He is as ok as he can be.

Recently I came across a blog that really hit home. A fellow mama posted a link to it. This mama and I live states away but connected during our NICU stay and life after the NICU. Having someone out there that understood the life of a NICU family was so comforting. Even though we live miles apart those miles didn’t seem so far when I saw all of my friends welcoming their second babies, smiling faces, swaddling blankets, coming home on day three from the hospital. Holding their babies just after birth just as I did Noah…I felt eons away from that reality I so desperately wanted. So a few states away or one facebook message away wasn’t all that far.

The title of the blog was, “But She’s Healthy Now Right?”

The title alone had me catch my breath.

I struggle with this daily. Every time we go out. “He is ok now though right?”, “good to have your boys all fine and no worries now!”, “he will catch up and be chasing his brothers in no time!” Or “he is almost 2?? He crawls right?”, “glad that is behind you, huh?”, “aren’t you glad you are out of the newborn stage?” And on and on and on and on.

When no…we aren’t out of the “newborn stage” and nothing is behind us. We aren’t in the “clear”. He doesn’t crawl, barely can hold his head up and still eats from a bottle and doesn’t tolerate regular food and is on a very special diet. Just one of his bottles that he has to have a minimum of three of cost $8 each, they are nearly 450 calories a bottle with 11 grams of protein in each. Trust me I know how exhausting the newborn phase is, I’ve been living it for nearly three years now with that short break right before the twins were born. So take that newborn phase and add on some medical chaos and a million appointments, live that for a year with no end in sight and come back and tell me how grueling that 6 month newborn phase is.

I never know what to say…people don’t know what to do with the truth and don’t often want to hear the truth. That this sweet gorgeous curly haired blue eyed boy isn’t “ok”, yes we aren’t in the hospital right now…but he is not ok. People don’t even know what CP or PVL are…they don’t know about NEC or short gut or seizures or auditory neuropathy.

I say the words brain damaged and they often recoil in horror.

People don’t want to hear the answer to why isn’t he responding to me saying his name…he is deaf.

People don’t want to hear the answer to why won’t he look at me, just let me try (clapping, waving, dancing, etc.)….no, it wont work he is blind.

People don’t want to hear why his identical twin is more than double his size and the struggle we face daily to get him to gain weight….that he has no large intestine and short gut syndrome. Sometimes I like to think maybe I should invite these people over for short gut diaper duty…or wish they would have been there in the beginning for the 20 poopy diapers a day (at least) and trying to control a diaper rash that was more like a 3rd degree burn up until he was 1. Maybe then they would understand why he weighs “just” 16 pounds. To us it is more like, “Aiden weighs a whopping SIXTEEN POUNDS!!! He has cheeks to pinch! I can’t count every rib in his chest! HE HAS FAT!! He is GROWING!” Or maybe I should just start saying, “you would have a hard time gaining weight if you had diarrhea 10 times a day too.”

I never want people to feel uncomfortable. I know they aren’t meaning to open old wounds. I know they don’t know they are the sixth person asking me the same question that I’ve encountered that day alone and I am just trying to get my kids to the park or grab a few quick things at the store. I know that they mean well.

But sometimes I just want to say its ok to not be ok. That I don’t want to hold my son to the standard of not being “ok”. That he is more than all the things stacked against him. That he is more than a diagnosis. That we are just at the park. We are just at the store. That I don’t know you. That he is just a kid, just like his brothers.

I guess what I am getting at is please, before you speak, before you ask “what is wrong” or “everything is ok now?” that you need to be prepared for the person to not smile and say that everything is ok. That when you ask why my son is so small or why he is so different than his twin and want a neat, nice, warm little answer that ends with a happy ending that I struggle because I don’t know what to tell you. “I would really like to fill you in on prematurity, the 5 month NICU stay, NEC, PDA openings, spesis, DIC, organ failure, PVL, auditory neuropathy, infantile spasms or epilepsy (we aren’t sure yet) and our fears and battles in the future and present BUT I would LOVE to just grab the bananas, milk and cheese I came in here for without rehashing my child’s medical history and triggering my PTSD. K, thanks!”

