What Really Happened To Mighty Miles: Our NICU Nightmare Part 10.

/ mandy7607 / 3 Comments

The flood waters of Hurricane Harvey receded in Houston and left in it’s wake billions of dollars in damages and the new hash tag #HoustonStrong. The community came together and set an amazing example for the country of what people could do together in a crisis. I had never been more proud to be a Texan or Houstonian watching the stories of so many people from victims to volunteers, to business owners. I was inspired as I sat next to my recovering baby boy in the cold, quiet NICU.

There isn’t much you can do with a sleeping newborn, at home or in the hospital, but watching over him became my daily life. In the mornings, I took the train to downtown. because it was cheaper than parking. Then I met with the doctors making their rounds at 7 am and stayed by his side all day until 8 pm. Every day I watched and learned everything that I could. If this is where I had to learn to be a mamma, then I would give it my all.

I learned medical jargon, how to read monitors, what alarms to ignore, what alarms were scary. I learned to change his Colostomy bags so well that the nurses only had to assist me in changing them. I learned to smile and hide my own sadness and make silly faces at him as my baby screamed in terror at the poke of another needle. I learned the names and schedules of all receptionists, nurses, and custodians. When new doctors were assigned to him, I made sure they met Miles and knew his name and not just his stats in the computer. Like all good mammas, I learned my baby. I advocated for him. I fell in love with him, wires and needles and little colostomy bags in all in a dark, tiny hospital room.

I took the train home at night and the nights were hard, I won’t lie. It felt unnatural walking out of hospital without my baby. I am not a perfect person and Jack Daniels became a friend. Never was a whiskey person, but it got to the point. Most nights we had a quick dinner, then I took a hot shower, washed some clothes and then had a few drinks until it didn’t hurt as much. Then I was up at 6am to do it all again. I’m not proud of it, but we do what we have to do to survive in hard times.

In the meantime my baby was recovering and his team was more and more impressed with his progress.”He is officially the loudest baby in the NICU.” One Nurse joked as Miles exercised his lungs after being intubated for two weeks. His hoarse little cry was music to my ears as I hadn’t heard him cry since the night he was born. It was like he had been wanting to scream this whole time. The charm has since worn off, I assure you.

They may have moved him upstairs after month one because of his volume, but we weren’t complaining. Upstairs in Tiger Pod, for generally healthier babies that didn’t require one-on-one Nurse care, we had our own room and more privacy, which was great. It wasn’t all roses upstairs however, we had our scary days; dehydration, surgery complications, jaundice, and weight loss. Life in the NICU is unpredictable. His first month birthday came, followed by his second. Those days were bittersweet.

Maybe it was his annoying mother helicoptering around him daily, strength from his stoic father, optimism from his sweet Mimi, and countless prayers and visits from aunts, uncles, friends, and pastors that helped speed up his miraculous recovery. Maybe it was his talented team of doctors and nurses. Maybe it was all him and his sheer will to stay on this earth. Maybe the Lord just knew his purpose all along. Whatever it was, Miles got better. Way better. His stomach was healing. He was gaining weight and meeting every food challenge. He was smart and alert. He ate and pooped. He smiled. He loved being around people. He was growing into a regular little baby and I could feel it in my bones he wanted to get the hell out of there.

He was doing so well, they preformed the surgery to reconnect his bowels at six weeks, rather than eight. It went perfectly.

Ten days later, day 67, Tuesday, October 24th, standing among doctors and nurses during morning rounds, they asked me the same question they had everyday, “Any questions for us today, mom?” They chuckled a little because they knew my question. I asked it everyday. YEAH, WHEN CAN WE GO HOME? That day I got a different answer.

“Today. How about you take him home today, Mandy?” The nurses station went quiet. They all smiled my way. My heart stopped for a moment. Tears immediately came to my eyes. My breath escaped me. I knew it was coming, but I had dreamed of hearing those words for over two months and they hit me harder than I expected. I grabbed a Nurse and wept on her shoulder. I couldn’t believe it. I texted mom and Chris.

GET HERE NOW! WE ARE GOING HOME!!

We packed up our room, our home for the last five weeks, said good bye to our wonderful neighbors that are still friends today, and left as quickly as we could before anyone could change their minds.

I held Miles tight in my arms as we rode the elevator down eight floors down to the lobby. It had been 66 days since I had held him in my arms without wires tangled all around us. I couldn’t wait for him to feel the sun on his face for the first time and smell the fresh air of the outdoors. Strapping him into our car was better than I had ever imagined. Horns beeping and people shouting all around us in the busy hospital drop off lane didn’t even phase me. I drank that moment in, sitting next to him in the backseat as my husband drove us away from the hospital. It was a crisp and sunny fall day and it was really happening. We had made it. We were going home. It was the greatest day of my life.

Today, I remain at home with him after resigning from the school district that I love. The budget is tight, trust me but we are making it work for one year and I am loving it. By now, we have been home longer than we were in the NICU. Miles has been dismissed from the care of two doctors and is hitting every milestone with physical therapy and occupational therapy. His weight is in the 20th percentile. He is funny, and active and farts at inappropriate times. He is all boy. He is teething, and eating stage one foods. He hates tummy time. He loves his walker. He is a mamma’s boy for sure. He is silly. He is happy. He is a fighter. He is a gift from a God that I doubted for so long. He is here for a reason and I will help him find what that reason is, as this is now my life’s purpose.

