Another Dip In the Road, Day 25 & 26

Our cutie lying on his tummy in his snuggle-up.

After such a wonderful high point holding my baby for the first time we had yet another dip in the road.  While I knew it was inevitable that there would be further dips before we brought our baby home, I had thought we might have a longer period of calm before the next storm.  But that's the NICU experience...you can't guess what each day will bring you.

Yesterday we woke up full of excitement thinking that Benton was having yet another good day; however, when I called the NICU for our morning update we found out that Benton's edema was getting worse and he still hadn't peed very much and the small amount of pee that he did have had been blood tinged.  The doctors had already been planning to do a head ultrasound to check on his brain and a intestinal ultrasound to check on his intestines and see if his infection had spread.  With the new development of the blood tinged urine the doctors decided to add in another ultrasound for his kidneys.  So yesterday was filled with tests for Benton and us pensively waiting for the results. 

After waiting for the results we sat down for a long chat with the doctor.  Doctor Scalia let us know that the ultrasound of the kidneys had shown calcification in the kidneys (i.e. kidney stones) and this explained the blood-tinged urine.  While it was good to know there was a reason for the blood and that the kidney stones would get gradually reabsorped over time, it is still disconcerting to hear that your premature baby has what I would consider an "old man disease".  Furthermore, the kidney stones don't explain the lack of pee which has been plaguing Benton the past few days.  The doctors wanted to test a sample of Benton's urine, but without much in his diapers that was a tough proposition.  During his evening "cares" I was changing his diaper and noticed that while the diaper itself was dry there was a small amount of pee on his penis.  So there I was with the nurse siphoning pee off my son's penis so the doctors could test it.  It was quite the sight and definitely not something that I ever thought I would do!

The other test results came back with pretty good news.  His intestinal ultrasound showed no perforations in his bowel and no dead areas of his intestines which are common side effects of NEC.  The ultrasound did show that there was a thickening of his intestinal walls which is indicative that Benton did indeed have NEC but was able to stop it from destroying his intestines with the help of the antibiotics.  The doctor's said this was really good news because he wouldn't need surgery and they might start giving him milk as early as Friday.  The head ultrasound results also came back with good news.  The ultrasound showed that the Level 1 bleed had been reabsorbed and the hematoma (formerly thought to be a PVL) had shrunk in size.  These test results were reassuring to hear yet at the same time it's always hard to hear the doctors formally conclude that your son did have a potentially fatal infection.  At least it's heartwarming to know that Benton seems to have fought the good fight against this infection.

Our little man fighting off his edema!

Today started like any other day.  We called to find out how Benton had fared over night and we were told that he still hadn't peed and now it had been over 12 hours since he had urinated and due to the lack of pee his edema was getting worse.  With his worsened edema his lung function has decreased and the pressure on his ventilator slowly creeped up from 24 to 26 to 28 to 30 over the course of the day.  The doctors made some changes to his treatment plan and gave him a double dose of lasix (a hard core dieuretic) and more albumin to help his capillaries suck in some of his edema.  We knew it was a problem that he wasn't peeing, yet it seemed to pale in comparison to everything we had been through thus far.  However, as the day wore on it became more and more apparent that his kidneys were not functioning and this would be yet another hurdle in our journey.

Around 6pm we got the dreaded phone call from the NICU.  The attending doctor was calling to let us know that Benton had coughed up his ET tube (which is connected to his ventilator) and his heart rate had plummeted as he had stopped breathing.  The doctors had to perform CPR and resuscitate our little man and it seems like his heart had stopped before they were able to bring him back.  Hearing this news was like someone had punched me in the stomach and knocked all the wind out of me.  It was terrifying to know that while I wasn't there my son could have died.  That feeling was one of pure terror and I felt numb as if I was just making the motions of listening to the doctor instead of actually reacting. 

After hearing this news the doctor went on to explain how she viewed Benton's situation.  She said that while the extubation event (coughing up his ET tube) had been very exciting, Benton had recovered well and was giving the doctor a look that said "Why are you looking at me?  I'm fine!".  After he had been reintubated the doctors took x-rays to ensure that the tube was in the right place and they saw that one of his lungs had suffered a small collapse.  So they increased his pressure on his ventilator to help him as he recovered. 

They also discussed their new plan for his kidneys.  Since he had not peed for over 12 hours they officially diagnosed his condition as renal failure.  This of course made us tremendously upset as it seems like our little man just can't catch a break.  The doctors explained that they believe that the antibiotics he was on for NEC actually ended up hurting his kidney function; however, those same antibiotics saved him from a deadly outcome from NEC.  Since the antibiotics had been in his system for over 10 days they were able to stop the antibiotics without it hurting his chances of beating NEC.  By stopping the antibiotics the doctors hope that his kidneys will fix themselves and he will start peeing again.  Once he is peeing again it should reduce his edema and help him breathe easier.  They told us that we should hopefully see improvement in his kidneys in a few days so please send your prayers and love to help heal Benton's kidneys.

After hearing all this news we were overwhelmed, but knew we wanted to spend time that evening with our little miracle man.  Joe and I both held him within his isolette since he is now too sick for kangaroo care and we read him stories and sang him christmas carols.  Benton is such a little fighter and we know that with God's miracles and love Benton will beat this new challenge and heal his kidneys.

Please send your thoughts, love and healing prayers to Benton to help heal his kidneys and get rid of his edema.

Our beautiful boy being held by his daddy!

The bond between father and son.