A MicroPreemie Story: From Hope to Horror

It’s been three months since I started this blog post and 16 months since the next part of this story.  I haven’t been able to wrap my head around writing about this experience.  It was the worst day of our family’s life…

The first thing every doctor, nurse and mom that has been in the NICU tells you is that it is a roller coaster ride.  When I heard this I really thought this first week we had been through that rollercoaster.  I knew the first week they considered the honeymoon phase but it had already been so stressful with minor bumps in the road that I couldn’t even begin to imagine that I had yet to truly experience the real rollercoaster.  The rollercoaster I experienced still had hope for me to cling to, still had all of us coming out on the other side unchanged and ok.  My husband and I had read story after story of micro preemie survival and all these families had a healthy baby on the other end with one maybe two major medical issues to overcome.  That was the rollercoaster we expected.  The rollercoaster ahead would damage us for life, would change the way we looked at everything in this world, would give us pain beyond our imagination, would test our love for each other and our love as a family.  They weren’t kidding about it being a rollercoaster at all.  It was the worst most horrifying rollercoaster I could have ever imagined.  One you never want to get on. Once your on it, getting off seems like an unrealistic, ignorant wish that only a fairy godmother could grant.  And when you’re in the NICU the idea of such a belief is quickly diminished by the darkness of reality.  In the blink of an eye we went from hope to horror.

Day seven was our day of hope.  Things were looking up and one of our biggest fears of Beckham getting a brain bleed had gone after his brain ultrasound cleared him and the Neurologist assured us after this point brain bleeds were much less likely.  His stats were being managed very well, he had his first poop.  Not as much as they would have liked but it was something.  Towards the end of the day his belly seemed to be a little distended and harder than usual but the thinking was it was likely gas and they would hold his feed to be safe.

The evening quickly turned into early morning of day eight.  It’s amazing how quickly things can change in the NICU.  Overnight the belly had not improved and X-rays were ordered for Beckhams abdomen.  They showed the bowel looking abnormal but not yet indicating a major issue (i.e. perforation).  Beckham’s belly was very sensitive to touch, still distended, and now causing swelling around the groin area.  We were told to keep an eye out for discoloration.  His HR (heart rate) was up and his blood pressure was dropping, both not good signs.  When micro preemies are born blood pressures are typically an issue.  Keeping them up specifically.  They pressures are already quite low and due to this they need blood and platelet transfusions frequently as they cannot make their own cells fast enough.  The low pressure mixed with the heigh rate however could definitely indicate a problem but with nothing specific it would be a watching and guessing game with the doctors. While waiting Beckham would be given dopamine to help bring the pressures up and he would have an arterial line put in to get constant pressure monitoring numbers as they were having a hard time getting good reads on him.  Additionally nurses were draining beck hams stomach by putting a tube down his nose into his stomach and pulling back on stomach content, his content was green.  This was a bad sign.  It indicated possible blockage or infection but of course nothing was seen yet on the imaging.  Regardless the doctors went ahead and started him on antibiotics.  X rays were ordered for every 6 hours and the doctors started to discuss surgical options.  If there were no changes and no answers they would possibly have to go in blind.  Surgery on a baby this size is so risky and not knowing if you will find anything they had to weigh the risks vs benefit.

Some Doctors were hoping stopping feeds and draining stomach and adding antibiotics would solve the issue. Others were not convinced and thought something more could be happening.  Beckham started requiring more oxygen because of discomfort and he was now being given morphine for the pain.  He seemed to become less active and at the time we just assumed it was from the morphine.  Looking back not we believe it was lethargy. Beckham’s eyes which had been still fused together since he was born had finally opened today.  It was so wonderful to see him open those beautiful eyes for the first time but I just couldn’t muster up the excitement with all the worry.  As more x rays were taken the doctors were seeing dilated intestines and a possible gas bubble in a corner of the bowel, a possible hernia but the X-rays were just too difficult to read they were not helping much. Discussion started about possible NEC (infection of the bowel).  All we could go off of was how Beckham was doing and now his blood showed PH levels were down and his CO2 was up, additionally his urine output was decreasing.  They added more dopamine.