We are moving on and the days of the NICU fade in my mind everyday. I wanted to write about it so we will always remember. I know life will get more normal for us and we will raise a busy toddler, a goofy kid, and more than likely a mouthy teen. It will get hard. We will have good times and bad times, just like everyone else. But I never want to forget what almost wasn’t. I never want to forget what really happened to our Mighty Miles.

What Really Happened To Mighty Miles: Our NICU Nightmare Part 9.

/ mandy7607 / 1 Comment

Houston is enormous. It’s essentially a blanket term for the upper Gulf Coast of Texas, stretching into parts of East Texas. So on that Sunday, August 27th, 2017, what the rest of the country was seeing on every news channel was virtually every neighborhood, from the luxury million dollar homes sitting on the southern Gulf of Mexico to the north eastern suburbs to downtown Houston, where folks like myself reside, go completely under water. Hurricane Harvey had not even made landfall. The doctors who were supposed to operate on my baby at 8:00 AM that morning had to live somewhere…

“We will be removing twenty-five percent of his bowel this morning.” A new doctor, Dr. C, who had barely made it into the hospital early that morning, explained to me at the bedside of my baby. Miles was still sedated since his exploratory surgery that Friday night. I missed seeing his big sweet eyes.

Dr. C went on to sum up that this surgery, a jejunostomy, would require Miles to have a stoma and an ostomy, They would act as his missing bowels for six to eight weeks. Then, depending on his healing and overall health, he would have another surgery to reconnect his bowels. He said although many function at home after this type of surgery with colostomy bags, his team would not be recommending it because of Miles’ already weakened immune system and because of the possibility that he may have more complications coming.

Our dream of sixteen days till home was gone. We would be in this hospital for at least two more months. Period. I wanted to be devastated, to throw a fit, to punch something, to scream, but my baby was about to be cut open and my husband and dogs were possibly evacuating the city along with all my friends and family.  The time for a pity party wasn’t now.  I had to be an adult, even though I felt like a scared child. I had to be there for Miles.

“Half the operating room team cannot get here So we are going to have to operate bedside.” Dr. C informed me as his scheduled surgery time came and went. He said it was not preferred but desperate time called for desperate measures. Miles had to have the surgery or risked further complications. The team began to pour in and parents of our fellow pod babies were instructed to leave the NICU.

“You too, mom. Time to tell him goodbye.” The nurses looked at me as I stood next to his bed. “Mr. A is here to walk you out.” Another somber Chaplain stood with hands folded at his waist. Why the hell is he here? Nothing is going to happen, right?

The scene of all those doctors and nurses preparing to operate on my baby for the fourth time, the rain pounding against the window, that Chaplain’s pitiful looks and the thought of walking out of that NICU and being alone for the next few days was too much and I began to sob. Losing my breath sob. Knees weak sob. A kind nurse put her arm around me and whispered comforts to me as the whole staff watched me lose it. Eventually I kissed my baby and walked toward the lobby with Mr. A trailing behind.

Seems like they always interview the guy without a shirt on in these situations. I chuckled as I tried to cheer myself up a bit amidst the horror that was unfolding all around Houston. I sat in the lobby watching my fellow Houstonians get rescued from the rising waters. I wanted to ask for those Facebook prayers just once more, but felt they were needed by so many others that day. So instead I waited, alone. It was another one of my darkest times, in that waiting room. Not even sure what I would do, if he didn’t make it through this one. I couldn’t think of anything worse than having to stay there alone until the water receded, knowing he was gone. Texts from friends and family letting me know they were safe helped ease my fears. Chris was still safe and had power, my friends and family near the gulf were all accounted for.

After a couple of hours, I saw the Dr. C and his team heading toward me. Every thing had went well. Now, it was time to wait. Wait for clots, wait for floods, wait for healing, wait to go home. Wait…

That night, after sitting with Miles for the rest of the day, I found a nook around the corner from the elevators of the seventh floor NICU. It had a window overlooking the flooding city and benches so that I could build a fort around my camp site. I told the night nurses I slept in a bright orange hoodie so if they needed to come and find me I was easy to spot. I washed up in the bathroom, made a pallet on the floor, and settled into what would be my lobby home for the next week until flood waters of Harvey receded .

What Really Happened To Mighty Miles: Our NICU Nightmare Part 8.

/ mandy7607 / 2 Comments

In the waiting room outside the OR, my attention shifted back and forth from the stream of bubbles blowing up through a giant fish tank filled with magnified koi and the local news on the mounted television warning Houston of the potential disaster that lay before us. Turned out that hurricane lurking out in the gulf was the real deal and Hurricane Harvey was set to make landfall on Tuesday, August 29th. It’s preceding rains however, were already upon us.

“It’s coming down pretty hard already.” Chris reported. He had turned around and come back to the hospital for the emergency exploratory surgery at midnight that Friday. We were in the the same place we had been one week earlier, sitting in a waiting room terrified and clueless as doctors tried to save our son. In between texts from my mother and flash flood alerts popping up on my phone, I googled what Dr. L and Dr. H had suspected was happening to Miles.

