Loving Extubation Life: Day 134- 143

Happy on the CPAP!

This past week since Benton has been extubated has been one of our happiest times in the NICU.  Seeing Benton thrive and interact with us has been the ultimate blessing and we honestly couldn't be happier to see him off the ventilator.  It has now been 10 whole days that he has been successfully extubated and we pray each day and night that he remains extubated and will never be intubated again!

Holding my little love.

During one of the first days of his extubation there was a new micro-preemie admitted near Benton's bed and it was incredibly loud and scary to watch.  Apparently, Benton agreed, because during this admission he started requiring over 60% oxygen.  To make matters worse he also had to get his eyes examined and that procedure coupled with his already heightened agitation skyrocketed his oxygen requirement to 80%.  As this was only one of the first days he had been off the ventilator, I had been hoping he would have a relatively peaceful day, but the NICU had other plans.  After all the commotion I spoke with his nurse and we were able to move Benton to the back bay again.  Now he has a window view where he can finally get a little sunshine as well as have a quieter location.

Trying to relax post-eye exam.

With Benton in his new digs he really started to shine and get stronger with each passing day.  His blood gases were stable with his CO2 levels in the 50s which is great for a baby with chronic lung disease.  The gases have been so stable that the doctors are no longer ordering them twice daily but every other day.  As the days have passed Benton has gotten weaned on the nitric oxide from 6 to 2 and his pain medication has been weaned as well.  He even got his PICC line removed again so he is free of most of his lines!!! :)

Awake and Alert Cutie in an Outfit from Auntie Elyse!!

In other big news Benton has been stable enough on the CPAP to get his own big boy crib!  Instead of an open warmer (which is used for intubated babies) he now has his own official crib and we are going to buy him a mobile soon.  Since Benton is doing so well he also gets to take rides in a mommaroo (i.e. a swing) which he loves and gets to check out all the nurses and look around the NICU.  Seeing him so alert and engaged is truly a wondrous thing and makes my heart fill with joy.  Finally, yesterday Benton got to try milk by mouth yesterday for the very first time!  Normally, babies are not allowed to feed by mouth on the CPAP, but the doctors want to make sure Benton doesn't lose his oral interest so they have decided to allow Benton to take 5 ml of milk by mouth once a day so he can be better prepared to bottle feed in the future.  This is a huge step forward and we were happy to hear that Benton did great with this new challenge and only de-satted to 85 while sucking down his milk.  Hopefully Benton can graduate from the CPAP to a high-flow cannula soon so he can get into bottle feeding in force!

New Crib!!

Hanging in the mommaroo!

As you know a few weeks ago we had quite the scary ordeal with Benton, so my mom had stayed in town to support us as we prepared for Benton to face tracheostomy surgery.  Well her patience and support finally paid off --- she got to hold Benton while he was on the CPAP!  Seeing grandma and grandson together was truly touching and warmed my heart.  My mom is a fantastic grandma and you could see Benton was truly comfortable in her arms.  So much so, that Benton attempted to nurse from his grammy!!!  As my mom was holding him he face planted into my mom's clothing-covered breast and started sucking away at her shirt.  Since being off the ventilator Benton had started sucking vigorously on his pacifier as well as face planting on my clavicle during kangaroo care, but this took the cake.  I guess Benton feels he is ready to nurse even if he focused his attention on the wrong mommy.
 
This past week we feel so blessed with all the progress Benton has made.  We know his progress is a direct result of God's grace and the prayers and love you have sent his way.  We continue to pray for Benton's continued progress and for him to be able to remain successfully extubated and move down from the CPAP to the high flow nasal cannula so he can finally come home!

Happy 20 Week Birthday Sign from Benton's Cousin!

Hanging With My Beautiful Boy

Newest Member of Extubation Nation: Day 133

Relaxing prior to his extubation

Friday morning I called the hospital as I always do after rounds and they told us that the doctors planned to extubate him that very afternoon!  We could not have been more excited and rushed to the hospital.

