Sun, 13 Nov 2011 21:54:46 -0800WeeblySun, 13 Nov 2011 21:13:38 -0800http://www.perfectlittleme.com/1/post/2011/11/and-im-back.htmlIt's been quite some time since the last post.  I've been telling myself life has just taken over and that there is no time to update the blog. I originally started posting to the website to update folks on Tatiana's condition. It didn't take long for it to evolve into a kind of self-healing platform. 

A lot has happened since that last post! I've gone through two jobs - which, of course, means I've also had to switch insurance carriers and reset my out-of-pocket deductibles and contributions. I'll spare my rant on that subject for a later post. I might even post pics of the mountain of paperwork that  comes with that territory. 

At some point, I guess I just started censoring myself by not posting.  Even though Tatiana's issues have reached a point where she seems stable, we constantly have to monitor her to be sure there isn't anything going on under the surface. Even then, I can't say we're fully in the clear. Its nearly a daily struggle to overcome my paranoia of all of the possibilities for what might go wrong - I am, after all, a pessimistic optimist: I have faith that everything will turn out fine, but I constantly feel the need to prepare for a crisis.  We're also faced with the repercussions of everything that could have gone better: insurance, self-advocacy, better information, access to resources, etc.

All throughout those frustrations, I would come up with some great posts in my head!  Somehow, I kept telling myself I had to have everything sorted out before writing about it. Lame, I know. Maybe I was just so overwhelmed at a time when I felt I should have been enjoying the calm after the storm. Maybe I just didn't know where to begin.

That takes me back to the post I left half way done, so I'll pick it up from there!

A few months after Tatiana's last surgery, several people  would constantly ask "How is she doing?"  - always with the best of intentions and a genuine sense of concern.  I never quite felt comfortable with my response.  It's difficult to explain.  I suppose it's a combination of not knowing how to respond and not knowing the precise answer to the question being asked. 

Reminds me of the earlier months in her life when I would try to explain her condition.  Struggling to find that fine line between what people are ok hearing versus what is actually happening.  The looks on their faces. Me not wanting to disappoint anyone with my response. Maintaining my composure when people ask for the details and I realize I've said more than they were ready to handle.

It's a constant negotiation of sorts - one that still applies even after all this time neglecting my posts.

Do I go into detail about how she chucks her food up at least 3 times a week (it has gotten better now, but I swear it gives us a false sense of security!)?  Or about how she suffers from chronic constipation?  Do I tell them that for a good while she was forced to experience the unpleasantries of an enema on a weekly basis and sometimes daily?  Do people want to hear about the constant frustration from visits to the doctor's office that result in nothing more than a definitive indefinitive? 

She seems fine. She looks perfect. She doesn't have to see so many doctors as often anymore.  On the other hand, silly foods still get caught in her esophagus (and no one can tell me what the issue with that is). She has the worst time going poo (and it makes you want to cry not knowing how to make her feel better as she props down on all fours writhing in pain).

I still don't have an answer in terms of how to best respond, but I can say I am grateful for still having the opportunity to respond. The silver lining in the complexity of how to form my response is that it gives me the constant opportunity to reflect on our journey and be aware of my own emotions.  We've come a long way!  I
]]>Wed, 26 Jan 2011 21:48:03 -0800http://www.perfectlittleme.com/1/post/2011/01/my-little-bumblebee.htmlTatiana and Natalia love to drive me crazy singing along to this Baby Bumblebee song they have on one of their toys.  That song can get stuck in your mind for hours, and yes, I have caught myself bursting into random song here and there one too many times.  In some ways, the song reminds me of Tatiana's magic, and that magic takes me back to a story I told a while back.

I shared Tatiana's story with a group of inspiring young women last summer.  I remember I wanted to remind them how important it is to believe in yourself, even in the most difficult moments.  I remember wanting these young women to realize the power of shaping your own destiny regardless of how others may attempt to define you.  I also remember wanting this message to come from the heart, and as I spoke, I found myself sharing the story of how I was told it was very likely that Tatiana would not walk.  It was in that moment that I realized I had a little bumble bee. 

You see, aerodynamically, it should be impossible for bumble bees to fly, but the bumble bee doesn't know that.  So, it flies.  

Tatiana is fearless and admirably defiant.  A few months after torturing myself with all of the what-ifs, Tatiana took her first steps.  In her mind, she has no limitations. She walks, runs, jumps, and dances to the beat of her own drum.  

