Catching our breath.

Kevin called on his way home from work. He could tell I was distracted.

I hadn’t expected him home as I thought he was working a later shift but I had his schedule mixed up.

He asked if everything was ok.

I told him I couldn’t talk that Aiden was acting weird and something just wasn’t right.

He said he would be home soon and I hung up the phone.

I grabbed the hospital grade suction machine we have and used it on him and got nothing, even though he sounded terribly congested.  I then put him in his bath seat.

Aiden loves baths, they are the magic fix all for him.

The CP causes him to be so tight all of the time takes quite a toll on him and relaxing in the warm water offers some relief from that.

He calmed down and seemed to be doing a little better.

I hadn’t made dinner it was already 8pm. I was swaddling Aiden and rocking him trying to figure out dinner with Noah at my feet, tugging at my shirt, “EAT! EAT!” doing the sign for eat over and over. He heard the door and ran from the kitchen. I heard the excited squeals from Noah, “PEEEEZZZZA!!! PEEEEZZZAAAAA!!! DADDDDYYYY PEEEEZZZZAAAA!!!”

Ok. One problem solved I thought.

Aiden was comfortable and relaxed after the bath, I dressed him and put him in his rocker right next to me while we ate dinner.

His breathing was calm, his hands folded together over his chest, totally relaxed and following the rise and fall of his chest.

I told Kevin, “keep an eye on him, something just isn’t quite right. He has had a funny cough that started up this evening and his retractions looked a little worse right before his bath.”

He looked him over and noted he was barely retracting at all and seemed peaceful.

We both did the mental, “whew, thank God,” sigh of relief.

But about 15 minutes later he awoke from that quiet sleep with the same peculiar cough I had heard earlier, but this time he couldn’t really get himself out of it.

I got out a stethoscope and listened to his lungs and while I am no doctor or nurse I knew something wasn’t right. One side sounded noticeably different.

We packed up the boys with the thought of heading to Urgent Care but realized it was a Sunday and they were closed.

Kevin called his mom who is a NP and asked if she could listen to him as she only lives a block away.

Aiden is a funny case, retractions are normal for him, noisy breathing is normal for him, but this was just a little worse. Having someone that knows Aiden is beyond helpful because taking Aiden in without knowing his baseline would land him in the ER. Something as simple as croup can sound terrifying when it comes to Aiden and we didn’t want to expose him to the ER unless we had to.

She listened to him and she confirmed our gut feeling. He needed to be seen.

We left the other two boys with his parents and rushed to the ER.

I sat in the back with Aiden, it was dark and I couldn’t see him well so I kept my hand over his chest to feel him breathing.

It was steady but he was stressed. I turned the light on and unzipped his outfit after I felt his rib pulling in a way I couldn’t believe. He started to have substernal retractions. It looked as if he had a golf ball on top of his sternum every time he took a breath in.

It looked as if his heart was literally trying to come out of his chest.

I told Kevin to just pull in front of the doors of the ER and I would get out and he could follow.

I got out of the car and Aiden looked at me and I pulled the blanket over his head to shield him from the wind.

I made probably 15 steps from the car to the doors.

I walked in and there was someone in front of us signing in. The nurses made eye contact with me and immediately stood up and I blurted out, “he is having trouble breathing, he 3 months premature, he has BPD.”

Just then I pulled him down off my shoulder and he wasn’t breathing.

I called out to him as the nurses surrounded me.

“Aiden!?”

The nurses called for more help and gave directions to each other.

“Aiden?? Aiden!!”

My voice sounded like it was coming from someone else.

I pushed on his chest and rubbed my knuckles against his sternum.

His arms fell at his side limp. For him and his CP that is near impossible for him, something was very wrong.

The nurses started moving us to the trauma room and after a few tries they finally heard breath sounds.

He began breathing again but was still not coming to.

They had me lay him on the bed. He looked so tiny.

I began to rattle through his symptoms and his medical history.

People filled the room.

So much of the time in that room was a blur.

He came to once they began sticking him with needles trying to get an IV and began deep suctioning him. What they were getting out they called “cement”. The amount they got out they could not even believe.

He fought through every second of them working on him.

He would hold his breath and his muscles would spasm and he would arch his back and his raspy voice whaling out in pain.

His body began to be covered in broken blood vessels, he was so stressed he wasn’t breathing, they kept having to blow in his face.

Kevin filled out the forms. I couldn’t.

I just kept watching the faces of the people working on him looking for answers.

They asked us to wait in another room and I refused to leave.

I was shaking, tears falling, flash backs from the NICU when he was going into organ failure were flooding my brain.

The alarms. All of the tubes. Blood gasses. Xrays. IVs.

It all was a nightmare.

They began to get cultures on him for everything they could think of to see what we were up against.

After what felt like an eternity people began leaving the room.

The doctor in charge of his care said that they needed to get him in my arms ASAP because she knew it would level out his stats.

They handed him to me and he was covered in blood.

They had stuck him so many times.

I held him close to my heart, kissed his sweaty forehead and breathed him in.

His stats began to normalize.

Another nurse came into the room to take over for the other and in their conversation with each other they said, “RSV positive”.

“Wait. RSV positive? He gets the shots….he isn’t held by anyone besides us, his grandparents and nurses and doctors….we stopped doing group speech for our toddler so we wouldn’t be bringing in the germs….I don’t get it.”

They apologized and said they had seen it a lot this year.

They wheeled me sitting on the bed holding Aiden up to the PICU.

Kevin stayed with Aiden while I left the room and called our families and gave them updates.

Aiden was so tired from fighting, he actually fell asleep.

It was nearing 4am and I pulled out the couch so Kevin could get some sleep before work the next day, he still was going to have to go home and get changed because he was still in his work clothes from the day before.

I fell asleep sometime after Kevin left in the morning for an hour.

I couldn’t let my mind rest. The familiar clammy plastic couch pull out bed. The sound of alarms breaking night. It felt like the nights where we weren’t sure he would make it through.

It all felt so surreal.

A nurse came in the room to tell me to not beat myself up, that it really was a phenomenal thing that this was his first hospital stay since leaving the NICU and that he was just needing basic supportive care.

We were there from Sunday through Wednesday.

He did really well with his stay. Everyone remarked how well he was doing and that he was such a strong fighter for everything he had been through.

He began having secondary issues the second night we were there. He started feeling well enough to realize he did not want to be at the hospital and was stressed about it.

His GI systems is so sensitive any change in diet or stress will be shown via his GI system.

He started dumping. He would have a bottle and make a diaper before he finished it with that bottle.

They were not adding rice cereal to his bottles to slow his food down and that with the stress created a very bad GI problem for him.

On Tuesday I barked up enough trees to get him his rice cereal and it helped but the stress was still overwhelming for him.

Any hospital stay is a stressful one. The shuffling around of Noah and Evan. The schedules arrangements. The exhausting job of being an advocate for a very unique little boy.

