A New Bed, Hitting the Ventilator Wall & Steroid Talks -- Days 87-93

Wide Awake Cutie!

For the past week, the doctors have made a lot fewer changes to Benton's support.  Now his main focus is improving his lung function, keeping off his edema, and eating & growing.  We feel so blessed to have gotten to a calmer place with Benton where we are not constantly freaking out or having to deal with crisis after crisis.  It's such a welcome change and we couldn't have done it without all of the prayers sent his way.

Birthday card from my little cutie

 Benton has started to really hit his stride with his feeds.  Talking with the other NICU parents we realize how blessed we are that he is on continual feeds and that he hasn't had any averse reactions to the extra calories they are fortifying his milk with.  Several of the NICU parents have told us that their children had issues with reflux during the feeds and had have their child's feeding tube inserted all the way into the intestine (which is called an NJ tube) versus the NG tube (which only goes into the stomach).  That is one thing that seems to have  been in Benton's corner; even though he's had kidney, lung & heart failure, medical NEC, pulmonary hypertension and all his other conditions, he finally got a break with feeding.  Even though it's not bottle or breast feeding, it's amazing how well he's feeding and growing via the NG tube.  So much so that as of tomorrow, Monday Feb 10th, 2014, his dry weight will be roughly the same as his wet weight (today his wet weight was 1860g and they are about to estimate his true weight at 1900g tomorrow).  So that basically means he has gotten his edema off.  Yay!!!  He will still need continued support to keep the edema off due to his chronic lung disease, but it is a huge milestone to come from kidney failure and roughly 40% of his body weight being water retention to no edema.  We are super thrilled.

As Benton has gotten more stable in keeping his temperature the nurses decided he was ready to be placed in an open warmer instead of his isolette.  Basically this means he gets to be in a flat crib that is safe for ventilated babies!  Now that he is on the open warmer it is so much easier to see him and it's much easier to give him forehead kisses!  Our nurses Mary Anne and Kelsey were so cute and they made him a mobile for his new digs with his name on it :) With the new warmer, it is much easier to get mister man out of the warmer and into kangaroo care with mommy and daddy so much so that we've gotten to hold him almost every day for the past week,  Now that he's in his 36th week gestationally, he doesn't get anymore time sleeping on his belly so the only time he can be on his tummy is when he is doing kangaroo care wit on his mommy or daddy.  Boy oh boy does he love his tummy time :)

Benton's new digs - his open warmer complete with mobile!

As Benton gets older he is much more awake then he used to be. Now he'll look around and make faces (our hearts melt when he smiles!!!).   But like any new born, he is sleeping most of the time so we luck out if his eyes are open for about 5 minutes. But those five minutes truly are the best 5 minutes of our day.

Our awake mister man

 Now on to the more serious issues we are facing in the coming week.  Benton has basically hit a wall with his ventilator settings.  The doctors have tried multiple times to wean him past 31 on the pressure but every time his CO2 sky rockets and he requires a lot more oxygen.  Now that he has hit this wall we have a choice to make.  Try out a course of steroids and hope they help him come off the ventilator and onto the CPAP (which is the next step down on ventilators) or have him get a trachiostomy (i.e. a permanent ventilator in his throat which would stay for at least a year).  Since he is stable, and has no major bacteria cultures in his ET tube, the doctors are strongly considering giving him the DART protocol which basically is a specific dosing of steroids to help him get off the ventilator.  While it seems like a dream come true to have the doctors even talk to us about getting Benton off the ventilator there are always risks with steroids.  Back in the 90s, they would have given him this medication a long time ago, however, there were studies done since then that said the high dosages of Dexamethasone could inhibit the growth of the cerebellum and several types of cognitive defects could result from that.  Since they, they have come up with the DART protocol which reduces the dosages from the 90s and mitigates some (how much is yet to be determined) of the risks but still has the benefits as well. We are cautiously optimistic about the steroids and will be speaking with the doctors tomorrow regarding next steps.  If the steroids work then in under a week Benton could be extubated permanently!!! We just need to hope and pray that the steroids work their magic and he can get extubated and that he doesn't have a relapse after the steroids are weened. We are scared but excited at the same time.  This would be a huge step in helping Benton come home.

Please keep Benton in your thoughts and prayers and send your love and healing energy to help him get off the ventilator this week.  We truly believe that the collective power of everyone's prayers has worked miracles and we would be so appreciative if you can keep praying for our little guy. 

Birthday family portrait

New birthday signs for 3 month birthday and 13 week-a-versary!