Sunday, November 28, 2010

if I could do it over...

Dear Puck,

Today I sat here wondering how different life would be if you had been born healthy and whole. Life wouldn't have changed much for me. I guarantee you that I would have felt like things were infinitely harder and certainly more busy, but the routine and the things I took for granted...and even the complaints I had would have remained the same.

There were definitely times in my mommy life where I let frustration get the better of me. Times where I yelled "WHAT!" at the two year old who incessantly asked, "Mom, ma, mommy, mama, mum?" Times where I ignored the cries of my children as they pounded on the locked bathroom door just so I could have two minutes of peace to myself. Times where I cried from sheer exhaustion because my daughter refused to sleep without me. And there were times as a wife when I railed against the unfairness of a husband who worked terrible shifts and a dangerous job and who sometimes forgot to hang his coat up when he got home.

My complaints were so typical... and what I wouldn't give to have those complaints again.

Now my mommy life has turned into one of nurse. I count your breaths per minute and supply you with the medicine that prevents your heart from failing. How clean I keep my house or what I make for dinner, or how long your siblings watch TV for doesn't matter anymore. Every frustrated sigh, every fear, every want or need I've ever had - it's all so small now - pathetic.

And I can't help but wonder how simple life would be right now, if I only had Gabe and Edie to take care of. That sounds so horrible. But sometimes I think I can't possibly do this. I can't possibly live if I lose you. You are so wrapped up in my soul that I would never be able to entangle myself from your memory. If God takes you home I won't be left with a hole...I'll be left with that beautifully wretched piece of you, decaying me from the inside out...

So would I go back? Would I prevent a pregnancy that late February afternoon if it meant I would never have to stare that ugly, monstrous possibility of burying my own child in the face? If I could erase all memory of you and forget that you existed...would I?


Because erasing you would be worse than losing you. It would be trading your life - your impact upon this world for a little bit of solitude...and nothing is worth that price. This journey it has to mean something and I think it's just this... Love is unconditional - it is given no matter the consequences - no matter the agony it might cause. That broken heart that beats within your chest has already imprinted upon my own...

And all I have to do is close my eyes and I can call up so many tiny attributes of your being. Your hair is darker than your siblings and it grows in such a unique way, cutting across your forehead and growing over your temples. Your eyes are such a dark blue that I am convinced you will be my first brown eyed child. Your nose is petite and perfect, just like your sisters, and you have a tiny red dot on the tip of it. Your lips are like mine, full and pouty and kissable; and you have perfect pianist fingers...long and beautiful.

How could I give any of that up... even if it meant a moment of peace?

I would do it all again so I could know those things about you. Those sweet little features only a mother notices. And although my life is harder now, and sometimes full of fear... it's also full of love, and hope, and all the tiny things I now take the time to notice.

I love you Puckaroo.


Friday, November 26, 2010

To Win the Lottery.

Last night my husband and I were talking about all the things we have had to overcome as a couple since we first fell in love almost four years ago. We have definitely had our fair share of craziness! As Scott stated yesterday, "with all the odds we have managed to beat you would think we would have won the lottery by now". Looking back I would have to agree.

First of all we met on the internet. Now I'm not sure what the success rate for online dating happens to be but I'm thinking it rarely produces a couple as in love and as stable as Scott and I. And after four short months of dating we moved in together...which again is usually a death blow to most new relationships...but Scott and I only got stronger as a couple.

Approximately six months after moving in together we began to discuss babies and when we wanted to start trying. We decided to try after our vacation that summer. We had sex once at the end of July 07 before changing our minds and deciding to wait another year... only to discover we were pregnant two weeks later. The odds of falling pregnant at any given time is 25 percent...I'm assuming if you only tried once in an entire month the odds probably fall even lower than that.

Six weeks into my pregnancy Scott went on a high speed chase in the tiny town we were currently living in. The person they were chasing crashed and his partner got to the scene a minute or two before Scott did. He radioed Scott that the perp was armed but Scott's radio cut out and he didnt get the message. After pulling up to the crash Scott exited his vehicle only to run for cover as gunshots rang out over his head. If the guy had better aim...the odds are Scott probably would have been shot that day.

