Another one down

Mason,

It was a late night and a really early morning. We loaded you and Moms Diet Coke and we were off. A little scared and a little sad. After all you are not even a year old and already your second heart surgery.

You were kicking and smiling at 6 AM like only a little boy can, the nurses were trying to get your attention and you were just paying hard to get. I was looking at you in that big bed and remembering our CHLA day's.

I could not help but to think of how big you are how stubborned you have gotten, or you have always been, after all you made it through 2 months that would have brought most grown men to tears.

Stubborn comes in real handy when you are recovering from an operation. A part of me remembers this and thinks you will be just fine. Another still thinks that you are so small and fragile how could you possibly handle all this? But then I remember that you are stubborned and determined to do things your way.

Like when you deiced that you want some attention, you do not make a lot of noise but you will squirm kick and turn until someone comes over. Sorry i am rambling.

Your were taken into surgery and your Mon and I went to wait at the cafeteria. Hospital food, you will love it.....

So we waited and remembered where we have been and where we are now. We were finally paged and a good thing after having my third bag of Flaming Hot Cheetos I may need a future medical procedure. You are gong to love these things, Pierce does.

So the nurse at the check in station asked who we were here for and we said "Lozano" the nurse jumped right up and took us to a small room that was marked patient conference. I looked at your Mom and asked is this the type of room they bring you to tell you there was a problem? Then Mom and I spent the next 20 minutes thinking of what if's. Turns out they put us there because they wheeled you right by that room to get to your bed.

Daddy feels dumb. Everything is OK. When I first saw you with the tubes and wires my heart sank a little bit but when you opened your eyes and looked at me like you wanted to grab my glasses and suck on them. I then knew you were going to be OK.

Night is falling and we are waiting for word that we are going to take the tube out of your throat. Your Mom and I are waiting for the ENT so we can see if you breath on your own.

We do have a deal if you breath on the first try and you get a fabulous tree house that connects to the pirate ship, if that does not work for you, on the second and you get a slight smaller tree house with a zip line to the pirate ship. Third time and you get the tree house and I only give you and Pierce two soup cans and a rope. I think the first is the best choice.

You know your Mom will make me build all three. So take your time and recover. You, Pierce, Mom and I have a lot of building to do, so let go home. I love you Mason.

-Dad

A letter to Mason

Dear Mason,

In December I started this blog with a letter filled with my fears and hopes for you. So much was unknown then. So many unanswered questions. I was ready to get going and face our future and just know. But at the same time I just wanted to stay where we were with you tucked safe inside me.

So much has happened since then.

So much has changed.

You have gone through so much.

We have gone through so much.

We've learned, and experienced, and grown, and fought, and won, and we have become a family.

On the 26th we will be bringing you to Loma Linda hospital for open heart surgery to give you a chance at life.


Part of me is ready to just get going and get the unknown over with the rest me wants to take you a run as far away as I can and keep you safe tucked up against me.

It feels like we are right back where we started last December.

Like our own version of "Groundhog Day" only without Bill Murry or quite so many punch lines (and a whole lot more Dr appointments!). But, we hope, with our own happy ending.

Even though it seems terrible to even write this it's so much worse now then it was back in then.

Then you where an idea, a few quick movements, fuzzy black and white image on 100's of ultra sounds, with a name and a beating heart but you weren't you. Not yet.

But now

You are you.

With your big deep dark chocolate brown eyes that already seem wise beyond your months. That crooked smile that radiates joy and makes all who come anywhere near it unable to resist falling in love with you. Your will. Your stubbornness (just like your Mama!). The way you already look at your brother like he's a superhero and the way your whole body dances with glee at the simplest of things.

And you, globally developmentally delayed you, in a room full of people all bustling around, poking at you, testing you, a mass of confusion and movement.

You look around taking each person in turn, till you come to me. Then you stop. Although you do not reach, you can not speak, you can not hear, and we are not even sure how well you can see. You stop, and the look on your face changes, and everyone sees that you recognized me. That you know I'm your Mama.

Of all the people there I'm the one you focus on and everyone in the room gives out an soft uncontrollable "awwwwww" and look back and forth between us and the love they see there.

It's so much worse now. The thought of losing you.

I have constant heartburn just thinking about it.

Not the kinda heartburn that you can treat with Tums. Not the kind that travels up your esophagus with spicy foods.

No this kind of heartburn is this constant ache and pressure on the heart. It fluctuates as thoughts pass. Sometimes the pain so intense it about bends you over and your heart literally burns, sometimes just a constant low heat.

