that I left a message for the urologist, and within a couple of hours Marin was being wheeled down for another renal scan.

A few hours later the doctor was back up in our room with answers.  (I won't begin to list the ways in which I adore this man, for I fear I will never be able to stop and then you will never get the rest of the story.  Am long winded.  Have been in seclusion.)

First of all, after much physician debate over the badly worded MAG-3 results, it was clarified that the forty and sixty they had mentioned were meant to say that Marin's bad kidney is functioning somewhat below what is normal, but the good kidney is overcompensating to give her a nice ninety percent total renal function.  That news in itself was enough to have me swinging from the hot fluorescent ceiling lights, but then I let the man finish.

The top half of Marin's bad kidney is very swollen (and now infected) as we have been seeing in test after test.  Thankfully, the bottom half and its attached ureter are completely normal.  The top half of the kidney also has a second ureter coming from it, also very swollen and infected, and neither the top half of the kidney nor the upper ureter are functioning, but rather, reeking havoc on Marin's poor little body.

For that reason, our doctor is giving Marin several more weeks to completely heal from her bacterial infection and then she will undergo surgery to remove the upper half of the kidney and ureter.  And if you can imagine, that is the best damn news I've heard all week.  My daughter is going to have surgery, and then she is going to be FINE.  She will be checked periodically after all of this, and she will be JUST FINE. 

Normal - and healthy - and fine.

My tortured mind and her tortured body since week twenty-five of pregnancy, and finally there are answers, and a plan, and a predicted wonderful outcome for a long, happy, healthy life.

Just for kicks, though, I think I should change my blog name.  Shall we go with,

Lost An Ovary,

Lost My Mind,

or 

Lost a Kidney?

 

A fine time to joke, protests the chubby-cheeked one.   

This was us for the last seven days, in the most awful chair in the entire hospital - the only place I could hold her given the short leash of leads, wires and IV tubing.

 

Kevin and the boys were able to visit the nurse with the juice and snack cart us last weekend, which was great.  It was nice to be together as a family, even if it meant being here together as a family.

 

And as a perk?  In-room prisons for bad behavior (or for playing zoo polar bears, whatever floats your boat.)

Back in pink instead of those awful blue hospital gowns.  Maybe now unsuspecting nurses will stop calling me Martin!

I am also feeling infinitely better all around, and have plans to spend the rest of the week catching up on playtime with my children, and cleeeeeaning, holy pent up energy Batman.

Forget Everything I Just Said

An hour after I posted last night, Marin woke up with a 102.5 fever.  We are back in the hospital for more awful tests, pokes and prods.  Should be at least a few days, says the doc.

Home Again: A Post-N-Pass-Out

It isn't possible that we were only in the hospital for two days, is it?  I swear it felt infinitely longer.

In any case, Marin and I are home, and happy to be. 

I won't bore you to tears with the step by step details of our days, but I'll hit the highs and lows.  The night feedings that I worried about went okay as she was open to a little water and pedialyte during the night, so Marin really only dealt with hunger pangs as she fought sedation meds like I've never seen a child do.  The hospital staff was amazing in all of the comforts they provided for her, from little toys and sweet words, to allowing me to hold and rock her as much as possible (heh, a hospital that encourages mothers to hold their babies?  Pure Rocket Science, this University of Chicago should share with the locals.) 

As I mentioned about the sedation meds, it took a very long forty-five minutes to finally get my baby to sleep.  She and I had a good cry, and once she finally went under the nurses went as far as having me hop up on the gurney with the baby on my chest so as to not disturb her.  Once she was secured on the testing apparatus, Kevin and I were sent to the waiting room.  And then?  Marin managed to pull herself out of the drug-induced sleep (I told you that child fights sleep!) and had to have the medications administered all over again.  So glad I wasn't there for it the second time.  Watching your child go under is both very sad and a little scary.

She did fabulously with her breathing and heart rate during the test, as well as throughout the entire time we were there.  She was allowed to sleep in her car seat just as she does at home, though I can't say she or I scored a whole lot of shut-eye with the beeping machines and hospital staff in and out throughout the night.

This morning I spoke with the pediatrician on the floor, who delivered Marin's test results.  

Both kidneys seemed to be flushing in a timely manner, though as was expected the right kidney continues to show severe hydronephrosis (is quite swollen) since the urine is not draining away as it is supposed to.  The ureter (tube that connects the kidney to the bladder) is still showing the widening at the top, which is where the obstruction was thought to be.  

Except that there was no obstruction observed.