A few short months later at 33 weeks and 6 days into my pregnancy, I had a preterm premature rupture of membranes. This phenomenon occurs in about five percent of women.

Our son then spent 2 weeks in the NICU. During that time his main problem was eating but he thrived in every other aspect. The doctors were pleasantly surprised to discover that Gabe never lost weight, and never developed jaundice. He beat those odds and because of it was sent home four weeks earlier than expected!

Six months into Gabe's life we moved to the lower mainland for better job opportunities and wound up getting pregnant with our daughter after a drunken Halloween party. She was unplanned but totally welcome. A few weeks into my pregnancy I began to bleed. We went for an ultrasound expecting the worst (50%  of early bleeding in pregnancy leads to miscarriage). Her heart was beating and it was beautiful.

At 38 weeks my water broke before labour once again (PROM). The odds of this happening a second time is about 15%. Edie was born with an infection and spent two days on antibiotics in the NICU.

Eight months into my daughter's life Scott and I celebrated the Gold Medal won for men's hockey in the 2010 Winter Olympics! I was breast feeding at the time and still didn't have regular periods, and assumed wrongly that it would be nearly impossible to fall pregnant.

Puck was born at 37 weeks and one day, on my brother's birthday, and a week into his life was diagnosed with a congenital heart defect. The chance of being born with a CHD is approximately .4%.  He was born with the most common CHD ( a ventricular septal defect) but the most uncommon kind of VSD (swiss cheese). Only 5% of children with ventricular septal defects have the type Puck has.

From all the information I have gathered on VSD there is between a 20% and 50% chance the holes will close over on their own. Scott and I are hoping that once again we can beat the odds and Puck will never need surgery.

At this point I think Scott and I need to start buying lottery tickets on a daily basis...we might actually win!

Thursday, November 25, 2010

Swiss Cheese

Scott and I headed to Children's Hospital today to get Puck his second echocardiogram. The tech was nice if not a bit aloof and the meeting with Dr. W afterwards really helped to clarify what was wrong with Pucks heart. The doctor said that the two lower chambers of the heart that pumps blood to the body (left side) and to the lungs (right side) should be closed off from eachother. As we all know Puck's aren't. I was under the impression he only had two holes in his heart but the doctor confirmed today that there are literally too many holes to count (they call this a "swiss cheese" Ventricular Septal defect for obvious reasons). Apparently it wasn't evident how many holes there was when the first ultrasound was performed. The doctor then went on to explain that this was due to the pressure in the lungs still being high enough to mask what they call the "shunting" of the blood from one side to the other.

He explained that while in the womb the pressure in the lungs is equal because they are in water and aren't breathing air. A few weeks after birth the pressure in the lungs begins to drop and this is when most babies with a moderate to large VSD will begin to present with problems. The first symptom usually being rapid breathing (which is what Puck was rushed to the hospital for). The doctor explained that blood is lazy and will go where it is easiest. So instead of being pumped up through the aorta to the body, the blood is being squeezed through the holes from the bottom left chamber into the right and back through to the lungs. Essentially Pucks lungs were getting twice as much blood than they needed . This in turn makes the lungs work harder because now they are the equivalent to a wet sponge, essentially soaked in blood. So Puck was having to draw in breaths with lungs that were much heavier than normal which resulted in little to no weight gain in the first few weeks of his life (in fact he lost two ounces before they put him on the diuretics) due to all the calories he was burning in order to just draw a breath.