NEC.

After a couple of hours, a new doctor approached us.

“Hello, I’m Dr. K. I operated on Miles’ tonight.” He shook our hands and began by confirming his colleagues suspicions, it was NEC. He said he was visual and hoped we were too, because he wanted to draw us a picture so that we fully understood what was going on with Miles now.

In a nutshell, that brain hemorrhage Miles had suffered on ECMO caused a clot that passed through his stomach and ruptured in his gut, making his intestines look like a shrapnel explosion (which the doctor illustrated very well). The breastmilk that he received that day leaked in his gut and caused dangerous gases and infections to form. If this was not an isolated incident, meaning if there were more clots coming down his little pipes from his brain, his life was in serious danger. 50/50. A coin toss. Again.

This kid just couldn’t catch a break.

They scheduled surgery to remove the portion of his intestines on Sunday morning. He would be monitored closely the following days after to see if any other clots would pass and cause a need for more intestines to be removed. We would just have to wait and see. Again.

After a long night of hearing the early rains of Hurricane Harvey pound against the Ronald McDonald House windows, Chris and I began to realize that we were going to have to make some serious decisions and we were going to have to make them fast. Some areas of Houston had already began to flood and Harvey had not even made land fall.

Our two old dogs, one blind, could not be left alone nor did we want to give any family or friends that had to evacuate the added stress of caring for them. Plus our fur babies were our family and we wanted to make sure they were safe. In addition, our home set less than a mile from one of Houston’s most notorious bayous and if  predictions were correct, our home was in a potential flood area. In the end, we decided to split up; Chris would stay at our home and ride out the storm and I would stay at the hospital with Miles.

I WILL COME BACK TO HOUSTON. YOU AREN’T GOING THROUGH THIS ALONE.

My mother texted early that Saturday morning.  She lives two hours away and the thought of my sixty year old mother driving toward a hurricane was insane. It was too late and it was out of our hands.  NO WAY, I texted back.

We left the NICU and headed toward home quickly for some supplies; a weeks worth of clothes and toiletries, some cash, bottled water and snacks.  As we were leaving, we saw a notice on the door that stated the Ronald McDonald House rooms were going to be used by doctors and nurses staying overnight during the hurricane and that families of NICU patients were welcome to sleep in the lobby during the storm.  I added bedding to my supplies list.

At 4:00 pm Saturday evening, we pulled up to the drop off area in front of the hospital.  The sky was dark and the palm trees around us swayed.  Rain was hammering down. I unloaded my bags to the sidewalk. It looked like I was going camping.  Chris and I hugged and cried a little.  We had no idea how long this storm would keep us all apart.  Even if our home didn’t flood, it was possible that Chris would be marooned there, unable to get out to surrounding streets for days or even weeks. But there was nothing we could do. I turned and walked inside and he drove away, alone.

Would our baby survive this one? Would the hospital flood? Would the doctors even be able to get to the hospital for Miles’ surgery the next day? Would our family and friends be alright?  What if Chris had to evacuate…where would he go? The fear of the unknown kept me awake for most of the night and in the morning I awoke to an ominous text from Chris.

BABE, IT’S BAD. REALLY BAD.

img_0809.jpg

What Really Happened To Mighty Miles: Our NICU Nightmare Part 7.

/ mandy7607 / Leave a comment

A perfect day in the NICU is a rare blessing. It’s a small pause from the panic, the daily unknown, and the dread of multiple beeps on the monitor that make nurses and doctors run over and ask you to step aside for a moment. It’s a day with all ups and no downs. It’s a day that brings hope and positivity.

For all these reasons, a perfect day in NICU is not always a good thing simply because the higher you are up, the harder you will fall.

Friday August 25th, 2017 was a perfect day.

“He just looks great guys. His blood gases are perfect, his swelling is down, the bleeding in his brain has stopped and his lungs are clear. We are very happy with this progress.” Dr. L smiled reassuringly. Chris and I sighed deep breaths of relief, maybe the first in seven days.

Our baby’s seventh day on earth was probably what most people’s first day with their new baby is like. Miles opened his eyes for the first time, off morphine, and we were finally able to see his big, beautiful, butterfly eyes. We melted of course.

The doctors also deemed him well enough to try feeds and ordered 5 cc of breast milk, the first since the day he was born, to be given to him via feeding tube. But, the best part of our perfect day was when we got to hold him.

It had been seven days since the door had closed to the recovery room and I watched them roll my sweet baby away from me. Seven days of being perched beside him in a chair in this NICU, allowed only to stroke his tiny hands and wisp his feather-soft hair. Seven days of aching to hold my baby close to my heart.

So when they finally lowered him carefully back into my arms after seven long days, a warmth spread over me from head to toe. My soul sang. My baby.

It didn’t matter that I had to get sterile and stay within four inches of his bed so that his mermaid-like tail of wires and needles wouldn’t be compromised. I just closed my eyes and pretended that we were in his serine little room at home, adorned with elephants playing baseball, rocking in his grandmother’s rocking chair. I listened to him breathe and stared at his sweet face. I gave him a weeks worth of missed kisses. For a little while we were both at peace, just rocking. Safe. I said a prayer of thanks for those precious moments and for the gift of those seven days. Then I said it again as I watched my husband hold his son in his arms for the rest of the afternoon.

