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!

The Scary Call: Days 96-97

Little cutie

 The past few days have definitely had their ups and downs just like a microcosm of the NICU rollercoaster but compacted into hours instead of weeks.  On Wednesday - the first full day on the steroids - Benton was definitely showing signs that the steroids were working.  Yay!  His oxygen requirements were definitely better vascillating between 40% and 60% oxygen.  If you remember Benton hadn't averaged 50% oxygen in months so this definitely was an improvement. 

Today we awoke to good news - Benton's oxygen levels had decreased overnight to 41% and his most recent blood gas showed improvement so they had lowered his pressure to 30.  Unfortunately the IV in his head had gone bad and they had to pull the IV and give him his meds orally.  We were afraid that giving the steroids orally vs. intravenously would be less effective so we left a message to speak to the doctors with our day nurse.  Less than 20 minutes later Dr. Ramasethu (the attending doctor) called.  I, being delusional, believed she was calling to discuss our concerns about Benton's medication but instead she told us that Benton had a severe incident.

As the doctor explained, Benton had all of a sudden started to de-sat down to the 40s despite turning up his oxygen to 100%.  As the nurses tried to suction his tube the respiratory therapist noticed that his chest wall was not rising.  This was an indication that his ventilator support was not actually getting to Benton.  As the nurses tried to suction his ET tube to no avail the doctors had to extubate Benton and re-intubate him with a new tube multiple times.  During this ordeal Benton's heart rate slowed and the doctors had to resuscitate him using chest compressions and epinephrine.  As the doctors later explained to us this scary incident was a result of mechanical failure in his ventilator.  His ET tube had gotten a massive mucus plug and this had blocked his airway from being ventilated properly.  Needless to say getting this phone call this morning was terrifying.  Listening as the doctors explained what had occurred I felt numb as a deep dark pit formed in my belly.  All of this news just felt like I had been sucker-punched.  Benton had been doing so well recently that I had finally started to let my guard down and yet here we were again riding the lows of the NICU roller coaster.

Resting after his morning ordeal

Obviously once you hear that your son has just had to be resuscitated you want to rush to be by his side.  Unfortunately the day that this occurred also happened to be one of the biggest snow storms to hit DC in 4 years.  We had to wait for the snow to subside a bit and then we set out for the hospital despite the dangerous road conditions.  Despite being assured by the doctors that Benton had bounced back from his episode we still felt that we needed to be there with him to help in his recovery.  By the time we reached the hospital Benton was back to requiring only 40% oxygen and while we were reading to him he actually hit his lowest oxygen requirement in months 29% oxygen!  It is amazing that our little one can bounce back so quickly after something so terrifying. 

Lowest oxygen settings we have seen!

Because of his incident the doctors suspended his feeds for a few hours to let his belly rest in case there was an increased amount of acid in his bloodstream after his heart stopped.  However, by three o'clock he was allowed to start his feeds again albeit slowly.  To check on his oxygenation after the incident the nurses took a blood gas and it actually came back better than the one that morning so the doctors were able to wean his pressures again to 29.  As we sat next to Benton we were just amazed that despite such a scary morning he was rocking it out on his settings just hours later.  It seems that the steroid treatment is working and now we just need to pray that he sees enough sustained improvement that he can come off the ventilator for good.

Our little fighter!!!

Please keep Benton in your thoughts and prayers.  We are praying for our little fighter to have improved lung function so he can come off the ventilator and for him to stay healthy and safe with no more drama. 

Bath Time: Day 95

Cutie patootie

Tuesday was a new milestone in Benton's life...his first bath from Mommy.  It was such a fun experience to participate in such a normal activity in his life.  The nurse helped me to set up his bath which is more like a sponge bath than getting fully submerged in water.  We set up an absorbent cloth under Benton and then got wash clothes, warm water and some lavender scented lotion then we took off Benton's leads and his pulse oximeter.  It's both scary and wonderful to see Benton without his monitoring leads and wires...scary because it can be hard to tell how he is oxygenating but awesome because he looks so normal without all the wires!  Using the wash clothes we sponged him down and boy did Benton get into the bath.  He was super interactive during bath time and it was such a fun first!