Having to retell every step of his history to every new nurse or doctor we came across.

Seeing your child stressed, in pain and exhausted.

Thankfully we have an amazing support system of friends and family that are there for us at a moment’s notice. Kevin could still go to work, we could still spend time with Noah and Evan who were very upset that Aiden wasn’t home. My mom took shifts being with Aiden after he was stable so we could not totally throw off Evan and Noah, it was so helpful to know what wonderful hands Aiden was in when we left to go see Noah and Evan….such wonderful hands he was rarely put down. It was so comforting to see him realize she was there, he has vision and hearing problems but when he smells her he lights up.

We had frustrating moments at the hospital. Like when a resident came in and asked us if he was struggling so much because of having Downs….which he does not have. That same resident also so tastefully stated that Aiden, “came out the hole with style” because his hair naturally turns up like a Mohawk.

But we had good moments like when a NICU nurse came by to visit (even though we missed her!) it is just nice to know how much she actually cares even all this time late and nurses that went above and beyond for Aiden and us and of course them being able to make the interventions they needed so he could stabilize.

Aiden has been at home for about 4 days now and has really been doing wonderful. That first night he was home was like night and day. He stopped dumping and spent a good chunk of the evening laughing and smiling. Putting him in his crib next to Evan, Evan kept pointing at Aiden and clapping and Aiden almost melted into his bed. The familiar smell and comfort was almost like medicine for him. We hooked up our monitor that tells us if he stops breathing or moving to give us some extra reassurance.

It is easy to lose my breath thinking about the evening that brought us to the hospital.

But that night we were in the exact place we needed to be at the exact moment we needed to be there.

I know that somehow we were blessed with that gut feeling to know something wasn’t right and to act on it.

And that is what has given Kevin and I peace. It is hard to erase the image of your child not breathing from your mind and all of the “what ifs” that go along with it.

But knowing that by some means we were blessed with that sense, that awareness and understanding is what has given us the chance to catch our breath.

And in catching our breath we can just be thankful. 

Image

FINALLY able to eat! He told the entire floor about how it had been 18 hours since his last bottle!

Image

His first morning in the PICU feeling much better.

Image

It is hard to see but that was the last day we were there and the petechiae (broken blood vessels) starting to resolve across his chest and face but they are still pretty bad.

 

Image

Super happy that Daddy could come spend the afternoon!

Image

Image

Grandma made sure his crib was colorful with lots of balloons!

 

Image

Only way he wanted to sleep, I can’t blame him hospital beds are awful!

Image

Last day!

Image

Dad got off work just in time to take us home!

 

Image

You did it Aiden! We are going home!!

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.

Image

trying to comfort aiden last night

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

If its not ok it is not the end.

I am not ok today.

Today I can’t shake it. I can’t stop myself from crying. I can’t break my mind from everything going on, every what if.

I haven’t seen Aiden and Evan in two days and today will make day number three because we are sick.

I don’t know what Kevin and I have but it might as well be the plague when you add not seeing our boys to the list of complications from this virus.

Last night I woke up at 2am from a mix of sickness and sadness.

My nightmares are unbearable add congestion to that and sleep is pretty much impossible.

Noah was up from 3am until Kevin went to work so we were all awake, just miserable and in bed waiting for something to give so we could get some rest or peace. That break never came. Kevin’s alarm clock went off at 4:30am and he headed off to work on a couple hours of sleep and Noah and I watched Good Luck Charlie’s Christmas special four times in a row because that is the only thing that can take his mind off being sick. Thankfully Noah and I caught an extra bit of sleep at around 6am but I woke up feeling worse than if I would have just stayed awake.

Noah has been extra cuddly today, which I am so thankful for. After he woke up he just wanted hugs and to tuck his head under my chin and rock.

But now that he is napping the house is so quiet.

I don’t know how to feel anymore.

Every time Kevin and have tried to accept where we are at and begin to feel hopeful or start to try to function normally something bad happens.

When we had just gotten use to the NICU at the Valley and thought “we can do this” Aiden contracted NEC. Then when he pulled through the surgery, Evan got NEC. Then Aiden’s PDA opened. Then they found he has hydrocephalus. Then his PDA surgery.

Right now they are doing an MRI on Aiden and a head ultrasound on Evan.

I am scared to even try to feel normal because I feel like if I do we will get hit with more crushing news.

I am sure that doesn’t make a lot of sense but without fail anytime we start to look at that light at the end of the tunnel it moves further and further away.

The light I want at the end of the tunnel isn’t crazy.

I don’t have crazy dreams, I just want my three little boys to be healthy and happy.

I want three little, loud, crazy, covered in dirt boys.

I want days where they wear my out to the point of exhaustion. I want those days where I want to pull my hair out because they are well, being boys.

I am not asking for this to be easy, I just want to know it is going to be ok.

Because right now nothing is ok.

Kevin and I were at the store last night and a little boy picked up one of those Hallmark dancing holiday things and tugged at his mom’s shirt and said, “I think daddy would like this for Christmas, it sings his favorite song.”

His mom yelled loud enough to be heard isles away, “Enough! I don’t have time for that right now! Enough!”

I know I don’t know her story, but honestly it took everything inside of me not to walk straight up to her and tell her, “have you seen the news? Do you know how lucky you are? At least he is healthy and alive, maybe you should make a little time for him! Because a lot of parents aren’t so lucky!”

I can’t handle people taking their children for granted.

Whenever we go out I feel so out of place, I feel like I have “she is falling apart” written across my forehead.

I often am so scatter brained that I can’t bring myself to remember the things we went to the store for, which right now is just the survival basics. Milk for Noah, diapers, wipes and sometimes infant Tylenol for those awful molars.

The fact that 3 of those things are in the same isle and I usually forget one is embarrassing.

Right now I am just stuck in this weird foreign land of motherhood.

When Noah was a month old I was kissing chubby cheeks and watching him sleep. I had gotten over my nerves of changing diapers and had become a pro at nursing. I proudly strolled Noah around our neighborhood in his stroller and was soaking up every second of his new life.

Now with the twins I can’t kiss them whenever I would like and when I do I have to be ever so careful. I still am scared to change their diapers, I feel like I might break one of their legs if I move them the wrong way, they are so small. I went from producing 150+ ounces of milk a day to now I can barely get 2 ounces a day from the stress my body is under. I can’t stroll the twins around but I do proudly snuggle them when we are lucky enough to be allowed kangaroo care. And now I hold my breath every second of their lives.

When I was pregnant with Noah I was so excited to become a mom and that was with going into uncharted territory.

This time around I knew what I was getting into…and it made me that much more excited.

Then my pregnancy and their lives seemed to get caught up in this horrible train wreck.

I trace back over every day of my pregnancy wondering what happened, what went wrong?

I didn’t eat deli meat, I didn’t drink, I didn’t smoke, I didn’t even eat frozen yogurt or custard as bad as I craved it because it was recommended not to.