A perfect day.

“So how long do you think we will be here now, Dr L?” I asked as they got Miles comfortable in his bed again.

“If he continues making progress and barring no other problems arise, it could be just until he finishes his antibiotic treatment…sixteen more days.” She said she wasn’t making any promises. NICU doctors wisely never do.

I thought sixteen days? We could do that! A little over two weeks? A cake walk! It was the first time in a week that the sun was shining through the clouds for my little family. We were ecstatic. We shared the news with our family and friends. We posted it on Facebook. Sixteen days!

The forecast called for rain that Friday night so Chris headed home to be with our scared old dogs. No one in Houston was convinced just yet of the impending doom meteorologists were squawking about on the news. At the time, there was just another hurricane lurking out in the gulf. We Houstonians had been fooled one too many times with evacuation threats and flood warnings. Most of us had learned to keep an eye on the sky and go about life. So Chris and I had quick celebratory hospital dinner and I walked him out with a high five and a hug. Sixteen days. I almost skipped back to the NICU to tell our little guy goodnight before heading up to the Ronald McDonald House family rooms for some sleep.

As I entered the NICU, the usual calm of our pod had suddenly shifted. Dr. L and Dr. H, along with a handful of nurses, where surrounding Miles’ bed. I rushed over in a panic. Dr. H was on his phone describing the situation to someone on the other end. I looked down and saw what all the commotion was about. In less than one hour, Miles’ normally tiny stomach had swollen to the size of a small beach ball. He looked like he was about to pop. The skin on his tummy was tight and shiny, like a grape being squeezed. I knew immediately this was bad, what ever it was.

“What is this? ” I cried out frantically to no one in particular and Dr. H and Dr. L moved in close as they usually did when they had bad news to share.

And just like that, our perfect day was over and the storm clouds literally rolled in.

 

 

What Really Happened To Mighty Miles: Our NICU Nightmare Part 6

/ mandy7607 / 1 Comment

“What we mostly try to do here, is try not to overstimulate. We want to keep it nice and quiet and calm for ECMO babies like Miles. All these visitors and chaos are just not good for him.” Nurse B said disapprovingly to my mother.

It was Monday. Miles had been on ECMO for thirty six hours, the moon blocked the sun in a total eclipse that day, and an unstoppable steady stream of our family flowed in and out of his NICU pod all day.

“Maybe she is right, Mandy. Maybe all the chaos is not good for him.” My mother rationalized.

Even though he remained sedated on morphine and was never conscious, I had asked that anyone who came to see Miles bring a book to read to him or have a song to sing to him. We took pictures with him. We held his little hand. We talked to him.

I will say that now, more than ever, aside from my own under-appreciated profession as an educator, nurses are simply some of the most wonderful human beings on the planet. Rarely did I ever see a NICU Nurse even sit down during their long twelve hour shifts. They tended to every beep, every cry, every sweet sick baby. I respected any procedure or policy they informed me of and absorbed every bit knowledge they graciously passed on to me.

But Nurse B’ s comments got me hot.

Not good for him? Family telling him they loved him? Telling him to fight to be here? Saying a prayer over him? What were we supposed to do…stand around and watch him die? Sorry, that was not going to be his story, Nurse B.

If he had a 50/50 shot at life, and the Lord had other plans for this guy, his story was going to be that in the three days or five days, how much ever time he was allowed on this earth, he was loved. He was wanted and we were so very glad he was here. He would hear music and listen to stories of adventures that awaited him. He would feel the warmth of a kind touch, not just the sting of needles and the cold of plastic tubes.

Love. The love that only a family can make you feel. You feel it at Christmas and on your birthday. You see it on family vacations. Loud, crazy, chaotic love. As powerless and helpless as you feel as parent of a child on the brink of death, Love is the one field that we are the experts in. So respectfully, get lost, Nurse B. This is my department.

That’s how it went for the next two days, praying hard with loud and crazy family and close friends, watching the monitors as ECMO continuously pumped clean blood into my baby. He was fighting the bacteria that was now ravaging his organs, brain and spine. Seventy-two hours in, he was stable, but still deep in the woods.

Late Tuesday night, Handsome Dr. H came to Miles’ bed.

“Do you remember one of the negative side effects of ECMO that we discussed?” He asked us. He went on to remind us that ECMO uses a lot of blood thinners to keep the blood from clotting. So much thinner that it can cause brain bleeds and hemorrhaging. Three days in, Miles was not the exception and his brain had begun to bleed. Brain bleeds put a risk to his quality of life, should he live through this.

“He’s thrown us a real curveball and we are going to have to take him off the machine much sooner than we had planned.” Dr H looked worried at the idea. They would remove the cannula out his neck and shut down ECMO early Wednesday morning. Whether his sick little body was ready or not, he was going to have to continue this fight all on his own. As my husband put it, Miles was going to have to show up.

We were beginning to suspect that Miles may like chaos.

