Here We Go High Flow! Here We Go! Days: 160-168

Our sweet boy with his friend Jack the Georgetown Bulldog!

Things have really started to speed up for Benton and it truly looks like we could be going home in about a month!!!!  Since my last post, Benton rocked out the CPAP of 5 so much so that within 2 days they had turned him down to High Flow of 5 liters.  It was unbelievable to watch him reach High Flow so quickly and he was still rocking it out.

First Sleepy Smile!

With Benton now being on High Flow we want him to be able to slowly wean down on the number of liters (i.e. 5 liters to 4 liters all the way to 1 liter).  Once he hits 1 liter that is considered low flow oxygen and he an go home on that type of nasal cannula.  The evening that Benton went to High Flow of 5 liters he was extremely fussy and pulling at his cannula all night long and not sleeping.  The doctors weren't sure if he just preferred the CPAP or if the amount of air blowing into his nostrils via high flow was just bothering him.  So overnight they decided to turn him down to High Flow 3 liters.  Well this seemed to be too much too quickly because Benton started requiring almost 60% oxygen so they turned him back to High Flow of 4 liters and that seemed to be his sweet spot as he was able to sleep but also bring his oxygen requirement back down.  By Monday he was doing so well on the High Flow of 4 liters that the doctors actually turned him down to 3 liters!!!  What quick steps for our little man!!!

Staring lovingly at Momma

Gazing at Daddy

Over the weekend we celebrated Easter with our little fighter and dressed him up in his Easter best and decorated his crib.  We got him spider-man Easter eggs and brought in his Easter lamb.  We also dolled him up in his special Irish sweater from his Tutu (grammy in Hawaiian).  Love our little cutie!

Dressed up for Easter in an outfit from Tutu

While we were sitting with Benton enjoying the afternoon, the doctors came by and told us it was time for Benton to get his MRI.  Each micro-preemie is required to get an MRI before they go home so you can better understand if there are any issues with their brain development.  We were nervous to say the least since Benton has had a brain bleed and was without adequate oxygen there for awhile in his scariest days.  The nurse took him away in a transporter and all of a sudden there we were sitting at an empty bedside.  After about an hour and a half they brought Benton back and told us he almost screwed up his MRI results because he was sucking on his pacifier so hard.  So funny that his love for his pacifier almost ruined his test results!  Waiting for the results was torture, but luckily we heard back from the doctors that his brain volumes look good and his brain bleeds don't look like they have cause long term damage.  Whew!  Man are we lucky to have such a strong boy!

In the transporter ready for the MRI

Leaving the NICU for the very first time for his MRI

Now that Benton is on High Flow we got to start feeding him by mouth in earnest.  On Monday, I was able to give him 20 ml by bottle and he was able to take 15 ml the first time.  By that evening he was regularly taking 20 ml at each of his feedings by bottle.  Benton was doing so well bottle feeding that the next day the doctors allowed him to start dry breasting and taking 30 ml by mouth.  For those of you who don't know what dry breasting is (and I was one of them) it means that you have pumped the milk out of your breasts before you try nursing so they can practice their latch without worrying that they might choke on some unexpected milk.  The very first time I let Benton dry breast he just latched on like the hungry little man he is.  What an amazing feeling!  After months and months of pumping to finally get that moment to bond with him and feel the interconnected love between mother and child.  While Benton had latched easily, he quickly got upset that there was no milk to be had in my breasts so even after he had dry breasted for about 15 minutes he took his whole 30 ml!

Hanging with our little man

With Benton feeding so well we have been at the hospital more than ever to work with speech therapy and be there for the bottle feedings.  It is so fun to see Benton so excited to eat, it is almost as if he was saying "Finally Guys! This is all I wanted for months!".  Even though Benton was being fed through a feeding tube I don't think it gave him the same amount of pleasure as actually getting to taste milk fir the first time.  Now every feeding he anxiously looks around for his bottle and couldn't be more excited.  Yay my hungry little hippo :) In addition to dry breasting, the doctors have now encouraged me to try nursing him as well and he has really enjoyed that bonding time.  He seems a bit more disorganized on the breast as compared to the bottle but he loves his milk and is still as eager as ever.

Taking Bottles!

Last night we got some of the best news ever.  One of our favorite nurses Kelsey had Benton and she was allowed to see how much milk by bottle he would take if given the chance.  Prior to this the doctors had been limiting him to 30 ml by bottle even though his feeds were 55 ml.  This was so he would pace himself and start to get the hang of bottle feeding before just going all in; however, in order to come home he needs to be able to take all his feeds by bottle.  Well.....Benton took the entire bottle (all 55 ml) in under 20 minutes!  And then he did it again two more times in a row.  We are are just overflowing with pride for our little eater.  He is just rocking the feeds and if he keeps it up we are getting so close to coming home.



The only kink in all of this happy news is that a surgeon came to see Benton and confirmed that he will need to have his inguinal hernias repaired before he comes home.  A inguinal hernia is super common in micro-preemies - basically part of your abdomen doesn't develop until about 26 weeks and so without this muscle every time Benton bears down to cry, fart or take a poo he pushes some of his intestines into his groin.  Well in the hospital this isn't a big deal as long as they are able to be reduced (i.e. pushed back in).  But going home they need to be repaired.  The doctors tell us it is an extremely common procedure and will only take 1-2 hours.  But Benton will need to be reintubated for the procedure and given general anesthesia.  Generally the doctors only start to set up the hernia repair surgery when you are close to coming home so in that way it is exciting to see this next step on the horizon, but I am definitely super nervous about him being reintubated again even if its just for a few days.  Once he is reintubated he will regress a bit and have to go through the same steps through CPAP and High Flow in order to get to Low Flow and going home.