I did everything right.

I took my vitamins, drank protein shakes, drank a million gallons of water a day, never even took Tylenol to ease my aches and pains.

I don’t understand.

And I am afraid that I won’t ever understand.

I hope my brain can one day accept that.

Maybe when they are ok…chasing each other around, laughing, eating me out of house and home, fighting, wrestling, just being little boys I will be able to make peace with not knowing why.

Because in the end it will all be ok. 

Our new normal.

This week has been a week.

While so many people are busy finishing up their Christmas shopping or getting together with friends we have been holding our breath waiting/pushing for Aiden’s heart surgery and trying to hold our lives together, but it is getting hard.

This week we were told that they were going to do another echo on Aiden on Wednesday and a chest xray to see if they were going to do his PDA surgery. When last week we were told he was going to have the surgery last Friday. The doctors were hoping his PDA would close on its own but we knew in our hearts it wasn’t going to.

We had done a lot of research and spoke with a lot of doctors and knew Aiden needed this surgery sooner than later. Every time someone would come and listen to his heart their eyebrows would raise and they would make a comment about how large his murmur was.  It wasn’t going anywhere.

Having an open PDA puts a lot of extra stress on a baby and puts babies at a higher risk of developing NEC. So our thoughts were why start his feeds with a HUGE PDA opening and then stop them to do it at some undetermined point in the future.

We spoke with our team and let them know our view on it and they decided in light of his murmur being so loud, him not being able to be on normal fluids (a “double” fluid restriction) due to the PDA and our stand on it to do the echo a day early.

That day I had my two weeks late first post op appointment with my doctor.

I thought I was doing ok that day. I thought I had myself pulled together.

I was very wrong.

I signed in and sat in the far corner.

The last time I was here I was pregnant.

I was still supposed to be pregnant, coming to see my doctor twice every week anxiously awaiting my feisty little boys.

I tried so hard not to cry. Kevin scooted close to me, his eyes so caring, he kissed my forehead and the tears just started to pour.

I tried so hard not to break down. Happy pregnant moms filled the waiting room and my obviously not pregnant self and tears quieted to once happy room to an awkward silence.

All the other women were called before me. All passing me and glad they were not in my shoes.

When my name was called I walked to the back and the nursed asked how I was.

I hate that question.

No one wants to hear the real answer.

How am I?

Horrible. I am living in my own personal Hell. I am in a nightmare I can’t wake up from and that I can’t see an end to.  My soul is aching with unbearable pain every second of the day. There is no break from this torture, not even in sleep. I am the worst I have ever been in my life.

Instead of answering with my bitter NICU mom response I simply said with a cracked voice, “I am ok.”

We were placed in our room and waited for the doctor.

As soon as she came in she saw my face and asked how I was and just as before I tried to just repeat, “I am ok”, this time it came out much more choked up.

She said, “you are not ok, tell me what is wrong.”

I started sobbing and told her it was just too much to be here not pregnant, that I wanted so badly to be pregnant with them right now and I went through everything that had happened and she just stood in awe with tears in her eyes.

She gave me a big hug and told me she would pray for them.

We left the appointment and felt so out of sorts.

We still had not ate but I had a horrible sore throat and still have had no appetite so we decided on coffee and tea. We went to our local Starbucks and tried to feel normal.

Instead we felt like we stuck out like sore thumbs.

Everyone was chattering and laughing and we just stared into our drinks, sipping quietly, our minds going a million miles an hour.

After sitting for about 15 minutes we couldn’t do it anymore and left.

We went back to my mom’s to be with Noah, he is as normal as we can feel. He is such a good normal too.

It was then that we got the call.

The doctors decided to do Aiden’s echo a day early due to his murmur being so loud, not being able to take in fluids at his normal rate (he was on a double restriction) and our stand on that matter.

As soon as they saw the results they scheduled the surgery. His PDA was huge.

They said they were going to do it the next day.

We were caught off guard, not even expecting his echo to be done that day and certainly not expecting surgery the next day.

Admits all of this Kevin has transferred stores and Wednesday was his first day. Luckily he was able to switch everything so he would still be able to work but leave whenever we got the call that they had a time for surgery.

We are lucky he did because they ended up calling and letting us know that a baby in very critical condition needed surgery immediately and Aiden’s surgery would actually be Thursday. He didn’t want to not be there for his first day and was anxious to get started and taking a day off when we don’t have many left to take for him to not have surgery would have been quite a blow to us, luckily Kevin had Thursday off so we didn’t have to worry about juggling anything more than his shift that day.

Kevin got home and we went to see the boys and stayed for most of the night.

We got home and tucked Noah into bed and tried to get some sleep, but sleep never came.

We didn’t sleep Tuesday night either. There is no way to sleep the night before your child is going into surgery.

We just laid there tense and scared. We drifted in and out of small periods of sleep but would wake up from nightmares of monitor beeps and alarms only to be in a worse nightmare of the horrible purgatory we were in.

The next day we were all in a daze, a fearful daze.

We got ready and made our way to the hospital.

When we got there he was being intubated and they suggested we wait around the corner…being told you should wait around the corner because your child is having something done to them that you can’t handle is gut wrenching.

Once we were able to go into his room he was obviously upset. He was bright red and unable to cry due to his breathing tube but his face grimaced in pain and anger.

Even though we were allowed into see him they were still preparing him for surgery and having trouble with his respirator so we weren’t allowed to be very close for most of the time early on.

Here we were back in this hellish state where minutes seemed like hours.

Where doctors come in and tell you all the risks, like “we could get in there and go to clamp the valve and it could go bad and there could be no controlling the bleeding and there would be nothing we could do, he would die.”

It is the doctors job to inform us of the risks and it is our job as the parents to absolutely freak out when told there is such a risk.

before_surgery_pda_3

We had read all the books, spoke to countless doctors and nurses and not one of them mentioned that risk. That was such a hard risk to take in.

Before when Aiden was being taken to surgery he was guaranteed to die very soon without the surgery. This one we were sending our happy little, much healthier little boy into a planned surgery, one that there was a chance he might not come out of but very much needed and was saving his life…just not at that moment like with the NEC surgery. He couldn’t live with this and it needed to be done.

before his surgery

before his surgery

We were asked dozens of times if we had any questions but we had none, none that they could answer any way.

The only thing parents really want to ask is, “is my baby going to be ok, will you fix them, will you bring them back to me?”

before_surgery_pda_2

All I could do was ask them to take care extra care with him and they of course all assured me they would.

They asked us to clear the room so they could start his transport and before we left I knelt down by his bed and whispered, “I love you buddy, you are so strong and this will be over before you know it, eventually you won’t have to be so strong but God has you right now and so many people are pulling for you so if you need to lean on them you can. We all love you and believe in you.”

Waiting for them to be ready to start his transport to the OR seemed like an eternity but when they finally came to take him time went by in warp speed.

