A year ago today...

Michael had his first open heart surgery. A year ago today, he looked like this:

But today, he looks fabulous!! No surgeries any time soon and as strong as ever. A year ago today was the most terrifying day I have ever had. Though my family was there and they did everything they could to lighten the mood and support me, nothing was going to take my mind off of my precious little boy. I'm so proud of everything he has accomplished in the past year and I look forward to many more years to come. 

Michael today:

ONE!

One year ago today, I got induced to give birth to my precious little boy. I didn't know what was in store for me and my family. My perfect baby was born at 4pm and it was magical, love at first sight. February 21, 2011, is a day I will NEVER forget; it is the day our lives changed. Since that day, our lives have been full of ups and downs. Some of the downs: doctor visits, countless echocardiograms, three hospital stays, more pokes and pricks than I can count, a staph infection, and most importantly, SURGERIES. But, now I am done looking at the downs from this past year. Today is a day to CELEBRATE the most perfect blessing God could have given me and all the achievements Michael has accomplished. This year, Michael has not only fought for every day he has but he has also rolled over, sat up on his own, army crawled (so long I started to worry about his development), eventually regular crawled (FINALLY), pulled himself up to standing, walked along furniture and while holding my hands, and learned to say "mama" (his first word) and "dada". You'd never know that my son had such a rough year just by looking at him. He is PERFECT in EVERY way. His perfect little heart beats perfect, washer-sounding beats, and though sometimes his blue color scares me and the fact I can feel his murmur through his chest terrifies me, he's still here. His precious little heart is still beating. He's such a fighter and all the fight he's put into every day is finally paying off. He's getting better and for now, that's all I can ask for.

HAPPY BIRTHDAY MICHAEL!!! I love you more than I could ever put into words. 

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

Yes, I do realize I have posted 3 things in 2 days, but I was going through some old stuff and found my last two posts. I didn't write these although I certainly wish I did. Enjoy!

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 time, 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 a while...

It's seeing my reward...in every smile.

It's checking his stats...as the monitors are beeping...

It's knowing that there... is just no time for sleeping...

It's caths, x-ays and boo boos to kiss...

It's normalcy...I sometimes miss...

It's asking...do his lips 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

What does it mean to be the parent of a child with a heart defect?

It means going into your baby's room a dozen times a night just to check and see if he is breathing.

It means standing over the crib and watching for the chest to rise and fall and when you don't see it move you begin to panic and put your head down close to the baby's face to try to hear him breathe.

It means that when you don't see the chest move and you don't hear the breathing (because your own heart's beating is drowning out any other sound in the room) you put your finger under the baby's nose to feel the warm air on your finger - until you wake the baby and he stirs - and you're thankful so thankful that he's still with you.

It means waking up with a start every morning, jumping out of bed and running to your baby's room wondering why he isn't crying yet? It means feeling a huge sense of relief when he hears you and opens his eyes and smiles, It means saying a prayer of thanks for another day.

It means measuring out his medication and panicking if he spits some of it out, How much did he spit out anyway? 1cc? 2 or 3? And wondering if you should guesstimate how much more he should have and worrying about overmedicating.

It means checking his nailbeds against your own to determine how blue he is today, It means asking your husband, your mother, your sister, "Do his lips look blue to you?"

It means snuggling him in an extra blanket for fear he wont be warm enough.

It means worrying that even a sniffle could cause an infection that would harm the heart.

It means taking your baby to the doctor and then worrying that the baby will get something even worse from being in the waiting room, so it means walking back and forth and back and forth in the corridor until the nurse calls your baby's name and takes you straight back to the examination room.

It means knowing that everyday is a blessing and a gift, it means knowing that you are the luckiest person in the world just to be a parent, It means cherishing every moment, every breath with such an intensity that you feel tears come to your eyes for no apparent reason.

It means praying for a miracle to save your baby's life.

It means praying that your marriage is strong enough to endure the hospitalizations, separations, and the grief.

It means your own heart knows a pain no parent should know.

It means feeling weak and helpless and angry and depressed because your child's fate is out of your hands, It means feeling strong and determined and brave because you know you have to be.

