A MicroPreemie Story: After the Storm

It’s been over a year since my last post.  If there’s anything I have learned about prematurity it is that even after the NICU everything is a fight.  A lot has changed.  We have moved, Beckham has grown, I am working again and the fight continues for his health, always.  I’ve had to regain myself.  Give myself time again to be me, to do the things I love.  Slowly but surely I try to when I have the time but still feel I have a ways to go.  There are so many new things I want to write about as Beckham grows but I want to finish his story in the Nicu as well.  So I plan to do both as we go along.  I will have the NICU series labelled separately and also write about the now with some flashbacks of what has been going on since we left the NICU almost 2 years ago.  It’s hard to believe it’s been that long.  Seems like yesterday.  So, lets begin with where I left off from my last post “From Hope to Horror”.

Nothing is ever the same after you’ve been through a near death experience of a child.  After you’ve been told he wont make it, after you’ve watched him covered in lines, filled with the maximum amount of meds that can be given to a 1 pound baby and after you’ve seen him be resuscitated.  Nothing is ever the same after the storm.

The hours that followed we were practically zombies.  Trying to emotionally recover from that night.  Trying to catch up on sleep when we could but worried if we slept something would happen, or we would miss something and it could happen all over again.  I wouldn’t leave his side.  My heart broke and my stomach churned every time I had to leave just to eat.  We weren’t supposed to but I would sneak in my coffees just so I wouldn’t miss anything else.  Usually after a trauma you need time to recover, you need things to slow down and in the NICU this never happens.  Everything keeps going, the fight continues, the tests continue, rounds continue and the stress to go along with it all.

Day 10: The morning after, all of the daytime staff was brought up to speed on the events of the night time.  The next several days would be filled with more tests than usual and we would have more doctors than usual because his little body had been put through the wringer.  Because he crashed he would need another brain scan to make sure there wasn’t any impact and an abdominal scan.  Nothing was making sense to the doctors.  His stomach continued to get more black and blue and distended yet the scan showed nothing.  Now that he had made it through the night his stats had improved yet his abdomen worsened.  The doctors could only conclude that he had a severe case of NEC. An infection usually caused in preemies of the intestines that essentially causes the infected areas of the bowel to die which required resection of large amounts of bowel.  The risk of not doing surgery and the risk of doing surgery were even.  Both were insanely high risk and all of the specialists on the floor had strong opinions for one way or the other.  Thus began the big debate.  Very early that morning all of the NICU specliasts had met to discuss Beckhams case and next steps.  Beckhams doctor and decision maker was torn as both sides made sense.  He had the toughest call in the history of medically related calls to make.  If they didn’t go in he could continue to get worse and die.  If they did go in he could be put at severe risk of greater infection and die.  We watched numerous doctors debating all morning.  Many of whom came to us to try and make their case for their side.  It didn’t matter.  Josh and I had our minds made up before the debates began.  We knew something was wrong on the inside and there was no point in waiting.  After what we had been through the night before we were willing to take the risk for surgery.  We voiced this to our doctor who took our vote which then seem to fuel frustration in another doctor that we had not directly work with.  She came over again to make her case and this time pushing hard and I wasn’t having it at all.  I knew what I wanted for my son and I knew what needed to happen.  I had heard enough.

Our doctor at that point realized we were getting no where and he needed to escalate the issue to the chief of the NICU so we could expedite the decision and move forward.  We were wasting precious time.  We were introduced to the Chief.  He was calm, polite, attentive and thorough, exactly what a chief should be.  He had an energy about him that made us feel less tense.  There was definitely a reason he was and still is in this role.  He reviewed every detail of Beckham’s chart down to the various blood results and abdominal scans and he too was stumped.  He just stared at Beckham for a bit, he opened the incubator port to get a better look at his discolored and distended abdomen and felt around his belly.  He reviewed the data on his monitors and O2 machine as he discussed with our doctor and with us the events of the days before leading up to the night before.  Beckham had received additional blood, plasma, platelette and FPP transfusions today to try and regenerate his whole system.  The Chief turned to look at us point blank and he said “I know what I think we should do, but what I care about is what do you think we should do”?  As I stood there relieved by his question I realized had I not used up every tear the night before I would be crying at his question because it’s exactly what we needed to hear.  We knew the answer.  We wanted him to have the Laporotomy (Exploratory surgery of the bowel).  He said “I agree. Let’s get moving now”.  Just like that everyone kicked into high gear.  Phone calls were being made, orders were being entered into computers, forms were being printed for us to sign.  They would do the surgery right where he was at his bedside in the NICU.  It would be too risky to transport him to an OR.  One by one new carts were being brought in full of supplies.  Cold metal cabinets, drapes, blood products, IV drips and more.  Doctor after doctor came by to discuss their part to play and their form we needed to sign.  Every form was lined with lists of risks which all ended in death.  They all worked together like a finely oiled machine.  Everyone knew their role, everyone knew the process, nothing was missed.

