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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Kevin and Dominique plus 3

Posts have been few and far between here.

 

For many reasons, but one mostly.

 

Having a 2 year old and infant twins is hella hard.

 

There is no amount of sleep (not that we get any), no amount of caffeine that can touch the constant heavy blanket of fatigue that is over Kevin and I.

 

There for when we do have spare energy I usually don’t spend it blogging.

 

My brain cells have been in survival mode since the twins came home. I don’t normally have enough to spare to form a lucid thought let alone an entire witty blog post or one that isn’t just a short:

 

HELP ME.

 

My days are spent with Dora, Elmo and keeping up with the Duncan’s not the Kardashians.

 

I usually feel like a haphazard mess when we do get out of the house and then our outing usually end up feeling haphazardly disastrous so any attempt at feeling “normal” is just a vicious circle of haphazardness.

 

I want to blog, really if I ever should have been blogging about my life to document for my family/show the kids later in life so they don’t gripe when I tell them to clean their rooms or at least serve as entertainment for others it should be now.

 

Our life could be a reality show.

 

Sometimes when I am waving my white flag at the kids and trying to down my fifth cup of coffee before they lunge another attack at me I think about the Goslin gang and I try to whine less or at least try my best to not be Kate Goslin-ish.

 

Sometimes when things happen that would be full of canned laughter on our imaginary television show I don’t see it as funny at the time.

 

For example…recently someone sold us a rigged stroller off craigslist. We got scammed. Before we realized we had been duped we (I) decided it would be wonderful if we took our entire family to the local farmers market. I think I forgot I don’t live in Pinterestlandia and this is the kind of thinking that gets us into haphazardness and that I actually have 3 boys…2 infant boys and a 2 year old that don’t really dig farmers markets or being in public, well at least not behaving in public. The stroller was acting funny on our walk with all three boys strapped in and finally as soon as we got to the farmers market it broke. In the middle of the entrance. A huge, semi tractor trailer of a stroller that weighs almost 100 pounds broke with all three kids in it in the entrance to the farmers market. We sat on the ground and tried to fix it but it didn’t work, we figured we would just carry the boys around, enjoy the farmers market and then figure out how to fix it when we were done. You know make the best out of a bad situation. WRONG.

 

It was totally broken, not going back together, the previous owner used GLUE in the sockets so it would work to be shown not used.

 

So we had to walk home. We weren’t terribly far from home but when you insert Noah mourning (raging over) the death of his balloon animal he got at the farmers market and the fact that the twins are near impossible to hold together at the same time and they both decided they were hungry as we were leaving and wanted to tell the world about it, oh and it was a nice 95 deathly degrees out we might as well have been states away from our home.

 

Kevin carried Noah at first and I carried the twins. About a block away from the market Noah took his box of milk and squirted it over Kevin’s head and I was losing the twins. He couldn’t understand why I couldn’t just keep them up (there is an I told you so coming up) and I hoped taking the one that could hang on instead of slide down me like a greased pole would be better.

 

WRONG, wrong, wrong, wrongy, wrongy, WRONG!

 

Noah brought his wiggles guitar to the market and would not leave it with the stroller and was carrying it while being held. And by carrying it, I mean hitting me in the face with it most of the walk home.

 

Sweat dripping down my face, I am 99.9% I have not only developed asthma on this walk but am now having an asthma attack and am in fact dying and all I can hear are the cries of my seemingly feral 2 year old and the ever so overly cheerful wiggles singing, “fruit salad, yummy yummy, fruit/fruit/fruit/fruit salad yummy yummy.” (Note: the repeat is the smashing of the guitar on my face restarting the song)

 

I look up and Kevin, who was so sure the twins would be easier is carrying them like footballs by his hips.

 

We look at each other and through parental telekinesis tell Kevin to go ahead since his load was lighter and not waging an all out war against him. He shuffled home and I took a break from carrying the wild alligator, I mean my toddler home.

 

I stood Noah up on the sidewalk and waged the mom maneuver of I can do this all day kid attitude. We stared at each other for about five minutes and I asked him to walk and he did. He then realized it was hella hot outside after three houses and he did not want to walk and put his arms up for me to carry him.

 

So I mustered up what little energy I had left and carried him home, the last stretch wasn’t as bad, I think Noah was even tired of his antics by this point.