They wheeled him to their elevator and we walked the same path we took when he was wheeled down for his NEC surgery.

Kevin and I hand in hand with our moms behind us went to the elevator to meet Aiden in the hall in front of the OR.

In the elevator I said, “I can’t believe this is our new normal, that paths to OR’s and surgery is becoming normal.”

We walked out as he passed and the nurses told us they would let us know when he was done and out of the “danger zone”, the zone where he could bleed to death. While I was comforted they would let us know there was no comforting Kevin or I knowing our baby was going into that danger zone.

We sat in the regular waiting room this time, aware last time we were asked not to because they weren’t sure he was coming back.

Our warp speed came to a stop when he went through those OR doors, time went by so slowly.

I sat in the waiting room so I could see the OR door and I anxiously watched every person and their face as they came out the OR doors. I was searching for some sort of clue, some sort of hope and pleading with God there would be no sign of defeat, dread or failure.

We all tried to make small talk and talk about how good this surgery would be for Aiden but none of us could get our minds out of the danger zone.

After about 30 or so minutes a receptionist came around the corner and looked at us and asked if we were the Teall’s and we said yes, she then said, there is someone on the phone for you about Aiden’s surgery.

Our hearts all paused, somehow I got from the chair to the desk but I don’t even remember walking there. Kevin stood right behind me, his hand on my back and our moms right behind him.

“Aiden’s mom?”

“Yes”

“He did great. He had a huge opening but he did great! He is clamped and we are starting to close him up, we just wanted to let you know.”

The biggest smile burst across my face, I felt so faint.

“Thank you, thank you, thank you so much.”

I turned and said, “he is clamped and they are closing him up, he is ok.”

I buried my head in my hands and everyone gathered around me because I couldn’t talk after blurting out that little bit. I was so happy and in shock from relief.

Kevin came over and said, “I think I just passed out, I really couldn’t hear, is he ok? What did they say, is he ok?”

Our mom’s filled him in and we all hugged over and over in the lobby so thankful, so very thankful.

Dr. Goodwin came out after the surgery was all finished, he is an amazing man. Alice my mother in law described him best, he is a perfect mix of Santa Clause and God. He is the surgeon that did Aiden’s NEC surgery and he has such a confidence, such hope that when you meet with him you know your child is safe with him.

He told us his valve which is supposed to close at birth, was almost the size of his aortic valve and they had to use two clamps to close it but it was closed and went wonderfully.

I wanted to hug him. I wanted to jump up and hug him and never let go.

This man has saved my sons life, twice.

Instead I tried to thank him as much as I could and like it was no big deal, he just nodded and said, “my pleasure”, and winked.

When we went back up to see Aiden they had put him in the hat I made him that he had never got to wear.

after_surgery_pda_1

He was still asleep from the sedation but looked so good, like nothing had even happened.

I was so thankful, I hoped he could hear me when I whispered to him to tell him what a good job he did and how proud we were and how much we loved him.

after_surgery_pda_2

The rest of the day has been a blur.

While I have the worst of my anxiety before and during everything that has been happening, Kevin it hits after.

The rush of it all hit when we sat down to eat dinner.

He couldn’t eat. He put his food up and came and sat back down with Noah and I.

I asked him what was wrong, his lips were pierced and his eyes were wide.

And tears just started streaming down his face.

He explained it all perfectly, “how is this our new normal? How do we go from surgery this morning to sitting at dinner? How do we get great news but they are still at the NICU and they have such a long road ahead of them? How can this be happening?”

I had no answers. I just hung on to him and let him feel how bad this hurts and let some of it leak out.

Really that is the only way it ever seems to lessen the pain or at least numb it.

Leaking it out through tears.

I told him that normal for us now was only second to second and day by day. That we have at this moment three beautiful boys healthy as they can be and that they are OK and that is our normal for this moment and that is a good normal.

Kevin took a shower and tried to wash away the stress and then went to call on the boys and we got a scare.

Aiden’s blood gasses weren’t looking good and they were going to move him to the oscalator vent. The last time he was moved to that was when he was in organ failure. They said it was probably his sedation but they would do another blood gas in an hour.

No sooner did he hang up the phone were we putting our shoes on and out the door.

I called Kevin’s mom and she really wasn’t sure what it meant but we both didn’t like how it sounded and we only had bits and pieces of information so we couldn’t really understand what was going on.

We didn’t know if his systems were shutting down or if his body wasn’t responding to his surgery well, really we could just guess.

Once we got there they got the resident to talk to us and she said he was just really, really sedated still and wasn’t wanting to breathe at all and the vent they had him on could only do so much but his C02 levels were creeping up and if his next blood gas came back bad they would have to switch him to the next vent up to help him get rid of the C02 in his blood.

I went over to his bed and he looked like he was still so out of it but I knew I could help him.

I opened up his isollete and started to talk to him and cheer him on.

I kept talking to him about anything and everything. About all of the people praying for him and Evan and rooting them on. About how much better life is going to be one day and that he won’t remember any of this. I told him about how Santa came to visit him and Evan in the NICU and brought them their first Christmas gifts. I told him that Evan had been acting up the entire time he was in surgery and calmed down once he was brought back up.

I just kept talking and saying, “come on Aiden, open your eyes buddy!”

I then gave him my finger and he squeezed it so tightly and started to squirm. He then started trying to open his eyes and after I cheered him on enough sure enough he opened his eyes.

Not only that but after talking to him and holding his hand his oxygen was stating at 100 and had to be moved down.

The nurse came in and did the blood gas and when she came back with the results she said it was amazing. She said he totally normalized and didn’t need the other vent and since he started waking up they didn’t think he would need it.

They said he just needed to hear my voice. That everyone else had been in to see him, talk around him and even draw labs on him but he perked right up when he heard me.

Really I don’t think Aiden could have made me feel more loved.

So now it is 2am and Kevin and I are waiting on the last blood gas to come in before we go to bed.

I am so glad this surgery is behind us and not looming in front of us.

We are both just exhausted. We thought we knew what exhausted was before we had Noah, then Noah really defined exhausted, but this is so different it is a fatigue that creeps in to ever cell in your body and doesn’t get better with sleep or rest.

I feel like shutting the world out, but I know I cannot. I need the strength from everyone who is supporting us.

I gives me something to lean on. To be able to have such constant support and so much of it really holds us up when we feel our weakest.

It is easy to look ok on the outside and try to say we are ok but when it is just us it is hard.

Kevin’s mom said it is like that Verizon commercial, with the “can you hear me now guy” and all those people for miles and miles are behind him. It is just like that, without the annoying tag line.

Whenever we convince ourselves we are alone or that we can’t possibly go through another day like this someone calls, there is an email or text filled with love and support, people from all over the world send us messages online or there is a card in the mail or even just another ‘like’ on their facebook support page.

It all helps.