Just like last time we sat next to Benton in the hour before the planned extubation and gave him a pep talk about how great he was going to do on the CPAP and how if he was able to pull this off he wouldn't need surgery.  Then the moment came when all the doctors surrounded his bed and it was time for the tube to be pulled.  Unlike last time I stayed in the room and watched it happen.  The respiratory therapist fit his nasal cannula to his face, suctioned him one last time, upped his oxygen to help in the transition and then pulled the tube.  It was shocking how quick everyrthing happened and the fact that his stats barely dropped at all!

Enjoying his pacifier now that there is no tube!

Seeing him without his tube and his face clear of the neobar and all that tape was exhilarating!  We sat with him all afternoon cheering him on and helping to calm him down when he had gassy or colicky moments.  Now that he has the tube out he is loving his pacifier and was seriously chomping on it all day long.  After the extubation the nurses had to restart his feeds so they put a feeding tube down his throat and he promptly pulled it out.  That happened again just minutes later as well.  The nurses have advised us that we need to keep his hands in mittens or socks so he doesn't pull the feeding tube out which could cause him to aspirate on his milk and lead to pneumonia...so mittens and socks it is!

Daddy and son

We couldn't be more thrilled with our little fighter's amazing progress.  Since his extubation his blood gases have been good with CO2 in the high 50s to low 60s which is normal for a kid with chronic lung disease.  In addition, his breathing rate is better than last time with him breathing anywhere from 50-70 breaths per minute unlike his 100+ breaths per minute last time he was extubated.  We are so hopeful that this extubation sticks and he doesn't have to be reintubated in the coming days.

Please send your love and prayers that he remains extubated and on CPAP and doesn't need to have surgery in the coming weeks.

Relaxing post-extubation

Happy 19 Weeks Benton!  A Spring-themed sign in honor of your rebirth as a baby without a ventilator!

Possible Extubation and Upward Progress: Day 130-131

I have said it before and I will say it again, the power of positive thoughts and prayers is amazing.  Everyone's prayers, positive vibes and love being sent to Benton have worked wonders.  Since Monday, Benton has made large strides forward bringing his ventilator pressures down from 21 to 18, his nitric oxide down from 14 to 3 and getting back to full feeds.  His ventilator pressures are back to levels that are as good, if not better, as the last time he was extubated.

Benton with his 18 Week St. Patty's Birthday Sign

Due to all this good news and the fact that "Benton is behaving", as the nurses say, the doctors have changed their minds and are getting ready to extubate Benton for the second time.  It's crazy how quickly things can change in the NICU.  Monday evening, we were having a conversation with the doctors and they were telling us he wasn't ready to be extubated and we should prepare for a tracheostomy surgery in the next two days and then the very following day the doctors have done a 180 and they are saying they want to extubate him!  This at the same time we are meeting with the ENT surgeon for a consult.  Gosh what a turnaround - it's fast enough to make your head spin.  

The new plan is for Benton to get extubated in the next couple days and we have to hope and pray that this time it sticks!!!!!  If all goes well - and we are praying it will - then Benton will narrowly miss surgery and be able to start breathing on his own with the CPAP nasal cannula.  We are hoping and praying every second of the day for a positive outcome, but we do know in the back of our heads that if he fails extubation we will be faced with surgery in the next couple weeks.  Please send tons and tons of positive extubation thoughts Benton's way so he can succeed in his second extubation!  This is the moment we have been praying and wishing for for months and if you can send positive thoughts and prayers his way we are sure it will work!

St. Patrick's Day Love from the Nurses

Lucky Ireland T-Shirt and Green Booties for St. Patty's Day.  Irish Pride!

Another long drop in the NICU rollercoaster: Day 119-129

I want to start this post by saying thank you to everyone that sent their loving thoughts and prayers to our beautiful son over the past few days.  Benton gave us quite the scare this past week and we continue to hope and pray that he continues to get better with each passing minute.

 Last week, once Benton got diagnosed with pneumonia his oxygen requirement skyrocketed and he started to need a lot more ventilator pressures.  All the strides that Benton had made since his steroid treatment were lost and in fact we were losing ground to his infection.  Within a few days Benton was back to requiring 100% oxygen again and his ventilator pressures creeped up from 24 to 28 to 30 to 32 to 35.  Each day we would call the hospital and get less and less good news...first he was needing 80% oxygen then 100% oxygen (but still satting well) then 100% oxygen but not satting well. It all came to a terrifying pinnacle on Wednesday March 12th.  I had just dropped off my Dad and sister at the airport and was headed back to the house to work when I heard from the hospital that he still wasn't satting well despite 100% oxygen and ventilator pressures of 35.  I could hear the nervousness in the nurses voice so we dropped everything and headed to the hospital.

