Hopefully Staying the Course, Days 31-33

Wide awake and feisty little man!

The past few days since Benton's one-month birthday have been an effort of staying the course.  Over the weekend Benton had started peeing again and we were ecstatic.  It was such a great one-month birthday present for him and his parents that he was peeing again. By Monday, however, Benton's peeing had started to taper off again and the doctors were concerned.  The doctors examined his labs and it looked like this time the cause for the diminished peeing was due to heightened calcium levels and a lack of albumin in his blood.  The calcium was causing him to create more kidney stones and the lower albumin levels meant he couldn't pull the liquid into his blood stream that was causing his edema.  The doctors explained that this was not acute renal failure like last week, but rather his kidneys were trying to heal and were "rubber-banding" back and forth between peeing and needing more time to heal.  This definitely seems to be the case because over the past three days he has gone from peeing very little to peeing a lot with many variations in between.  Hopefully he can stay the course and just continue peeing so he can get rid of his edema.

In addition, his heightened edema has continued to plague him and cause various problems to his organs.  At first it seemed that the edema was mainly creating problems for the lungs since the extra pressure of the liquid on his lungs required more pressure on his ventilator.  We want the pressure on his ventilator to be going down, so every time they need to increase the pressure its one step further for him to get off the ventilator and down to the CPAP, which is when Benton will no longer be intubated.  On Monday, the doctors heard a heart murmur while they were examining him and they ordered an echo.  After reading the results the doctor told us that that his PDA (a duct in his heart) had re-opened due to the pressure of all these extra liquids being in his body. The doctors indicated that the duct may close after his edema has gone down, but if the PDA doesn't re-close Benton may need heart surgery in the future.  Many of Benton's NICU neighbors have either had the PDA surgery or are in line to have the surgery soon so if and when we get to that point we should have a lot of other families to talk with and hear their experiences.

All cozy in his snuggle-up.

On Tuesday we had another family meeting with the attending doctors and the social worker.  We were scared to have a family meeting especially after we were blindsided with lots of bad news at the last one, but the family meeting is supposed to be a way to hear about Benton at a holistic level and understand how each of his systems are working.  At yesterday's family meeting we were given the breakdown on all of Benton's systems and everything we heard we were aware of before.  The doctors remain concerned about his kidneys, his lungs and how he will tolerate his feedings.  They also gave us what their hopeful goals are for the next 2 weeks.  Dr. Scalia hopes that Benton will continue to tolerate his feeds and get up to full feeds so they can take out his PICC line which provides his IV fluids.  The doctor also hopes that he continues peeing, sheds his edema and that this helps his lungs need less ventilator pressure.  Hearing a hopeful picture of Benton's future gave us strength and allows us to focus our prayers on his next steps.

Today was a pretty good day.  Not only was Benton peeing again with the help of the lasix, but his stomach girth went down which hopefully means his edema is starting to recede.  While Benton had been doing well on his feedings he has had some fits and starts since they increased his feedings from 2ml to 3ml every 4 hours.  At 8am he had not digested his feeding so they re-gave him the milk and by noon all was well and so he was able to feed again, but then it happened again at 4pm.  Hopefully he continues being able to maintain his feedings because that is the only way he can grow.  Overnight his nurses had weighed him at 880 grams but this is an overestimate due to his edema.  Even though he is still so tiny we want him to lose weight so that he can get rid of his edema.  Its weird to think that Benton needs to lose weight in order to be healthy but we need that weight to not be artificially high from retaining water. 

Holding Benton's feeding tube.

Today was also another opportunity for me to do kangaroo care with Benton again.  Every time I get to hold him is the best day in the world and today was no exception.  Looking at his peaceful face while he lies on my chest makes me feel whole.  My mom and my mother-in law had brought a mirror with them that day and they both took turns holding it up so I could view Benton's handsome face while he nuzzled my chest.  The whole time he was lying on me Benton was high-sating and his title volumes (i.e. the amount of volume he was taking into his lungs) were at all time highs.  It's nice to know that he enjoys his kangaroo time as much as his mommy.  :)

Thank you to everyone who is following this blog and sending us encouraging notes and comments.  Every comment, note, card and email we receive touches our hearts and gives us strength.  So thank you for all of your support.  Please continue sending your thoughts and prayers to our little fighter.  He needs your prayers to help him keep peeing, get rid of his edema and succeed in tolerating his feedings.