So with that I think I am going to try to go to bed and say goodbye to today. It was a good day. Even though it was terrifying and even though we had a scare, it was a good day. We got over one more hurdle.

So I’ll thank God for a good day and close my eyes with faith tomorrow will be another good day.

after_surgery_pda_3

right after his surgery

Evan's favorite way to sleep, limbs hanging out and his head tucked down.

Evan’s favorite way to sleep, limbs hanging out and his head tucked down.

Their room

Their room

aande

 

 

Please share their story and fight, there is no such thing as too much love or too many prayers. Pray for Aiden & Evan

You never know how strong you are until being strong is the only choice you have.

It was 5pm and Kevin and I had just made our way to the NICU, very excited for our daily skin to skin with the twins.

The nurse was new (to us) and we had just started down our list of questions about their day and the night before.

We were told everything was good but they though Aiden had some gas he needed to pass.

Kevin and I got out of our coats, I dropped off my milk and we scrubbed in.

I then lifted the flaps to Aiden’s isolette cover.

My heart dropped into my stomach and I began to feel faint.

“Oh my God, he is so sick. Why is he so pale?”

I looked at my poor little fragile baby, just yesterday he was pink and feisty but now he looked as if he was almost see through. His veins made  him look as though spider webs of navy blue covered his frail body and bloated belly.

The nurse went through benign reasons for why she thought he looked the way he did and I told her she was wrong, that something was very, very wrong with my child.

She asked me to help with his assessment to see if that would help calm my nerves.

She left the room to gather a few things and I turned to Kevin.

“He has NEC. Oh my God Kevin, our baby has NEC. This can’t be happening. This isn’t gas, he has it, I know it in my heart. He is dying.”

Kevin knew as well as I did that he had it.

When the nurse came in I asked her to call the doctor and she said she would and I could change his diaper while we waited for him to come.

I took his listless legs and lifted them.  Every maternal instinct in me was crying out in pain wishing for him to kick back at me and fight me changing his diaper.

I cautiously pulled the tape from the diaper, ever so careful around his swollen belly and it was then that the nurse believed me.

A diaper full of blood.

My heart raced out of control.

We were helpless. There was the evidence of this horribly deadly elusive disease tearing my baby apart from the inside and there was nothing we could do but watch him try to fight this impossible battle.

They came in to do an xray and the nurse came back telling us she had great news, that it wasn’t NEC. That it was just a bunch of air. She said, “you guys dodged a bullet, you are lucky it wasn’t NEC, I didn’t want to say anything but the only case of NEC I have seen the baby was dead within 24 hours.”

Not more than five minutes later we met with the doctor, I knew it was bad when the nurse practioner put his hand under my arm and his other behind my back as if to catch me from fainting after we were delivered the news.

The xray popped up on the screen.

I saw it, it looked like a can of biscuts exploded in Aiden’s gut.

“It is NEC.”

The doctor could only get out those three words before I burst out, “Ok. Then what do we do? What do we do right now?”

It felt as if the Earth shifted under my feet as the news hit me. My body wanted to faint. My heart wanted to cry. My brain wanted to scream. But the mom in me was ready to fight and I was ready for battle with NEC.

The doctors told us to stay the night because he was in very poor condition and may not make it through the night. They told us to go home pack a bag and make arrangements for Noah.

We ran from the NICU and as soon as we left the parking garage for my mom’s house and to pack a bag I called Kevin’s mom who worked in the NICU years ago.

She answered and all I could say was, “calm me down! Please just calm me down!”

I was reaching desperately for some ray of hope.

I told her everything that had happened since we got to the hospital and she immediately said she would be on her way.

A few minutes later we were at my mom’s house.

We flew into and my mom knew when she saw my face.

“It’s Aiden, he is sick. He has NEC. They don’t know if he will make it.”

“Go, go, I have Noah, go be with Aiden.”

Once we got back to the hospital the battle was in full force.

I sat in a chair with my nose pressed the glass of his isolette. Looking at him my mind was telling me there was no way he could pull through. I wanted to pull him close to my chest and rock him. Hold him, breathe him in. I wanted to tell him it would be ok. I wanted to go back to yesterday when he was ok. I wanted to go back to yesterday take him and run like hell away from this moment.

We were told the next 72 hours were critical and at any second things could take a turn for the worse and we needed to be close by.

We stayed in his room watching every breath, every measurement and every medication.

Doctors, nurses and family members begged us to sleep.

But how do you sleep knowing your child could die and you wouldn’t be there for them?

How do you sleep knowing you basically have been told, you only have so much time left with your son and we could have minutes left with him, hours or days? How do you spend a moment of that precious time sleeping?

How do you go to bed when your baby is fighting the battle of their lives? Struggling for each breath and in unbearable pain?

We couldn’t and wouldn’t sleep.

The next days were all a blur.

I honestly can’t tell you what day what procedure happened, what day it got worse, we didn’t sleep, eat or leave the hospital for three days until we were transferred to Children’s. We didn’t leave the hospital for almost a week. We were just in survival mode.

One of the doctors came in to give us the results of their head ultrasounds they had right before Thanksgiving at the Valley and it was actually good news at the time. I just started to weep and shake. The doctor came close to me and asked me why I was crying since it was actually good news. Evan had two small brain bleeds and Aiden none (now he does). Just hearing “brain bleed” and then looking over and seeing Aiden struggle in pain for each breath I wanted to beat myself up. Not mentally, physically. I was so angry with myself. It was my job to do what these machines were doing for them. It was my job to bring them into this world. I did this to them. I am the one that caused their brain bleeds and put Aiden is this horrible condition, if I could have just kept them in we wouldn’t be here.

On day three we were given a little hope. They did an xray at 1am and there was no perforation in his intestines and they had drained a lot of air out of his stomach and he seemed to be getting better as far as blood labs were concerned. His next xray was scheduled at 4am. A perforation would take his case from medical NEC to surgical NEC. A perforation would make him Stage IV NEC.

The nurses and doctors were hopeful but I knew this wasn’t the push he needed to get over the hump.

The doctor pulled me aside and told me to park it by his bed and if I felt for one second he wasn’t ok to send the nurse after her. She said she trusted my instinct and knew how in tune I was with my babies.

At 2am I asked the nurse to measure his belly. Within 5 minutes I saw his belly, which was already full, go from looking full to about to explode. It was shiny from how stretched his skin was.

She sort of rolled her eyes at me and measured.

25 centimeteres. It was 24 centimeters an hour ago.

I burst out, “go get the doctor now.”

She tried to tell me it was probably gas, his position or that she could try to drain out some air from his belly and I snapped at her, “no, go get the doctor now.”

The doctor came in and saw my face.

She immediately ordered an xray.

Sure enough, in that one hour his bowel had ruptured.

I knew before she came in the room.

Kevin asked me why this xray was taking so long, all other results were read within 10 minutes and brought back to us. It had been 30 mins. I told him, “she saw a perforation, I know it. She is calling Children’s to prepare a transfer.”