I tried to explain the pain to your Dad once but it turns out I didn't have to. He already knew.

He's been feeling the same pain for a while now.

The other night I had just given you a bath and you were laying there all shiny and sweet. You were giggling in your breathless way as I blew raspberries on your belly and I as I looked at you I thought simply I can not do without you.

and I can't Mason.

In just three days we will be handing you over to a man who will have your heart literally in his hands. He will open your chest, and stop your heart, and try to save your life.

And once again your Dad and I will have one thought

One wish

One prayer

One hope

Just two words

Come home

That's it baby. That's all I ask.

Please just come home.

We can not do without you.

I can not do without you.

Tomorrow we will go to Loma Linda for your pre-op appointments. I think we will find out what time your surgery will be. I will update the blog tomorrow with any information I find out.

Till then my very talented, and lovely, friend Becki from Becki Cloud photography moved heaven and earth to do a family photo session for us the other week. I couldn't love them more, or be more grateful to her for the gift of these photos.

Dear Heather

Dear Ellen, Dear David, Dear Mom, Dear everyone who has been asking me so long for an update.

This is for you..... and for Mason
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

We have been home twice as long as we were in the hospital.

Impossible. I can't bend my mind around it.

The two months at the hospital felt like forever. Like we were trapped in a dream within a dream and lived an entire life only to wake up to realize that in reality only a short time had passed (If you haven't see Inception then this reference wont mean much to you).

These last four months have flown by. So much has happened. So much has changed and somehow our new normal has become....well normal. The Dr's appointments, the referrals letters, the care book, the constant battles, are just part of our to do in a day just like grocery shopping, or getting the mail.

Your first Easter Basket. I accidentally bought you a preemie outfit (because it coordinated with the outfit I bought for Pierce) we almost had to grease you to get you in it.

I'm sorry for the long delay in posting. It has been mostly due to time management issues....as in I can't manage to get done everything I need to do in the time I have to do it. If you could see all the started and unfinished drafts for the blog you would laugh (or is it cry) along with me.

Everyday I SWEAR that I will finish my post and update the blog. I put it on my long list of must-do-today-no-matter-what list but it always falls after.

Best Easter Bunny Ever!

After the two to three medically related phone calls I have to make (which always take forever)

After the Dr's appointments of which we have at least two or more a week.

You can tell your loving this!

After I spend time trying to take care of your medical needs, and making sure Pierce isn't feeling left out (but I struggle with this a lot).

After the laundry, the dishes, the groceries...always after

Love that Smile!

Then night comes, impossibly fast, and I have to decide. Blog or sleep.

Guess which one wins?

It took a while but your brother actually enjoys you now
and will even hold you (for a tiny bit) for pictures.

I actually am going to try and catch up the blog for the last few months in future post so for now just a quick letter.

Dear Mason,
My beautiful boy. Just a few days ago you turned six months old. Half of a year.

Just 7 months ago I cried myself to sleep most nights with only the one thought.

Live

Whatever it takes. Please just live.

and here you are. SIX months old and thriving with more personality than any one kid needs. You amaze me.

There are so many things you love. Pulling on my hair. Watching your brother jump around and spaz out. You love to watch everyone and everything around you and are always so aware of whats going on around you.

You put everything you can get your hands on in your mouth (and get quite upset when you can't get whatever you want into your mouth).

Father's day. Daddy's shirt says property of Pierce and Mason (SO TRUE)

You've been rolling for a while now and can even get onto your tummy when you want to. You haven't quite figured out how to roll back off your tummy but it's only a matter of time. You've discovered your feet and love to roll holding onto you legs till you look like a confused Sumo wrestler.

Your getting better and better at holding your head up. We work on it every day. Some with your physical therapist Marquita (who you love and you always fart on) and tons with me and Aunt JJ.

You have started to giggle. Your Aunt JJ can get you to giggle better than anyone. It's a really soft giggle almost like a whisper and if a person didn't know you well enough to hear it they would miss it but it's one of the happiest sounds I have ever heard. I treasure it every time it happens and hope to catch it on video soon.

You love to sleep being held in someones arms especially your Daddy's. You both run so hot it's like putting two heaters together and Daddy starts sweating soon after he starts holding you but he just sweats away because he doesn't want to put you down. You just tuck your face into the crook of Daddy's arms and snooze away even though your hair ends up plastered to your head with sweat. I think if you could talk you would call it your happy place.





You have the most amazing hair and it sticks out and up and around in astounding ways. No matter how hard we try and tame it.