This is where we run into ten thousand questions.  Since there is no obstruction, we now are left with mystery hydronephrosis (provided nothing was missed during her VCUG and MAG-3 tests, which I would imagine really were fine?)  If the case were that there had been an obstruction that somehow fixed itself, the symptoms would have gone away with it, but that is not the case. 

Our urologist had predicted a pretty severe obstruction from what he saw in the ultrasound images several weeks ago, and thus his insistence that we move fairly quickly towards surgery.  But according to this MAG-3, there is nothing there to remove surgically.  Just symptoms, and back to the drawing board.

Further complicating Marin's problem, the report also was interpreted to say that the right kidney (her bad one) was functioning at 40 percent, but also that the left (her good one) was only functioning at 60 percent, indicating that neither of Marin's kidneys are well. 

Our nephrologist suggested that there isn't anything we can do for her immediately, other than to continue with the antibiotic she's been on since birth to prevent kidney and bladder infections, and re-do testing in a year.

A year.  (A year?!)

Suffice it to say there's not a popsicle's chance in hell that I will settle for Wait and See for an entire year, all while the possibility exists that my daughter's condition could worsen over that time, pushing us closer to awful things like dialysis or a transplant.  I absolutely do not want to go that far in my mind, honestly trying to take this baby step by step, but that approach should certainly not give way to being under-cautious either, complete with Fingers In The Ears, LaLaLa.

I spoke with our pediatrician back home this afternoon, who also suggested it was time for a second opinion.  She read the report as the other doctors had, and felt strongly that we should try to get to the bottom of things.  We were referred to a new pediatric nephrologist down in Indianapolis, who I will contact on Monday morning...

...right after we do take a quick mental break from all of this.  I hope to spend time as a family this weekend, hopefully taking in the fall colors and the predicted sunshine, being a normal family again. 

I am so glad that we have good options, still, and a wonderfully supportive pediatrician.  I'm thankful that we have outstanding health insurance that will allow us to care for our baby in whatever way is necessary, and that we have family and friends who have been so supportive and willing to help.  And I'm so thankful for all of your support here.  We are going to be okay, and Marin will be fine too.  We will continue having faith and accepting our situation for what it is, because it's about all we can do, right? 

Gettin' Ready: A Post-n-Run

Tomorrow is the first of a few upcoming "big days" for Marin. 

She is scheduled to undergo a MAG-3 test tomorrow morning, which involves complete sedation, and then nuclear medication will be given intravenously.  Once the nuclear medicine is in her bloodstream, doctors will watch as it is processed by the kidneys, and they should be able to see the full extent of the obstruction.  On the day after her birth, the obstruction was a three to four on a scale of four.  Our pediatric urologist gave her a few weeks to gain some weight before what he is pretty sure will be her upcoming surgery, and we've now arrived at that time.

Now for all the messy stuff. 

First, I have to figure out how to not feed this baby after 1am tonight, until after the (8am) test.  Since she does have the acid reflux disease so badly, I definitely must abide by that rule in order to insure that she won't aspirate while under sedation tomorrow morning. 

Also, whoopsie, somebody at the hospital failed to mention that we would be admitted until at least some time on Friday.  I quickly had to scramble this afternoon to find two full days' worth of babysitters around work schedules, and will have to break the news to KJ and his teacher that I will no longer be the parent chaperone for his Friday morning field trip.  The hospital staff that I spoke with this afternoon suggested I could reschedule the MAG-3, but I think our baby's kidney obstruction takes precedence over a live performance of Max & Ruby.  I simply suggested that NOTICE! would be nice.

Last but not least, it wasn't until today that I learned that the baby's heart rate and breathing will drop during the sedation (and thus the reason for admitting her) and that two nurses will be with her at all times, and there will be a PICU doctor on stand-by.  This is not just me - you would be nervous, too, right?  My baby is not quite six weeks old yet, and this is a lot to swallow.

I don't know what kind of results we will get in the next couple days, but Marin is scheduled for a second renal scan and to meet with the surgeon next week.  I will definitely know more then.

Think of us, and I'll keep you posted.

 

She's gotten big in just a few weeks, hasn't she?  (Let us not discuss the hell I be lookin' like these days.  It's a nice mix of stress and overtired.  Bah.)

Choose Your Own Adventure

I have been trying for days to figure out exactly which of my seventeen personalities should post to this terribly neglected website.  Should it be The Overtired?  She Who Self-Medicates With Bag After Bag of Chewy Chips Ahoy Cookies?  Possibly Super Laundry Girl (who gets as far as folding and then allows eight baskets of clothes to build up and be picked through on her bedroom floor for at least a week,) or maybe you'd prefer to hear from Riddled With Guilt Mom, which has been the personality of choice these days.

