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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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)

I am not meant to handle this.

I don’t mean this post as a rant. I also hope that it doesn’t offend anyone but I have to be honest here. It is a place where the good, bad and ugly can come out.

While I use to have the luxury of editing and quietly writing these posts now they seem to come when my brain is over flowing and consuming itself and I need a place to let some of it to come out. They are usually raw, full of errors and at some points I am sure I am the only one that knows what I mean.

One thing you wont hear as a NICU parent is it gets easier. The absence of that advice is advice enough.

It doesn’t get easier, it gets harder. 

What you are told is one day at a time and at times that it too much.

That is where I am hanging right now. I am taking each day hours if not minutes at a time.

In this struggle I keep getting hit over the head with the sentiment, “God doesn’t give us more than we can handle.”

But I am telling you plain and simple He does.

No I am not dead, I am technically “handling” it but I can tell you right now this is more than I can handle.

I don’t understand how this is meant to be comforting.

How is this supposed to comfort people who have lost a child, lost a spouse, are going through divorce, loosing their home or even dying?
One night, a sleepless night, the night after Aiden’s surgery I cried out to God angry.

I wanted to know why God would have this as part of Aiden’s plan. How could this be the path for such a perfect innocent baby? It was bad enough that he and his brother were brought into this world far too early and have had to move mountains since their birth but to drag him to deaths door and make him fight his way to survival as a frail innocent child unleashed an anger in me that I can’t put words to.

As we sat in his room the days before his surgery, when he was almost guaranteed to die I just kept asking people, “why would God bring Aiden in this world only to live such a short life full of pain?”

The idea that God is giving AIDEN this, giving ME this, giving our FAMILY this because we can “handle” it infuriates me.

And I know that even if this is a part of a plan and God did choose this for Aiden and for us he would understand my anger as Aiden and Evan’s mom. I am their protector this is my job as their mother.

What I feel, what I WISH people would say is this isn’t yours alone to carry.

What I wish people would say is that you AREN’T strong enough to handle this, let God carry it for a while.

This may be part of a plan.

This may have be “given” to us.

But with 100% certainty this is more than any of us can handle. It is bigger than us.

Even if God did give this to us, we were chosen for this struggle, please don’t say it.

It does sound warm and comforting until you are the one wondering, “Oh, God why?”

I can tell you with certainty holding my son last night, a week with out food in his belly, 6 days out of his third major surgery, hooked up to monitors and tubes down his throat, wild eyed and crying out in frustration, pain and hunger rooting around at my chest instinctually begging me for food and then having to leave him was last night more than I could handle. 

The phrase, “God doesn’t give you more than you can handle”, isn’t in the Bible.

Actually in the Bible time after time people are in fact faced with much more than they could handle.

What always rings true though is that even in the darkest hour God is there for us.

So please before you offer what we know ultimately is well meaning comfort know that we aren’t handling it because we aren’t meant to handle anything alone and that is ok.

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trying to comfort aiden last night

Welcome home Evan.

Dear Evan,

I am so proud of you.

I have been dreaming of writing this letter to you since you were born.

You are home.

You right now are sleeping peacefully on my lap, smiling in your sleep.

It makes me so happy to see you smile, even if it is just in your sleep because of the nightmare you have survived. I am glad your battle didn’t rob your happiness.

holding hands

If anything, all I can hope besides for your health is that this burden you and your brother have had to go through rest on your dad and I’s shoulders and you both will leave this journey far behind you, never knowing how strong you both had to be.

1 week old

1 week old

I can’t believe how far you have come…you the youngest…the littlest Teall.

so small so strong

so small so strong

I prayed hard the night before you came home that all that you have been through would be left at the hospital doors and bringing you home would be a second ‘birth day’.

This birth day, unlike your actual birthday, is a day to celebrate you fighting so hard to be in this world, it will forever resemble just how strong you are.

You are so loved.

safe in daddy's arms

happy in daddy’s arms

Having you home, to hold, kiss, love, hug and just get lost in staring at your sweet face has filled half the hole in my heart that has been empty the day your first home became the NICU.

our home away from home

our home away from home

While your NICU journey was a roller coaster filled with fear, heartbreak, terror and concern. And those sleepless nights that were supposed to be from your newborn cries were from the ache and worry in my heart leaving you and your brother there, I want you to know there was a lot of love and happiness entwined in that journey.