Think about what the result of your words or questions will be good or bad. Are you just curious? Does it matter if we’ve made to that ever elusive “ok” – does that change how adorable he is? Does it change his infectious smile? If you are just a passer by, you don’t need to know the details to pray or wish someone well or admire a babies smile or child’s laugh. Think about that family and if they are at the park trying to have fun or at the store rushing to get grocery shopping done with three kids (which is already NEVER easy) and think about how your words will affect that. Think about your largest struggle in your life and wonder if you would want to be asked to explain it every time you ventured in public.

I know there will always be people who ask pregnant women if they are having twins, when they aren’t. People asking if your pregnant, when you aren’t. People asking when you will have kids when you either don’t want kids or you desperately do and wonder the very same thing. People don’t mean to stick their foot in their mouths, but it doesn’t mean it doesn’t hurt or strike a nerve.

And not all questions are bad. Not all concern strikes that nerve. Our neighbors, friends, community and more have asked and offered help. Been there to celebrate a good day and been a shoulder to cry on for the bad. They have been in it for the good and the bad and walk with us. It is small talk. The nosy nature of wanting to know just to know.

I never know what to say, the truth is, it is day to day, minute to minute and we are thankful for each one because he was given less than a 1% chance live. So no he isn’t “ok” or “normal” or what many would call “healthy” but he is here and that is all that matters. 

So I take a deep breath and say, “he is as ok as he can be right now.” Because isn’t that the best any of us can do?

 

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I am a wuss and I know it.

So I admit this post will confirm my lameness but I’ll post it any way.

What the what is up with tv nowadays.

(Evidence #1 in lameness) Kevin and I recorded Late Night with Jimmy Fallon because lets be real….we don’t watch anything that late because we try to not be up that late.

With three boys under the age of two we must sleep when we can sleep, by sleep I mean lay there motionless, hoping that somehow not moving and laying still waiting for the next cry will somehow recharge us as well as real sleep.

If we are awake we are knee deep in baby/toddler drama. With diaper changing, bouncing, rocking, bottle making, spit up cleaning and outfit changing.

But we love us some Jimmy Falon. So the other day at lunch time we popped on Jimmy.

We were enjoying our weekly dose of Thank You notes when the commercials came on. Noah was sleeping on the couch on the remote and we didn’t dare disturb him.

Right before Jimmy was to come back on a nice little commercial for the upcoming series Hannibal came on.

Where someone was eating what appeared to be pork loin and they asked what loin it was and then it flashed to someone CHOPPING UP A HUMAN APPANDAGE.

I do not watch horror films. I can’t even watch Dexter or The Walking Dead.  So this pretty much scared me, like I am not eating lunch anymore excuse me while I go dry heave for the next hour.

When did cannibalism become late night tv programming?!

What’s next Freddy Kuger co-hosting with Katie Couric or Anderson Cooper?!

Can tv just go back to Full House and Home Improvement? Or at least not show humans being chopped up?

Maybe I am just too used to PBS and Disney…or maybe just maybe it is a little over the line to have a graphic series about cannibalism on NBC.

Hannibal…no thank you. I would rather watch Yo Gabba Gabba 24/7 which if you have ever caught an episode of it you know is usually worse than the though of having your arm chopped off.

Tell me this isn’t the worst thing you have ever seen…

The freaking bangs.

As you can tell by the title of this post the bangs have not yet grown on me.

Kevin really likes them. He has told me 50 gazillion times. Noah is fascinated by them. I loathe them.

This post should really be titled..eff you Reese Witherspoon and your perfect bangs! (Just kidding, no one could really ever hate Reese Witherspoon)

Or maybe the title should be Pinterest stop making me believe I can DIY things like bangs! 

Well…after much requesting here is a picture of the bangs.

It isn’t a good one but I don’t have time for cool, fancy pictures (or haircuts!) my boys make sure of that!

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So that is that.

I told Kevin half kidding (ok…more like 1/16th kidding) that I was going to go back to blonde…

So we shall see if these bangs are the last of me taking my life stresses out on my hair!