What Really Happened To Mighty Miles: Our NICU Nightmare Part 5

/ mandy7607 / Leave a comment

“We need to get through to the children’s hospital!” We shouted at police officers standing by a barricade to a closed road that our GPS has lead us to. We could see the helicopter carrying our baby touch down on top of the hospital. It was just after midnight and the road around the hospital was lit up blue and red with police lights. An officer helped us with a detour. We found out the next day that someone was trying to blow up a Sam Houston monument in protest. Of course.

Chris was already there so he guided the rest of us by phone on where to go in the huge mall- like building. The hospital was dim and empty. The only sounds you could hear were the whirl of floor buffers and the ding of elevator doors. My mother, brother and I were quiet in the elevator, all of us on three days of no sleep and terrified at what was waiting for us when the doors opened.

On the seventh floor, we met up with Chris and walked to the lobby. He said the doctors were coming back to speak with me. His eyes were swollen and he squeezed my hand over and over as we waited. After a few minutes, the doors to a staff only entrance opened and a team of doctors speaking in a low huddle walked toward us. My heart pounded in my chest.

“Hello, Mandy, I am Dr. L and this is Dr. H. Have a seat and let’s talk about little Miles.” She shook my hand and held it for a moment. She was a thin older woman with a yoga body from way back. She wore turquoise and silver. Her hair was salt and pepper and short. She looked kind and smart. We all sat at a small, colorful kid’s table.

“Mandy, Miles is very, very sick. I will be honest, his heart beat was almost nonexistent as the life flight landed.” She began. She had tears in her own eyes as she held my hand from across the table. “We have a machine that Dr. H and his team control called ECMO that is his only hope at this point. If we don’t get him on it very soon, you need to go and tell him goodbye because he will die.” She said. Thick tears fell from my tired eyes as I blinked at the thought.

Dr. H, a handsome young guy that looked and spoke more like the cool youth pastor at a church, grabbed my other hand from across the table and began to describe how the machine worked. It would basically pump his poisoned blood out of his carotid artery from his neck into a machine that cleaned it and then would pump it back in, keeping him alive by acting as his heart and lungs.

Dr. H reiterated that the machine was only going to give Miles a fighting chance. His body had to rise to the challenge and take to the antibiotics as well. He had to fight too.

50/50, they said. A coin toss.

“Questions?” They asked as they slid a clipboard with documents requiring my signature toward me. No matter what my questions or concerns were at this point, it didn’t matter. Like they said, this was his only chance so I signed and initialed as fast as I could.

The surgery to connect him was successful and Miles’ sick blood began to be cleaned in the ECMO machine. Later that morning we were taken back to see him in the NICU. He was in a pod with several other sleeping babies. It was quiet except for the constant hums and beeps of all the machines keeping all those babies alive. I stepped up to the tall platform of the ECMO that looked like something out of Star Trek’s mission control room. I looked down at my sweet baby. He had made it through the surgery but his fight had just begun. The next 48 hours were going to be the deciding factor of life or death. Period.

“What do we do now?” I asked Dr. L as she stood among my family and I around his little bed.

“Go home, eat, shower and pack a bag. Then come back and be here for him, especially these first two days. We will just have to wait and see what happens.” She said.

Wait and see what happens. We had heard that so much in the two days that he had been on this earth. Patience was never a virtue.

Before she left I asked her to write down all of his diagnosis so that I could research them and understand more of what was going on with him.

In doctor scribble she wrote:

Group B Strep

Bacterial Meningitis

Sepsis

Septic shock

Respiratory Failure

I stared at the those words over and over in a quiet Denny’s restaurant early that Sunday morning. We stopped in for a quick breakfast before heading home to shower and pack a bag for our indefinite NICU stay. I googled each ailment as we somberly sipped coffee and poked at our eggs. The doctors were right.

50/50. A coin toss.

It was one of my darkest hours, that breakfast. Over the years, my faith in the Lord has been somewhat in question. My views have always been a bit controversial. But for some reason that morning, I knew the only thing that was going to tip the scales in our favor, the only thing that was going to save our baby, was prayers. Lots and lots of prayers.

I grabbed my phone and opened my Facebook app.

Dear Facebook Friends and Family…

What Really Happened To Mighty Miles: Our NICU Nightmare Part 4

/ mandy7607 / Leave a comment

I should have been laying in my recovery room that Saturday, listening to family members from both sides go back and forth over who the baby looked like. I should have been frustrated trying to feebly breastfeed for the first time. I should have been holding him, kissing his sweet little face all day.

Instead, early that Saturday morning, they came in with a security card and a wheelchair for me to go back and fourth to the fifth floor NICU. I wasn’t trying be a badass, but I didn’t need the wheelchair. That whole “mom lifting the car off her baby” super strength adrenaline kicked in. I could jog up the stairs if it meant I got to be with my baby.

Chris had been up there already. He warned me as the elevator doors closed that it was one of the worst places he had ever been: nothing but sad, sobbing parents sitting beside sick little babies inside mid-evil looking apparatuses. “Mandy, ” he said, “he doesn’t look good.” He grabbed my hand as the elevator doors opened.

