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 Evan snug as a bug.
My boys in one room, Grammie and I helping Aiden out with his pacifier.