 

We got inside and all I could hear was my heart pounding in my head. Kevin left to go get the stroller with the van. Noah came up and hugged me and patted me on the back and asked for milk.

 

I got him milk, trying not to curse the fact that he had just dumped a box of milk that cost as much as a half gallon of milk out from Starbucks on Kevin’s head and down the front of my shirt.

 

I then sat down on the computer and updated my status on Facebook.

 

Dominique Teall

We bought a triple stroller yesterday and decided to take it out today to the farmers market…as soon as we pulled up the wheels popped off and wouldn’t go back on. We carried all three boys, one screaming after the death of his balloon animal all the way home. 
Worst (non medical) experience as a parent to date.

 

 

Immediately people started commenting how funny it was.

 

I closed the computer, irritated and pouting and went to self loath and hide the Wiggles guitar.

 

I cooled down….realized I myself was throwing a temper tantrum of the emo type and realized it actually was pretty funny.

 

Although when I hear the wiggles I do have PTSD flash backs of that walk I do laugh a little.

 

We are trying to sort ourselves out and adjust to our life of Kevin and Dominique plus 3. While it doesn’t sound as daunting or catchy as Jon and Kate plus 8…somedays…ok all days it feels just as hard.

 

So forgive me for the lack of updates, if we are being honest let all just applaud that Kevin and I are still alive.

 

Hopefully on top of surviving there will be blogging too.  

Kevin-isims

While at Home Depot, with all three boys, all of whom were crying screaming.

(Note you will only understand this if you too are forced to watch the Disney channel far too much)

Kevin: This would be better if I had a rainbow Puffle. 

Me: It is sad that we even know what this is.

Kevin: Yes, yes it is.

Me: Did you just subtly reference Phineas and Ferb? 

Kevin: Why yes, yes I did.

Me: (sigh)

Digging out of the ruins.

I finally feel like I am in a place where I can allow myself to move forward.

Since the twins were born I have felt frozen in time. To me I still feel like I should be planning Thanksgiving dinner and Christmas.

This year blew straight past me, actually it ran over me like a train.

This time last year I was eating healthy, loosing weight, had a successful Etsy business and my future looked predictably happy. My kind of happy, a control freaks dream.

But life isn’t like that.

So here I am standing on the other side of the Hell my family was just drug through ready to brush off and walk forward.

It is a hard thing moving forward after a trauma, because you are all too aware you could be walking toward another trauma and you have to pick up all the shattered pieces of your life from the last trauma.

So I stayed paralyzed in my own personal Hell.

My mind never left my bedrest, the end to my pregnancy or the NICU. It is like all that pregnancy nesting took made a little nest in the middle of a hurricane.

I couldn’t leave the nest because leaving the nest meant accepting where my life had placed me.

And quiet frankly I didn’t want to.

I didn’t want to accept the lives my twins were handed because as their mom witnessing their first months on Earth filled with pain, tubes, tests, surgeries, near death experiences and diagnosis after diagnosis their future seemed so much more fragile.

I faced a new role, I was a mom of three, could I be enough?

I had to accept what and who I had become. I gained the baby weight with the twins and then some (and by some I mean A LOT) because eating was just about the only thing I did to get through this year.

I had to accept that I was “broken”. That I had post traumatic stress disorder, that I was depressed and needed help controlling my anxiety.

I had to make plans to fix both these things.

I didn’t want to do any of this.

But I am a mom, a mom to three beautiful boys, a wife to an amazing man and I NEEDED to do these things for them.

I NEEDED to do this for me.

Over the past month I have slowly started to see more clearly what I need and what my family needs.

And I wanted to do it.

I feel like the hurricane passed months ago but the clouds, flood waters and ruin all remained.
So now it is time to rebuild and clean up.

Time to move forward.

 

Welcome Home Aiden.

Dear Aiden,

I have started this letter many times. But I never finish it because I always choose to put the laptop away and hold you.

I breathe you in because once what feels like so long ago but at the same time just like yesterday I almost lost you.

You and I have always had a strong connection. I can’t explain it but I knew you before you were born. That is why we chose your name Aiden, it means little fighter or little warrior.

our fighter

our fighter

I knew you were a fighter, I never could have imagined the battles you would have to face. I knew your spirit and you my baby are strong.

seeing you for the first time

seeing you for the first time

You’ve moved mountains little one.