The diuretics drain the excess fluid off the lungs and treats his high blood pressure enough that Puck no longer has to work so hard in order to breathe. Now that he is breathing normally he is gaining about an ounce a day. And we have hope that as his heart grows the holes will close over on their own without intervention. This is really good news but the doctor cautioned our optimism by saying that Puck's lungs still have not reached their lowest possible pressure. This won't happen for another month. It is at this time that we will know for sure whether his congestive heart failure can be managed with Lasix (diuretic) alone. If it can't be, he said the first step is to add another medicine (he didn't say what). If that also failed to help Puck thrive then they would supplement my breast milk with a high calorie formula. If that failed to work then the next step would be a NG tube so he wouldn't need to expend any energy at all to eat; and if THAT failed then heart surgery would be his only option left. Usually if open heart surgery is needed it is performed between 3-6 months of age.

So that's the news. He's gaining weight for now. If he stops gaining, or begins to lose then we will have to add more medicine; and if worse comes to worse then open heart surgery will be performed in a few short months.

I hope it doesn't come to that. But if it does I have been told I can rest assured that it is the most performed and successful heart surgery done on infants. Somehow this does little to assauge my anxiety but at least I know there are lot's of options and lots of solutions.

Tuesday, November 23, 2010


This past week has seen me tredge through hell and back. I wandered the fields of hope and despair and have come to rest at the valley of acceptance. When I first heard Puck's diagnosis and realized how seriously sick he was my heart broke. No mother ever wants to hear heart failure put into a sentence regarding their child. And let's be honest.."heart failure" equates to death in most people's minds. The heart is definitely a necessity and when it's failing that generally doesn't seem like a manageable problem.

But the weird and true fact is.."congestive heart failure" can be managed...for years. I don't know how long I will have to "manage" his heart failure for. I don't know what the future holds. He may require heart surgery, he may not. All I know for certain right now is that he's alive, he's thriving, and my fears of waking up beside him to find he has passed away are slowly fading.

It's a surreal world I live in now. One where I find myself being thankful that the only problems with his heart is a ventricular septal defect. But I suppose I'm trying to take the advice I gave to Puck before he was even born. The reality is that life will give you good times and bad. And their will be moments where you will "cry real tears, and ache real aches, and hurt real hurts" and as much as I have wanted to skip over this period of time, the fact is it has made me stronger. It has made me a better mother. I no longer take my children's health for granted. I no longer believe "that it could never happen to me" because the world doesn't work that way. The world doesn't care if your a good person, or if the baby you are crying over is innocent and blameless. This world will give us all challenges, and it's how we meet those challenges which will define us as a person.

I told you Puck to never live in the future because we never know how far that future goes. I told you that when your moment came to grasp onto it and enjoy it while you could. So that's what I'm doing baby boy. Yesterday gave me that moment...when I saw that scale and realized you had gained weight! And so I'm going to hold onto that moment for as long as I can. Because today maybe all we have, and today you're heart is beating, and your lungs are breathing, and your body is warm and snuggable. So my moment today is going to be all the cuddles I can manage.

Friday, November 19, 2010

Yesterday, all my troubles seemed so far away...

Yesterday I took Puck to his doctor's appointment hoping against hope that he had gained weight, or at least had maintained his birth weight. So as my husband lay our squirming infant on the scale I held my breath. When the doctor read off 6' lbs 8 oz Scott and I both felt it. A swift kick in the solar plexus...Preston has lost two ounces since birth. Scott who had been filled with optimism suddenly took on a look I haven't seen. He looked desperate, and scared. A look im sure I mirrored. Since the weigh in things have gotten progressively worse, as hard as that is to believe.

Puck has been hit hard by the cold that has been circulating our house despite our best efforts to keep him well. With a head cold his breathing has become laboured once more and I'm terrified it could turn into a lung infection in his fragile state.

Today we are meeting with a new pediatrician so she can assess him and determine what if anything can be done about this new turn of events. I'm trying my best to remain upbeat but it's hard to do when I'm sleep deprived and terrified.

I feel like our lives have been put into stasis. I can't be around my other two kids because of their colds, I don't sleep much because of my worries over Puck, and my anger at the whole situation is becoming nuclear. I just want to break something. I want to scream and yell and blame something or someone. Instead I sit here and write because I dont know any other way to express such horrible emotions.