Sure enough she came in and echoed what I just said. She showed us the free air in his belly surrounding his liver and tried to give us some hope.

His transfer had been set into motion and all we could do was wait and watch. He had to be transferred hospitals because the type of surgery he needed could only be done there.

The doctor told me she couldn’t stress how lucky we were that he had that xray, that waiting those hours for the next scheduled one probably would have cost him his life.

The transfer was terrifying. It took 2 hours to get him moved from his isollett and into the transport one. Kevin and I stood in the dark hallway watching the transport team work together like they were doing a dance at the speed of lightning.

They moved with such care, so fast. Machines screamed and beeped with every cord transferred or unplugged.

Kevin sat on the floor and cried and I just stood and sobbed.

What do you do when you are that powerless?

A nurse came and brought me the hat I made him and his binky and I just held them to my face and bawled.

All the NICU nurses dotted the hallway watching our lives burn to the ground.

We said goodbye to Aiden and as they left we ran out to our van to follow to Children’s. We got lost on the way but even with getting lost we had to sit and wait two hours in the waiting room before we were even allowed in to see him.

Walking into Children’s NICU I was mortified. It wasn’t the same NICU we had left at the Valley. There were babies everywhere, you could see every monitor and it was so dark. At the Valley every baby had their own room and it was very private. I felt so overwhelmed.

They led us to the back isolation room to see Aiden, he looked as though he was just hanging on by a thread.

We spent the day by his side. Our families came and sat with us.

We just cried staring as doctors and nurses tried with all their might to save him.

That day was mind numbing. The worst day of our lives. The worst day I could imagine, worse than any nightmare my mind could create.

I honestly thought he was dying…he was dying. Nothing was working well enough to help him get over the hump. He was slipping through our fingers.

We were waiting for the impossible, for him to get better or to pass away.

They tried medications, tubes, different ventilators and then a surgery to place a drain in his abdomen to try to release some of the air being released from the leak in his gut but it didn’t work.

They did the surgery bedside, I had to leave the room. Kevin stayed but I couldn’t watch my little baby cut into. Kevin’s mom walked me out of the room and to the room the NICU was letting us stay in.

No matter what they tried it just wasn’t enough.

His systems started to shut down, he was in organ failure.

His heart was beating so fast that they said it could have stopped at any second. We watched his heart rate climb well past 200bpm and felt the looming flat line hanging over us.

A doctor came in and told us how dire and grave his situation was and we kept cutting him off every time he tried to tell us we needed to be ready to say goodbye. We felt like if he didn’t say it, it wouldn’t be a real possibility. But in our heads we prepared our last words with Aiden.

Kevin and I had to leave the room for them to do a sterile procedure and we went out to see Noah in the waiting room. As we were going back in the surgeon saw us scrubbing in and said, “He isn’t going to make it if we don’t do the surgery right now, I am not telling you he will make it with the surgery either. But I am telling you he is going to die if I don’t get him in the OR now.”

We ran back to his room. You see people get swept off to surgery on tv in minutes but in real life it takes just as much time to move a critical patient to the OR as it does the surgery.  Now that we were in surgery mode we just wanted him to get the dead gut out of him. Every second between him and the OR seemed like a death sentence.

While the OR was prepared and his surgery team was assembled he was at his worst.

He was just lying there with the sides down on his isolette. The light was shining down on him from the window. He shook from the oscolator vent he was placed on. He was filled with tubes. The once noisy room had gone quiet and the swarm of nurses and doctors had moved back to let us be with him.

Kevin and I went to his bed and I took his hand.

I cried to him from the depths of my soul. I apologized to him for letting him down and not being able to keep him in longer. I told him how much I ached to still be pregnant with them. I told him how proud I was of him for being so strong and how much stronger he was than me. I told him that I would take any outcome from this, that he just had to live. That any need would be taken on in stride. I told him I would be sorry for the rest of my life and that he deserved to know happiness, love, warmth, life, laughter, joy and a full life. I told him I couldn’t do it without him and he had to pull through.

I just kept tell him how much I loved him.

Kevin knelt down and told him how strong he knew he was and how sorry he was that he had to be so strong so soon. He told him that one day they would play catch and one day they would go to football games with his brothers. He told him he had brothers to chase and play with and even get into fights with. He told him he believed in him and told him to hang tough and that he had to come back to us.

He ever so lightly squeezed my fingers and my heart pumped with pain.

Every inch of my being and every ounce of my soul ached in pain.

The desire in me to change places with him was instinctual. Like the need to breathe, I ached to be in his position and take this from him.

So many people came to us and asked to pray over Aiden. So many people held me in their arms as I wept.

In the last 30 minutes before they took him to surgery while his all his systems were shutting down he started to stabilize himself. His oxygen stats got better, his blood pressure, his heart rate went down and he started to pee. It wasn’t a lot, he wasn’t healed by any means but it helped him get through surgery. One of the nurses told me before they took him it was a miracle she couldn’t explain.

We met with what seemed like a million people on his surgery team. They all had to explain their piece to his surgery and get our consent. I couldn’t hear the words and risks they were saying to me, they didn’t matter. There wasn’t a risk to not doing the surgery it was a promise, he would die, we didn’t have a choice. The choice was made for us, take the surgery on no matter the risk.

After what seemed like an eternity they were ready to take him away to surgery.

We followed them down to the main floor with the OR and they wheeled him past us and I begged them to bring him back to me and yelled out that I loved him.

Kevin held me in the lobby and we both shook with such fear and desperation. He pulled me to the elevator to go back to where they asked us to wait.

The elevator doors opened and I stepped out on to our floor, made a few steps and fell to the floor. My heart was raw and I was whaling out in pain. The sobs that came from in me were primal, angry, desperate sobs. I was crying for my child.

Kevin’s mom took Noah and Kevin and my parents surrounded me. Without Aiden by my side I couldn’t be strong any more. I was as broken as my heart.

The only thing that brought me out of that level of pain was holding Noah. His name means “to comfort”, that is just what he has done. Without Noah I don’t know if I would be able to function through this entire trial.

I don’t even know how much time passed waiting for the surgery to be over.

It seemed like a year had passed but at the same time like only a minute when we got the call.

The surgeon came to meet us and told us he made it through the surgery and explain how much of his gut he had to take out.

All I heard was he made it through.

We still had to wait hours before seeing him but when we did I couldn’t believe I saw him breathing when I walked in.

His scar is the length of his belly and he has an ostomy until he can fully heal and recover from the surgery and sepsis.

Even though he made it through he was still near death and critical.

It was so hard to try to process coming out of surgery and then try to wade through all of the emotion and fear to what was next, especially when it is all still a question mark.

Over the next days he was weaned off of the various medications and machines he was placed on before the surgery.

I wish I could explain more about that process but I can’t. Every step down felt like a step off of a cliff. We just would hold our breaths hoping and praying he would take the step down and not take a step back.