You’ve shown me what it means to be strong.

just a few seconds old

just a few minutes old

You gave me strength on my darkest days. You reminded me strength doesn’t come from what the statsitcs say. You showed me that percents don’t matter. You showed me the power of prayer. You tested and renewed my faith in God. You showed me the power of love.

You my baby, are a miracle.

My miracle.

first time holding you

first time holding you

Dr. Goodwin your surgeon said you made it because you had some angel squatters watching out for you up above.

The day you got sick in one of the few moments I got alone with you before surgery I prayed to those squatters.

My sister. I know she was there. I too was a twin Aiden. But my sister died at birth. I begged her to help you, to protect you, to do whatever she could so Evan didn’t have to miss you like I miss her.

I prayed to my little brother Adam who had been in the NICU and passed away to help comfort you through battles he sadly knew all too well.

The power of that prayer, all the people that were praying for you around the world, you family, the doctors and nurses and those angel squatters was tangible in that room.

the day after your first surgery

the day after your first surgery

No one can believe how good you are doing.

I myself cannot believe I can look into your eyes and see my Aiden.

you wide awake this morning

you this very moment

I can see that spark. I recognize that little one that was in my belly.

I look at you now, laying in my lap, studying my face, my fingers as they type, smiling when I make a funny face.

This moment could have been lost, you were almost lost.

Your dad asked one thing the day we almost lost you, he down on his knees in our room in the NICU asked the angels to please not take you away.

I am so glad they chose for you to stay.

I am so glad you are mine. I am so glad you are ours.

You Aiden are my hero. I can only aspire to be as strong as you.

I am so proud of you.

When we took you home, I was depressed. While you were free of wires and monitors to me you were still tethered to diagnosis after diagnosis.

aiden1

One of the last things a nurse practioner said to me that hurt my heart was, “you aren’t just bringing home a baby to feed, love and hold.”

It broke my heart a little. It felt like you went into the NICU a baby and came out a list of diagnosis, not a baby but a permanent patient.

But one day laying with you on the floor of your nursery I realized I had to remove your diagnosis from you.

Yes, you have appointments and medications but you aren’t Aiden PVL/NEC/LOW BIRTH WEIGHT/AUDITORY NUEROPATHY Teall like you were in the NICU.

You are Aiden Everett Teall. You love funny faces. You smile when you eat. You laugh at Humphrey our pug (he is pretty funny looking). Your obsessed with your binky. You would be held forever if you could. You have a funny, sweet, strong little personality.

aidenhome

You were brought home to feed, love and hold, you were brought home just a baby, just like your twin Evan and just like your older brother Noah.

You were brought home to be loved.

you and evan sleep exactly the same way

you and evan sleep exactly the same way

That is far better medicine than any doctor can offer.

And truthfully having you home has been the best medicine for our family, having you home is healing our battle wounds from the past 6 months.

So here we are Aiden.

I remember seeing you as a little jelly bean on an ultrasound swiggling around with your brother.

Now you are swiggling around on my lap with your brother.

You are still the fiesty one. You are just who I thought you would be.

You are who you were meant to be and I am blessed to be your mom.

You are my spirit to be strong little one.

us

Aiden Everett Teall, welcome home.