Day 9: Beckham was 26 weeks gestation.  His belly was more distended and color was changing in the abdomen.  I was taking constant pictures to show the doctors they blue-block coloration of his belly.  We didn’t really get a break.  If he wasn’t getting an x ray he was getting an ultrasound, if he wasn’t getting an ultrasound he was getting a blood test.  He was now receiving more dopamine, 2 antibiotics, saline and Epi.  His BP was stabilizing thanks to the meds but he was still quite lethargic.  The debates in the hospital for what to do were ramping up.  Opening him up with infection and even without infection just at his size was extremely risk and life threatening.  Not opening him up would be just as life threatening.  The constant back and forth and the look on the Dr’s faces did not ease our concern.  Yet still in the back of my mind I never felt a sense of my sons life being in danger.  I was worried beyond belief but I really felt the Doctors had the situation under control and I attribute that feeling to the Dr we had at that time Dr. Dave.  He was coordinating meetings and discussions and running around non stop to get us answers to every question we had.  He stayed by us all the time and they second he got an update he came and spoke to us and explained everything to us in a manner we could understand.  Before he walked away each time he always asked first “Do you have  any other questions and do you understand everything?”.  He gave us more peace of mind. The day went on and on like this and Josh and I were feeling exhaustion set in.  after grabbing dinner we made it back for night rounds to see who would be with us for the night.  We had one of our night time primary nurses Andrea and a new night doctor on call Dr. Lucke.  Josh and I discussed our plan for the night taking shifts one of us staying with Beckham in our pod area and the other heading back to the Ronald McDonald house room we had for the night which luckily was on the same floor as the NICU.  A few hours into the night Beckham started declining and activity seemed to be picking up.  I called Josh and told him what was happening and he headed over.  Before we knew it things were escalating quickly.  They were having a hard time keeping Beckhams blood pressure up.  We had been watching it all day and night.  The blood pressure on the monitor had a total average number with it.  That’s the number we watched because it should always be at the gestational age of the baby or higher.  So Beckhams needed to be around 25-26 average.  His started slowly declining that evening to 24, 23, 22… even with the high levels of dopamine being given.  This part of the night is such a blur to me but it didn’t take long for us to understand whatever was happening was serious.  More and more people were showing up to his bed side.  Eventually our nurse told us we should sit back for a bit.  She set us up with two reclining chairs in our own pod area with a few of Beckham and everything going on and brought us blankets and pillows.  This was a first.  This told us nothing good was going to happen.  We both laid back in our chairs staring back and forth at each other and his monitors.  We never said a word to each other.  Our faces said everything.  I couldn’t move, only to look away from the monitor occasionally to see how my husband was doing.  He was doing the same as I was.  Motionless, with a sinking feeling that if we did move we might explode.  Our blood pressures were through the roof, I was nauseous, and my eyes kept filling with tears.  I couldn’t keep them away.  The night doctor pulled up her own chair.  She would be here for the long haul. At this point his numbers were really bad.  His pressures were in the teens.  I couldn’t watch anymore.  His tiny incubator was surrounded by people and I didn’t even know what they were doing. They were all moving so fast and everything I was seeing was in slow motion.

