The Family Meeting (aka the scariest day), Day 13

Today was likely the one of hardest days of our lives, yet like so many things in the NICU it started off perfectly innocuous.  As you may have read in our post from yesterday, we felt that Benton's lungs were starting the slow road toward improvement.  When we arrived in the NICU this morning Benton's ventilator was at 67% and he was high-sating which was great news in comparison to the 100% oxygen supplement from the previous days.  In addition, this was an indication that he was stabilizing as the numbers hadn't changed much from the night before.  While we sat with him he gradually was able to come down on his oxygen to 44%.  We were ecstatic and couldn't have been happier to be seeing some improvement in his vitals.

The NICU social worker had previously set up a family meeting with the doctors to discuss Benton's overall condition and that meeting was set for today.  We had seen our doctor the last two days we visited and he had been giving us updates on what was going on with his lungs.  So we expected this update to be more of the same.  We expected him to just say that his lung had deflated but that he was making slow progress back to normal.  But our doctor was running late, and the nurses kept saying, we're "all" here but he isn't.  We had thought it was only us and the doctor so we didn't know who the "All" was.  When he showed up, the nurse immediately asked him to look at Benton's stomach, which the nurse described as having a "dusky" color.  This was the first we had heard of this which made us nervous but the nurse said that it had been there for the past few days.  So after the doctor looked at Benton's belly for awhile, he lead us to a small room off the NICU floor and we were followed in by two nurses, a chaplain, the social worker and a senior fellow.  Without wasting much time, Dr. Abubakar dove into a list of extremely gloomy conditions that, most of which,  we were not at all prepared for.  We were really expecting and prepared to talk about his lungs and his level 1 brain bleed.  But instead we got a laundry list of potentially fatal conditions thrown at us:
-- His existing brain bleed didn't change but a new one was detected.  One caveat is that they haven't decided if the new bleed is actually a bleed or if it could be brain tissue that was not getting enough oxygen.  Either way, it didn't seem like a good thing.  They said they would tell us more about that on the next scan on Monday.
-- The "dusky" color in his belly could indicate that his intestines have a disease called NEC which can be extremely fatal (I'm not going to bother putting up a link to this because it's pretty nasty).
 -- His lungs have not been improving as much as they had hoped especially due to his collapsed lung.
-- He has developed edema (i.e. severe swelling and water retention) over most of his body due to all the medications and transfusions he has been given.
-- The edema and his movement is causing skin areas around his elbows and armpits to breakdown and bleed. While we had known his skin was having breakdown they said that in its current state there is a high risk of infection where there is an open wound and this could potentially be fatal.

Any one of these things would have been a lot for a baby to handle and due to the numerous conditions facing Benton, the doctor was telling us that he was extremely concerned at how the next few days would play out for Benton.  He stated again that Benton's condition was extremely critical.  This hit us like a ton of bricks, and when the social worker asked how we felt I described it as feeling like we got sucker punched.  

After what seemed like an eternity the doctors and nurses left Joe and I in the room.  This was the moment where my strength broke and my eyes erupted in tears.  Sitting in that room with my family I broke down and just cried for what felt like forever.  We then pulled ourselves together and went out onto the NICU floor to see our lovely baby boy.  Every time I lay eyes on my beautiful son I feel the biggest swell of love and all I can think about is how much of a miracle he truly is and how God will heal and save our perfect little man.

Because we were still wavering between unbelievable sadness and a determination that we could not give up on our baby boy we headed downstairs to the chapel.  Praying in the chapel felt like we were doing something to help Benton and it helped to calm my negative thoughts.  The combination between prayer in the chapel and some fresh outdoor air did wonders on my nerves and we spent the remainder of the afternoon with our beautiful boy; telling him how proud we are of him, how he can fight these illnesses and how he will be healed with all the positive thoughts and prayers being sent to him.

Later in the evening we headed back to the NICU to continue our visit after a brief break.  As we entered the NICU we saw Jim, one of our favorite nurses and he was on Benton duty for the night.  It's interesting that after only 3 days you can start to feel attached to your son's caregivers especially when they have helped you through rough times like the collapse of Benton's lung.  As we visited Benton we read stories, sang small lullabies and prayed for his continued strength and ultimate recovery.  In addition, Jim told me that I should start "holding him" as this can calm him down.  Holding a preemie is not like holding a regular baby.  You cup their head with your left hand and gently place pressure on their feet.  The idea is that this will feel like they are in the womb with your left hand being a full bladder and your  right hand being the mother's ribs.    As we sat with Benton his breathing stats continued to get better and better.  His oxygen level gradually went down from 40% to 21% which the same percentage as ambient room air.  This was a huge milestone and the first time we had seen Benton hit such a great number.  In addition, his blood gases were improving and they were able to reduce the pressure on his ventilator down from 40 to 36.  These improvements in his breathing definitely gave us hope, but we continue to hold vigil regarding his overall health and the condition of his intestines, skin, brain, lungs, heart and the swelling of his body.

All of the loving prayers and healing energy that everyone has sent over the past week has truly helped to improve Benton's lungs.  Now we need everyone's continued love, thoughts and prayers to help heal Benton's intestines, his skin, his brain, and reduce his edema.  The overall health of our boy is truly all we want in the world and we hope and continue to pray for his full recovery and for his future as a healthy, happy baby boy.