Stay tune for more stay at home mama hair drama!

A bang up job.

Sometimes I do dumb things.

Like hormonally cut bangs into my hair.

The FLOTUS and I for sure have something in common…we take our feelings out on our hair. Her bangs resulted from a mid life crisis and I think my resulted from pure insanity.

I often take out my feeling on my hair. Usually I never get the nerve to cut so I normally bounce between being a blonde or a brunette. But I don’t like the “Oh!! You dyed your hair!! Wow! I never imagined you as a blonde/brunette.” I also don’t like that all of my pictures through life are dotted with me being beach blonde or brunette….that probably doesn’t make any sense to anyone but me.

It is hard for me not to see myself as both. I was blonde naturally until I was 16 years old then my hair went cray and went from blonde and straight to brown and crazy curly. So for over half my life I have been blonde but I am naturally a brunette.

Any ways…I digress.

But this time the boys took an abnormally long nap…the house was clean…and saw a cute picture of bangs on Pinterest.

And that was it. I cut over a years worth of growing my last attempt of bangs out. My hair grows SLOOOOW.

Loved them for all of 20 minutes.

Then immediately hated them.

Kevin got home and I couldn’t even look at him.

I felt like I looked 9 years old.

He assured me they were cute and he really liked them.

I still am not sold.

They actually annoy me. I don’t like hair in my face. So what did I do…I added an entire row right across my head of hair IN MY FACE.

Yep…I make a lot of sense.

I always do things like this when I am not happy with something I can control, like my weight, medical problems with myself or others, house problems, Kevin’s work problems, life drama…so having all those problems at once…the odds were really stacked against me.

I guess I should be happy it only resulted in bangs and not a Brittney Spears shaved head melt down.

 

on the ombre train.

So this morning I had a streak of bravery.

I had some extra bleach back from my blonde days and swiped it through the bottom half of my hair. Bring on the ombre.

I used a brush to get the effect I wanted. I figured it would be better than the little brush that came with the bleach. I plopped the bleach on the brush and started at the ends and every 5 mins or so I would add a little more bleach about an inch higher until I had it as high as I wanted it.

While Noah bounced in his pack and play watching me wash my hair out over the kitchen sink looking at me like I was crazy I couldn’t help but agree with him.

Mommy must be cray-cray.

After all was said and done and I actually took the time to do my hair versus the top knot of a bun(ish) thing it is usually in I think I like it.

It is more noticeable in person which I might try to tone down but photographs pretty well.

It is subtle, it just breaks up what was once a big mess of boring brown hair.

Either way this stuck in her rut stay at home mom can at least say she at least attempted a current trend or curse Pinterest for convincing me to do this.

Let’s face it…I will probably buy a bottle of basic brown this week and dye over it but I’ll live in the glory of being trendy for a couple of days 🙂

PS: Help a mommy out and click the link below! One click = a vote! We are close to the leader boards again!

month 2

Dear Noah,

This month has been so tremendous, I don’t even know where to begin. You’ve grown so much in the past few weeks that I struggle every day not to become one of those parents who talks incessantly about their children. Then other times I say screw it. You’re totally brag worthy.

Everyone told me I wouldn’t know how much I would love you until you were born and they were right. What I didn’t know is every single day I would feel that feeling a million times over.

You are wonderful. People keeping saying that you are going to grow up to be a heart breaker (hello, look at your daddy) but I think you already are. You have me wrapped around your little finger. No matter what I am doing all you have to do is shoot me one of your gummy grin and I am all yours.

This month you figured out you like sleep almost as much as mommy and daddy do (thank God!). At 9 pm it is lights out for you little guy – by your choosing! If mommy and daddy keep you up past then you are sure to pitch a fit! At 9 pm you are usually a drooling, little ball of sleep love. Daddy picks you up from where ever you clocked out at, off the boob, off your play mat, out of the swing or out of your beloved boppy and takes you to your basinet. Every time I fear that this transition will wake you – but no. Your arms and legs hang limp with your mouth gaping open all the way to your bed. You love your sleep, we cherish this about you. You wake up once or twice to briefly feed and then nod back off. I will cherish every night of this because I am sure you won’t be so narcoleptic when you start teething!