“Why does he look blue?” I asked as we stood around him. He was all alone in a large room, swarms of doctors and nurses around him, tending to beeps, alerts, alarms, cords, and needles attached to my tiny guy. “It’s some oxygen issues and it’s some mottling.” A older Nurse said breathlessly as she tended to a difficult cord. “Is that bad? “I asked. We tend to always look for someone to reassure us in these situations. I learned very quickly that doesn’t happen too often in the NICU.

“It’s not good, hun.” She said, avoiding eye contact with my weepy eyes.

Mottling, I googled.

No, hun, that’s not good at all.

By the time my mom came in, I had begun to have an out of body experience and truly, it’s exactly the way it has always been described on tv and in books. I didn’t float up to the ceiling, but rather, I floated outside the room to the little nurses nook right outside of the door and saw the chaotic scene unfold . I saw myself in my cute grey robe I had gotten as a shower gift, hysterically screaming to my mother “He is fucking dying, mom!” Her arms were wrapped around me, holding me up on my weak knees. I saw Chris, stoic, standing against the back of the room, trying not be in the way, trying to stay calm and be strong. It was brief, but it still plays like a bad movie in my head even as I write this. I’ve never felt so helpless in all my life.

I came back to my body, hearing some reassurances from the staff but they sounded a million miles away.

Calm down, mam.

Where gonna try not to let that happen.

He’s a fighter. He’s trying to beat this.

I remember looking at my mother, begging her to fix this, the super hero that she is. Like a scared little child, I wanted her to make it all better. Make him better. Please don’t let this happen, mom. But as grown ups we learn that our parents aren’t super heroes and she was just as helpless and shattered as I was.

No one was fixing him. My heart was breaking. I was preparing myself to lose him.

“It’s bacterial, we know that now. We could start him on antibiotics but at this point his vitals are just too bad and he is septic. That means this bacteria is poisoning his blood and shutting down his organs.” Dr. P said, carefully studying the monitors that continued to go off. They would just have to wait and see.

Get some rest, everybody said as I sat in a chair at the back of his room. That wasn’t going to happen, people.

I half heartedly greeted family members and close friends that visited throughout the day. My voice trembled involuntarily as I tried to explain what was going on the best that I could. Everyone tried to comfort us with stories of someone’s cousin or coworker’s child being in the NICU and leaving perfectly fine but, honestly, their voices faded into a fog. I spent the day stroking Miles’ tiny hand at every opportunity I could. I would also study Dr. P’s face. He would take off his glasses looking at reports and rub his eyes, he would rub his temples looking at the monitors. He made phone calls with Miles’s chart in front of him. He look defeated and at 10:30 PM, he was.

“We are going to lose him if we don’t get him out of here and downtown fast. He is getting worse. They are a level 4 NICU and have a machine that may help him there. We are calling for a life flight now. I’m sorry I could not do more.” I had a strange feeling that his shift probably ended hours ago. He looked sad and tired. He was the first of many good doctors we encountered on this journey.

The life flight team arrived at midnight. I rocked back forth like one of those elephants in distress on the Discovery Channel as they moved our sweet baby into a tube like machine and prepared to fly him across the Houston sky.

His first adventure.

My tired, heartbroken family and I zipped along an empty I-10 freeway toward the children’s hospital, guided by the red lights of the helicopter carrying our most precious cargo, blinking through the stars.

What Really Happened To Mighty Miles: Our NICU Nightmare Part 3.

/ mandy7607 / Leave a comment

I think some of the scariest words you can hear from a doctor are “I don’t know what’s wrong.” You don’t know?? How can you not know? Is it a new one for the books? Is it something doctors before you have never seen or treated?? You don’t know?! You have to know!

In the first few days after the delivery, I heard a lot of I don’t know’s.

After they took the baby out of our recovery room, a nurse came back with some vague information. She asked if my OBGYN had preformed a swab test of any kind in my last few visits. Since I saw my OBGYN two times a week in the last two months of my pregnancy, I could recall with some certainty that I had been swabbed at about 35 weeks as well as early on in the pregnancy. She made some notes in my chart and then informed me that a doctor from the NICU was on her way to speak with me.

Truly, and I mean this when I say it, I did not know what a NICU was. Of course I knew there was a place where they took sick babies and preemies, but I didn’t know that was the acronym.”Is that the place where my baby is now?” I asked her, confused by a combination of the situation and the drugs from the delivery still floating around in my head. “Yes.” She replied. “They are trying to figure out what’s wrong with him.”

“Is it serious?” I asked the doctor as she entered the room. At this time, I was all alone my room. My mom had went to my brother’s hotel to take a shower and get a quick nap. Chris went home to let the dogs out. Jamie left to put the kids to sleep. How were they to know the shit storm blowing in only an hour or so after they left?

“We are not too sure. I will say that he is having some serious respiratory issues and the cause is unknown to us at this time. Your records indicate that you were swabbed at 35 weeks and the results from your test were negative. So now we are trying to figure out what, if any, bacteria or virus may be causing him to be ill.” The doctor spoke to me in that intelligent, compassionate voice any good doctor masters in order to deliver terrifying news. She was a thick Indian woman standing at my bedside holding and petting my hand. I remember thinking this couldn’t be good, a doctor I’ve never met holding my hand. She informed me that Miles would stay of the 5th floor for now, the Neonatal Intensive Care Unit, or the NICU, as I now knew it. They would keep me informed of any changes and soon I could come up to see him. Get some rest, they all said. Yeah right.

