Cardiology appointment

A few days ago I got a letter in the mail. It was from the Children's Hospital. For some reason I assumed it was a bill (even though we live in Canada and don't have to pay for anything medically). When I opened it, I discovered instead, that it was an announcement of Puck's next cardiology appointment.

They plan on doing an ECG and an echocardiogram, along with a half hour consult with his cardiologist afterwards. Seeing it all in writing made me gasp out loud. I don't know why it would surprise me. I knew he was having another appointment in early January. But I guess I was expecting a quick 20 minute echo like the last one... To see they are doing it for an hour, with a 20 minute ECG to boot... made my stomach turn.

I guess it really struck me, once again, how serious his heart defect is. I feed him, bathe him, change him, cuddle him, and other than the medicine I give him twice a day and the regimented feedings...it all seems so natural...so typical. I can almost forget how sick he is, and then moments like the letter just hit me extra hard.

I know his two month appointment is very important since heart surgery for this defect is performed between three and six months...but it's hard to imagine getting anything but good news. If we go into that appointment expecting that the holes are growing over only to discover they will be scheduling us for a surgery date...well I don't know how I'm supposed to digest that...how I'm supposed to handle that.

How can anyone expect a mother to deal with handing over their child to a perfect stranger whose job it is to slice said child open, crack their ribs apart, and stop their heart in order to repair the defect. How am I supposed to accept that my child's heart has to stop...that essentially he has to die...in order to save his life.

I just can't prepare myself for the horror of it. I can't believe that he will need surgery because the very thought of hugging and kissing him, and saying goodbye while they wheel him into the OR seems preposterous...torturous. How can I do that? How can I ever let him go knowing there's a chance...however small...that it could be the last time I ever feel his warmth next to mine?

How do I sit there for endless hours wondering if my son is alright? Wondering if there's been complications? Wondering if the surgery will in fact fix him? I know that his defect is notoriously difficult to close. I know that there can be residual holes, and that sometimes a second surgery is needed. I can't imagine ever having to do it once...but twice?

I know I'm getting ahead of myself. I know that January may come and we may get wonderful news. I guess my pessimistic side is trying to caution me, trying to force me to prepare. And yet I know...preparing for something so...unnatural...just isn't possible. So why worry?

Because I'm a mother...because I love him more intensely than my instinctual need to breathe.

Toddler Language

My son Gabriel is finally speaking in sentences regularly. I believe his vocabulary is now at an acceptable level which is a relief considering all the other things going on in our house right now. Although his vocabulary is now beyond a word count it's still somewhat indecipherable to people who don't know him. It's frustrating for Gabe and somewhat embarassing for me (and not in the way you would think).

I'm not embarassed that my son is speech delayed (his prematurity caused this)..what can be embarassing is trying to explain that my son did not just say what you think he said...seriously...I swear. I don't blame you for hearing what you heard. I've fallen for it as well and scratched my head at his foul language and where he could have picked it up. The first time he ever "swore" he was watching "Harry and his Bucket Full of Dinosaurs" and during his show he had hit his sister, so I was putting him in time out. He refused to walk so I had to carry him and the entire way there he was yelling and kicking while screaming "bull SHIT"... I looked at his father accusingly who just shrugged and stated "I don't say that"! Just as I was about to retort "Oh Sure, so where did he learn it from?" (because I know for a fact I have never said bullshit around him), I noticed that he was pointing at his show. It dawned on me that maybe he was trying to say "bucket" and and so I asked him!  "Uh huh, mom" he replied, "Bull shit".

Many other words can be misconstrued or are just completely indecipherable. The one thing he can say fairly clearly is "bum hole..." and unfortunately this is my fault. After giving birth to Puck I have had some...issues...with my bum hole. As any mother knows...hemorrhoids can be a pain in the ass (pun intended) after birth.  Well i'm extremely 'lucky' because I happen to have internal ones. So my dear husband went and bought me hemorrhoid suppositories (which I still have not had the courage to use).  The day he bought them I exclaimed "They look like bullets! I'm not sure I want to stick this bullet up my bum hole". Well Gabe took that phrase and ran with it. Now if he farts instead of saying "Oh! My bum", like he used to (and as though his ass were speaking and it was shocking to him), he now adds hole to the end of it. "Oh, my bum hole".  Awesome!

On one hand I'm relieved that Gabriel is speaking more, while being mortified that he is speaking more...Not only do I have to watch what I say...I have to decipher what he's saying because it's never what you think it is...or it's EXACTLY what you think it is...

Juggling

I know I may sound like a broken record constantly talking about my son's heart defect, but it has become my life. His health is my primary concern. My day revolves around him. He needs to eat every three hours which means I pump every two (he's too weak to breastfeed). He needs his lasix (diuretic) twice a day to keep his breathing regulated, and I need to sterilize his soother and bottle nipples constantly. Hand washing has taken on a whole new level of compulsion and we are now homebound other than doctors appointments because an illness will put him back in the PICU...or worse. He has doctors appointments every week to ensure he's still gaining weight and cardiology appointments every month. Then there is the typical care all infants need (diaper changes, sleeper changes, baths, belly button cleanings...etc) On top of all that I also have two other little ones to care for. I have to find time to make their meals, get them dressed, bathe them, brush their teeth, and put them to bed. Additionally, it's also important that I keep my house clean. Overwhelmed would not accurately describe how im feeling. It's hard.