You and daddy have your special time when you wake up for your first breakfast at 5am. When you wake up you are ready to go, you want to eat, play, laugh, babble and cuddle and your daddy eats it up. He says there isn’t a better way to start the day and that you are better than coffee…coming from daddy that is a big deal – your dad runs off coffee. There isn’t anything better than watching the two of you together, you are already best friends.

kevin and noah...and their favorite past time

Since you sleep so wonderfully at night you are very awake during the day! One of your favorite past times is music. Every time I sing to you smile and you sing along in baby talk. Your favorite song is, “You are My Sunshine.” I sang it to you while you were in my belly and the first time I sang it to you after you were born your face lit up.  It is really hard to get anything done when you are so cute, I could spend all day jamming out with you (sometimes I do!).

This month you have embraced your fur-siblings. They love you (a little too much sometimes). The feeling is starting to be mutual. I think. You could be in love with them or you could be laughing at their flat weird little faces or the fact that all the want to do is lick your feet. Either way when they come to check you out you think it is hilarious. They like to take your afternoon nap with you and try very hard not to steal all of your toys. You are especially fond of Humphrey and he is especially fond of you. Any time you cry he runs over to lick you and if he had it his way he would sleep in your bassinet with you.

cuddle bug and cuddle pug

Now that you and I have our bearings from getting you in this world, you are my little work out buddy. Every day we wake up, you eat breakfast and we hit the road. You love our walks. You stare at the trees and love the sunshine. I love our walks but I wish I enjoyed them as much as you do! It has been a horribly hot summer and while you are chilling out in your shaded stroller with your little fan I am sweating my butt off…but that’s the whole point right?

Your personality is coming out more and more every day. You are such an easy baby. You are loveable, always smiling, talking and love your sleep! Your dad and I thought this whole baby thing was going to be a lot harder than it has been. Thanks for being so awesome!

I want you to grow up so fast. I want to take you to the park behind our house. I want to watch your dad teach you how to play basketball. I want to know what you are thinking. But at the same time I want to freeze you. I want you to stay this small forever. You already are so big to me. When I am scrolling through pictures of you, you don’t look anything like the little newborn in those pictures. It almost breaks my heart. You are already growing up so fast. I know that the only thing I can do is soak up every second along the way and treasure every moment.

Our world is such a better place with you in it. Now that you are here I feel like I am who I am supposed to be.

Sitting here thinking about how amazing this past month has been with you asleep on my shoulder trying to write this letter to you one handed, I want to remember this moment forever. Your face is smooshed in my neck and your little fingers are tracing my skin. I can’t believe you won’t be this small forever. I want you to know that even though I won’t be able to hold you on my shoulder forever – just know you will always have them to lean on.

You are my sunshine and always will be little one.

Love,

Mommy


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Mommy milestones

No one ever tells you about mommy milestones. You wait anxiously for each and every milestone your little one reaches. There are charts, graphs and books dedicated to baby milestones. Baby milestones are pretty freaking awesome. Rolling over, first words, first steps – seriously baby milestones are my jam. Mommy milestones while at times are awesome can sometime feel like that dream you have where you somehow show up at school/work naked and everyone is staring at  you – just add a screaming baby.

My two recent mommy milestones were ones I dreaded.

I am overly modest. So the fact that my babies food comes from my two of my most unmodest parts can cause a modesty conundrum. Like for example when pulling up to Target and Noah deciding that the 45 minute nosh session he had before the 15 minute car ride to Target was just an appetizer and he is ready for the entrée – NOW. Kevin looked at me, I looked at Noah and I knew what I had to do. I breastfed in the Target parking lot. Kevin was a gentleman and pulled to a more discreet location and whoop there it was. The moment I knew at some point was coming was here. I knew I was going to eventually feed Noah outside of the comfort of my own home. I was convinced some police officer was going to tap on the window and arrest me for public indecency or on lookers would gawk and shake their heads. But none of that happened. Actually it was extremely uneventful.  Noah ate, fell asleep and we had a peaceful Target trip for bottles and baby sunscreen. I sort of felt like I had reached a new level in mommy hood, I stood a little taller perusing the isles of Target…I am not sure if it was the mommy milestone confidence or the fact that I had just unloaded what felt like half a gallon of milk – either way I felt good.