The day after Aiden’s surgery I called to check on Evan and get his stats and the nurse told me that he had some hidden blood in his stool.

My heart sank.

She said it was probably due to a nose bleed he had from his nasal tubes. I asked her to be aggressive in looking into it. I told her to do every test and every assessment possible.

We went to see him and he looked much better than Aiden but Kevin and I were overcome with such fear. It felt as though we were not even half way through the battle of our lives and NEC was dragging us back to the start line.

Evan’s doctor who had been Aiden’s doctor ordered an xray because he said he would not put our family through more than we had been through and did not want to assume it was the nose bleed.

He I am convinced is an angel. I think God uses people as angels and I am sure Dr. B is an angel in our lives.

Sure enough on the xray it showed a suspicious area.

His doctor stopped feeds to be safe but the area was so small that it could have been anything but his doctor said he wanted to be overly, overly, overly cautious.

The next day his xray came back negative and we were so thankful. Because he was negative at the time they approved his transfer and he was moved from the Valley to Children’s.

We got to Children’s right as they were finishing his transfer and the nurse told us, they were not going to feed him and they were treating him as if he has NEC until they could get more xrays.

His belly looked very puffy to me and I knew then that he was battling NEC too.

They ordered xrays and we sat in Aiden’s room watching through the glass as they connected him to their machines and started to assess him.

Then three doctors came in.

They didn’t have to say it, three doctors is never a good thing.

He has NEC.

They told us all of the things they told us at the Valley about Aiden.

We caught it early, he hasn’t perforated yet, his vitals are good, etc.

I didn’t care, this deadly monster was in both of my children. Statistics meant nothing, there was no comforting us. We just cried.

Just the day before we were being told Aiden wouldn’t pull through and now was barely hanging on after a major surgery, now Evan had the same disease?

Luckily because of their doctor at the Valley Evan already had begun no feeds, he had one half feed but all feedings were stopped once he got to Children’s. They immediately started him on a range of different antibiotics. And now we were at the critical wait and see point.

The doctors told us to go home, that both boys were stable enough and that they needed us to sleep.

We went to my mom’s after midnight where Noah was staying and tried to sleep but couldn’t.

Kevin had to go back to work, we have run through all vacation time and he had already taken so many unpaid days and needed to be in early so he took me back to the hospital at 4:30 in the morning.

I stayed all day, switching from room to room. Just watching them breathe and trying to not watch their monitors.

I pulled a recliner by Evan’s bed and tried to sleep. After not sleeping for so long I just couldn’t function anymore and the only place I felt like I could sleep was by their side.

I slept for about an hour when their nurse came in to tell me Evan’s xray came back good and it looked like the medication was working because it wasn’t getting any worse and that Aiden was holding stable.

I was so thankful and overwhelmed all I could do was sleep. I slept by their beds into the afternoon.

The days following the boys have made strides in the right direction which we are so thankful and happy for. The only problem is the NEC rain cloud is still right over us. NEC can be “under control” and your baby can be in recovery and it can make a turn for the worse and take them. Even with a few good xrays Evan has had xrays that still show the NEC. So while we are taking baby steps up the mountain to beat this disease an avalanche can come and take it all away at any minute.

Little bits have stood out attaching themselves to my soul.

Right after Aiden’s surgery he opened his eyes when he heard my voice. The doctor was standing right next me and said, “Oh my goodness! This baby is on so much pain medication, it should be off on a vacation in sleep land! But he heard his mommy and wanted to say I am ok!”

His eyes, so drowsy. So filled with pains he should never have to feel. My little frail baby being wiped of blood and stabilized. This moment was so monumental. People dream of their babies being handed to them swaddled with little hats. But here was our moment, my warrior, my little 3 pound warrior breathing, meeting me with eyes full of life. My baby was alive, he was breathing and looking to me. When they took him to surgery I honestly felt I would never see him alive again. I bent down to his bed and smelled his sweet baby smell. His eyes followed me and closed when I kissed his head. His strength imprinted itself in my heart. I have never been so proud of anyone.

Even though they are now both just on high flow oxygen, better than what they were on at the Valley I still can’t take a deep breath. There is still so much battle left to fight and so much uncertainty.

Both boys are not eating and haven’t been because food is what causes NEC to get worse, it feeds the bacteria. NEC can and does reoccur when feeds restart and we are absolutely terrified for that process.

Aiden had his entire large intestine taken out, part of his small intestine and his ileocecal valve removed, he can’t stand to lose much more and I can’t imagine going down the path we took with Aiden all over again with Evan.

We also face what this disease has done to Aiden in the darkest periods of Aiden’s battle.

His PDA (heart problem) opened back up due to stress from the organ failure and now faces surgery if it does not close by itself.  We are in a very difficult wait and see period. If we wait too long his body could get use to the way his heart is pumping and the correction of his PDA opening could actually set him way back. If we do it too soon we could be doing an unnecessary surgery, it is surgery and he is just a little baby. It is a very scary process so right now we are focusing faith and prayer is going right to Aiden’s little heart.

Aiden’s brain was also affected by the organ failure because blood couldn’t reach areas of his brain when his blood pressure dipped so low. On the left side of his brain he has a cystic like area when blood was restricted. We are hoping it reabsorbs and does not start to bleed out.

We are fully ready to take on any need or situation that Aiden may face but the steps like surgery are still so scary.

Every second is such a struggle.

We have been staying with my family because honestly I don’t even feel as though I can function.

I am angry, depressed, broken and so lost.

I am not even sure everything I just wrote makes sense.  And I know I am missing huge pieces and chunks of time but I can only remember it all as an excruciating painful fog. Remembering it is a lot like recalling it with tunnel vision. So many people came and touches our lives and I haven’t even touched on that at all. And I know this peice doesn’t even begin to convey our heart break for our two boys or the journey that started November 26th.

At first I was scared to write. All I could do was sit and get lost in ever beep of their monitors and every breath they took but I know I need to write. It is my way of saying it will be ok and one day I Aiden will need to know about the battle he faced just like when I was a baby and faced the battle of experimental heart surgery to save my life. When I was little my mom sat me down and we went through the countless notes she wrote me, pictures and my baby book filled margin to margin with notes of love, medical questions, fears, hopes and dreams.

When my mom shared the story of my heart surgery with me it made me believe that I was capable of anything because I survived such a fight.

Also it showed me how even when I couldn’t be strong someone else was there to be strong for me. That in my weakest hours my mom never lost faith in me and was my advocate. Just as it is my turn to keep the faith for my boys and advocate for them. And while my mom faced my heart surgery alone we have so many people advocating and loving our boys for which I am eternally grateful.

In all of this I am trying not to hate myself but that is going to be my own long hard road I have to face. I take full blame for the state they are in. If I were pregnant with them right now they would be safe not in pain and in this world far too soon. This grief, it hurts so, very, very bad. What I wouldn’t give to feel them kick again. I would give anything to take this battle from them.