You fall asleep around 7 pm and wake around 6 every morning. You'll play for a while and let me sleep in a bit but once you get bored you'll cough because you know I will wake up immediately to check on you (you little stinker). I will sit up and look over the side of your bassinet and you greet me with the biggest crooked smile I have ever seen and I love it every time (and it makes 6 am after only a few hours of sleep more bearable).

My Yankee Doodle Dandy boys

You look so much like your brother did at the same age (except he was off the charts large for a baby and your off the charts small for a baby) it takes my breath away sometimes. I look at the two of my beautiful boys and know I must have done something right to deserve all that I have been blessed with and I still almost can't believe that I am the mother of two boys.

I loved you from the moment I knew I was pregnant with you, the first time I saw you, the first time I held you, and all those long nights and terrifying days in the hospital my love for you grew and grew but oh Mason how I have come to love you. Not the idea of you but YOU.



I would never have wished CHARGE for you but now that your here I wouldn't wish it away because that would mean I wouldn't have YOU.

YOU my crooked smiling, whisper giggling, Sumo wrestling baby boy.

Happy six months baby. Looking forward to a lifetime more.


Love, Mommy
(ugh forgive the spacing on this post. I've been trying to fix it for an hour and I give up now)

Bless this bended road

Dearest Jelly,

I can remember clearly laying on the exam table watching you on the monitor during your 23 week anatomy scan. I was fascinated by your heart. I remember thinking how amazing it was that I could see all 4 chambers. It never occurred to me to wonder why the Dr. kept going back again and again to your heart.

Even when he said the words "I see a concerning shadow on your baby's heart" I wasn't really worried. We had several scares with your brother that all turned out to be nothing and so I learned long ago to not to get all worked up for a maybe.

It wasn't till the Dr. turned to the tech and told her he wanted me in for an echo the next day that I started to wonder. I know what it takes for a Dr to order a stat test and for the Dr to do so wasn't a good sign.

But I wasn't going to worry I told myself. The Dr said it could just be an artifact and till he proved otherwise that's what I was what I was going to hold on to.

Then the tech took me to the front counter to the secretary to make the stat appointment and I saw them turn and look at me over their shoulders and whisper.

No matter how much everyone tried to re-assure me. Once I saw the technicians whisper I knew we were in trouble.

More than this....there is nothing more than this

So after many appointments an echos we found out you had a serious congenital heart defect. We did our research, read blogs, and prepared ourselves for your surgery. Many tears, and sleepless nights followed as we spent the last months of your pregnancy hoping against hope that you would survive your surgery and come home to us.

The Dr's told us to prepare for two weeks (I figured three) at the hospital recovering from your surgery and then to deal the rest of your life with whatever heart issues you ended up with.

You flew through the surgery so well in fact that now that even your cardiologist says your heart issue....well just isn't an issue any more.

So you were born, open heart surgery done, and then recovery.

Everything we had prepared ourselves for till the diagnosis of CHARGE

It is a bend in the road we hadn't expected.

Kangaroo care time with Mama

So now we are on this new bend of the road and the journey is going to be much longer than we anticipated.

We seem to get a new specialist every other day. Every new Dr seems to feel the need to tell us "How serious" your diagnosis is and to "expect many hospitalizations".

I find myself having to bite my tongue to avoid the almost uncontrollable urge to say "NO SH*T SHERLOCK!". Forgive my language but sometimes it's called for.

I know they are only doing their job, only trying to be helpful. But honestly I don't find their pessimism or bleak predictions helpful at all.

The FACTS are nobody knows the future. They may have an MD with their name but they don't have a crystal ball.

We are not naive. We've done re-search. We know there are many challenges related to CHARGE syndrome that you may face.

But then you may not. Already you have shown you don't have many of the most serious complications related to CHARGE.

All the Dr Dooms in the world, with all their knowledge, don't know you. They don't know what you are capable of.

I wont let them tell you that you can't, or won't. Only you will tell us what your limits are, if you even have them.

Your Dad and I are here. We already have our armor ready and are prepared to slay any dragons that get in your way. I have a feeling that as soon as your brother is old enough to understand such things he too will be one of your greatest champions.

As unexpected as this bend in the road has been I wouldn't wish for a different road because it would mean a different you and that is something that I just couldn't bear.

It makes me think of a country song by Rascal Flatts. Forgive me if I change the lyrics a bit to better fit us.

"This much I know is true. God blessed the bended road that has lead me straight to you"

and that's how I feel.

Blessed to love you.

Blessed to be your mother.

Blessed to be on this bended road with you.

Today we repair your heart

Today is the day, wow a lot is going on.