Some scientists would say that it is scientifically possible for a bumble bee to fly.  They would argue that the problem wasn't the bumble bee; it was the limitation of the scientific lens being used to study the possibility of the bumble bee's flight that was the problem.  Either way, the experience adds up to the same lesson: our destinies are not determined by the opinions and beliefs of others, even if those "others" are considered "experts."

I read somewhere that bumble bees are ancient symbols of good fortune, joy, and harmony.  Like a magical gift, bumble bees remind us we can accomplish what seems impossible while buzzing about in order to awaken us into the moment. 

Bumble bees help us see that life is sweet and filled with brightness, color and light - just like Tatiana, my own little feisty bumble bee.
]]>Fri, 03 Sep 2010 14:26:59 -0800http://www.perfectlittleme.com/1/post/2010/09/cutie-patootie-with-a-busted-booty.htmlSo, Tatiana has a follow up appointment with her general surgeon coming up – you know, that great surgeon who gives off a genuinely kind energy, which I really do appreciate.  Every month we have to go in and see how her bottom is healing.  It’s not a pleasant procedure, and I’m sure she’ll love me for putting all of her business out there for the world to read when she hits her teen years! 

That upcoming appointment has me thinking about a few things, as always. On some level, I've been thinking about how Tatiana being able to poo is still as amazing as the first time - and believe me, the stench is equally amazing, although extremely unpleasant!  I've also been thinking about how certain topics, especially surrounding our health and medical issues, are often kept tucked away, hidden, and silenced to a degree.  

That has me thinking back to why I made the decision to put our story out there:  I wanted to share our story to inform our family, friends, and supporters of Tatiana's condition and progress, while reaching out to others who could benefit from our story in so many ways.  I remember my sister asking me if I planned on filtering what I was willing to share, if it was okay to tell others about our story, and if she could share with them where to read more.  I was thankful that she had the courage to ask what so many others were thinking.  I decided early on to be as transparent as possible about my feelings, Tatiana's conditions, and the journey that has been quite a ride - emotionally, spiritually, and physically.  I stand by that decision, but I do wonder if there will be repercussions of exposing pieces of myself, and of my family, through such an open and public domain.  It’s a risk I’m willing to take.   

 If you haven’t been following us from the start, allow me to fill in the gap: Tatiana didn’t quite have an opening for her poop to leave her body, so one had to be surgically created for her.  From what I understand, she had the right piping, but no exit.  Sounds like a joke, I know, but it really did happen – and apparently, it happens in 1 of every 5,000 births.  The fancy terminology is “imperforate anus.”  Well, she had her surgery to open up her bottom sometime in August of ’09 and her colostomy (an opening created on her left side to let the poop out) was closed up in January of ’10 (during this surgery her intestines were reconnected to allow the poop to travel to her fully functioning bottom).  It was a great feeling when she was finally able to poo into a diaper, but then came the aftermath. 

Her body had to learn how to adjust to these “normal” bodily functions.  I remember she had such a hard time, and she would get these terrible rashes.  She would wring her little hands in pain from the effort of trying to push waste out from her body.  I felt like we tried every diaper rash ointment and home remedy you can imagine: Triple Paste Medicated Ointment, Boudreaux's Butt Paste, Aquaphor Baby Healing Ointment, Vaseline, Balmex, Desitin, Burt's Bees, Aveeno Diaper Rash Cream, A+D, Mustela Stelactiv, ConvaTec  Aloe Vesta, Critic Aid, Ilex Paste, and several combinations thereof, as recommended by the docs of course (including a combo of equal parts gyne-lotrimin, zinc oxide rash ointment and an antacid, like Mylanta); arnica, chamomile, aloe vera, and cornmeal/corn starch . . . that’s a pretty desperate list.  The rash would just fade a little and come back full force.  

I felt so bad for her, and at times I caught myself wondering if we would have been better off leaving the colostomy intact. 

It turns out that aside from the skin on her bottom having to adapt to her new “abilities,” her poop was impacted, or built-up creating a blockage.  This blockage was creating some issues for the on-going poop that she was trying to push out, and it basically had to make its way around the blockage.  I guess that would explain the sticky, tar-like consistency and the horrible stench of her bowel movements!  Her skin was adapting, but it was also being severely irritated by the residue of the old poo.  Go figure.

Her surgeon recommended we try a pediatric enema – fun times.  As unpleasant as that experience was, it cleaned her right out and within a day or so, the rash started to go away.  If you don’t know what an enema is, it’s basically “the injection of liquid into the rectum through the anus to [cleanse and stimulate] evacuation of the bowels.” 

