Hanging Out: Days 169-175

Getting too big for my googly-eyed hat!  Thanks Sarah, Cora and Lila!

This past week has been less eventful than I thought it would be.  While we had been mentally preparing ourselves for Benton's upcoming hernia surgery and expected reintubation, his surgery has been delayed.  In some ways it has been a relief to just get to enjoy our little man and continue watching his forward progress, but in other ways it feels like we are pushing back our going home date further and further away.  It's like we can see the end in sight, yet every time we take a step forward the finish line creeps tantalizingly out of reach.

Scooting around in his crib!

Over the weekend, we started to get the sense that Benton's surgery could be delayed when the doctors mentioned that they wanted to be sure that he could take all of his bottles before heading to surgery.  Benton had only been feeding by mouth for just 5 days at this point so hitting full feeds orally definitely seemed like a stretch.  At first we didn't understand why they would want to wait, Benton loved eating and had taken 45 ml at every feeding over the weekend.  But the doctors explained that they didn't want to rush into hernia surgery when there was still a possibility that he might need a g-tube.  A g-tube is a feeding tube inserted into the stomach which allows the feeds to be directly inserted into the stomach rather than be taken by mouth.

Hearing the doctor's reasoning was pretty upsetting.  At this point, all we had seen was amazing progress by our little fighter on the feeding front and we had no reason to think that he would tire out or need any help feeding.  However, the doctors explained that the hernia surgery could be put off until we were all sure that Benton could take every feed by mouth (all 55ml every 3 hours).  We agreed to giving Benton more time to master his feeds as well as come down on his high flow settings -- so the surgery was off.  While in theory I knew it was smart to give Benton more time, it was also disheartening because this meant that the doctors weren't convinced that Benton wouldn't need a g-tube.

Hanging with my cutie

Since the decision to postpone the surgery, the doctors have allowed Benton to start trying to eat his full feed by bottle (all 55ml) and to have him woken up to feed every 3 hours.  Previously, if Benton was sleeping during a feeding time the nurses would let him sleep and just feed him through his feeding tube.  Well, this change has apparently tuckered out our little man.  Since trying the 55 ml every 3 hours he has been incredibly sleepy and has only finished a full bottle a handful of times.  During some feeds he will take all 55ml while at others he will take 15ml...it all depends on how awake he is.  On average he is finishing about 30-40ml per feed.  We are hoping that as time goes on he can increase his stamina and start finishing back to back bottles.  Until then it is a waiting game.

Michigan themed 24 Week Birthday sign

Since last week, the doctors have also turned down Benton's High Flow to 2 liters.  Each time Benton has his ventilator settings changed (Ventilator, CPAP or High Flow) he always needs a bit more oxygen at first and then recovers at his new settings.  However, over the weekend Benton had a few nurses who didn't know Benton's quirks and they felt that his increased oxygen need signaled that he needed to be bumped back up to 3 liters.  So his settings have been vacillating between High Flow of 2 liters and 3 liters depending on the nurse and his oxygen requirement at any given moment.  Getting down to 2 liters is definitely an improvement as it is one step closer to Low Flow oxygen (1 liter) which he can go home on!

As you can see this past week we have had some progress and some setbacks.  Benton will get down to 2 liters of High Flow and then require 3 liters at some points; he will take two back-to-back 55 ml bottles and then take 10 ml the next feeding.  Each bit of forward progress is one step closer to home, yet each time he doesn't finish a bottle or requires 3 liters of High Flow its one more day in the NICU.  We are hoping that Benton will not require the g-tube surgery, but only time will tell if he can get his stamina up to finish all of his bottles and fully feed by mouth.  Until then, we are just spending as much time as we can with our little fighter and enjoying every second.

Football hold to help with colic

Please continue to send prayers to our little guy so he can finally come home!  He needs to come down to Low Flow oxygen (1 liter), take all of his feeds by mouth and successfully recover from hernia surgery.  All of your thoughts and prayers are so appreciated and we can't wait till he finally comes home. 

Awkward sleeping pose