Once we arrived it seemed like within minutes Benton was extremely critical.  His oxygen saturations dropped down into the 70s and then the 60s despite being on 100% oxygen.  The doctors surrounded him as they tried everything to get him to start satting better again.  First they brought in the jet ventilator which allows them to bring his ventilatory pressures up past what the conventional ventilator can do.  With this change they increased his pressure up to 37 with a PEEP of 9.  This seemed to work for a brief second until the doctors tried to place an arterial line.  Then he started de-satting again in the 70s.  At this point the doctors brought in the nitric oxide.  Once the nitric was hooked up his oxygen saturations started getting better.  Thank the lord!

Resting after his terrifying ordeal

That evening we stayed at the hospital sitting vigil next to his bedside with him on full support.  It was heart-wrenching to see him requiring so many machines that we had thought we had said goodbye to.  His bedside was surrounded by a jet ventilator, nitric oxide and an IV tree with TPN, and various medications to keep him sedated.  We had come so far since our terrifying Christmas holiday, yet here we were back in the same place.  I couldn't help but cry and ask myself why this had happened.  Benton had been doing so well just one week before and now we were again terrified that we might lose him. 

Acting perky despite being on the jet ventilator

Since Benton was now not allowed to eat on the jet ventilator the doctors needed to place a new PICC line and this time they placed it in his head.  The good thing about the PICC line is that our sweet boy won't have to be poked and prodded so much to get IV after IV into his tiny veins.  Currently our sweet angel has a PICC line in his head, an arterial line in his left arm and a regular IV in his right arm.  To keep him from losing these lines they have had to restrain him and keep him drugged up on morphine and versad.  It is so hard to see my wonderful little boy hurting and straining against his restraints.

Since the scary day on Wednesday, Benton has slowly started to improve with the help of another steroid treatment.  The doctors decided that they would give Benton another shot at the steroids not only because he had reached 2.5 kilos but also because they hoped the steroids would help him get through this latest spell.  Over the past few days his oxygen requirement has come back down from 100% to 60% and now 55%.  His ventilator pressures have dropped from 37 to 35 to 33 to 31 to 29 to 27 to 25 to 24 to 22 to 21 now.  The doctors have taken him off the jet ventilator and now he doesn't need as many drugs to keep him calm.  In addition they have started to wean his nitric oxide from 20 to 16 and now to 14.  Benton has also started feedings again and is already back up to 6 ml/hour and today his feeds will be fortified to 24 calories.  We could not be more thrilled or proud of Benton's progress. 

Our little paddle boy with IVs in both arms and a PICC line.

We are hoping that Benton comes off the nitric oxide again soon, because this is still considered a lot of support and he can't make further steps forward in either getting extubated or having surgery until the nitric is gone.  Since everything has happened in the past week, the doctors have begun to prepare us for the likelihood that Benton will need a tracheostomy in order to stabilize his airway and help his chronic lung disease.  We are going to have a consult with the ENT specialists soon and it will be up to them regarding when to schedule the surgery.  We remain hopeful that Benton could be successfully extubated, but since he had such a huge setback this past week we are realistic that it may not be in the cards.  At the end of the day, all that matters is that our sweet boy can come home and that he can start to explore the world and be more comfortable.  By having a tracheostomy Benton will be able to start playing with toys and sticking his hands in his mouth, he will no longer have to be sedated so he can't pull out his tube and we will be able to start picking him up whenever we want to help comfort him.

Finally holding him again after almost one week

Please continue to keep our beautiful, brave boy in your thoughts and prayers.  Benton is such a fighter and we continue to pray for his lungs to get stronger with each passing day, that his pulmonary hypertension goes away and never rears its ugly head again and that he can remain healthy and not get anymore viruses or infections.  We love him so very much and cannot thank everyone enough for sending him love each and every day.