I feel so helpless. My stomach is so tied up in knots it's hard to choke down food. I eat though. I eat so I can maintain my breast milk, but truthfully I haven't felt hungry since Puck first wound up in the hospital. I wish I could see the future. I wish I knew what was coming and how to prepare. Instead I have to consider every possibility and it's killing me. I find myself taking pictures and videos of him...just in case... And just admitting that makes me cry. A mother shouldnt have to contemplate such possible scenarios. It's not fair.

But this is the hard part of motherhood. The parts you have no control over. The parts that make you break out in cold sweats and make back room deals with any and all parties. It's the desperate prayers and the quiet tears. It's the sobbing I did on my husbands shoulder this morning. It's the love you feel so deep that when it's threatened... cuts you to the soul.

Wednesday, November 17, 2010

Dear Puck.

About a week ago I wrote all about how you were turning out to be my easiest baby. I gushed about how great you were and how much you slept and rarely fussed, and how I would have to wake you to feed because you barely made a squawk. I didn't know it was because your heart was making your lungs work too hard. I didn't know you were burning too many calories and so didn't have the energy to be awake...or even to eat on time.

But it doesn't matter anymore. It all seems so trivial now. Hoping for a good baby. Feeling as though I needed an "easy" infant because I already had two young ones at home. All I care about now, little one, is that you get well. The medicine the doctors prescribed for you has finally regulated your breathing. It took three doses and one and half days but you are currently breathing normally.

So now with our new situation, and these new challenges we have to overcome, I need to make you some new promises.

I promise, Puck, that no matter how scary this gets I won't shut down my feelings for you. I won't let myself detach in anyway. You will be loved as much and even more than before. I promise never to be afraid to love you.

I promise that I will do everything in my power to get you well. I will be your champion. I will make the hard decisions. I will do what you cannot do for yourself yet. And I will never give up.

And finally I promise that your family will always stand by your side. We will all take turns holding your hand, stroking your head, and telling you how much we love you.

Love is a very powerful healer Puck. And we all adore you so much. If I could I would trade places with you. I would give you my heart. I would do what I had to in order to ensure you never had to endure such a difficult journey. But I don't have that power. As much as it kills me to admit it, I can't fix this, not without outside intervention. So I will consult with the cardilogists and the pediatricians and any and every doctor I need to. And in the end I will do what a mother does best. I will love you. Everyday.



Tuesday, November 16, 2010

Prayers for Puck

Ever had one of those dreams where things become so ridiculous that you become aware you're dreaming while you're asleep. I feel as though I've awoken in a nightmare. One I can't escape from. I can't seem to wake myself up no matter how hard I try.

My world began to crumble around me a few days ago. I noticed Puck was having real problems breathing. I googled how many breaths a minute an infant should have and it said the average is 35-45 breaths; I was counting Puck's breaths at 85-100. At first I assumed he had caught a cold from his siblings. So we phoned the nurses hotline and they told us to bring him to the hospital right away.

Scott took him and I stayed behind to take care of the other two kids. I was still convinced it was probably just a cold. After a few hours Scott called to say they had sent him for a chest X ray. When the results came back they had discovered his heart was a bit enlarged. They did an EKG and determined he had a heart murmur. It was then arranged to have him transfered to Childrens Hospital the next morning for an echocardiogram. I collapsed after taking that call from Scott. I found a quiet corner away from the kids and sobbed. Scott came and picked me up and dropped me off at the hospital. I spent the night with my little baby, praying he was going to be okay, while scared to death that he was sicker than even I could imagine.

That morning they transferred us by ambulance to the hospital. He was hooked up to monitors and his breaths per minute was ranging from 65-125. He was too unstable to move to cardiology so they brought the ultrasound machine to his room. As I sat there watching the monitor I could hear the doctors quietly talking to eachother. Words like "muscular defect" "holes" and "congenital heart defect" were used. I tried my hardest not to cry. I tried not to break down in front of the cardiologist and technicians. I wiped the tears from my eyes the second they appeared. "Don't cry, Don't cry" I kept saying to myself over and over and over. He needed me to be strong. I tried my best.

