Update - He's Holding On After His Critical Turn (Days 38-42)

Our sweet little fighter on his 6 week birthday.

To everyone that follows this blog, I apologize for the dearth of updates over the past week.  This time has been so full of ups and downs that there was never a moment that I was able to sit down at my computer and actually put words to paper.  In short, Benton seems to be pulling through this latest challenge and he is taking micro-preemie sized steps on the road to recovery.  The doctors keep stressing that he is still extremely critical and not out of the woods yet but he has stabilized.  As the main attending doctor put it "he has started the long journey up the mountain, he started slipping back down but we shoved him back; he is still near the bottom and has a long way to go".

Now that I have told you the short and sweet version - that Benton is still holding on - I will tell you the long version of this last week's turn of events...

On Monday morning I woke up and it felt like any other day.  I teleworked in the morning and then headed off to the hospital to visit my little man at lunchtime.  When I walked into the NICU, I immediately glanced across the bay and saw a lot of activity near Benton - this was not a good sign.  As I walked over it seemed like everything went into slow motion.  I immediately walked up and saw that Benton's oxygen saturations were extremely low in the 50s and he was requiring 100% oxygen.  The attending doctor came over and said things were extremely critical and that Benton was needing full oxygen support and they would do what they could to help him.  Hearing this news, my heart just dropped in my stomach.  I called Joe to rush to the hospital and then just sat and stared as several doctors and nurses buzzed around my son's isolette trying to stabilize him.  I kept watching his oxygen saturations drop lower and lower until they bottomed out in the low 30s.  Joe and my mom rushed into the NICU and joined me and my mother-in-law and we all just watched in horror as they tried to stabilize my little boy.   The doctors threw everything they had at Benton: dopamine (to increase his blood pressure), hydrocortisone (a steroid to increase his blood pressure and reduce inflammation in his lungs), nitrous oxide (to dilate the veins to his lungs so blood could better circulate), antibiotics, nebulizers and morphine.  As we stood there we prayed that his numbers would bounce back like they had 3 weeks ago when he had required 100% oxygen and the nitrous had helped....but this time his numbers didn't rebound.  The feeling of helplessness and terror that seized me was all encompassing and the tears just started to flow.  I went to call my dad and sister in Hawaii and explain the situation and I couldn't hold back the tears despite being in a hospital hallway.  By the time I finished the phone calls I was sobbing uncontrollably and another NICU mom had to help calm me down and hug me telling me "You have to be strong for your son - you can't go back into the NICU while you are crying - you must be strong for your son and have hope and faith".

At this point, the attending doctor took our family into the dreaded side room off the NICU.  She sat us down and explained that Benton had multiple organ failure and was also suffering from pneumonia. His lungs were failing as a result of pneumonia, his heart was failing as a result of compensating for his lungs and his kidneys were still experiencing renal failure.  The doctors explained that Benton's lungs were already so damaged from weeks on the ventilator, various lung collapses, and extreme prematurity that his lungs were not able to compensate for the additional stress of the pneumonia.  Hearing this news made my heart just break.  The doctors said that they have done all they could for Benton and that he could not survive with his oxygen saturations in the 30s, 40s and 50s and therefore they would continue ventilating him but would not give him chest compressions.  Furthermore, the doctors said they were unsure of what type of lasting damage had been caused by the oxygen deprivation to his body as they were trying to bring him back.  At this point, Benton was at an oxygen saturation of 50.  We were told that the doctors would give Benton one hour to recover and hopefully we would see improvement in his oxygen saturations.  If after that hour no improvement had been made the doctors told us time and time again we should just hold Benton and say our goodbyes.

Sitting vigil next to our little man.

 Hearing this news was the most devastating moment in our entire lives.  After the doctors gave us the news they left our family to digest everything.  Joe and I curled up together and just started sobbing.  We kept saying how much we loved our little man and how honored we were to be his parents.  Joe said that one of the best moments in his life was reading stories to Benton and I kept saying that holding Benton this past Friday for kangaroo care had been the best moment in my life.  Hearing us say these words out loud made it seem more real that we could be losing our son before day's end.  After what seemed like an eternity of crying and sobbing we pulled ourselves together to go see our beautiful son.  As we sat with him our nurse, Mary Anne, said we should hold him (i.e. put our hand to hold his head and feet) so Joe and I each put our hands on our son and held him for what we thought might be our last time.  As we sat there sitting vigil by his bedside we took turns holding Benton and reading him his favorite stories and praying.  As we sat with Benton he began to slowly, slowly, slowly increase his oxygen saturations from 50 to 51 to 52 and so on until he finally reached the low 70s.  It's so scary to watch your son walk the tight rope between life and death.  If his sats had dropped from 50 to 30 we would be saying goodbye but since his sats went from 50 to 70 Benton could continue his fight on the road to recovery. 

Joe and I holding our sweet boy.

As the day wore on, our emotions became utterly frayed as we alternated between praying, trying to enjoy what could be our last minutes with our son and trying not to stare at his monitors.  A mother's love is all encompassing, but having to watch your son teeter on the edge of the cliff called life was unbearable.  Each time his numbers dropped even a smidge my heart filled with terror.  At one point later in the day a radiologist came to do a renal ultrasound to better understand what was going on with his kidneys, but Benton was not having it.  He de-sated back down to 30 and watching this go on and be able to do nothing to stop it was excruciating.  Luckily the doctors stopped the ultrasound early because Benton was not tolerating it at all.  By nights end all our family was stopping everything they were doing to come be by our side be it by planes, trains or automobiles from across the country.  In the face of such devastating news and such minute to minute panic its wonderful to know that we have such a supportive family who would rush to be by our side.

After sitting vigil with Benton all night long with each family member doing shifts and me pumping every few hours by his bedside, Benton started to slowly slowly stabilize.  On Monday evening out of nowhere Benton started peeing and hasn't stopped since.  While we couldn't have been happier to find out that Benton was finally peeing it was bittersweet because one organ was finally making a recovery as the others were failing.  However, by Tuesday mid-day the doctors were telling us that we needed to go home and rest because Benton was doing okay but was still extremely critical.  Since then he has continued to stabilize with the normal ups and downs along the way.  One hour he will be down to 65-70% oxygen and then less than an hour later he will be back up to 100%.  At this point any stimuli is extremely unnerving for our little man and he has not been tolerating being touched, moved or even having his diaper changed during cares without de-sating.  The doctors say this is normal and that he will take a long long time to recovery from his illness and subsequent lung problems.  As of now Benton has made a 5% recovery, according to the doctors, and they seem happy, thrilled even, with his progress against all odds. 

Benton in his big boy diaper since he hasn't stopped peeing!

Joe and I would like to thank everyone who has sent love, thoughts and prayers to our beautiful boy.  We are convinced that with everyone's positive healing energy being directed to our little man he was able to overcome the odds and come back from the brink.  We are forever grateful for everyone who has supported us through this trying time.  Each note, text, call and post have uplifted our spirits and let us know that we have the love and support coming from all over the world.

Happy 6 Week Birthday to Our Little Fighter!