Days 34-37

I had written this blog post before everything happened on Monday.  This will give a bit of back story on the events before everything went downhill.

Happy 5 week birthday!

The last few days have been an exercise in patience and hope mixed with a touch of terror.  Benton had stopped peeing again and his edema is the worst its ever been.  As of Monday December 16th he is over 2 lbs (930 g) but his actual weight should be around 650 g.  Each night he can gain over 100 g which is about 20% of his body weight that's like gaining 30 lbs out of nowhere for a average 150 lb adult.  Despite the doctors best intentions nothing they have tried has worked thus far.  It seems like the doctors just keep pumping him full of diuretics and albumin to help take the fluid off but with no result.  On Thursday the doctors decided to add a low-dose dopamine drip which would help to open up the blood flow to the kidneys and it worked for one diaper.  Benton was able to produce an 11 ml diaper which was phenomenal.  We had hoped this was the start of good things to come but many of his subsequent diapers have been dry with no pee to speak of.  The doctors have also tried a new diuretic called bumex which is supposed to be stronger but that has not worked yet either.  We were told that with bumex each dose he will get a larger amount and at some point it will tip the scale and force him to pee….they just need to find his sweet spot.  Knowing this is all well and good, but until my son starts peeing again regularly I feel as if I am forever on edge.

Holding daddy's finger.

In other news, Benton has taken a few steps backward on his feedings.  As of Thursday they were up to 4ml feedings every 4 hours which was amazing.  But Benton kept having diarrhea and they felt that he was not actually absorbing the nutrients of the feeds.  Because of this the doctors decided to knock his feeds down from 4ml to 3ml every 4 hours so they could continue giving him appropriate nutrients in his IV fluid.  While this felt like a small step backward it really was no big deal in the scheme of things.  But then on Saturday the doctors called us to say they were stopping all feedings because they suspected he may have another infection or perhaps even NEC.  They suspected another infection because his tummy is that dreaded "dusky" color again. They also expressed concern that he was more lethargic than usual and his stomach girth was increasing.  But the nail in the coffin was the fact that his lab work showed that he had had a sharp drop in his platelet count.  We and the doctors were faced with a double edged sword - start treating the boy with a broad spectrum of antibiotics to help fight the infection but this could hurt his kidneys even more when they were just starting to recover.  The doctors decided to hold off on administering the antibiotics after they spoke with the specialists at the Pediatric Infectious Disease unit.  The doctors redid Benton's blood work to see if his platelets were still extremely low but his lab results no longer showed a low platelet count.  This means the results from the previous day's labs were flawed and Benton might not actually have an infection.  Later on Sunday evening as we were helping with his cares, his nurse Meghan checked to see if he has any residuals in his feeding tube and it came back with green bile.  Green bile is synonymous with NEC.  Looking at that green coloration in his feeding tube I felt utter terror.  I broke down sobbing and had to leave the NICU to recover.  It felt like we had just overcome this last infection and its after-effects were still wracking havoc on his system with the leftover edema.  I couldn't take the idea that he might have to go through this all over again.  With all of the factors currently in play the doctors have said its a waiting game.  They will continue to review his labs, check his residuals, his tummy color and girth and then decide if he needs to start the antibiotics.  We keep hoping and praying that he doesn't have an infection and that his only true issue is his kidney function and the resulting edema.

Chillin.

To add insult to injury, over the weekend Benton's oxygen requirements kept slowly increasing from 60% to 70% to 80% to 100% on Sunday.  When we arrived at the hospital Sunday afternoon he was not sating well (only in the 70s) and his oxygen concentration was at 100%.  This seemed like deja vu.  Three weeks ago to the day Benton had taken a turn for the worst and his lungs had not been saturating well despite being on 100% oxygen.  Last time they had to give him nitrous oxide to help dilate his vessels around his lungs.  This time they decided to give him a larger tube.  This would help in case the tube had a clog that was preventing oxygen flow, but in addition Benton had grown enough that his old tube was producing a leak and much of his oxygen support wasn't getting to him anyway.  The doctors re-intubated Benton with the 3.0 tube and immediately he began sating much better.  By the time we left the hospital that evening he was down to 75% oxygen and was sating well.

In the midst of all this scary news, there have been some moments where we have been able to just enjoy our little man.  On Friday, I was able to hold Benton for kangaroo care again.  This time I was allowed to hold him for over 2 hours and I actually started nodding off to sleep as he dozed in my arms.  It was the most calming feeling to have my baby sleeping in my arms and breathing against my chest while my eyes kept getting heavier and heavier.  There is something about a napping baby that makes you just so tired.  Holding him is always the highlight of my day and this extended kangaroo care was the absolute highlight of my week.  On Saturday, Joe was finally cajoled into changing Benton's diaper for the first time.  Many of the nurses had been betting they could finally convince Joe to change a diaper and that day finally occurred this past Saturday.  Joe was a champ and he didn't even flinch when Benton pooped on his hand :)

Up close and personal doing diaper duty.

Also on Saturday we met up with one of the NICU graduates who is currently a student at Georgetown.  He was born at 25 weeks back in 1994 so he is one of the ultimate success stories.  He had met us early on in our NICU experience and he had come by the NICU to give Benton a Christmas present which was unbelieveably thoughtful and so sweet.  Benton was given a cute Hoya (i.e. bulldog) stuffed animal which is the Georgetown mascot.  The bulldog was so cute and cuddly but the sentiment was even sweeter...in the card the NICU graduate explained that when he was in the NICU his mom took a picture of him next to a similar stuffed animal and it was amazing years later seeing how much bigger he was than the stuffed animal when at one point it was bigger than him.  The same could definitely be said about Benton so it will be cool to see how Benton grows in comparison to the bulldog over the years.

Benton next to his bulldog.

I wish that this blog post was full of happy news, but the reality lately has been pretty scary and it has definitely started to take an emotion toll on us as well as our extended family.