Exactly.

But, it worked wonders.  She was doing so much better after that . . .  and then, a week went by, and we were back to square one.  Oh, the uncanny frustration! 

I think we were both wringing our hands at that point.  We talked to the surgeon and he recommended we try giving Tatiana MiraLax, a polyethylene glycol 3350 powder, which “draws water back to your colon, replacing what was lost, and allows you to have a normal, easy and complete bowel movement. As it works, it provides more comfort and less straining without uncomfortable side effects.” As your poo makes its way out of your body, moisture is drawn out from it.  In Tatiana’s case,  the longer the backed up poo stayed stuck in there, the more moisture would get drawn out from it, and the harder it would be to get it out.   Kind of like a violent cycle.

The MiraLax worked like a charm, for the most part. 

We still have some moments, like discovering there was a recent recall on MiraLax.  I checked, we’re fine. 

Or, like this past week.  Tatiana is having a hard time pooping again.  I’m sure we’ll address it at her upcoming appointment.  For now, I’ll just have to adjust her MiraLax dose to help her body adapt and get through it. 

Adapting . . . and getting through it . . .  sounds like so many other aspects of this experience.  It certainly has been a journey with so many lessons in flexibility and no shortage of surprising twists along the way, but at the end of the day, there is always a silver lining: we get to experience the joy of Tatiana in our lives.]]>Tue, 17 Aug 2010 08:26:53 -0800http://www.perfectlittleme.com/1/post/2010/08/hope-floats.html You would think I would have marked this day on some calendar, or perhaps kept a mental engraving of sorts lodged in this brain of mine, but no.  I must have blocked it out.   I know it was October because that falls six months after Tatiana was born, which is more or less when Tatiana would have had her six month follow up with the NICU.  I do remember it was a beautiful day in October, not too hot, not too cold.  The trees were colored just right.  I knew the moon would look gorgeous that night.

It was just the two of us.  Me.  Tatiana.  On our way to the hospital.  My husband was somewhere in the Southwest - he’s a long haul truck driver.  My four year old was with the sitter.  I naively showed up thinking “this appointment is so not a big deal.”  I mean, really, I have seven siblings and I’m the oldest, so I am well aware that everyone develops at their own pace.  I didn’t think I had much to be concerned about.  She was crawling, rolling, slobbering, doing what babies do.

Here we go.  Tatiana is very particular.  Both of my daughters are.  I always say they are my little divas.  Well, Tatiana was having a little diva day and was not in the best mood.  I’m sure somewhere in her memory she connected the smell of the hospital with so many things she would rather forget.  Yes, I’m one of those – you know, those people who think babies are keenly aware of their surroundings and conscious of more than we would like to give them credit for.  Well, since she didn’t have her full diva nap, I knew this appointment was about to get slightly more challenging than I anticipated. 

We were directed into a hospital room converted into a special room for observing and assessing developmental milestones.  The nurse practitioner was very warm and made me feel a little more at ease – especially since I remembered her from the NICU and she was one of the folks I felt was always on top of her duties making us feel comfortable, looking out for Tatiana, etc.  She started asking me all these questions: Is she rolling left or right?  Can she roll over? Do you put her in an activity saucer?  Does she stand? Does she reach for her food?  Can she grasp objects?    

I know.  None of these questions seem like a big deal.  Well, I felt myself starting to sweat.  I felt like a terrible parent.  How could I not know the answers to some of these questions?  Why was I being so protective?  Was I supposed to give her cheerios and treats?  Was I supposed to force her to stay in an activity saucer even though she seemed to hate being confined into a space?  How was she supposed to bounce if her feet were too short to reach the ground?  Was I delaying her development?  I felt the panic start to set in. 

More questions:  Does she always fuss like that?  Is it difficult to console her?  Does she always cross her legs? 

What?! Does she think something is wrong?  I see the look of concern on her face. 

Then we get to the topic of this tethered cord.  At the time, I didn’t know much about that, except that I hoped it wasn’t an issue.  Tatiana had an MRI in August following one of her surgeries to see if she had a tethered cord.  All I knew then was that there was a possibility that she had a tethered cord and that whatever that was might have an effect on her central nervous system and bodily functions.
 
I know I asked something along the lines of what I should be concerned about.  I know she meant well, and I appreciated that she was very candid with me, but I was definitely not prepared for what I was about to hear.