This is normal for five weeks postpartum, I suppose, to feel pretty okay, and then no more than an hour later have a complete mental meltdown over tossing yet another unhealthy dinner onto the table, way to go super-mom (rhymes with Shmurger Fling, but wait! A-ha! Apple Fries! Nutrition at last!)  Or to be driving to the outlet mall, finally alone, forgiving oneself for being So Not Ready to work on losing the remaining forty-ish pounds of baby weight, and then find myself back in my car after only The Gap, bawling because my God did I really just hunt for that size after working so hard to lose so much weight a couple years ago?  And also, I already missed my baby.

These days are pure crazy. 

I did try to pick up the pace late last week, though, and packed everyone up and headed out to the pumpkin farm (with the help of two girlfriends in tow, of course.) 

So, uh, my camera batteries died ten minutes into the fun and the entire experience shall now be chalked up to, Look, We Done Sat On A Red Tractor That October. 

This picture is titled Mama Had To Get Out Of The House So We Drove Up To Michigan To See Orange and Yellow Trees.

Drove and drove and drove, thanking my lucky stars that the boys are good travelers, and Marin remains fairly happy in the car unless it comes to a stop for any reason whatsoever.  Just keep moving.  Keeeep moving and look at the pretty fall colors.  Keeeeep, keeeeeeep moving, you fools.

And if we must exit the vehicle, this is the easiest thing to do in Michigan, or anywhere, with children ages six, two and one month, and one teetering-on-the-edge mother: eat ice cream. 

 

This is the yellow tree I was in love with, which made me feel All Better And Even Normal for a few minutes while I took eighty-seven pictures of it.  

Eighty-eight.

Eighty-nine?

   

Back home, back to that part about the moving again.  Just keeeeeeep her moving.

 

KJ's Spongebob Square Pants addiction is to Marin's movement addiction, though somehow I can deal with one much easier than the other.  (Good gravy he looks So Six Years Old.)

And as for the middle one?  (How strange it still seems to me that he is my "middle one," by the way.)  He's plum goofy, and as long as he's happy, I'm happy.  Even if it means tossing him into the recycling just for kicks.  And see how happy he is there?  Plum goofy, I tell you.

Slowly

I think it is finally safe to say that we've turned a corner.  Turned the corner and then sat down for a rest on the nearest doorstep, but turned it nonetheless.

Your recent comments and supportive emails lifted me up and helped me to feel better in a way that I could not have imagined, and without going completely cheesy-weepy on you all, thank you, for everything you shared with me and for giving me a break when I wasn't in a place to give myself one.

As if it isn't painfully obvious, I am my own worst critic.  Sometimes I think it's a good thing because I push myself to do all kinds of things that I might not otherwise attempt.  But not in this case, I am learning.

After my last entry I decided I had to try a new approach to this Handling Everything process.  I can't really say what the new approach is, but I can tell you that it involves daily naps.  When Jack goes down in the afternoon, after Marin has been fed, but not before I've showered or folded laundry, I set KJ up on the Wii and lay down with the baby on my chest, and sleep.  I've been averaging three to four hours per night, and up to two hours in the afternoon (if you can imagine KJ's delight with that kind of game time) and the daytime sleep has made a great difference in my ability to get through the very long days and nights.

To add to the growing list, Marin was diagnosed with Acid Reflux disease this week (just as both KJ and Jack had -- at least I am an old pro at this one) which is very much a contributing factor to her inability to get asleep and stay asleep during the night.  Generally speaking, once I lay her down she begins spitting up, wakes up, and we begin the rock to sleep process all over again.  Daytime sleep comes easier for her since it usually happens on my chest or in her swing or bouncy seat, all of which keep her upright.  The night sleep is headed in that direction as well, achieved best by both of us when I'm in a partially upright position on the couch with her on my chest.  Is not Whatever Works every new mom's best mantra? 

I am comforted by the fact that she continues to gain weight, making it to eight pounds two ounces at just shy of a month old, and I am hoping for good things from the Prevacid she started yesterday.  Her next round of kidney appointments begin soon, but I'm trying not to think about it for the time being.

Last but not least, I've been trying to take care of myself a bit more, with everything from a haircut and almost daily showers, to arranging to meet with a new OB/Gyn who will monitor me for any tumor regrowth and hopefully put my mind a bit more at ease with that whole situation.  I've also begun driving KJ to school every morning as opposed to walking him to the bus stop, and the getting out with all three, even in small doses, is raising morale.

I can hardly believe we've made it to one month already.  Temperatures outside are cooling down, the leaves are beginning to change, and finally it is my favorite, favorite, favorite time of year.  May the fall be especially good this year.