They had a meeting and came back to talk to me. They told me all the findings they had made. His heart was enlarged and he had spots on his lungs in the X ray they took. The ultrasound showed that the muscle that seperated the right side of the heart from the left has tiny little holes along it. The problem is they still don't know for sure what is causing the breathing problems. The spots on his lungs could be caused by the cold virus, which in turn is making his breathing laboured. Or his breathing problems could be caused by the right side of the heart pumping too much blood back into his lungs because the right side is a bit enlarged. All infants they explained have hearts that work harder on the right, but not to the extreme Puck's is working. Or it could be the holes that are causing all the problems. Unfortunately they just don't know what the answer is yet.

The cardiologist said that babies with congential heart defects don't grow, they will be a failure to thrive. Puck has gained weight since birth. But they don't know if it's true weight gain, or if its caused by the excess fluid accumulating around his lungs. So they have given him a diuretic to drain off the excess fluid. On Thursday the Pediatrian will weigh him and determine if his weight gain was caused by the excess fluid or not. If it is determined he hasn't gained weight since birth than it will indicate that his heart is the problem.

I feel as though my chest has been placed in a vice. Poor Puck is breathing too fast, and I feel as though I have stopped breathing altogether. I can't contemplate the worst case scenario. It's too horrible to bear. He has to be okay. His heart has to heal because if it doesn't...neither will mine.

Wednesday, November 10, 2010

A letter to my son.

Dearest Puck,

In the middle of the night on November 4th you made your way into this world. You screamed for a good hour and nothing I would do could calm you. Eventually, you tuckered yourself out and slept through the night and you haven't cried since (except for a little incident where you peed on your own face).

You are such a good baby. You wake to feed every three to five hours with barely a squak to let me know you're hungry. The last day you have been a bit gassy but some gripe water has helped you out quite nicely. So far you have proven to be my easiest baby. Unlike Gabriel I don't have any of the new mommy jitters. I don't have to worry about you being too weak to eat, or about your physical development. I don't have to see multiple doctors and nurses for assessments, and I don't have to be terrified of every cold virus that enters my home. And unlike Edie you know how to sleep! You don't cry or whine 24/7 like she did, and so far you haven't developed the dreaded colic like your big sister had.

You are my final baby. My last infant. And i'm a little sad about this. I can't imagine what it's going to be like...all your milestones...bittersweet. And because you are my last I plan on cherishing every last one of them...from the first smile to your first steps. I will celebrate these moments beside you, cheering you on, and encouraging your independence... But I promise you, my heart will break a little. I don't know what it is about my babies...but it seems you all grow up much too quickly.

You are six days old today Preston just old enough to start losing your umbilical cord. Another moment I never thought I could be sad about. But it was your life line to me for so long. Your ultimate dependence on me, and already you are telling me you don't need me as much anymore. With this very first step towards independence I feel the sudden urge to make you a few promises...

I promise that although you are my last you will be just as special as my first.

I promise that although you aren't the only boy in the house, you will be recognized as your own little person, with your own little personality.

I promise that although you won't get the one on one time like your big brother did, you will get family time, something highly cherished and revered in our household.

I promise that although some moments you will absolutely detest having older siblings, there will be moments when your sister or brother does something extra special for you. A kiss when you fall, or a hug when you cry, or a whispered "I love you" after you have fallen asleep.

I promise you that your dad will wrestle with you, just as much as he does with your siblings. He will beam with pride at every new milestone, much as he did when he discovered that we had another precious, little boy entering our busy household.

And I promise you little Puck, that I will kiss your hurts, hold your hand, and cuddle your fears away. I will love you in every way I know how. You are my last little baby and because of this you have a special place in my heart. Just like Gabriel who was my first, and your sister whose my only daughter. Each of you is special, and unique. Each of you will always be my precious, little babies no matter how old you get, no matter how independent you become. Nothing will change how I see you. I will always look at you and see that screaming little body who broke into my world and forever changed it for the better.