She may never walk.

I held my breath and prepared to exhale.  I stood there holding Tatiana, and responded very calmly, Oh. Okay.

Tatiana was still being a little diva, making a fuss.  Maybe she was objecting. I don’t know.        

The nurse asked if I needed a minute.  I did.  She left the room.  I sat down.  I held my baby tightly, close to me.   I took a few deep breaths.  I tried not to cry.  I had to be strong.  A few tears escaped me.  Okay.  It’s okay.  Another breath.  The kind that you struggle with, shaky, feeling like you don’t have enough space in your lungs to even breathe.

The nurse came back in.  She told me she was going to follow up with Tatiana’s general surgeon to express her concerns.  I thanked her, and I walked out to the car with my head held high, as calm as I could be.  I put Tatiana in her car seat.  I got myself in the car and I buckled my seat belt.  I held on to the steering wheel as tight as I could.  And I cried.  I cried from the depths of my soul, asking myself why, trying to understand, trying not to imagine all of her “nevers.”  I felt so defeated and angry. 

I called my husband.  For a while, I couldn’t speak.  Finally, I found the words to tell him what the nurse practitioner had just told me.  I wondered if it was harder for him, having to be away, almost isolated, having to fully absorb it all.  He was quiet for a moment, and when he finally did speak I heard fear in his voice but his words were accepting – not of the situation, but of the opinion and that it was just that: an opinion. 

We both wondered if the system was set up to force us through a constant state of turmoil.  We would get through a challenge, and feel a sense of peace and acceptance, only to be slapped with yet another round of difficulties.  It felt like we were the objectives of a twisted obstacle course; right when we could get back on our feet, we were being knocked back down, tested to our limits – physically, emotionally, financially.  I’m sure the medical professionals thought they were doing us a favor by giving it to us in spurts, making it manageable, but, from our perspective, it felt like torture, a vicious test of faith.  

I felt so emotionally heavy when I left the parking lot that day, and for so long afterward.  

I remember I shared this information with my family and a few close friends.  It was their optimism and faith that got me through that time, along with my husband’s knack for linking the practical to what may seem insurmountable.  The humor, the words of encouragement, the stories, the alternate possibilities from what I had imagined in that moment made it easier to accept our reality and to hope for other outcomes.  In the end, it’s that hope that keeps us afloat.
]]>Thu, 22 Jul 2010 00:00:00 -0800http://www.perfectlittleme.com/1/post/2010/07/shaking-the-leopard.html(NOTE:  May contain verbiage that is offensive to those with a weak stomach or easily offended by nature.  Still can’t resist?  Then be advised, you may want to skip paragraph 3.)

A friend of mine told me about how animals in the wild will shake after they’ve escaped a dangerous situation.  It’s their natural way of coming down from the stress of fighting for their lives.  I guess you could say it’s a coping mechanism of sorts, one that allows the body to respond to the adrenaline in a way that brings the animal back to its baseline.  In some ways, I guess you could also say it’s better than a coping mechanism because it liberates them from perpetually carrying that stress.   

I found myself in the emergency room this weekend.  I’m a bit of a hypochondriac. You can imagine the trouble that can get you in when Google is just a click away.  Well, I thought I might have overdone it with the sweets and actually made myself puke from too much sugar.  Pretty ironic, considering I just went to a sugar awareness workshop at work.  Then again, I can be pretty masochistic.  Maybe it was slightly intentional on a subconscious level.  

After a second puking episode where I projectile vomited all over the restroom (and yes, I even took a minute to clean it up with Clorox right after), and realizing I had a fever and abdominal pain, I started to really freak out.  Then, Google added another layer of paranoia: What if it was my appendix? What if it was my gull bladder?  Or my kidneys? Or pancreatitis? Or a heart attack?! I think I puked more in those few hours than during any other moments in my life combined – and that is most likely not an exaggeration.  

I don’t know, but back to the emergency room . . . even on morphine, I couldn’t seem to keep my mind from wandering back into the past year.  Would that be some kind of post-traumatic stress related tendency?  Hmmmm. I wonder.  

Well, there I was in the emergency room, on a hospital gurney, waiting to find out what the heck was wrong with me.  You see, this past year I’ve been so focused on making sure my kids were taken care of that I neglected my own health, for the most part.  Plus, you know, I have Google and I love to self diagnose. 