All of our dreams of bringing two chubby healthy little boys into this world were happily shattered when my boys came into this world so early but the doctors told us they were OK.

Now no doctor will tell me they will be ok.

No one can tell me with certainty they will be ok.

The insurmountable weight of the fact that things might not be ok is crippling.

In my heart though I have strong faith it will be ok but that crippling what if creeps in during my weakest moments and it is then that I crumble.

When I am not by their side I can only feel crushing guilt, pain and fear.

In these dark blurry days we have had some breaks in the pain. Noah’s laughter and cuddles. Friends and family coming to our side guiding us through the haze of pain we are in. So much overwhelming prayer and love from all over the world, thousands of messages and prayers sent to us for the boys.

We have been given so much love and support.

Without it I don’t know where we would be.

The amount of prayer our family has received has filled their rooms and our darkest hours with a support that can’t be measured.

It is there holding Aiden and Evan’s hand through each bump they must overcome. It is there like an invisible wall holding Kevin and I up when we feel like falling. It is there with the doctors as they preform medical miracle on our babies. It is there with our families as they swarm us with love putting their lives on hold to rescue ours.  It is there when my eyes burn and tears wont stop pouring. It is there when Kevin has to find the strength to go back to “normal” 10 hours a day at work. It is there reminding us that people are helping us and our boys to be strong. That just as Evan’s name means, God is good and I have faith that these boys are proof of that.

Last night when we went to visit them they had moved them both in the same room.

My heart was overcome with such happiness. Both my boys in the same room. This was as close as they had been since they were in the womb. I could look at them in their isolettes next to each other and be in awe of my two little miracles.

I could sit in amazement and study how identical they really are, yet different too.

I could dream of holding them both.

They would open their weary little eyes as they heard our voices. Their eyes told their story. While they are tired, still weak and have been through a battle most people never see the likes of they still have a spark. They are still feisty. They are so resilient. They are so strong. So brave. So amazing.

All our family could ask for at this point is for everyone to please continue to pray for them and share their story so that we can gather as much prayer for them as possible. Pray as hard as you can, believe in them as much as we do and don’t lose hope. They are not where near out of the woods yet, we still need as much prayer and love for them as the minutes before Aiden’s surgery.

Also, as a mother I ask for all parents to hold their children a little tighter, cover them in kisses and overwhelm them with love. Give them all the love you normally do, but a little extra today for Evan and Aiden.

I am so sorry that being strong is the only choice my babies have right now, I want them to just be babies, not warriors. They shouldn’t know this darkness, this pain, this fight.

With that being said I am so proud of them. My pint sized little warriors.

I am so lucky to be their mother, I am so honored.

Taken 12/8/12, healing and enjoying his binky.

Taken 12/8/12, healing and enjoying his binky.

evan12_8

Taken 12/8/12 Evan snug as a bug.

My boys in one room, Grammie and I helping Aiden out with his pacifier.

My boys in one room, Grammie and I helping Aiden out with his pacifier.

 

 

My heros.

Aiden starting to wake up more and open his eyes.

Aiden starting to wake up more and open his eyes.

 

Evan opening his eyes

Evan opening his eyes

 

Right now both boys are still critical, we are still on that tight rope of any moment could change it all. We also face starting feeds again eventually on both which could cause the NEC to come back. Aiden had his entire large intestine removed, we don’t want the NEC to come back and take any more of his intestines or for him to fight any more than he has had to. Aiden will be having heart surgery, the date is still to be determined. Evan’s xrays have gone back and forth on positive and negative for the NEC, so he is still battling it but we are hoping the fact that it isn’t an obvious positive is good thing.

This period of holding our breath is terribly difficult but every second that goes by that is good trumps all the pain and worry. It is hard to complain about how hard it is on our end of it all when we aren’t the ones fighting this battle, it just hurts so much to see my two babies in such pain and having to fight such a hard battle.

Please keep praying for our two strong and brave boys, all the prayers are making a difference. We have been extremely hard to reach in all of this, cell phones aren’t allowed in the NICU most of the time and we aren’t online much at all. Right now we are just in survival mode pushing ahead trying to figure out how best to be there for all three of our boys, we haven’t taken time to answer voice mails, emails, messages or even pay our bills or grocery shop so please don’t think we aren’t thankful because we are. We are so thankful for every ounce of positivity and prayer sent our way, we just have so little time in each day and right now we just can’t pull ourselves from our boys more than a few quick updates here and there.

Thank you again, all of you.

Keep the love, prayer and coming.

 

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.
 
 
Image
Aiden
Image
 
Evan
 
 
 

finding strength.

When I was little my mom always sang to us. She would sing lullabies and changes songs around to make them “our songs”.

It was always so comforting to me.

I’ve been humming and singing to the twins and without really thinking about it sang to them a song my mom would sing to us when we were little knew that this was their song.

You’re my spirit to be strong, I’ll be there when things go wrong…

So I’ve written down these words to let you know…

Loves grown deep, deep into the heart of me

You’ve become a part of me

Loves grown deep, deep into the heart of me

You’ve become a part of me.

As we travel down this hard long road, side-by-side well share the load

Hand-in-hand well see each other through, 

Though we’ve only just begun, lets count our blessings one-by-one

I thank God for life, I thank God for you.

I feel so far away from them and it is hard to come home and be without two babies to love and care for and have other people filling the role of mom for me.

So to remember both my little fighters and as a constant reminder of their strength and reminder to be strong I am going to wear their little hospital ID tags until they come home.

They are my spirit to be strong.

 

 

Today’s rounds:

Aiden:

Aiden had a lot of brady episodes with apnea last night but his O2 levels didn’t drop with the spells so that is good. He also self corrected a lot of them and more than half were due to him pulling his nasal tubes out. They don’t know how he is pulling them out but he is a fiesty one! He somehow wiggled his way out of his snuggle wrap and had his butt pressed up against the glass the other day and wormed his way up his incubator bed.

If his brady episodes keep up they might up his caffine injections or put him on the machine Evan is on that helps him breathe. They said if they did it would just be on a low rate. He has just been through a lot with being put under the light, a blood transfusion and the indocin treatments and stopping his feedings for the treatments.

The indocin treatment for his PDA caused his urine output to be low so they are holding off on the second dose till they can pull a CBC and get another diaper or two from him. Luckily they did say his murmur sounded better!

Evan:

Evan is doing perfect. His feedings are going up, his attitude rivals his brothers and he only had one brady episode last night and they moved his rate down from 30 bpm to 20 bpm and he is still on 21% (room air) oxygen.

Both boys billrubin levels didn’t change so they are still under one light.

 

Over all fairly good news, I say fairly because I know the brady stuff is normal but I HATE it. It is hard to hear cardiac event and no big deal in the same sentence. They were very boring (which is GREAT) yesterday and we had a great visit with them.