Feisty and awake before the pneumonia

Pneumonia: Day 116-118

Trying to rest and get better

Benton's infection has gotten worse over the last two days and he now has pneumonia.  In the past few days his secretions got very thick and yellow, and his oxygen requirements went up.  Over night he needed almost 95% oxygen and due to this increased requirement the doctors decided that he needed a chest x-ray.  Unfortunately his chest x-ray showed that he had a small bit of lung collapse as well as liquid on the lungs (i.e. pneumonia).  So the doctors have given him lasix to get the liquid off his lungs as well as increased his ventilator pressures to help re inflate his lungs.  In addition, his fever was worse and the doctors needed to give him Tylenol to assist in breaking his fever, but as of today his fever has broken.  Yay! 

After speaking with the doctors today, they are concerned with Benton's requirement for increased oxygen, but since he is already on antibiotics all we can do is wait and hope for him to get better.  At least he is still the sweet feisty boy we know and love and that keeps us hopeful that he will make a quick recovery.

Please send your thoughts and prayers that Benton beats this infection and gets rid of his pneumonia quickly without losing all of the ground he has gained in the past few weeks.  We need loving thoughts to help him beat this latest hurdle.

Today is Benton's due date....he is officially full term!

Growing and Growing: Days 108-116

Cutie in a new outfit from Tutu

This past week has been pretty darn innocuous by NICU standards.  Now that the doctors have decided that they will give Benton another chance at extubation with the steroid treatment once he hits 2.5 kilos, the focus has been on growing.  Originally the doctors had upped his feeds to be 30 calories per ounce compared to the normal 20 calories of regular breast milk, but the 30 calorie feeds had Benton gaining way too much too quickly.  He gained over a pound in just about 4 days!  So now the doctors have scaled back Benton's feeds to 28 calories and this seems to be having him gain weight at a more reasonable rate.  As of today, Benton weighs 2330 grams (i.e. 5 lbs 2 oz) and is over 17 inches long!  He truly is growing in leaps and bounds since his birth weight 470 grams and just 11 inches long.

Over the weekend my parents came into town, since this week would have been my original due date.  It's crazy to think that right now I should be 9 months pregnant - not being able to see my feet and about to pop - but instead I have a 4 month old in the NICU.  It definitely provides perspective on why Benton has had such a rough go of it...he should have still been in my belly to this day if he hadn't come so early.

Another day another new outfit!

With my parents in town we spent a ton of time with our little man at the hospital.  My parents couldn't stop marveling at how much he has grown since Christmas and how each day he acts more and more like a newborn.  In fact, my mom brought him a bunch of newborn and preemie sized outfits and he can barely fit in the preemies anymore!  On Sunday my dad had the opportunity to hold Benton.  It was so amazing to see grandfather and grandson together in a rocking chair. 

Three generations together

This week was also another milestone - Benton's first vaccinations.  He got his initial vaccine for HIB (some sort of influenza) and immediately after that he started running a fever which is a normal side effect of getting a vaccine, but the fever stayed on longer than the doctors would have liked.

By Monday, Benton had started having a lot of secretions in his ET tube which needed to be suctioned often.  These secretions are similar to what we would normally cough out of our lungs but since he has a tube down his throat the nurses have to suction out those secretions for him.  While we were sitting there playing with Benton and tickling his tummy, he all of a sudden got very fussy and then started turning blue.  His ventilator starting blaring APNEA APNEA and his oxygen saturations and heart rate started dropping.  I freaked out because just seconds before he had been fine and acting like a regular cute and alert newborn and now he seemed lifeless.  Luckily the nurses and doctors ran over and were able to fish out a large mucus plug from his tube.  After that scare the nurses have been suctioning him more frequently and they tested some of the mucus in his tube.  It turns out that Benton has another infection which is causing the increased mucus in his lungs so the doctors have placed him on antibiotics again.

Relaxing in his warmer

Please continue to send prayers to our little fighter.  We want him to be able to fight off this latest infection, continue to do well on his feeds and have his lungs get strong enough to eventually come off the ventilator and onto CPAP.

Happy 16 Weeks Benton!

Wide awake and looking around after tummy tickles.