With so much love,

Mommy

Dear NICU

Dear NICU nurses and doctors,
Where do I begin.
When we began this journey we were not happy that you all were a part of our “birth plan”.
Even though we planned on our boys being in the NICU, we could have never planned for the path they both traveled.
I have spent 110 days praying and pleading with God to let us leave the NICU behind with our two boys. Just waiting for the day we could break away. The problem is I didn’t realize it wouldn’t be a clean break.
I didn’t realize a part of my heart would always be left behind in the NICU.
Tonight I am crying writing this. One of my boys is at home and one isn’t, he is still in the care of you all and it is just now hitting me one day very soon we will be leaving the NICU and not coming back.
How do you say goodbye to people like all of you?
How do I thank all of you?
God, how do you all do everything that you do?
When our boys were born and we were thrown into this world it felt as though we were thrown into another universe, against our will. Our old lives were unrecognizable to us. We had been drug to the depths of our own personal Hell and had to some how keep going and keep living.
Everything inside of us fought letting the NICU become “normal”. The more normal it got the more our new reality set in…and quite frankly that was terrifying.
You helped us “break in” to our new roles and our new normal. You let us have our NICU parenting growing pains. You lead us through our darkest days. Days I would give anything to never have to relive. Days that were worse than our most terrifying nightmares.
You held us when we cried. You held our hands when they trembled with fear. You gave us hope when every stat, result and test told you there was none. You were friends, more like family when we felt so alone. You saw us at our worst. You saw our faith waver. You saw us yell at God, plead with him, beg him on our knees at the side our babies isolettes.
But more than that you held my babies when they cried out when I couldn’t be there. Through pain, through illness, through long nights, you held them when I ached to. You held there hands when they endured test after test, procedure after procedure and fight after fight, you gave them something to hold on to. You gave our boys hope you took precious time out of your very busy days to take time to make sure they felt that hope and love. You in their darkest moments made hope a reality for them. You were and always will be their family. You cared for them in ways I as their mother couldn’t. You cared for them in ways I wish I could have. You loved them right along with me.
You walked this horribly hard long road side by side with us. You carried our boys through it.
I will never forget our bond. The tears in your eyes when words didn’t need to be spoken. When medical diagnosis didn’t matter and we were hanging onto a miracle. I will never forget some of your eyes as parents yourselves seeing us walk a path that is too your worst nightmare. I will never forget the unwavering faith each of you had in my boys. The conviction that they would be ok and we would be taking both of them home with us.
I thank you for being patient with us when we panicked over every little thing, like when we were convinced a brady meant our son was going into cardiac arrest because a “heart event” wasn’t something we had gotten use to yet. I thank you for being so kind when we called you every two hours and called you at 2 or 3am just to call and see how our boys were doing. You knew we didn’t want to have to call that we wished with all our might we could just walk to our babies cribs and check on them and they weren’t a phone call away. Thank you for not getting frustrated when we went crazy and understanding it was our job as mom and dad to go crazy over our boys.
You each are so selfless. I am in awe of all of you. I admire each of you. I honestly do not know how you do what you do.
We were told on a very dark day, by a very wonderful person when I asked them, “how do you do this? How is this your job”, and they replied while holding me by the shoulders, “because I see way more miracles than I do tragedies, you just have to hold on to that miracle and not let go.”
So we held on, with all of our might we held on.
And now we are here…at the end.
While we don’t have much to give, God knows if we could we would we wanted to know that you each have a part of us a piece of our hearts and a place in our family for the rest of our lives.
Our boys will hear about their funny, sweet and kind nurses and their wonderful doctors and the team of miracle workers that cared for them. They will hear about their first holiday’s spent with you all and see pictures. We will make sure they remember you all.
I know it must be hard to only get updates that are few and far between. I know how rewarding it must be to see those miracles come visit. And I can only imagine it is hard for you when they leave too…
Just please know every time I kiss them goodnight and tuck them in…every time they laugh…for each milestone they hit…for every day I get with them…I will thank God for each of you.
Because with out all of you those moments wouldn’t be possible.
Thank you for all that you do.

All that matters.

I feel like I should share a bit on our feelings on this weeks events.

This past Friday we got a call, one of those calls you dread from the NICU.

We were sleeping when the phone rang at 8. We had been up from 5am to 7 and were able to get both boys back to bed and by some miracle get back to sleep ourselves.

Kevin was closing that night at work so we had time…then the phone rang. First mine and it was charging in the living room and I didn‘t have time to get to it. I didn’t have to see the calledr ID to know that no sooner had my phone stopped ringing and Kevin’s started it was the NICU, and it wasn’t going to be good.

Kevin picked up his phone and I sat watching him, watching his breathing change to deep heavy breaths as he just kept repeating, ok…ok…ok….

I silently motioned our hand signal for these kinds of phone calls…since it is torture on the person not on the line and our house is too loud for speaker phone we give a thumbs up, thumbs to the side and a thumbs down.

Kevin gave me a side thumb…then a down.

The phone call seemed like it took forever. I thought it was going to be about his kidneys because he had an ultrasound done on them the day before in search of a cause for his high blood pressure and we were expecting the results that day.

Kevin got off the phone and told me Aiden had, had a ‘breathing event’. I said, “like what? Apnea? They wouldn’t call for apnea….what do you mean?”