There are men and women there who saved your life, who love you and cared for you and filled in our roles as mom and dad when we could not be there for you.

They held you, sang to you, cuddled you. They changed your diapers, fed you bottles and bathed you. They also measured and weighed you, took your temperature and watched you ever so carefully. They xrayed you, hooked you to IVs and PIC lines and administered many medications to you. They made diagnosis, they made medical plans and eventually they discharged you, to many of them it was bittersweet. They were happy to see how far you had come and that you were finally going home but you wormed your way into so many of their hearts and they were going to miss you.

They were everything we wanted to be for you and everything we couldn’t be.

I read a quote the other day, “sometimes super heroes don’t wear capes”, it couldn’t be any truer. You and your brother were cared for by super heroes and I plan on telling you that your entire lives, their titles don’t serve them justice. I can just see you both telling all your friends on the play ground in elementary school that you were both saved by super heroes as babies and it makes me smile.

We will forever be thankful for those super heroes.

You also have a lot of people who love you and have not met you. They love you through pictures and cling to updates. You have only been lucky enough to meet your Grandma’s and Grandpa’s because of how frail and fragile you are. Even though your uncle’s and aunt, your great Grandma, family near and far and dear friends who have said countless prayers have yet to actually meet you – they love you and even though you being home doesn’t change the fact they can’t visit you and hold you like they would want to they are so thankful you are home.

evan morning

Your journey in the NICU has reminded us how quick life can change and that it rarely takes an expected path.

Because of that we look forward to the future with you and your brother but more than that we are thankful for the right nows.

And right now I can’t express to you just how thankful we are that you are home.

evan_squished_2

So here is to your birth day, your fresh start, your new beginning, we are so excited to see where you will go.

Today I cut your hospital band off my wrist. I kept it on all this time because it symbolized our bond from the day you were born. I promised myself I wouldn’t take it off until you were home safe and sound. Whenever I felt weak I drew strength from it, inspired by you and your brother. Before you could know love, laughter, joy and peace had to be strong and because of your strength the rest will follow. I have no excuse to be weak…you were born at 28 weeks, 2lbs 10oz and you are such a warrior.  You are an inspiration.

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Welcome home love, we missed you.

welcome home

With so much love,

Mommy

A gift.

One of the hardest parts about all of this is knowing the other half of my parenting team has to go through this.

My husband is by far the best man on the planet.

I’ve known that since we met in middle school at 13 years old. He is a one of a kind.

If you met him you would agree.

He doesn’t hate anyone. He cares genuinely for everyone. He is so strong and brave. He is logical and level headed. He is the hardest, most dedicated worker I have ever met. He always puts everyone else ahead of himself. He is selfless.

He is an amazing father. Even after barely making it in the door after a long day at work, no matter how tired he is, no matter how bad his back or head hurt you would never know.

Within seconds he is on the floor rolling around with Noah or swinging him in the air and letting him crawl all over him even before he takes off his shoes.

Kevin is always my rock. From battling cancer to when I have a cold, he has been there.

I can’t help my mind from wondering every time I see him holding one of the twin’s hands or snuggled up with Noah taking a nap so peaceful, how could this happen to him?

No parent deserves this kind of pain, but oh my God why him?

He is perfect. He is so loving. So kind. He deserves so much more than to watch his children struggle for life.

This has tormented me since I was put on bed rest. He made at least a dozen trips to and from the hospital when I was on bed rest each day. Sometimes just making a trip so I could cuddle with Noah for 30 minutes, sometimes the trip to get him and back was longer than the visit but he never complained. When I was in the hospital he painted my toe nails so I wouldn’t feel like such a mess. No matter how little sleep he got or how hard his day was you would have never known, he was there by my side every second he could be.

When I had the twins, it was harder but he never lost faith. Even when I couldn’t pull myself together, he was there for me…even though I know inside he wanted to fall apart too. He told me one night when I told him it was ok to fall apart, “no it is ok, this is my job, I’ve got you, I’ve got Noah, I’ve got them, it is going to be ok.”

Then last night, watching Kevin and Noah play and run around the house I think I found some clarity.

Kevin has a gift with children. They flock to him, he is approachable to them.