Yesterday brought my most current milestone. I was living the life. I was innocently watching the Bachelor and enjoying my skinny cow ice cream bar, Noah was asleep, the pugs were sleeping, Kevin was at work and couldn’t make me feel bad about getting wrapped up in all of the delusional drama that makes the Bachelor so addicting. I had me time! No sooner had Ashley started whining about her polygamist predicament of picking a husbad had I noticed the sky looked a little weird outside, greenish. There was no watch or warning on the tv, but coming from a girl who watches the Weather Channel for fun I knew something was up. I looked outside and the sky was swirling like whirlpool. Soon the trees were swaying back and forth like blades of grass in the wind and lighting lit up the sky furiously. Then came the tornado sirens. The power started to cut on and off. My heart was racing. The pugs began howling and Noah was startled with each roar of thunder. The sound of branches snapping and the flashes of lightning filled our home. With Noah under arm I put both dogs on leashes, grabbed a flashlight, threw on my tennis shoes and headed down to the basement. I was terrified. I in general I hate weather. Snow, ice, storms, rain, heat – not a fan. The only weather I enjoy is in the fall, cool crisp and boring – perfect. There were trees falling outside of my house, this was not my moment. But I had to deal. Kevin wasn’t home, I was alone and I was a mom, I had to be the tough one. I sat on the floor of my basement comforting Noah and my dogs until the storm passed. After the storm had settled I realized I had done what I feared I wouldn’t be able to do – be the comfort my mom was for me in times where she was probably just as scared as I was. Granted singing lullabies and making it rain dog treats was probably a lot easier than handling the terrified crying lunatic 13 year old me during a tornado warning (kudos mom).

I feel like mommy milestones start at birth (hello, isn’t birth the ULTIMATE mommy milestone) and last a life time. They bring out the super hero, the teacher, the caregiver, the bravery and the love we never knew we were capable of. But, thankfully all mommy milestones aren’t so flustery (yeah, that isn’t a word, I know), like fitting into those pre-pregnancy jeans or that first full night of sleep.

So I will continue my adventure as a new mommy with a few milestone badges and welcome every baby and mommy milestone along the way.

Anyone else have any mommy milestones under their belt or any to look forward to?

Kevin-isms

After Kevin got off the phone with the insurance company and had to spell out everything to the not so helpful insurance agent..

Me: That was the most random word letter pairing I have ever heard…T as in toy, E as in Ear, A as in Ant and L as in log…twice.

Kevin: She couldn’t understand anything I was saying, I said Teall, like as in the color teal, she said ok Mr. Ree-oo-ul-AK.

Me: I can’t believe these people decide whether we quality for their insurance.

Kevin: Well, hopefully Mr. Reeooulak qualifies because I am pretty sure that is what is going to be on our insurance card.

We got a free coupon for a two liter of Sun Drop..

Me: What’s the verdict on the Sun Drop?

Kevin: Yellow.

Me: What?

Kevin: It tasted…well…yellow. And that isn’t a good thing.

Me: What color should it have tasted like?

Kevin: If you are going to taste like a color, go red or go home.

Me: I don’t think Sun Drop a citrus soda named after the sun would make much sense tasting “red”..

Kevin: Well, I don’t think Sun Drop makes much sense tasting like knock off moutian dew laced with pee. It tasted that yellow.

Me: Ok. Point made. No more Sun Drop.

Kevin: Why do you think they are giving it away for free?

Worry.

I have always been a worrier and from the day I saw those two pink lines to the day before Noah was born I thought I couldn’t worry any more than I was – I was very wrong. The second he was born that is when I knew what really was to worry.