One hour after the decision was made the the prep had begun.  We were completely surrounded and tall barriers were placed around his entire bed area so no one could see in.  Any other babies in the area were moved to another bed side in the NICU.  I was standing over Beckham’s incubator just watching him.  I didn’t know what was going to happen.  I didn’t even know if he would survive the surgery so I wanted to remember him.  I needed to remember this mental image of him alive.  All of a sudden he started kicking his little legs, hard.  Kicking them in a way I hadn’t seen before. His whole body was moving and thrashing as much as it possible could.  His hands were clenched and his face looked like he was screaming but no sound was coming out because he was intubated.  Something was seriously wrong.  He was in pain.  He was in severe pain.  I turned to the person closest to me who happened to be a surgical nurse and said “Ya’ll to need to do something now!  Something is wrong!  He’s in pain!  He is screaming.  Please hurry!!” as tears started streaming down my face.  A doctor came and looked over and they said it was time for us to go.  I was in so much pain seeing him like this and I hated that this was possibly the last way I would see him or the last feeling he might feel.  I kissed his little hand through the hole of the incubator.  Never had I touched him and felt so far from him at the same time.  I just wanted to hold him and rock him and sing to him while stroking his hair.

We were escorted to the NICU waiting room, a place a couldn’t bare to look at after the night before.  We were greeted by the surgeon who walked us through every detail of what she would be doing.  She would be going in to look through every inch of bowel to see if there was any NEC.  If there was, his bowel would be resected.  There may be perforated parts of the bowel as well which would be dangerous and put him at more risk.  Bottom line, they didn’t know what they would find and looking at his abdomen they assumed the worse.  She said they would make an incision hip to hip which sent a jolt to my stomach thinking of his tiny body being opened up like that.  We signed the forms and she was off.  We would receive updates periodically.  We sat down in the waiting room hungry and wanting coffee but there was no way we were moving an inch until it was done.  Anytime we heard any type of alarm, even from a phone our hearts dropped with a sense of fear that only a NICU parent could fully understand.  We’d check to see the alarm lights, on the ceiling of the NICU labelled ABCDE for the various pods, to .ensure it wasn’t for the D pod where Beckham was located and breathe a sigh of relief when it wasn’t.

I honestly don’t remember how much time it all took and it really wouldn’t have mattered because time stood still while we waited.  Nothing else mattered, nothing was ever said, we sat in silence hoping for the best, expecting the worse and in fear that anything we did in these moments could somehow have an impact on the outcome of this surgery. Knowing full well these types of superstitions were ridiculous but at the same time, they just weren’t.  Every time the door opened we stood up hoping it was her, our sons surgeon, and sitting in disappointment after.  Finally the time came, I saw her through the long thin rectangular window of the NICU entrance about to open the door and this time instead of standing up I froze.  Now all of a sudden I wasn’t ready.  I wasn’t ready for what she was going to say.  I couldn’t take another piece of my heart out. Not even knowing what she would tell us.  The door opened and Josh stood right up, looked at me like only a husband who feels exactly what I am feeling and yet somehow was able to muster up a look to me that said “don’t worry sweetie, it’s going to be ok, I am here”.  I wished I was strong enough to return the favor.

The doctor walked us down the hall a few steps so we would have some privacy and as soon as she turned towards me she noticed the fear in our faces and immediately said “I have good news, everything went well and he is stable.”.  Unexpectedly, for the first time in hours, I felt like I could breathe.  She went on to tell us that all things considered what she found was best case scenario.  He had a focal spontaneous perforation but that wasn’t it.  The night he crashed was the original perforation of the bowel and it miraculously closed itself up, that’s why he survived that night.  Then while we they were prepping for surgery when he looked like he was screaming the perforation had re-opened.  This was incredible news in that there was no NEC anywhere in the bowel.  However this also meant he had loose stool in his abdomen from the two perfs that had to be cleaned out.  They resected the bowel and he would have an ileostomy which eventually would have a bag attached to it and he would stool into the bag.   He would have it for an unknown amount of time.  Of course we were not in the clear yet.  With the amount of stool in his abdomen floating around for almost 24 hours he would be monitored closely for infection.  For that moment it didn’t matter we felt a waive of relief because we made the right decision.  A sort to calm.  Realizing if he had not been prepped for surgery at that very moment he might not have made it.  We had won another battle.. That night we would revel quietly in the win knowing full well tomorrow the fight would continue.

In the image attached you will see his stomach discoloration and distended, surgical incision and a pad which is covering his ileostomy.  This is like a colostomy site for a bad but its a different part of the bowel.

2016-02-01_220449000_46F7E_iOS

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