It means your love knows new unlimited boundaries, it means your pride in your child's accomplishments is unparalleled, It means your pain has taught you a deeper sense of compassion and understanding than you ever imagined.

It means we are united by the same feelings, it means that we all know the mixed up emotions of living with death-but more importantly of living with Life.

It means that even though we are strangers we are more to each other than friends could ever be.

Just some thoughts...

Michael's first birthday is just days away. As it approaches I find myself doing a lot of thinking about the past year and how it has affected me, my life, my family, and my family's lives. I never realized how ignorant I was to birth defects until my son, my beautiful little pride and joy, was born with a very rare and serious birth defect. I, like a lot of other moms, thought, "It won't happen to me. My kids will be perfectly healthy with absolutely no problems." etc., but boy! was I wrong. It never occurred to me that infants could have a major heart surgery at just days old, much less did I ever think it could happen to me.
But it did. I did everything right during my pregnancy, thought that nothing could possibly go wrong with my little baby, but God had other plans for me, my family, and, most importantly, my son.
When I gave birth, I had no idea about my son's heart defect. All of a sudden, doctors and nurses were throwing all sorts of information at me. I can not describe how overwhelming it was. I got to hold my little boy twice in his first day of life. Most mothers get to hold their baby and love on them right after birth for more than a minute, maybe two, and most mothers unknowingly take that moment for granted. I didn't get to hold him very much throughout the first week of his life. I watched my little boy turn blue. I watched him struggle and fight for his life. I watched him get poked and pricked more times than I can count. I walked him down the hallway to surgery. I sat in the surgery waiting room with my husband and family waiting for the phone call to tell me he was okay. I saw my little boy have tubes down his throat, IVs in every limb and even his head, a drainage tube in his chest. I didn't get the privilege of watching my little boy's umbilical cord turn into a perfect little belly button. I watched as my little boy suffered, fighting a staph infection just six days after coming home from the hospital. I saw the scar on his chest and I see it every day. It is a constant reminder to me that life is so very precious. Never take any minute for granted. All those moments when you just wish the day was over or wish something were different happen for a reason. I do not yet know God's whole reason for giving me this amazing child. I do know that Michael has helped me grow as a person and a mother. He has taught me more than I could learn anywhere. He has taught me the true meaning of life and to never take anything for granted. I love my children more than words can describe. My life would be so incomplete without them <3

CHD Awareness Week

Well, it's CHD Awareness Week, so here are some facts about my sweet baby boy's CHD.
Pulmonary atresia with intact ventricular septum (PAIVS) is a condition in which the valve that allows your blood to flow from the lower-right chamber (right ventricle) of your heart to your lungs (pulmonary valve) hasn't formed properly or is closed (atresia). Michael's was closed.
In children with PAIVS, the closed pulmonary valve prevents the baby's heart from pumping blood into the lungs to pick up oxygen. Blood must be sent to the lungs by another route to provide oxygen for the newborn.
PAIVS is diagnosed by conducting a variety of tests: cardiac catheterization (a catheter is inserted into a blood vessel in the groin and is guided to the heart using x-ray imaging, this test takes pictures of the heart), echocardiogram (ultrasound of the heart), and chest x-rays. All three tests were done on Michael. He's had countless echocardiograms and chest x-rays.
A child who has PAIVS requires urgent medical evaluation once symptoms develop. There are many different treatments. Michael had a balloon valvotomy. Normally, this procedure is done with a catheter through the groin but Dr. D (cardiologist) and Dr. H (heart surgeon) did it with open heart surgery (OPS). After about 5 months, he had the same procedure done because his pulmonary valve had blockage but the second time they used a catheter, not OPS.
Some children may need a pulmonary valve repair or replacement later in life. Right now, Dr. D is confident that he can go until he's 5 or 6 before he needs more surgery. As of right now he WILL need more surgery but there is always the hope that he can bounce back and not need it at all.
As of his last cardiology checkup, he's getting better. The pressures in his heart are getting lower (which is a good thing) but only time will tell if he will or won't need surgery. I pray every night that he will keep progressing and keep getting better. He's a fighter and my little hero <3