He then said I should call to talk to the NP, that he is intubated again and could not breathe and they tried everything they could before intubating him but they had to to save his life. That his blood pressure bottomed out and he was gasping for air and they had no choice.

I called and they tried to explain to me what happened but they told me they couldn’t answer why because this came out of the blue.

Just the day before he was doing SO good. He was happy, awake and smiling. Five different people in the NICU told us how great he was doing. We left feeling more optimistic than we had in a long time.

We were in shock to get such a phone call after he had been doing so well.

They told me they started him on antibiotics, stopped his feeds, got xrays, blood cultures, tests and gases and a virus screen. But they had no idea what could have caused this.

As the morning went on the why got more elusive. His test were coming back good. His CBC was almost perfect.

While we were thankful that his tests were coming back clean, it got scarier and scarier because the more tests we ruled out the more that lead us to believe it was him and not a virus or infection which is much easier to treat.

If it were him this could happen again…and next time we could not be so lucky to have him in the NICU with a nurse standing next to him when it started.

Our family visited him all day long. He was sedated to be able to handle being intubated and we were told to take our time coming up there so we could have more answers.

That afternoon as we were getting ready to head out the door Kevin’s phone rang, he was in the middle of a dirty diaper and handed it off to me and that is when we found out what had happened.

They told me they knew what had happened and they were very upset. I was so scared to hear what they were going to tell me next because it was obvious this person had been crying.

They told me it was their fault and it was the medication he was put on for his high blood pressure, he was overdosed.

That they had prescribed him to get the dose in mgs not mls (1ml = 1000mgs). And he was given it in mls.

It caused the episode and that he was at a point where they knew he would be ok and not have any lasting effects.

We are lucky it was this drug because it is one of the few he has been on that would not kill him or cause lasting effects.

During the conversation I was in a state of shock. I felt pure anger and rage and at the same time pure relief and thankfulness.

The person who made the mistake loves Aiden. Honestly loves him. They have been with us since the beginning and have done so much good for him in the time he has been here. This person has been an advocate for us and him and always taken the time to guide us through these dark days.

We were also called by the director of the NICU to explain everything…just to make sure we knew he would be ok and they too wanted to apologize.

It was the first overdose since they had been director of the NICU.

As the day continued we remained in shock, in fact I am not sure it has worn off yet.

Seeing him made it hurt so much worse. When we went into his area the creak of the chair woke him up and he started silently whaling out in pain. Our voices startled him awake and any time he was awake he was miserable and fighting being intubated and crying. We couldn’t even touch him without sending him into a painful fit.

We left very sad. I cried the entire way home.

He was able to be extubated on Saturday and had a very rough day.

But Sunday he seemed much better. His big beautiful eyes looked so tired though. You could tell he was confused and worn out.

He just wanted held, and held he was. Even when we weren’t there nurses took time to hold him.

We have received a lot of opinions on what has happened.

But please remember that if you were in our shoes you wouldn’t be dialing your lawyer, you would be holding your baby. That you wouldn’t be plotting out suing the hospital when they saved your babies life, time after time. You would be asking what would be done to prevent this from happening again. You would be angry but so relieved your baby was ok.

So please understand why we right now are only focused on Aiden and getting him home.

We are protecting ourselves but at the same time Kevin and I are hanging by a thread every day.

Everyday it is hard to get out of bed. It is hard to walk in and out of those NICU doors without Aiden. Our hearts are heavy and just simple daily stresses weigh on us like anchors.

Being a NICU parent is impossibly hard. We fight being depressed and to be honest I am losing the battle. We fight to stay functional. We fight to not be scared every single second. We fight letting the negative take us over.

Right now we need to only focus on the positive. We need to look at this as while this was a horrible mistake they caught it and saved him and that he will be ok and this isn’t something that could happen again…like when we bring him home and we would be sleeping.

There won’t be a frantic emergency where we have to do CPR and call 911. This was acute and for that we are thankful.

We are all only human and every single one of us has made a mistake.

That is why when we ask people to pray we ask that they not only pray for Aiden but his doctors, nurses and surgeons.

Like I said we are still in shock and still processing everything but I wanted to let everyone in on our side of it. Plus the team taking care of him deserves so much credit, they have saved him, they are the reason he is still here, when he was given no chance to live they believed in him and didn’t give up.