I love you so very much. With all my heart and soul. So grow up little one, grow up and become a daddy yourself. There is not a thing in this whole, wide world more precious than the bond a parent has with their child. This I swear, and it is the biggest promise I will make to you.



Tuesday, November 9, 2010

Preston's birth

November third came with the expectation I would have a baby that day. I had started contracting at 2:30 in the morning and continued until five. I fell asleep at around 5:15 and slept until eight without another contraction to wake me. I realized than it must have been false labour.

That morning the kids were their usual selves. Edie was cheerful and giggly and Gabe was a typical two year old (bipolar to say the least). I decided to get them out of the house and we walked to a nearby coffee shop and I treated them to orange juice and chocolate chip muffins.

That night I was tired and cranky, my back was killing me, and I decided that spaghetti would be the easiest meal to make. I chatted on the phone with my sister and complained about all my false labour and told her that I wasn't sure if I would know when true labour began. After dinner, daddy brought out a much anticipated present for Gabriel and Edie; Toy Story 3! As we sat there watching the movie I started to get contractions again. I told Scott that I was going to have a bath so I could stop the false labour and get some sleep that night.

After a few hours labouring in the bath I realized the contractions weren't getting better and in fact were intensifying in pain. That's when it dawned on me that it had to be real labour. After a lot of cursing and muttering about no one answering their phone we finally got ahold of Scott's brother and grandparents to come over and watch the kids.

We headed to the hospital and after an assessment they determined I was 4 cm dilated, 80 percent effaced, and not going home anytime soon! Soon they had me in my room where I immediately hopped into the shower for my back labour. The nurse brought me "the gas" to help with the pain and soon I was sucking back on that while my husband sprayed hot water on my sore lower back.

After a half hour the gas was making me really woozy. I told Scott I had to get back to the bed. The nurse came in during the transfer and noticed that the tank had been leaking. This explained Scott's wooziness since we had hotboxed that tiny bathroom pretty good! Scott later told me he thought he was going to pass out. After an hour of labouring on my hands in knees in the bed I requested something with a little more kick for my pain. The nurse gave me a single dose of fentanol before I told her I had to push. She checked me and I was 10 cm dilated.

The doctor was paged and after she arrived I pushed with abandon and within 4 minutes my son was born. I recieved two stitches and spent a quiet night alone with my last and final baby. And for once my little one wasn't taken to the NICU to live his first few days of life without me.

We named him Preston and we call him Puck (he was conceived after Canada won gold at the 2010 winter olympics). His brother and sister adore him (maybe a little too much). Edie throws a fit if she can't hold him and Gabe calls him "my baby Puck". He's such a perfect little guy and boy do I love him; we ALL love him!

Tuesday, November 2, 2010

37 weeks!

I made it. My body did what I believed to be impossible. I carried another baby to term. With my pelvis ground to nearly nothing thanks to SPD (symphysis pubis dysfunction), and my exhaustion hitting all time highs, I'm relieved; and done. I won't do this again. This is my last baby and I'm content with the notion. Truth be told, three kids in three years seems like a good time to end this.

Don't get me wrong, I love my kids, I live for them, but one day I would like to get back to my life, and aspirations. These babies will always be the best thing I will ever do, but i'm ready to start the mediocre, the middle of the road goals, the things easily set aside when you have a child yelling mom at you 100 times a day.

One day I would like to go back to school, take some writing courses and see where this faded dream might take me. It's already brought me here. A journal for my kids. Memories and stories that won't completely fade overtime. I like to think that some day my great-great grandchild will bring in an entry or two for show and tell. But we all hope to have a story survive throughout the generations, don't we? I know my story is already being figuratively written through the people my children will become, but I hope they can have something more literal to hang onto.

I also hope they never let their dreams fade, not until they have given it their best shot, no matter how unlikely the dream may seem at the time. 37 weeks. A huge goal I have reached and accomplished. Now in a few years when this baby is in school, maybe I will accomplish more of the mediocre...just for me.