In my mom’s day care when we would go to visit the kids would swarm Kevin who would sit on the floor and pay special attention to each and every one of them all the while entertaining the entire group. Normally shy little ones brighten up around him and come out of their shell.

Noah lights up in a special way when Kevin is around, he truly has a gift.

And maybe, as sad as it is, maybe that is my answer to “why him?”

Because Aiden, maybe even Evan will have needs to battles to overcome that will seem like nothing with a dad like him.

While Kevin is phenomenal with Noah, our “normal” crazy toddler I know his gift with children will end up being better than medicine for Aiden’s brain diagnosis and whatever the future holds for Evan.

So while I wish so much could be different for my babies and my husband I know that Aiden and Evan have someone extra special on their side that will get them through anything and they will be lucky enough to call him Dad.

And if I have done anything for my children it is give them the gift of marrying the best man in the world.

Daddy holding Evan for the first time

Daddy holding Evan for the first time

Aiden's first minutes of life and first time meeting Dad.

Aiden’s first minutes of life and first time meeting Dad.

Kevin and Noah at 3 months taking a nap

Kevin and Noah at 3 months taking a nap

Please pray for our boys.

I do not have time to post or write but my husband and I are reaching out to anyone and everyone to pray for our boys who are fighting for their lives. 

I don’t have much time away to post so here are the updates via facebook. Please pass this along and tell your friends and family. 

November 27th:

Please pray for Aiden. He has contracted Necrotizing Enterocolitis which is a very, very serious infection. We have been told that the next 72-96 hours are very critical and we could lose him if the infection gets to be too much and things can change at a moments notice. Please, please pray for him to come through this healthy and without needing surgery as fast and as easy for him as possible. He is our little fighter, believe in him as much as we do

December 1st:

This update comes with more impossibly hard news. Evan has also developed Necrotizing Enterocolitis. While Aiden is very, very slowly trying to recover and still is facing more surgeries and is walking a tight rope to recovery that could turn at any moment, Evan has just started this battle and the path it takes is unknown. We are hoping that since it was caught on the gut feeling of one of their 

doctors so early that his battle will not take the same path, we are so scared and lost in all of this but we know without a doubt that the prayers made a difference. With no known reason 30 mins before Aiden’s emergency surgery while in organ failure he began to improve slightly on his own, a little push that helped him survive the surgery. The doctors explained it as a miracle that they couldn’t explain. Our boys are so strong, such brave little fighters that shouldn’t have to fight this battle..they are just babies. So please help them be strong and pray for them. Please reach out to others to pray for them around you, that is all we are asking for. We love them so much, please pray as hard as you can for them. You don’t have to pray for strength for Kevin or I because these amazing little boys are our strength. Please say a prayer for Noah too…this has been so hard on him. We just wish for as many people to pray for our three boys.
 
 
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Aiden
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Evan
 
 
 

miles away.

This entire experience is making me feel hard and ridged.

Only a few things can really snap me out of it.

The never ending energy ball that is Noah and his unwavering and overwhelming love for me and the fact that he has made sure to let me know how very much he missed me while I was in the hospital.

And getting to see Aiden and Evan.

Everything else I feel like I have put up a shield to.

Even Christmas lights make me mad. If you know me, you know that isn’t me.

I know the only reason I have defaulted to this state is because even as cold and hardend as I feel I am only seconds away from breaking down all the time. It is easier to just put up the, “I’m ok” front instead of showing the world how I really feel. If I did that I would never stop crying.

There is always a crack in my voice or a chin quiver waiting around the corner. Whether it be in giving an update on the boys or finding a strip of their ultrasounds from just a month ago when everything was so perfect.

I don’t want to feel this way and hope it will fade.

It is just hard to imagine feeling happy outside of my boys.

Even when the twins have good days, they are still filled with tubes and not snuggled on my chest being rocked to sleep. Leaving your baby or child in the hospital never feels right. There is no good night of sleep when your little one is there, NICU or not.

Even when I think about taking them home I am filled with such fear that something will happen.

It is hard to think about things like Thanksgiving, Christmas or New Years…those were milestones to hit DURING my pregnancy, not their NICU stay.

Kevin and I have both decided this pregnancy will be our last. Three perfect, healthy and happy boys is all we could ever hope and dream for and that is all we want.

Plus the csection was very aggressive and I had to be cut more than once (horizontally and vertically) which just adds more danger if I were to get pregnant again.

