Happy 5 Months Benton! Day 143-Day 151

Looking around with Grandma

I can't believe that Benton is already 5 months old!  It's unreal how it feels like time passes both excruciatingly slowly and in the blink of an eye.  The days in the NICU just keep piling up and we are already past 150 days, yet it seems like just yesterday Benton was like a tiny bird and able to be held in one hand.  Our amazing fighter is now 6 lbs 5 oz. and is over 18 1/2 inches long.  His cheeks are super chubby and rosy and his legs have little dimples :)


Benton has now been extubated for 18 days!  Since our last update, Benton has been able to wean off the nitric oxide with the help of sildenafil (i.e. VIAGRA).  Sildenafil helps to improve pulmonary artery function by reducing the resistence that Benton's blood vessels encounter in his lungs.  While viagra is normally thought to help older gentlemen get boners, our little 5 month old is on a twice daily dose of the stuff to help his pulmonary hypertension.  The viagra certainly has worked wonders and has allowed Benton to wean off the nitric and already his pulmonary pressures on his echocardiogram look improved.  In addition, Benton is slowly weaning off his morphine and is completely off the versad, these medications had been used to calm him down when he was on the jet ventilator a few weeks ago.  Finally, this Wednesday should be the last day of his steroid treatment and that will be the telltale sign of how well he truly is doing on the CPAP once the steroids are officially gone.  Over the past few weeks they have been weaning the steroids ever so slowly - going from twice a day to once a day to now every other day.

Benton checking himself out in his mirror!

With all these changes we have been anxiously watching Benton's blood gases, oxygen requirement and how fast he has been breathing.  His oxygen requirement has been anywhere from 29%-45% and his breathing has been mainly between 60-70 breaths per minute with moments both higher and lower.  Benton's blood gases (his CO2 levels) have been good enough to switch him to blood gases only on Mondays and Thursdays which is the least frequent he has ever had them while in the NICU.  We are hoping that he keeps up the good work and he can move down from a CPAP of 7 to a CPAP of 6.  This will be one step closer to getting to the high-flow nasal cannula.

Hanging out with his crab mittens from his nurse Mary Anne and his new Giraffe sound machine :)

Over the past week I have tried to become even more involved with Benton's care.  I am now participating in his physical therapy and speech therapy sessions.  Meeting with physical therapy is interesting as we learn how to help Benton meet his developmental milestones.  Today we worked on strengthening his neck muscles and doing bicycle kicks with his legs.  It might seem early to meet with a speech therapist, but what you may not know is that speech therapists work with babies on learning how to suck and swallow to help them take bottles.  We have been working on slowly getting Benton used to swallowing while breathing by dipping his pacifier in milk and having him suck the milk off his pacifier.  In addition, the speech therapist will insert a small amount of milk into his mouth via syringe and have him swallow that while sucking on his pacifier.  These are huge strides for our little boy and I am excited to assist in helping him grow and develop on a daily basis.

Our big beautiful boy.  Such a fighter!

This past week Joe's parents have been in town to see how big Benton has gotten and to help set up his nursery.  Joe's dad has been hard at work helping us repaint the nursery and rearrange the room.  With such awesome grandparents in town we had both of Joe's parents hold Benton this past weekend.  It was so great to see three generations together and Joe couldn't have been more thrilled to see his parents with Benton.


We are truly blessed to be able to watch our lovely boy grow and experience his surroundings.  With each passing day he interacts with us more and more and makes the cutest, most expressive faces.  In these coming days and weeks we are praying for Benton's lungs to grow stronger, for him to be able to graduate from the CPAP down to the high-flow nasal cannula and for him to be able to start feeding by mouth.  We hope and pray that he continues to improve each and every day and that he can come home soon.  Please keep Benton in your thoughts and prayers so that we can finally bring our sweet beautiful boy home.

Benton outfitted by Auntie Elyse :)

Sleeping cutie

21st Week Birthday Sign!