Extubation Station and then a Derailment: Days 98-107

Little cutie

This past week has definitely been that darned NICU rollercoaster with its highs and lows.  After Benton's episode where he needed to be resucitated he really took to the steroid treatment and showed tremendous progress with his ventilator pressures dropping from 31 all the way down to 20 and his oxygen requirement being between 30-40%.  This was amazing news and true proof that the steroids were working their magic. 

Little man in his cute hat from Auntie Elyse!

 After 6 days on the steroids the doctors decided to extubate Benton to CPAP (a step-down ventilator administered through a nasal cannula) on Monday of Presidents Day weekend.  We could not have been more excited.  This was such an enormous milestone - not only could we finally see more of Benton's face but we could see him breathe on his own for the very first time with just a small amount of oxygen assistance!!  The doctors cautioned us that they didn't think Benton would survive on the CPAP for more then a few minutes, but they wanted to see how he would do.  As we were sitting around Benton's bedside giving him a pep-talk about how this was his big day and how important it was for him to start breathing on his own, a swarm of doctors surrounded his bedside and we knew it was time for them to start the extubation procedure.

First moments of extubation!  Looking a little shocked.

We waited on pins and needles in the waiting room but in less than 5 minutes a doctor came out to say he was on CPAP and we could come in to see Benton.  I feel like I almost ran to his bedside in anticipation.  Benton looked quite startled with his new found responsibility of breathing and was breathing quite hard but was succeeding.  The nurses took a blood gas to see how his oxygenation and CO2 levels were doing and the first one they took was not good.  His CO2 was high in the 80s (they normally want kids with chronic lung disease to have CO2 no higher than the 60s).  However, the doctors said they would give him a chance to settle down and see how he did in another couple hours.  The next blood gas was better in the 70s and progressively over the next few hours his gases got better and better until they were around what he had been before he was extubated!

Settling in post extubation for a quick nap.

Sign we made to celebrate getting to Extubation Station!

Seeing Benton extubated was literally one of the happiest moments of my entire life.  It was amazing to see his face and watch him cry.  He could finally make some gurgling sounds that you could tell would soon develop into full fledged wails and tantrums....we couldn't have been more excited to hear a baby cry.  With Benton being on the CPAP we could also be more hands-on with him, picking him up ourselves, turning him over for tummy time and holding him in different positions.  It is such a great feeling to hold you baby in a normal position rather than have to sit still (without moving) for hours so that you don't accidentally knock out your baby's breathing tube. 

Holding my little fighter

Once Benton was extubated we spent the next few days with him cheering him on and making sure he was comfortable.  We truly wanted to see him succeed despite the odds.  Despite his rapid breathing, as the days passed the doctors seemed more and more hopeful that his extubation would stick.  One doctor even said that if a baby makes it past about 72 hours they almost always succeed.  It was wonderful watching Benton defy expectations....you know you have a miracle boy when the seasoned neonatal nurse practioner breaks down into tears over the fact that your son was extubated for even a few hours let along days. 

Sleeping soundly with his nasal cannula

Testing out his lungs

However, despite Benton's strong will on Day 4 of his extubation (84 hours in) his lungs started collapsing due to the lack of ventilator pressure.  He was trying so hard to breathe that he was retracting and each of his tiny breaths would make his whole stomach suck in and his ribs stick out.  Eventually he was breathing over 100 breaths/minute consistently.  The doctors did a blood gas and his CO2 levels were over 100!  Terrible news.  The doctors called and said they needed to reintubate him immediately so that both of his lungs didn't fully collapse which would cause us to be back at square one.  We, of course, agreed to his reintubation but not without heavy hearts.

Having seen Benton without the ventilator for 84 hours made it so much harder to see him with the ventilator when we arrived that morning.  I couldn't help myself and just broke down into tears.  Even though his condition was not fatal that morning, it wasn't any less disheartening.  We had so wanted Benton to succeed and while we couldn't have been more proud of his attempt, it was still a setback.

As soon as we heard he was reintubated my thoughts jumped to what are our next steps forward?  Now that he had failed his extubation - would the doctors say he needed a tracheostomy or would he get to try and be extubated a second time?  Luckily the doctors were so impressed with Benton's willingness to defy everyone's expectations that the doctors have agreed to let Benton grow to 2.5 kilograms (approx. 5.5 pounds) and then try to be extubated again! Now we just need Benton to grow big and strong so that he can try breathing on his own again :)

Reintubated and checking us out.

Please send your prayers for his lungs to strengthen and grow and for Benton to continue defying the odds and be extubated for good next time! 

Wearing a gift from another preemie mom and blog follower.  Thanks Kaycee!