I texted my mother and husband.

GET HERE NOW. BABY IN TROUBLE.

I lay in my bed, googling, waiting for my people to come back. Googling alone in a dark hospital room should be against policy.

Swab test during pregnancy.

 

What can Group B Strep do to a baby?

A knock on the door pulled me out of the terrifying google hole I was tumbling down. I was hopeful it was a relative, a friendly face but to no avail. Two men came in this time.

“Hello, I am Dr, P, “he said, shaking my hand and then he gestured toward his companion. “This is Mr. R, a Chaplain here at the hospital. We need to speak with you about the baby.” Chaplain. My stomach dropped. Mom, Chris…where are you?

Dr. P was taking over Miles as a patient in the NICU. Respiratory issues in babies were his field. He came to give me an update of the situation and answer any medical questions I may have at the time. Mr. R, the Chaplain, there for my tears and spiritual needs.

A foggy recollection of the doctors’ update went something like…body shutting down, blood gases are bad, respiratory failure, possibly entering sepsis and septic shock, heart rate slowing, we put him under for now…

Then came those I don’t know’s.

He didn’t know what it was. He didn’t know the cause. He didn’t know how to treat it. He didn’t know if the baby would make it.

All those cliches of room spinning, heart dropping, breathing stopping, world’s colliding, and trying to wake up, hoping this was just a bad dream, began to happen to me. If you have never experienced it, lucky you. But it’s real. He didn’t know if the baby would make it. All my planning, preparations, and my cocky “pregnancy is easy” attitude…I had never stopped for one moment to even entertain the possibility that I may lose this child. The flood of emotions was all of the place; fear, frustration, anger, confusion, despair, sadness.

“So what exactly is going on?” My mother asked as she hugged me and apologized for not being there the last couple of hours. The same question from all my family as they poured back into the room. I answered what I could through my tears but for the most part, I too, just didn’t know.

 

 

What Really Happened To Mighty Miles: Our NICU Nightmare Part 2.

/ mandy7607 / Leave a comment

During my pregnancy, I made a promise to myself (and childless friends and family) that I would make every effort to spare the world “the labor story”. Everyone’s is different, everyone’s is hard. I know for the most part, mine was nothing that many, MANY women before me hadn’t gone through. However, ours may have had a slightly different ending.

On that Thursday night, after dinner and the arrival of a few friends and family at the hospital, I received medication that would begin to thin my cervix and the following morning the doctor would begin the Pitocin and break my water…just regular inducing procedures. All went as planned. Pitocin began at 6:00 am and Dr. B broke my water at about 8:00 am. Ready or not, this was happening.

I spent the day, Friday, August 18th, in labor . I received an epidural sometime around noon. With no baby and approaching a dilation of nine centimeters at 7:00 pm, Dr. B informed me that her shift was over and hospital policy was that she had to go home. Her colleague, Dr. S, would be taking over and would be coming by soon to discuss the possibility of going in to to get the baby via c-section if progress continued to be fruitless. It was scary, but I knew these things happened and are always a possibility. I was tired and shaking from the trauma my body could feel. My breathing was labored. But still, at this point, I really wasn’t too worried about myself or my baby. I knew he was coming somehow and somehow I was going to get him here.

At 9:30 pm, 27 hours in, something wasn’t right. It was obvious the baby wasn’t going to come this way, so at 10:30 pm, we moved to the operating room for an emergency c-section. My body was shutting down. My labored breathing worsened. My sweet husband asked if my mother could go in with me instead of him. I understood. He had spent the day pretty freaked out. My mother on the other hand, four children and ten grandchildren under her belt, was an old pro and could provide some solid support. So I kissed him goodbye and my mom scrubbed in for the OR. Here is where things get very foggy and a little scary for me.

With an oxygen mask on my face to help with my panic induced hyperventilation, I remember the curtain going up and my mom beside me. Then nothing. Blackness. I was out. Passed out or put under by the doctor, I don’t know. How long, I don’t know. All I know is that when I woke up, I was a momma. Just like that. Life is weird.

“Is that my baby?” I asked my mother, standing beside me as I came to. She was cradling a tiny creature with a head full of jet black hair in her arms. “This is your baby and Mimi got to hold him first!” she teased, gazing adoringly at grandchild number eleven. She brought him close to my face for a moment before I began to hyperventilate and pass out a second time. But it was enough time for me to see how beautiful his face was. A sweet little mouse face. Nine long months I had waited to meet him. Thirty-seven long years. Miles Christopher Cuellar was here. 5 lbs, 16 ounces.

My cloudy recollection of the next two hours doesn’t make for the smoothest story, unfortunately. The hour or so after any operation is a lot of room hopping ,waiting for follow ups, and dealing with different health care people who you aren’t quite sure who they are, asking you questions and poking on you. I am sad that I don’t recall with clarity those first few hours that I had with my sweet, new baby. Especially because that precious time I had with him, holding him, counting his fingers and toes, gazing at his sweet face with his proud dad on the bed beside me, came to an end so very soon.