The hardest part of being a NICU parent is having ZERO control over what happens with your child. You have to often ask if it is ok to even hold your child. We have to trust them. We don’t have a choice. That doesn’t mean it is a blind trust and that I am not researching every single thing I write down from rounds or the updates and asking a million questions a day and asking the same questions the next day with a different doctor. It means I have to trust that they are doing the best they can to save my son and give him a fighting chance at a happy, healthy and long life.

When you enter the NICU you enter a world you never thought you’d be apart of. You see things you can’t believe you weren’t aware of and wish you weren‘t. You can’t believe that while you went on happily with your life before that there have always been families and babies right where we are now. The NICU team becomes part of your family. They become mom’s to your babies. They often are shoulders to cry on, teachers, friends and counselors. They have seen me at my worst and picked me back up. We’ve spent holidays together, they’ve seen many of my babies firsts and tried their best to capture those moments for me, they’ve dedicated their lives to a world I can’t wait to get away from.

And I know that they are doing all they can and to me that is enough.

So while we thank everyone for their thoughts on what has happened please understand we won’t be sharing our decisions on how we proceed because that isn’t important. We felt it was important to share what caused him to stop breathing but it doesn’t matter what happens behind the scenes regarding this matter.

Aiden is alive and that is all that matters.

(Also to note, be it ‘behind the scenes’ I wanted to let everyone know the hospital in order to make sure this never happens again there has been a change in how prescriptions are placed and the ml button has been removed and you must write in if you want mls so no baby will be overdosed because of the same mistake again)

living for the right nows.

I have really missed writing these past few weeks.

It has been a stressful few weeks. We all came down with the flu, our washer broke and I had several doctors appointments I couldn’t put off any further. So between squeezing in time for the laundry mat, being sick as dogs and squeezing in blood tests and pharmacy, doctor and urgent care trips on top of my pumping every two hours and once we were better trips to the NICU…it has been crazy.

Add to that Noah broke our laptop (he figured out how to unscrew his sippy cup and drowned it in apple juice) and it destroyed all of my half written blogs and thoughts as well as all the billions of pictures I had saved on there. I just couldn’t bring myself to draw on new ideas or try to rewrite those words.

I didn’t care that he broke the laptop…this entire journey has given us perspective. Noah was ok, laptop wasn’t…only one of those things matters.

Writing has always been cathartic to me, but even more so now. It helps make it normal. Everything in our lives is so abnormal. Putting our experience out there gives it a place, a voice and helps stop it from consuming us. At times it feels like this experience is eating us alive.

When we were pulled into this black hole of becoming not just mom and dad but becoming preemie parents our entire perspectives changed as parents.

Instead of dreaming of our children’s future, what sports would our boys play… rather would they even play sports or would they join the choir or band….or would they be book worms and get lost in books instead. What would their first words be? What will they dream of being when they grow up? Who will their friends be…who will their first loves be?

Now we can’t look that far ahead. Being a preemie parent you are forced into the present because if you wonder too far into the future you’ll lose your mind.

Thoughts into the future are no longer viewed through rose colored glasses as they were with Noah. We worry will Aiden be able to play sports if he wants to? Or will he be in a wheel chair? If he is, will it break his heart to see his brothers, his twin brother running around? Instead of dreaming of first words, we worry if he will be able to even speak. Will Aiden be able to dream? Will he be able to make friends? Will he ever find unconditional love outside of our family?

These are our raw fears. No matter what his future holds, wheel chairs, PVL, cerebral palsy, it doesn’t matter. He is perfect. But as his mother I can’t help but want him to never struggle. To never have to overcome such hurdles. With Aiden’s brain injury (PVL) due to becoming so critically ill we have no idea what his future holds. He could have very mild effects to completely debilitating. They can only tell us that early intervention is our best resource in battling whatever challenges lie ahead.

So instead of focusing on all the what ifs we have to focus on all the right nows and things we know.

Right now he is breathing. He smiles when I sign to him. He loves his pacifier. He is feisty. I know he dreams because of the sleep smiles he makes when he drifts off in my arms. I know that he is strong and I know that he is loved.