I get wheeled in for an ultrasound to see if they can find anything wrong with my stomach and/or kidneys.  You’d think this wouldn’t be a problem, but there I am in the middle of the ultrasound.  The technician/nurse excuses herself for a minute.  I start to freak out.  There’s something about this not knowing and the positioning of my body (laid flat on a hospital bed) that takes me back to that moment right after my cesarean.  Funny how we think we live in linear time, but somehow its all circular.  I start feeling like I’m reliving that moment right before I found out that Tatiana was different.  That same moment when I felt that something was terribly wrong and I begin to sob, deep sobs.    

I take a deep breath and I bring myself back into the moment.  The nurse reenters the room and resumes the ultrasound.  Nothing.  Then, she wheels me back to the emergency room. I try not to freak myself out with all the what-ifs and start counting the what-ifs of a different variety: What if it was just a virus?  What if it was just food poisoning?  What if a little more than one glass of wine really was too much alcohol for me?  Thank goodness the morphine knocked me out for a good while.  I think I would have driven myself crazy. 

I was discharged from the hospital after a few hours with no clear diagnosis.  Frustrating.  They sent me home with a prescription of anti-nausea medication and Prevacid.  I was tore up for another day and half – mind you, I am thirty years old and I don’t think I’ve been that sick in over two decades.  I tried to follow the discharge instructions, but one little detail kept tugging at me – they didn’t know what was wrong with me.  How was I supposed to put total faith in guesswork?  I don’t care how educated your guess is – if you’re asking me to put chemicals into my body, there better be a good amount knowledge and a basis in fact for that recommendation to be taken seriously.  After a 3 day long migraine, I decided to throw the prescription out (against hospital indications).  It just wasn’t worth not being able to function.  I did the same with Tatiana’s acid reflux medication a few months back.  Did wonders for her too, but I’ll save that for another time.  (Spare me the lectures and at least read up on the whole story before passing judgment.)

All of this made me think about how strong Tatiana is and of how far she’s come in the past year or so.  It added another layer of perspective into the experience, of her mark on the world, and of how she’s shaped me in so many ways.  

I started thinking about how right before my hospital visit I was finally feeling like I could breathe, of how everything seemed to be coming together, finally.  A lot has happened in the past two years, aside from Tatiana making her mark on the world.  I was looking forward to my Sunday of doing absolutely nothing.  The stress was starting to lift, and I could relax.  And, that’s when it hit me, and my body rebelled.  

I guess I forgot to shake the leopard.

 ]]>Thu, 17 Jun 2010 23:58:57 -0800http://www.perfectlittleme.com/1/post/2010/06/so-many-memories.html Multi-complex congenital abnormalities, Tracheo-esophageal fistula, esophageal atresia, blind pouch, imperforate anus, tethered chord, fatty filum terminale, pneumothorax, gastro-esophageal reflux, caudal regression, anorectal abnormalities, general pediatric surgeon, anaesthesiologist, radiologist, urologist, cardiologist, ear nose & throat specialist, audiologist, neurologist, physical therapist . . .  That’s just a sampling of the litany of terms that have been used to describe some of the things that have gone off kilter with my child’s little body, along with the fancy titles of all of the wonderful medical professionals that she’s visited along the way.  If it weren't for her scars and all of her follow up appointments, it would all seem like a distant memory - almost like a dream . . . or a nightmare, depending on how you look at it.

There are so many memories of that first year.

I remember being forced to leave Tatiana at the hospital after my recovery.  I remember feeling like I had been robbed of the joy that rightfully belonged to me in those early stages – not by anyone in particular, but by the circumstances that not even medical research could explain . . . and by insurance policies that are, in short, not very people-oriented.   I remember being exhausted and overwhelmed, as my body tried to repair itself from the cesarean and I tried to divide my time between visiting Tatiana at the hospital and caring for Natalia at home.  I remember feeling guilty and frustrated. I remember our economic situation forcing my husband to be apart from us because he had to take work in other states.  I remember feeling like there was no one who could truly understand what I was going through.  I remember wondering how my then 3 year old handled all of it -  there were no big sister books to prepare her for all of this.  I remember Tatiana’s swollen little face and wondering how she could look so different from one day to the next.  I remember hating that I had to leave Tatiana every evening, and that I would sometimes cry myself to sleep. 

I remember people asking about Tatiana's condition and I remember their faces when they heard the watered-down cocktail version - they were faces of deep sadness, and some couldn't hold back the tears.  I remember staying composed through all of this because really, there was no other choice for me.  I remember people asking me "How do you do it?" and honestly, I still don't have an answer.