Your mother and I are on hurry up and wait mode. We met Doctor Vaugn Starnes for about a minute this morning. He was straight forward direct and to the point. Besides him we have seen four doctors and seven nurses all working on you. While I do not want you to go into surgery right away, I also do not want you to be the last patient the doctor sees either.

We have had about 3 hours of sleep in the last two day's, and next two day's we are going to have just as much sleep.

You did look so comfortable this morning, I wish we could just bring home the equipment and just keep you on a slow drip of the drugs they were giving you, but somehow I think that would not work long term.

As your mom and I have come to say, "Today is another step in you road toward coming home."

-Dad

Letter from Dad

Mason,

When we found out that you were coming we celebrated your arrival. I told my co-workers with a smug smile that number two was coming. I did not understand until later why they were all looking at the calender. Then it hit me I would be taking December off. That would mean the holidays spent at home changing diapers and washing spit up.. But after re-doing the calculations I realized you would be coming in the second week of January. Even better, the playoffs and SUPERBOWL OFF!!

So things took an unexpected turn as we started to see different doctors and find out more and more about your condition. At times it was overwhelming but your Mom and I got through it.

Thank good for your Mom, whenever a doctor would explain something to us I would look at your Mom and ask her to translate.

I finally had to refer to an old automotive gizmo called a carburetor so that i could find common ground with the cardiologist. When the doctor and I talked about your heart we talk in terms of air mixture, valves, manifolds, and timing, that made it so much easier for me to understand what we had to do to fix the problem. Don't worry your old man is not a dunce. I just know car's and now I know your heart.

While your Mom felt you move every day things where more abstract for me. I only saw you 24 hours ago. I touched your hand 16 hours ago, and I changed your diaper 3 hours ago.

When I first saw you I was afraid to touch you, my hands are so big compared too yours. I was scared, but you looked at me with that little crooked smile and let me that you are tough and a fighter. After all I do remember your Mom telling me how sore her ribs where from you hitting them for the past 4 months. So I took your hand and I fell in love with my boy.

We have a lot of things to do and see and a tree house to build. So lets get through this and get you home. Where we will live under the same roof. Making our peanut butter and jelly sandwiches.

-DAD

No thank you Mr frost

These are just rambling thoughts that, although very personal, I feel important to get down in writting so someday when your much older you can see where I was, and what I was thinking.

One of the poet Robert Frost's more famous works is a poem titled The road not taken (though many people, including myself, mistakenly think the title is The road less taken).

I think I heard it the first time in the 90's in a movie called The Dead Poets society. It has several verses but them most often quoted are the last three lines of the poem.

Two roads diverged in a wood, and I—
I took the one less traveled by,
And that has made all the difference.

I think the most wide-spread interpretation of the poem is that it is about promoting individualism and non-conformity. Some say that the author Frost meant nothing like that but the beauty about poetry, and music, and art, and all the subjective things is all that really matters is the interpretation of the individual.

For me it has always been about choices, and chances, and being brave enough to choose the harder but more rewarding road. Looking back on my life I'm pretty proud to say that, when it came to the most pretty hard choices, I have taken the harder road and it has in fact made all the difference.

I walked away from a place that was easy and safe (but not happy) and started my life over at 31 with a clean, if a little bruised, slate. I moved away from my childhood, my mother, and everything I had known to a place where I only knew my sister and her family because I just felt that this was were my future was. I turned down a lot of men who were fine, maybe even great, but not the one for me and chose to be alone rather than ever settle. I walked away from a man whom I thought at the time was the love of my life (but not a healthy love) though it broke my heart to do so. I opened my heart one last time, and changed my previous habits, and met your father who, next to you and your brother, is the greatest thing that has ever happened to me.

I look back and time and time again I'm proud of my choices, and blessed by the outcomes, because they have all lead to here. To your father, your brother, and now to you.

So the other day when I was thinking about you and about this place we find ourselves in I was thinking about this poem, and the roads traveled, and I came to realize...

I didn't chose this road we find ourselves on. Nor would I.

In fact, most of the roads that I have been on that have resulted in great shifts in my perception, altered my character, have not been ones that I have chosen. Rather ones I find myself on quite unwillingly.

Most involve sickness, and death, usually of a loved one, and I did not chose the road, but it's one I'm on it all the same.

So now I'm thinking where's the poem for the roads we didn't chose to be on? Where's the great wisdom? What now Mr. Frost?

No answer....didn't think so.