Back in recovery, I can recall a few more cloudy details but what I mostly remember is a feeling. It was a strange feeling. I know now that it was mother’s intuition, but at the time I thought I was just being crazy. Looking at his face, in flashbacks or at the few pics that we took in those first couple of hours, you can tell, or see, or feel, that something just wasn’t right. He looked sad and unhappy. He was frowning. He looked like he was in pain. He was grunting a low hum-like noise. I thought it may be normal newborn stuff because what the hell did I know? And since no one had said anything about it I tried to shrug it off and rest easy. Lucky for me, my sister-in-law, Jamie, sensed something too.

“Take a nap, Mandy. I’ll watch him for a bit. You need some rest.” She said, cooing and lovingly jostling Miles around the room. I fought it a bit, but eventually got a little nap in. When I awoke, Jamie had an alarmed look on her face. “Mandy, I think he may be having trouble breathing.” she said, still bouncing him about, trying to get him to calm down. That hum-like grunt had gotten even louder as I slept. Right then, a nurse came in. Jamie relayed her concerns to her.

“Hmmm, you may be right.” The nurse said, listening to his chest with a stethoscope, a bit of a concerned look on her own face as well. “Let’s take him for a while and have a look at him.” She said, scooping him up and placing him back in his little baby cart. “Don’t worry, mom. I’m sure he’s fine, but we just need to be sure.” She trailed off as she wheeled my tiny, helpless, perfectly precious baby boy out the door.

But he wasn’t fine.

That was the last time I would see my baby in labor and delivery on the fourth floor of the hospital, the last time I would see him awake for weeks and the last time I would hold him, free of cords, wires and needles, for 67 long days. The click of that heavy recovery room door closing was the last of normal. This was only the beginning of our NICU nightmare.

What Really Happened To Mighty Miles: Our NICU Nightmare Part 1.

/ mandy7607 / 2 Comments

A big take away from my 37 years on earth has been learning to know my body. I have learned how to shrink it, how to enlarge it, the exercise it likes, the amount of alcohol it can handle (for the most part), the clothes it can wear to not look gigantic, when it needs repairs, etc. So I don’t know why that day, when my very young doctor told me to go upstairs and have my baby at 37.4 weeks, I did not listen to my body. If I had, it would have told me it was not ready, that my baby was not ready and that my elevated blood pressure that day could have easily been cured with a little rest. My body was not ready to have this baby and I knew it.

IMG_6673

Thursday, August 17, 2017 I spent the day moving furniture around in my office and classroom for the upcoming school year. The plan was to induce that following week, stay at home for 8 weeks with our new love nugget, then return to my multiple duties as an educator and a new working mom. Easy enough (yeah right). That afternoon, I left early in the 100 degree heat to head to my last prenatal appointment and I was never seen again. Just kidding. It felt ominous so I went with it. Life was never the same though, that’s for sure.

I had become fairly numb to my doctor and her staff’s overblown scare tactics. They  usually left me leaving their office in tears. I had learned quickly that doctors are apparently supposed to scare the shit out you with the worst case scenario at any possible turn. Why do they do this? Covering bases for the law suits? Please stop. Despite what any test or blood work showed, I only had moderately elevated blood sugars (gestational diabetes) that was treated with diet and low dose medication but other than that I truly felt amazing throughout my entire pregnancy! I went cave swimming in Mexico at 7 months! I nested! I worked out! So many woman had it much worse.  I did not take it for granted.

She said “I don’t like that blood pressure, Mandy.” I can recall that it was higher than usual, but not crazy high…somewhere along the lines of 139/88. She continued, “You are older, heavier than average, and I don’t want to risk it.  How do you feel about having this baby tomorrow and getting started tonight?” Tonight? What the hell was she talking about? I had a presentation to give at work the next day! A yoga class on Saturday with my girlfriends! My going home outfit was still in transit from Amazon! Aside from all these little life things, I thought for sure I’d feel…something…a drop, some pressure, that motherly instinct kicking in…something.  But I didn’t.  I just felt like a busy teacher. A bitchy pregnant lady. But a mom in less than 24 hours? I wasn’t ready.

I know I’m not the first soon to be mom to feel not ready because who ever really is? It was mostly my body that didn’t feel ready. It felt content. It felt like things were cooking just fine.  The baby’s vitals were great. He was in the perfect position. His estimated weight was 6 lbs. His profile was cute as a button (I was worried about his nose, though.) “Can we not wait? Is it really dangerous?” I asked Dr. B. With no medical training, we are at the mercy of their every word.  Say the word, say that my baby is in danger and I will be upstairs, legs in stirrups pushing him out in five minutes. After a thought and a sigh, she replied, “I think that it could be dangerous if we waited. Lets go have this baby, okay?”.  And with that, a few panicked phone calls to my husband and mother, and an “out sick” text to my boss, I was checked in on the fourth floor, labor and delivery, within the hour.  I sat on the edge of the hospital bed, my ass freezing in the backless gown, waiting for my baby squad and a last meal of Whataburger cheeseburger and shake, terrified and most definitely not ready.

SaveSave