But, I also remember those moments of happiness like being grateful that I could just sit there and hold my baby for hours at a time (after not being able to even take her out of her incubator for over a month).  I remember the first time I saw her without tubes connected to her face and of how she would react to my voice.  I remember how happy I was when I finally got to take her home.  I think it was those moments that helped me keep it together.

Throughout all of this, I also remember refusing to remain a participant of my circumstances.  I began putting this website together, and I put as much energy as I could into other efforts that I considered “productive.”  Part of that effort included coordinating a fundraiser to help cover portions of the costs that the insurance company denied coverage for, participating in the March for Babies, and learning how to make crafts I could sell to supplement our income - those medical bills are still haunting me. 

I learned quite a bit from keeping myself busy.  I learned that there are several positives that came out of this situation.  I learned about my strength as a mother and an individual; I learned I have the powers of a magician when it comes to time and money; I learned that strangers could be moved and inspired by my words and by Tatiana’s story; I learned that some people will lend a hand to help you in times of need, while others will kick you when you’re down. 

More importantly, I was reminded of the monumental difference we can make in each others lives.  I believe that the power of positive energy, prayer, good will, and physical effort all played a role in Tatiana’s recovery.  And, I am thankful for the tremendous show of love and support we received, and continue to receive, from family, friends, and even strangers.

]]>Fri, 19 Mar 2010 00:00:00 -0800http://www.perfectlittleme.com/1/post/2010/03/the-four-letter-words-that-never-sounded-so-nice-until-today.htmlI’m sitting at the hospital.  We’re in our private room with the baby.  She’s sleeping.   She is serene.  She is finally comfortable.

The TV is on really low in the background.  There’s not much going on, so I browse the Internet aimlessly.   I’m grateful that Tatiana is resting.  

I think about how she’s such a little rebel with good instincts.  I think about today’s personal revolution to get rid of her NG tube  - as in “nasogastric tube” if you want the full on medical term.  It’s basically a plastic tube that goes in through the nose, past the throat, and into the stomach.  It can be used for quite a few different reasons, but in Tatiana’s case, the tube was in place to drain her stomach and prevent her from vomiting, following yesterday’s surgery.   

The results of that revolution: three points for Tatiana; zero points for the NG tube.  It only took her a split second after she actually went for it.  And a split second later, she seemed instantly relieved.  The tube was irritating her throat and causing her constant pain.  As soon as she yanked it out, she babbled sounding relieved, and I’m sure she would have done a little dance if she weren’t so strung out from the morphine in her system.  

It wasn’t the first time she pulled such a stunt; she’d done the same thing twice during her stay in the Neonatal Intensive Care Unit back in her first six weeks of life.  

I felt like I had been nagging different nurses all day about the tube.  Her surgeon had come by earlier to check on her, and he mentioned the possibility of taking it out  - especially if it continued to drain such a small amount of fluid.  

I guess you could say she was being proactive in her care.

Well, after that, the nurses relocated her IV, which was also causing her some grief.  And since then, it’s been smooth sailing.  Now, it’s just a waiting game – we have to wait to see when her bowels will wake up and show us some proof that everything is in working order.  What exactly does that mean?  Well, it means we have to wait and see if she can actually poop out of her bottom without any major issues.  Fun stuff.  

I’ve been thinking about what that would be like.  I know, thinking about poop – so short of glamorous.  Still, that would be huge for Tatiana, a child born without the natural ability to do what so many of us take for granted.  Up until this last surgery, she was pooping into a colostomy bag out of the side of her belly.  

So, here I am.  Typing.  Checking my stats.  Looking up other mommy blogs. Debating whether I’m going to stick to my guns and resist Twitter or throw in the towel and tweet ‘til the cows come home.  

It’s so quiet. I can’t decide whether the humming of the air conditioner is soothing or annoying, but its there.

It’s 10:24pm.  

Suddenly I hear the faintest little sound. Trrr.  

“Did she just fart?!”  I ask my husband.  

We look at each other stunned, excited.  I’ve never been so happy to hear someone pass gas, break wind, cut the cheese, flatulate . . . toot.  

She’s still sound asleep. Relaxed.

“Wait.  Did she just poo?!”  

“I think she just poo’d!”  

I check her diaper.  “We’ve got poo!  Yay, Tatiana we’ve got poo!”  My husband and I are grinning ear-to-ear.  