Truthfully I have no idea how I have managed all this. I'm surprised I still have the energy to blog or write about any of it. But it's the one thing I do for myself. I have this NEED to keep a journal of this journey for my kids. I need to explain to them why I haven't been as attentive as they want or need. I know they are still young and probably won't remember mommy walking around on auto pilot, or that I couldn't play cars or dolls with them because I had to do laundry, or feed puck, or pump. But I still feel guilty about it. My kids never signed on for this. No one asked them if they wanted another sibling and a sick one at that.

So I guess what I'm trying to say, Gabe and Edie, is that i'm sorry. You two are still the other half of my heart. You are still my world. And if I could split myself into two people I would in a heartbeat. I can only hope that one day you will understand. It may take until you have children of your own, especially if Puck is sick for years to come, to understand why I have had to compromise my time with you. Please know that I don't love Puck any more than I love you two, but he requires a little more attention just to keep him healthy...to keep him alive. I'm doing all this for the benefit of our family. We need him. You deserve to have your baby brother by your side for the rest of your life. I need to keep our family whole because living without any of you would be like living without a piece of my soul.

I love all of you. More than I could ever hope to put into words and I will do anything I have to in order to ensure you all remain happy, healthy and whole.

Time

Time. It's how we measure our days and our lives. The seconds tick by and we barely notice it's passage. We barely notice the years fly past us. Nothing lasts.  Everything changes. All living things eventually die. Time. It runs out for everyone. We all have our own internal clocks, tick, tick, ticking in our ears. We get so used to the sound that we forget to appreciate the moments; we forget that our time here doesn't last forever.

 In a blink of an eye my premature son is almost three years old. My 17 month old daughter is sleeping through the night and my newborn baby is over a month old. And it's because of him; because of this little baby whose barely had a chance to live, that the tick, tick, ticking of time has become noticeable again. His life, as short as it has been, has made me appreciate the little moments a little more.

And I'm sure all of you out there are saying "thank god it's not me"..."Thank god it's not my baby". Sure. Why wouldn't you? I've done it. Being relieved that it was another person's cross to bear when some horror befell my neighbour, or the person on the news, or the friend of a friend, is normal, and understandable.  It could never happen to me... Logically we know it's possible that misfortune could visit our doorstep... but deep down, in our guts, we never believe it could truly, ever happen...to us.  And then suddenly - suddenly it does. And now my life is the one people pity, and shake their heads at, and think "thank God, it's not me". And this story I thought my life could never become is being written out before me at an alarming rate.

Time is moving much too fast now. I'm painfully aware of the clock. The one that counts down the seconds we spend here on this earth. I'm aware of it because I can see it over my son's head. I can't see how long his clock is wound for, but the ticking is so excruciatingly loud. It invades my deepest sleep. Tick. Tick. TICK.

 It's true. My son's heart is sick, and his clock is ticking in my ears, but at least I'm aware of it. I no longer have the luxury of forgetting that we all have a time limit here. All. Of. Us. And who knows...my heart sick son's clock may run ramshod over yours. My husband may attend your crash scene tomorrow, or you might have an insidious disease waiting to be discovered next week. Your clock may be running down as you read this... But you don't believe that do you...because it could never happen to you...

Time. It's our greatest gift and our worst enemy.

Hormones and Normalcy

Ever since finding out that Puck was sick my world flipped upside down. I feel like the past couple of weeks I've been running from an invisible enemy that has been gaining on me. But since I've escaped isolation with him (my other two petri dishes...Gabe and Edie...are finally healthy) things have gotten back into a somewhat normal routine. One of the heart moms I have met online told me this would happen. That as far fetched as it seemed, eventually I would get used to the mind numbing fear. I have to admit I didn't believe her. But slowly I have gotten used to it. Don't get me wrong, it's still there. It still wrenches me from moments that would be a little funnier, or a little cuter, if the voice in the back of my head didn't pipe up "I hope Puck get's to do this when he's older". But all in all, the voice echoing between my ears, has been silenced with the busy of life and raising three kids.

It's nice feeling free enough to bitch about normal, mundane, typical BS. For example my dear husband has no concept of what it means to clean. He took care of Gabe and Edie for a few days (after our help left and while I was still in isolation) and when I came down the stairs one night (while Scott was putting our little sickos to bed) it looked as though my house had been used as a preschool for 30 kids...and the teacher died before he could clean up their mess. To say my excess hormones from post partum and breastfeeding didn't overtake me in a rage of tears and curses would be a lie. Scott's terror of me ensured I didnt have to clean alone...he tackled the dishes after he came from the kids rooms and saw my rage contorted face.