Two roads diverged in a wood, and I—
Well I in this case I would just rather chose the easy road if it's all the same to you. I'm OK with no personal growth, no great shift in my understanding, or change in character. If it's all the same I'd rather take the well traveld road this time.

I didn't chose this road, I wouldn't chose this road, but I'm on it all the same.

So then what is it that makes a difference with the roads we didn't chose to be on? Do we raise our fist at the heavens and curse our luck? Do we cry out at the unfairness of it all. Do we curse and condemn everyone who isn't forced onto this road like we have been?

Or maybe is it? When we find ourselves on these roads that we didn't chose, that wouldn't chose, it's about acceptance and about traveling it with courage, and grace, and hope.

I did not chose this road that we find ourselves on, nor would I, but we are on it all the same. I accept it and go forward and maybe, just maybe, that is what makes all the difference.

I will be giving birth to you in just a few hours and I don't know what today will bring.

It's your father and my greatest wish and hope that you will be born, and the Dr's will find your condition is not as serious as they thought. That we will have you home in a few days and will wait a few months till your bigger and stronger for your surgery. Then we will all laugh and shake our heads over these months of worry, and tears, and preparation (and your Dad will be mad at me when he has to carry my enormous suitcase that I didn't end up needing back up the stairs). :)

Or maybe you are a serious as they think and we will be in for a long scary time that will eventually lead you home and hopefully well.

Maybe we will have to face the unthinkable and not be bringing you home and somehow your father and I will have to find someway to exist without you though I don't see how that is possible.

Whatever happens tomorrow I have no regrets and I wouldn't change a thing. Equal only to your brother, being your mother has been the greatest privilege of my life and loving you is worth anything, and everything it cost.

There are so many people vested in your outcome, your father, your grandmothers, your aunts, uncles, cousins, and extended family. Our dearest and best of friends, the Dr's, nurses, and 100's of other staff. There are even internet strangers friends who will never meet you, who are praying for you and keeping you in their thoughts. I don't want to take anything away from them. They are all so important in your care and future.

But for just this moment I want to be selfish and it be just about you, and I.

I am your mother. I have willed you into being. I have carried you in my womb. Of all the realtionship you will have in your life there will be none other like the one you have with me.

We are on this road that we did not chose together you and I my love.

I will not leave you. I will never stop fighting for you. I will never quit.. I will never give up hope. I will love you, unconditionally for always.

Mommy

A letter to Mason

Dear Mason,

My beloved Jelly. My miracle baby. My second son. My joy. How I love you. More than I have words to express.

I've been trying to write this letter to you for over an hour now, well for days really, but I just haven't been able to do it. Every time I try the tears come, hard, until I can't see enough to type.

It's midnight and your father is sleeping besides me and I'm trying not to cry to loud and wake him up since he has to be up in only 4 and a half hours for work and he is already exhausted. In part because of long work days and not enough sleep but mostly because he is worried about you.

But I'm going to do it. I'm going to start this blog with a letter to you because I'm running out of time. Even if we wait till I'm full term for you to be born that's only 4 weeks away and I need to get this started so it's ready to go once you are born. I don't want to get behind or I will never be able to keep up. I've lived with myself and my ways for almost 41 years now and I know that getting behind is a bad idea.

I think I haven't been able to write it because in some ways it makes this whole thing more real. Like putting down the words that I can't take back means acknowledging that you do in fact have a serious heart defect that other children have not survived.

I think that's the hardest thing I've ever written. But there it is. In black and white.
But also starting this blog is showing my faith, my absolute belief that you WILL survive. That you will live.

I'm keeping this blog for you my love so someday when your older and can understand such things you can read about your journey and understand what you experienced before you are old enough to remember. It will also be a way to update all our friends and family about your daily progress.

When your Dad and I talk about you and make plans for the future we say.."because Mason IS coming home" we always emphasise the IS.

It's our mantra, it's our talisman, it's our fact. It is the solid place we hold on to while this violent storm of bleak diagnoses, possible surgeries, and scary outcomes rage around us.
YOU ARE COMING HOME.

You are. I believe this. I know this.

You are coming home Mason. You are coming home.

I love you my beautiful baby boy. You are coming home.

So I've done it. I've started the blog. I hope to keep it as a record for you till your stable and your heart issues are more a part of your past than an everyday part of you life. Then I will turn it into a blog book so you can know and I can remember.

You have been kicking me as I type this. Sometimes I worry that you are so active because you are reacting to my tears. But I think you are actually just pissed because you don't like the way I'm sitting and squishing you. I like that. Already pissy just like your Mama.

You can't imagine how much you are loved,
Mom