I change her poo-soiled diaper for the first time in her life, and I’ve never been so happy to deal with someone else’s crap.  ]]>Thu, 18 Mar 2010 09:50:32 -0800http://www.perfectlittleme.com/1/post/2010/03/its-like-ten-thousand-spoons-when-all-you-need-is-a-knife-isnt-it-ironic-dont-you-think.htmlSo, being the night owl that I am, I couldn’t sleep last night.  Funny how I was completely exhausted at about 10pm, and there I was - close to midnight with a bizarre surge in energy.  I guess I shouldn't be too surprised by that because it is, after all, a regular occurrence.  I knew I should have been getting some rest, but my body and my brain were not cooperating.  I kept trying to imagine how I would react to the absence of Tatiana’s stoma, and I started to feel that nervous internal energy – the kind that could fuel a mental marathon.  In some ways, it’s a nice feeling, but it was making me anxious and it was preventing me from getting any sleep.  

Well, that anxiety pales in comparison to the anxiety I felt this morning.  I am pretty sure I woke up to experience a full-fledged panic attack.  

I woke up to my phone ringing at 6:27am. My heart dropped and I felt the most extreme panic I’ve ever experienced in my life.  This is by no means an exaggeration – I’ve been calmer in major emergencies.   I think I might have even felt more panicked than when we first found out about Tatiana’s condition. I’m pretty sure the first full minute after opening my eyes and shooting out of bed was filled with all of the curse words imaginable.   My body was shaking from the adrenaline.   This was a nightmare – one I’ve had so many times before, but now it was actually happening in real life.  I have to admit there was something funny about how close this was to those horrible dreams.  

I ran downstairs frazzled. “Wake up!  We were supposed to be at the hospital 15 minutes ago!”  My husband had stayed up with Tatiana most of the night.  Part of her preparation for the surgery required that we give her only clear liquids 24 hours before and nothing at all after midnight, so you can just imagine how unhappy she was about that.  

I ran back upstairs.

Stay calm, stay calm – I dialed the hospital.  I don’t even know what I said, I was freaking out to such an unfamiliar degree.  All I remember was the person on the other end of the line telling me that they would let the surgeon know and that they would see us soon.

Oh crap. We have to make it.  We’ve been waiting for this surgery for so long.  I don’t know if I can take another disappointment on this one, and this one would involve an entirely new level of self-blame.    

I had set four alarms.  Unfortunately, none of them went off.  How that happens, I have no clue.  I am pretty sure it has something to do with the silly things that happen to me and with the universal plan that puts me on track to being late to my own funeral.  I’ll admit, I was late to my own wedding, but I have never been late to any of Tatiana’s surgeries – until today, that is.  We were supposed to check her in to the hospital by 6:15am.

I don’t even know how we managed to get out of the house so fast, bring everything we needed, and have my 3 year old ready for daycare.  I guess it was a good thing I had packed the night before.  

My sister found humor in how much the chaos of this morning resembled the scene from the movie Home Alone.  She wasn’t too far off the mark, but at least we remembered to bring the baby!

We made it just a few minutes past 7am.  And thank goodness, they were still able to admit her for surgery.  Phew!
]]>Sun, 14 Mar 2010 00:00:00 -0800http://www.perfectlittleme.com/1/post/2010/03/flash-forward.htmlI am notorious for not answering my phone.  Much to my dismay, my phone has had this glitch that delays my incoming calls and even though this glitch has caused me ongoing frustration, I haven't done much about it.  Not that high on my list of priorities, I guess.  There are those rare occasions, however, when the magical phone fairies carry the call through.  Last Wednesday was one of those days. . .

"How soon would you like to schedule Tatiana's procedure?"

"Um, would you like me to bring her in today?" I responded - half joking, half serious.

"How about next week?  Would Thursday work for you?"

I almost jumped out of my seat from the sheer excitement of the news.  We've been waiting for this surgery for quite a while now.  It’s the one that would close up her colostomy and hopefully, allow her to poop like any other normal kid.  What exactly is a colostomy?  Well, a colostomy is an abdominal opening that is created by bringing the intestines out through the skin and then sewing the intestine to the skin to create a stoma, or a little opening that in this case, provides an outlet for Tatiana’s poop.  It’s funny how we can take those bodily functions for granted; at least I never gave it much thought before Tatiana was born.