Dr. Lucke came to talk to us for an update.  She told about his pressures declining and that they were doing everything they could.  She was not sure what was happening, could be infection could be something else.  She explained at this point there was nothing else they could do to help Beckham…he was maxed out on everything (dopamine, epi, etc.).  All we could do now was sit and wait and leave it up to him to fight.  Things could go either way. I felt my body weaken and begin to shake. Thats when the doctor told us.  “you need to prepare yourselves for the worst, there’s nothing else we can do, you need to understand he may not survive the night”.  My heart stopped and I could feel I was about to burst.  Completely overwhelmed by witnessing all we had already and the ups and down of just the day I could not let myself breakdown in the middle of the NICU.  It was everything I could do to process this after all of the emotions we had gone through in the past hours in front of everyone.  I just looked around and said “I need to leave”.  As I headed for the door racing past the other pod spaces, I set my eyes on the door and walked faster and faster until I ran through the door barely able to contain my outburst and flood of tears.  Once out the door it was like I was holding my breathe and I let out a loud gasp and cry.  Grateful that the waiting room was empty I collapsed onto the chairs in my husbands arms and cried uncontrollably… harder than I ever had before.  Screaming “it’s not fair!!!” “I just want my baby boy!!!  I want him to live!! WHY”  barely able to catch my breathe and face covered in tears “how can this happen, its not FAIR!!”  I was crying so hard that my breaths in-between were as loud as my screams. I’m not a religious woman but in between my outbursts I begged God if he was there to please not do this to us, please keep him alive, i negotiated with him, and I begged again and again and again.  I felt Josh’s tears cover my shirt.  All I could think was “we have already had our life tragedies, I thought we reached out limit, how is it possible for more to happen to us? again screaming with every inch of my body “it’s not fair, I just want my baby, he has to live!!!”  The front desk receptionist walked over as we sat in the darkened waiting area alone drenched, red faced, swollen, unable to breathe.  She handed us tissues and walked away saying nothing and unable to look at us in fear she may cry too.  Now that I look back I imagine this was not the first time she had seen something like this.  My entire body ached, I couldn’t move from sheer exhaustion, mental, emotional physical… We cried so hard and for so long until we had completely dehydrated our bodies and there was nothing left.  It lasted so long we lost track of time.  Our an hour later someone came to get us and bring us back inside.  We didn’t know what to expect.  When we left it was touch and go and he could go either way.  As we returned the doctor explained to us he seemed to be stable and unchanged since we left.  This was a good sign but we didn’t want to get our hopes up.  We still had a long way to go from there.

We never slept that night.  The entire night and into the day.  We were set up by his bed with our chairs and pillows and blankets.  We laid down again staring at everyone running around, looking at each other with empty eyes, motionless, speechless, waiting for what was to come… waiting.  waiting.  begging. praying. and waiting.

My memory does not ever do me justice.  It never has.  I mostly remember things in spurts with bits of cloudiness and some inaccuracy.  This night, however, I remember.  I remember how I felt; the aches and pains, the tears, the smells, the looks on peoples faces, everything about my husbands face and how he comforted me all the while he needed just as much comforting and I couldn’t give it.  I don’t know how he mustered up any energy to comfort me.  I remember my chest hurting, my inability to breathe, his bed being surrounded, the seriousness on everyones face, even the onlookers that were not involved.   I remember the chairs we sat in in the lobby, the darkness of the room how appropriate, the exact words used that we needed to prepare ourselves for our child to die.  A parent can never forget those words, even one with the worst memory.  never.  The fear, the hopelessness.  How can we just sit and cry and not be able to do anything to save our son?  I remember not wanting to open my eyes because they hurt from crying so hard and maybe if I kept them closed everything would be ok.  I remember running to the bathroom in between and throwing up because my body had reached its limit.  I remember feeling that if he was going I wanted to go too.  Moments of me feeling like a failure, looking in the mirror and seeing red blood vessels that ruptured all over my face around my eyes and cheeks from the pressure of my sobbing so hard.  There isn’t one moment of that night that escapes me and when my memory decides to bring back an inkling of one of these moments I completely lose it.  I can’t hold back my tears. because every feeling from that night overwhelms my senses and I’m transported back.  I can’t get rid of it.  I want to but I don’t.  I want to never feel that way again for the rest of my life yet at the same time I want to never forget the feeling so I am always reminded of that tragic events that make our son the miracle he is today.  I guess with an experience like this we don’t get to pick and choose.  It’s there with us forever and can creep up on us in a moments notice.  We will forever live with the thoughts, emotions and visuals of that day, engraved in our minds, unable to cut them out.  It’s a curse, there is no blessing in it.  Yes he made it through the night, but what it took to get there never leaves us and what it took from us is gone forever.  It changed us.  For better and for worse. It changed us.

…To Be Continues

 

 

 

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