AND since I have been gone for nearly two weeks from my kids lives (not that they noticed) their behaviour is out of hand. Clearly daddy let them get away with bloody murder! Literally..I think they might have killed someone...probably the preschool teacher...But in all fairness he did admit that things came apart at the seams without me around (which made me feel GREAT) and he admitted that I'm the General of this household and that he's merely my lieutenant. Damn rights. Now drop and give me 20! dollars...I need a treat.

So life has become a normalcy that I can live with...which will make everyone else's lives in our household a little easier!

It's a time for miracles

Ever since the birth of my son Gabriel in 2008, Christmas has taken on a whole new, shiny veneer. It's exciting seeing Christmas through the eyes of a child - through the eyes of your own child - and this Christmas was one Scott and I were looking forward to the most. It was going to be our first Christmas as a complete family. From here on out there would always be three kids on Santa's knee, three kids to eat my holiday baking, three kids to tear wildly at the presents placed neatly under our fake, but cute, little tree.

And then the words congenital heart defect sent our world into a tailspin. Family get together's this year has been cancelled because we can't allow Puck to fall ill. Santa pictures at the mall are not going to happen either for the same reason. On top of all that the doctors also informed us that the lasix *may not* continue to work once Puck hits six weeks to two months of age. If he's going to take a turn for the worse and need more medicine or more hospital visits it's going to be at Christmas time.

So Christmas, with all it's new, shiny veneer, has been tarnished by the knowledge that my son could wind up failing to thrive right around the time Santa is saying "ho ho ho" over our homey, detached townhouse.

But I have two other children. Two other babies who don't understand any of this. They deserve a great Christmas with their new baby brother, and I am bound and determined to give it to them. So although I'm terrified that Puck's heart will hit new, all time lows this holly jolly Christmas...I can't allow that fear to ruin Christmas for Gabe and Edie. So I have talked Scott into buying a Santa suit and playing Santa for our photos this year. And I'm taking votes on what Christmas goodies to bake. And decorating the Christmas tree will be an exciting and new adventure for Gabe and his sister.  And on that very first Christmas together I plan on taking a million photos, and hours of video footage, while my kids sit on Santa's knee, eat my delicious holiday baking, and tear wildly at the wrapped presents under our fake, but cute, little tree.

And maybe...just maybe...God will see fit to grant us a Holiday miracle...and in January at Puck's next ultrasound I'll hear the words "the holes are growing over". That would be the best Christmas gift Scott and I could ever recieve.

My little warrior.

Just a quick post to say that little Preston has gained weight again! I can now relax until his next weigh in! I hope he continues to get wonderfully rolly polly! I love this little guy so much! Stay strong my little man!





A Mothers Perspective


~ by Stephanie Husted ~



You passed me in the shopping mall...(You read my faded tee) You tapped me on the shoulder...Then asked..."What's a CHD?" I could quote terminology...There's stats that I could give...But I would rather share with you...A mother's perspective.



What is it like to have a child with a CHD?

It’s Lasix,aspirin,Captopril…

It’s wondering…Lord what’s your will?…

It’s monitors and oxygen tanks…

It’s a constant reminder to always give thanks…

It’s feeding tubes, calories, needed weight gain…

It’s the drama of eating…and yes it’s insane!

It’s the first time I held him…(I’d waited so long)

It’s knowing that I need to help him grow strong…

It’s making a hospital home for awhile…

It’s seeing my reward in every smile.

It’s checking his sats as the feeding pump’s beeping…

It’s knowing that there is just no time for sleeping…

It’s caths, x-rays and boo boos to kiss…

It’s normalcy I sometimes miss…

It’s asking do his nails look blue?

It’s cringing inside at what he’s been through.

It’s dozens of calls to his pediatrician…(She knows me by name…I’m a mom on a mission)

It’s winters homebound…and hand sanitizer…

It’s knowing this journey has made me much wiser.

It’s watching him sleeping…his breathing is steady…

It’s surgery day and I’ll never be ready.

It’s handing him over…( I’m still not prepared…)

It’s knowing that his heart must be repaired…

It’s waiting for news on that long stressful day…

It’s …praying…it’s hoping…that he’ll be okay.

It’s the wonderful friends with whom I’ve connected…

It’s the bond that we share…it was so unexpected…

It’s that long faded scar down my child’s small chest…

It’s touching it gently and knowing we’re blessed…

It’s watching him chasing a small butterfly…

It’s the moment I realized I’ve stopped asking why?

It’s the snowflakes that fall on a cold winter’s day…

(They remind me of those who aren’t with us today)

It’s a brave little boy who loved Thomas the train…

Or a special heart bear…or a frog in the rain….

It’s the need to remember we’re all in this plight….

It’s their lives that remind us we still need to fight!

It’s in pushing ahead amidst every sorrow…

It is finding the strength to have hope for tomorrow.