Getting settled after bath time with mommy!

During his bath we avoided his head because he had had an IV placed there earlier in the day to administer his steroid treatment which will hopefully get him off the ventilator.  Walking in to the NICU and seeing an IV sticking out your son's head is jarring to say the very least, but in addition to the IV Benton also was wearing a bandage over his eyes due to his latest eye exam.   Seeing so many bandages on my beautiful baby truly upset me and my emotions go the best of me choking me up and making the tears well in my eyes.  Luckily, the results of the eye exam were positive and the opthomologist said that his eyes looked terrific with his ROP continuing to regress. 

Benton with his bandages and IV placed in his head

Now that Benton has officially started the DART protocol (i.e. the steroid treatment) we are hoping to see improvement in his ventilator settings and in his oxygen requirements.  On this first day Benton's oxygen requirement dropped from 80% to 60% and this was a result of both an additional dose of lasix (diuretic) and the steroids.  This small improvement gives us hope and we have to just keep praying for his lungs to improve so he can get off the ventilator in the coming weeks.  Please send you thoughts and prayers to our little fighter!!!

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!

Happy Three Month Birthday Benton!!!

Our little man is officially three months old!  It's amazing how time flies in the NICU.  One second you're in the hospital scared out of your wits that your baby is about to be born 4 months early and then in the blink of an eye your little baby is not so little anymore.  Over the past three months Benton has grown from 1lb 0.5oz to over 4 lbs.  It's crazy that he has more than quadrupled in size and he's just getting started.  Benton was born with his eyes still fused shut and now he explores the world opening his eyes and looking around the NICU and at his adoring mommy and daddy.  I can't wait to see what the next months and years have in store for us.

The PICC Line is Out!!!! Day 84-86

My very first outfit!!!

After the momentary blip in the road on Thursday, this weekend was unbelievably great with our amazing little man.  On Friday, I arrived at the hospital and got the wonderful surprise that our nurse, Mary Anne, had dressed Benton in his very first outfit!  Benton looked unbelievably cute in his outfit which was white with little elephants.  Seeing him in clothes made Benton look like a regular baby despite being in his incubator rather than a crib.  It truly made my heart soar seeing him in such normal attire...it felt like taking him home could honestly be around the corner.

Incubator sans IV line!

On Saturday when we arrived at the hospital the doctors had removed Benton's PICC line and he was on full feeds.  It was so wonderful to see him without an IV hanger for medications stationed next to his bed and it truly opened up the space around his incubator.  In addition, when I changed his diaper Benton no longer had a line inserted into his foot which made diaper changes so much easier.  We could not be happier that his PICC line is out.  It's yet another step forward and one step closer to him coming home. :)

 With Benton's PICC line out we were able to hold Benton a lot over the weekend with both Joe and I taking turns.  This weekend we held him swaddled in our arms and were able to look at him while he interacted with us.  Watching Joe hold our son was such a sweet, tender and emotional moment.  The two boys would look at each other and Joe had the biggest smile ever on his face. 



Now that Benton is on full feeds of 10ml/hour and his PICC line is out the doctors felt that Benton was stable enough to graduate to the next aisle in the NICU.  While he is not yet ready for the step down unit for "feeders and growers" he is stable enough to no longer be in the critical first bay of the NICU.  So when we walked in to the NICU this morning Benton had been moved to a new spot.  I was happy to know that the doctors felt that he was stable enough to graduate to the next bay but it was kind of sad to say goodbye to our old spot.  We had been in the same spot for almost three months and it's weird how an area that at one point was so foreign now feels like home.  But change is good and we couldn't be more thrilled with Benton's progress. 

Our little cutie!

Please continue to pray for Benton's lungs to continue getting stronger with each passing day.  With him now on full feeds his next big challenge will be getting off the ventilator.  Benton still needs to reduce his ventilator pressures and reduce his oxygen requirement which will be a long road, but we will be by his side every day encouraging him on his road to recovery.