I have always been a worrier. I worry about everything. From how to cut my hair to what our 10 year plan looks like – it all keeps me up at night. I borrow trouble and fret over the small stuff. I don’t like it but it is just who I am.

I thought I knew what it felt like to worry. Then I found out I was pregnant and discovered a new level of worrying. I thought that over the 9 months I was pregnant with Noah I had reached my worry peak , I was so very wrong.

As soon as Noah came in to this world I felt true worry. Here he was out in the world with Kevin and I to guide and protect him through this big crazy world. Scary stuff.

I worry about all the things new moms worry about. Like the constant train of is he sleepingeatingpoopingbreathing enough? Am I doing everything right? Could I be doing better? But then there is a different worry in the back of my head.

When I was told I had thyroid cancer almost 5 years ago it was hard. But seeing my family bear the diagnosis with me was unbearable. Telling Kevin I had cancer was the single worst moment of my life. It made it real. It made me feel the deep wound that cancer is. Seeing the fear in my younger brothers eyes and the tender way they hugged me after the diagnosis like somehow I was more fragile than before broke my heart. Feeling the sorrow and grief from my mom and dad that they could not bare this burden for me tore me apart. But seeing Kevin, my love, my best friend and then soon to be husband look at me with eyes I had never seen before and tell me, demand from me, that I would beat it because he could not go through life missing his other half killed me.

Luckily over two long years, two surgeries and two rounds of radiation later I was cancer free. Even though I have been in the clear for over 4 years and this summer will mark my official remission phase I still don’t feel safe in my own body. And now I feel like I have the most important card to lose, being a mommy.

The idea of having to battle cancer again is terrifying, not because radiation and surgery are painful and difficult but because I don’t ever want to have to tell my family that news again. When someone in a family is diagnosed with cancer the entire family is diagnosed and I don’t want Noah to know that pain.

All I can do is be positive and control the things I can. So forgive me when I get on my soap box about tanning and smoking. How could I tan or smoke and then find out down the line I had cancer from those things and look my family in the eyes and let them down with that diagnosis. I couldn’t think of anything more selfish. It is like playing Russian roulette with your life and I am not willing to put myself or the people I love in that position. ( Ok, I am stepping off my soap box now. )

So for now I will take each day as I have as a gift. Enjoy and love each person in my life all I can. Live my life to its fullest and remember to take a moment every single day to soak in how very lucky I am.

Tummy time.

Not more than 7 short weeks ago I was afraid that at any second Noah’s neck was going to break if I wasn’t fully supporting it. Handing him off to people I felt a pit form in my stomach. They surely would not support his head correctly. I cautioned everyone to support his head and neck when holding him, even a nurse while we were in the hospital.

I have also been consumed with what I am told is an irrational but completely normal fear of anything by his face, in fear that he might suffocate. This mainly pertains to him flipping over on his tummy in his sleep.

So imagine my struggle being instructed to do that exact opposite, with tummy time, where you lay the baby flat on their belly with no neck support. Tummy time is a developmental exercise important to infants. Infants spend a lot of time on their backs and need tummy time to balance out and build their muscles. You know so I don’t have to walk around supporting Noah’s head when he is 30.

It didn’t help my hesitation that when we first started tummy time Noah wanted nothing to do with it. When I put him on his stomach, he protested wildly, creating sounds I didn’t think humans could make. So when I heard those sounds, a voice inside my head said, “AAAaahhh! I’m killing my baby!” And I scrambled to pick him up. In spite of my tummy time trepidation we pressed on.

getting ready for tummy time

After easing Noah (and me) into tummy time, starting out with side time, he now loves it. Since embracing tummy time Noah has started to show off all of its benefits. He lifts his head, rolls over like a pro and squirms his way around the blanket in short spurts thanks to those crazy strong legs of his.

Loving tummy time.

I don’t know if his love of tummy time is due to his new perspective or just the fact that mommy and daddy make funny squeals out of excitement when he does things like lift his head. Either way we are big fans of tummy time too.