We will celebrate all his milestones. Every single one. Every single piece of good news…heck we even celebrate no news…because it isn’t any truer than in the NICU sometimes no news is good news. Today he went up .5mls on his feeds! Every .5ml he gains is as exciting as when Noah took his first steps. Way to go Aiden!! You are up to 13mls buddy!!!! You are doing such a good job!! I can’t wait until you are eating us out of house and home and you roll your eyes when I tell you (again) how I celebrated when you made it up to 13mls of food an hour!

It is hard to not ask for goals and timelines from the doctors. I am not a good ‘waiter’. When I was diagnosed with thyroid cancer the very worst part, above the radiation and surgeries was the waiting. That seems like a walk in the park as compared to the waiting that has come with Aiden and Evan’s journey in the NICU. Waiting is a cancer in and of itself.

I like to plan. I research too much on Dr. Google. I worry, a lot. I am scared.

This entire situation is forcing me to be someone I am not. It is forcing me, like a square peg in a round hole, to realize we ultimately have no control.

Which to me (a control freak) is paralyzing…especially since it is over my babies.

So instead of focusing (panicking) over all the millions of things I cannot control right now, I will focus on what little I can.

Because the little bit I can control is the most important part.

While I don’t have an M.D. after my name I am mommy.

And I think that I have the best medicine of all: love.

getting to hold Aiden and Evan together for the first time

getting to hold Aiden and Evan together for the first time

Aiden and Evan’s support page…please pray and share their story..there is no such thing as too many prayers.  We only ask that people keep them in their prayers and send them well wishes.

https://www.facebook.com/PrayForAidenEvan

tears.

I had planned on writing a post about our fundraiser…a post about New Year’s and all our hopes for the next year but I can’t.

They are all half written and I just can’t pull them together.

I am just so sad.

I thought I was having a good week. I kept a mainly straight and happy face at our fundraiser. I was so afraid if I started to cry or took a second to be fully present I would start crying and not stop and make everyone feel uncomfortable.

But the fundraiser was so what we needed. It felt so good to just be around people. So many people came out to support us. We were so afraid to go thinking we might make everyone feel weird. We feel so out of our selves right now. In general we feel awkward. Our conversations consist of medical stats and the constancy of poop.  We don’t really know how to just be us anymore. Luckily every single person that came somehow knew just what to say and how to be there for us. Each person that came brought a sense of calm, comfort and love to us.

I think it was because there was so much love in that room and all for our boys, all that love let us feel like us again for a little while.

New Years Eve came and we spent the evening with the twins at the hospital. This week Kevin has been taking it all very hard. When we parked at the hospital we spent almost a half hour talking, well me talking to him. He said to me, “I feel like I am losing control of my brain, I am never like that. I am so scared.” For Kevin to say that it cut right to the core, that is a very un-Kevin like thing to say. I tried to make him feel better. When one of us is laying down at rock bottom somehow the other gains strength to help the other.

We spent about an hour with them when we had both realized we both had forgotten to eat that day. It was like once we both could see and hold them and feel that they were ok our brains then decided to take care of themselves knowing the boys were ok.

We had a dinner date in the cafeteria, two deli meat vending machine sandwiches.

Once we went back up to their room I fed Evan and I had an anxiety attack. I had been holding him and when I went to put him in his crib he started to cry. I picked him back up and he cooed and grabbed my shirt and fell back to sleep.

He wouldn’t lay in his crib without crying but every time I picked him up he would grab on to me and fall asleep, just like Noah did when he was so small.

No matter how much I tell myself it is going to be ok. No matter how much my brain tries to make this normal. Nothing can numb the aching of my maternal instinct. Nothing can stop my heart from feeling complete happiness and sadness at the same time when they coo and their tiny fingers wrap around mine seemingly begging me to stay.

I shouldn’t have to leave them. I should be there in the middle of the night when they cry out. I should be there to rock them to sleep. To feed every bottle. I should be able to kiss and love on them whenever I want to, not watch them through plastic panes on isolettes and them tethered in tubes.

I keep repeating to myself that there has to be a plan. There has to be a reason. Everything is how it is supposed to be, that this all happened for a reason.

But how as a mother do I accept a plan with such pain and such trails for my babies? How do I accept this?

Maybe it is hitting harder tonight because it is just me and Noah since Kevin is at work.

I don’t know what it is but God it hurts.

tears