When we first discussed how long Tatiana would have her colostomy, we were working off of a 4 to 6 month timeline.  Back then, I felt like that was going to be an eternity.  I thought "Well, it could be worse.  Some kids have to have their colostomy for life. Who am I to complain about a couple of months?"  That thought has become something of a mantra in those times when I feel like I just can't do it anymore.  And even then, I'm embarrassed by those moments of frustration because they remind me of how weak and shallow I can be.  Things could be worse and yet, in those moments of frustration, I feel like this world is caving in around me.  I try not to think about what must be going through people's minds when they see her little pouch of baby poo.  Sometimes, the comments are cute and harmless: “It looks like split pea soup” and yes, sometimes, it does.  But it’s those silent stares that I wonder about.  They don’t bother so much anymore, but I still wonder.

We had originally scheduled this same procedure for some time back in December, but if this past year has taught me anything, it's that I should always be open to rolling with the punches.  The surgery was postponed back then because Tatiana needed another surgery that we hadn’t quite planned for.  Thankfully everything turned out fine.

I’m looking forward to the surgery.  I’m nervous, excited, and anxious. 

I think about all of those moments when I’ve had to change Tatiana’s colostomy bag; I think about those moments when I’ve sat there staring at my hands, covered in my daughter's blood and crap, and I can’t help but think back to those first days in the hospital.  After so much of the same - blood, crap, sweat, and tears -  we welcome the change.  We've come a long way, and we have much to be thankful for.
]]>Fri, 24 Apr 2009 00:00:00 -0800http://www.perfectlittleme.com/1/post/2009/04/the-diva-complex-tatianas-1st-surgery.htmlI remember it felt like an eternity waiting for Tatiana to come out of that first surgery.  

It was April 23, 2009.

There we were, my husband and I, waiting in the hospital room of the mother and baby unit, not even a full day after Tatiana's birth. I remember feeling angry that I had to be surrounded by all these mothers with their crying babies.  It was torture.  It was a constant reminder that things weren’t as they should be – at least that’s what I felt back then.

We had to sit and wait.  

I’ll admit, I can be a little impatient and neurotic at times, and I can let my imagination run wild with a list of situations gone wrong.  I think it has something to do with watching way too many hospital dramas and reading far too many tragedies.  It might also have a bit to do with my personality: even though I always hope for the best, I tend to prepare for the worst.  I can’t help it.  I like being prepared.  These quirks combined with the level of frustration, helplessness, and impatience I was feeling could have probably driven me insane. I tried to keep my mind preoccupied so that I wouldn’t drive myself crazy with all the what-ifs of this situation.  I still wonder how it is that I found the strength to hold it together.  

So, there we were, my husband and I.  Waiting.

We talked about how and when we were going to share all of this with the world – and by the world, I mean our extended family and close friends.  Up until that point, the only people that knew of Tatiana’s birth and her complications were our immediate family members, and even then, not all of our siblings had been completely informed.  I guess we relied on our parents to share the news.  It never occurred to me that they were experiencing some of the same pain and confusion that we were feeling.  We wanted to give ourselves the time to absorb and process everything.  We knew people would have questions, but we didn’t have answers.  We were still trying to understand everything, and more importantly, we didn’t have the energy to relive the much too recent trauma of the experience.  We needed the time to be “alone” with everything.

The phone rang.  It was the family pediatrician, the same kind and caring pediatrician our family has been entrusting with our care since I was ten years old.  Here we were, nearly two decades later.  I don’t know if she realized how important her call was to me.  Her concern helped me come to terms with the idea that Tatiana was in good hands –not only because she had an excellent surgeon, but because she had people involved in her care who cared enough to provide that personal touch.

I don’t remember her exact words, but they were something like, “Tatiana has an excellent surgeon.  People fly their kids in to have him work on them, and if I had to have my kids on the table, he would be my first choice.”   I’m pretty sure she also mentioned that he had been featured on Oprah and the Discovery Channel.   Her confidence in his abilities provided some relief and the fun facts made me laugh as I thought, Wow.  This little girl is going to be special.  She came into this world screaming, demanding to be noticed, rebelling against the ‘natural’ way of doing things, and now, she’s got a claim on a world-class surgeon. Pretty hefty bragging rights when you add all of that to the broader context of the conditions she was born with.   

Her words made the time more bearable somehow.  

I don’t remember how many hours later it was that the phone rang again.  “The procedure went well.  We’re just waiting for Tatiana to recover for a bit.  We’ll call you as soon as you can see her.”

I remember the pain in that moment, but I also remember the hope, and I realized that even though I had been telling myself to breathe, it wasn’t until then that I truly exhaled. ]]>