I can never go through this again. I can feel myself aging. Like days, sometimes it feels like years are being taken off the end of our lives by just in sitting and staring at their monitors. With every beep or alarm our hearts stop.

So in a way I am mourning that phase of my life. I loved being pregnant. I thought I was doing such a good job at it. I am still in pure shock that I am not pregnant.

When I go to eat a turkey sandwich my brain still tells me, “no deli meat! It’s not good while you’re pregnant!”

I still sleep with my hand on my stomach and sometimes I just cry because there is no kick back, just another painful reminder.

I think if it weren’t for Noah I would completely unravel.

I would move into the NICU. Live in the rocking chair until they could come home and then I would just sit and watch them breathe.

But I can’t do that.

I have to get up. I have to be functional. I have to be a mom still. A good mom. I won’t give myself any other option.

Now I do admit someone might have had a cookie with breakfast and we may have had more fast food in the past two weeks than we have had in a year but I won’t let Noah’s happiness suffer because my heart is suffering.

I can’t let Noah miss out on anything, he is at such an amazing stage, this will be the first Christmas he actually gets and understands I can’t take that away from him or taint it with sadness.

Luckily I married an amazing, amazing man.

The night we came home from the hospital Kevin asked me to stay in the car and ran in the house. I assumed he was just trying to calm the dogs but when I walked in I saw our tree lit up with gifts from people from his work filling under the tree.

He knew how much I loved putting the tree up the day after Halloween and how sad I was I couldn’t this year and he also knew how hard it would be to get me to want to once out of the hospital once the babies were born.

So one day he woke up at 4am and snuck out of the hospital room and went home and took all of our Christmas stuff out and set up the tree and placed the decorations next to it so we could do it with Noah before he went to work for the day.

I don’t know what I would do without my husband.

So even though driving down the Main streets makes my heart ache with all the lights and cheer there will still be light and cheer in our home.

To quote my favorite Christmas song, “Have yourself a merry little Christmas, Make the yule-tide gay,
next year all our troubles will be miles away.” That is all I can hope for.

We will still make memories because one day this will to all be a memory and I will have all three of my little boys filling our home with love and cheer.

Twin Nursery: In progress.

Here are some sneak peak pictures of the twin’s VERY in progress nursery.

We would be further along but we like naps…we play with Noah vs. finish a project…watch Married to Jonas while eating ice cream (ok..that one is all me) instead of painting.

So here we go…

You remember that wall we were so excited about…

Well…a day later it did this…

Fail. I may or may not have cried. But first I freaked out.

I was home alone, it was 11pm. Kevin is at work, Noah is asleep and I am about to hit the hay. And I hear a strange noise upstairs…like any rational person. I freaked out. Like thought about dialing 911 freak out.

I turned off the tv and peaked my head up the stairs.

No killers…no burgalers…at least from what I could see from the bottom step…the step I assessed was close enough to assess whether or not the noise was threatening the life of Noah and I and I needed to run holding the two pugs and Noah screaming out of the house.

I sat back down and turned back on Married to Jonas and sort of forgot about the noise.

Then it happened again – expect it wasn’t a creepy little creaky noise like I had heard earlier. No. This was a run out of your house because you either A) have poltergiest or B) your house is falling down.

I called Kevin and told him I was putting him on speaker phone and to stay on the line while I went upstairs…where I found the culprit.

Our ‘feature’ wall was falling down.

Bahumbug.

When I saw all the boards on the floor I was sort of wishing it had been a poltergeist.

Luckily my amazing husband, assessed the problem and put it back up reinforcing it three different ways.

And now it looks like this..

We still have some touch ups to do but having all the boards up makes me one happy pregnant lady.

Next up the dresser redo.

This is the before..

This is the only picture I got of the priming process but next will be the final coats of paint and some nobs.

We set up the cribs, they aren’t where they will go and we still have to finish priming/painting the floors but some antsy pregnant woman insisted on having them up.

This is a picture of the TEDIOUS process of my DIY mobile for the twins.

I found a mobile on Etsy made with paint chips that I was in love with but with a $50 price tag x 2 = no thanks.

It took 630 circles to make the mobiles but they turned out great!

Here is a sneak peak of an almost finished one.

Lots more to do…lots more to come.

But now ice cream is calling my name!