Not happy at the prospect of surgery

Hearing that Benton will indeed have his hernia surgery next week is definitely a wrinkle in all of this good news, but we are remaining positive that he will rock out the surgery and get back to high flow and then low flow in no time.  Once the surgery is complete he will hopefully be just weeks away from coming home!!!

Please send your thoughts and prayers to Benton so he can do extremely well on his upcoming surgery and continue to rock out the High Flow and the bottlefeeding!  We can't wait to take our little wonderbug home!

Happy 23 Weeks Benton!

A little scared of Puff the Magic Dragon!

Happy Easter!

Happy Easter! On such a sacred day we continue to count the multitude of blessings that have been bestowed upon our family in the past year.  Our little fighter is doing better than ever and we could not be more blessed.  Thank you for the continued love and prayers.  Miracles truly do happen!

Benton with his Easter sheep courtesy of Lisa Gentes-Hunt (a reader of the blog)

Rocking the CPAP: Days 152 - 159

Cutie in his hand-me-downs from his cousin Caleb!

Over the past week we have been just enjoying our time with our little wonderbug and he has been amazing us at every turn.  Today he is just under 6lbs 13oz and on CPAP of 5!

Hanging in his mommaroo with his friend Jack the Georgetown bulldog!

Benton has been blossoming this past week and has finally been weaned off both his steroids and his morphine.  With these weans the doctors decided that he was ready to go down to CPAP of 6 on Thursday.  When he first had the CPAP weaned to 6 he required more oxygen going up from 35% oxygen to almost 55%, but then the respiratory therapist realized there was a small leak in his CPAP and he wasn't getting all of the oxygen.  Once they switched out his ventilator and nasal cannula he was able to wean back down to 38%.  This weekend Benton was rocking out his CPAP of 6 - satting 100 on 30% oxygen.  It was unbelievably amazing to see how great he was doing.  We held him and rocked him all weekend taking turns between reading to him and having his stuffed animals talk to him.  


In addition, Benton has been doing amazing on his feeds and has been able to compress his feeds over 1 1/2 hours every 3 hours and now down to 1 hour every 3 hours.  This means Benton is steps away from getting down to 30 minute feeds.  30 minute feeds are the final goal because that is how long a baby normally takes to drink a bottle or breastfeed.  The nurses and the doctors have all commented that Benton is a terrific eater and he hasn't even blinked with all the changes to his feeds.  As the days pass Benton has been working more and more with speech therapy and doing pacifier dips with milk and trying out swallowing small amounts of milk via syringe.  Today, I was able to meet with speech therapy and hold him while he did syringe feeding (5 ml) and he totally rocked it out.  The speech therapist said that Benton is very interested in feeding by mouth and she believes he will do well once he is cleared to take more milk orally once he is on high flow.

Sleepy time

On Monday, Benton had been making so much progress on CPAP of 6 that the doctors decided to try him on a CPAP of 5.  This change coupled with his morphine being turned off led to Benton wheezing, retracting and generally breathing too fast.  While we had been hopeful that Benton would take to CPAP of 5 just like he had taken to CPAP of 6, it was too fast too soon.  Within 8 hours Benton had to go back to CPAP of 6.  While this was slightly disappointing we knew that Benton can't be rushed and that every step he is taking is a miracle and we have to be grateful for how wonderful Benton is doing every day.  However, by today (Wednesday) the doctors felt that Benton was ready to be challenged again and they turned down his CPAP to 5.  So far today Benton has been doing well on the CPAP of 5 and is breathing more steadily and not wheezing.  We are incredibly hopeful that this time the CPAP of 5 sticks!  If it does the next step for Benton is high flow and he can start feeding by mouth in earnest.

Hanging with his friend Jack

Dad with his Benton beard - no shaving since Benton was born!

Every day we count our blessings that Benton is still here with us and amazing us every day.  We appreciate everyone's continued thoughts and prayers for our little fighter.  I don't think we could have made it this far through our journey without everyone's love and support.  We cannot thank you all enough!  Please continue praying for our little one (even if he isn't so little anymore :).  We are hoping he can continue rocking out the CPAP of 5 and eventually get to high flow and start feeding by mouth so he can come home!

Benton's Cherry Blossom Themed 22 Week Birthday Sign!

Cutie with his mommy!

Our Little Grumpy Gus: Day 153

Here's Benton in his mommaroo.  Now that Benton has been extubated for over 3 weeks he has really started to get a voice!  His vocal chords took awhile to start working after being intubated for so long, but as you can see our grumpy boy can truly let us know when he is upset now.  Even though I want to comfort him in every way it is actually refreshing to be able to hear him cry and see him vocalize his wants and needs.  Love this little grumpers to pieces :)

Happy 5 Months Benton! Day 143-Day 151

Looking around with Grandma

I can't believe that Benton is already 5 months old!  It's unreal how it feels like time passes both excruciatingly slowly and in the blink of an eye.  The days in the NICU just keep piling up and we are already past 150 days, yet it seems like just yesterday Benton was like a tiny bird and able to be held in one hand.  Our amazing fighter is now 6 lbs 5 oz. and is over 18 1/2 inches long.  His cheeks are super chubby and rosy and his legs have little dimples :)


Benton has now been extubated for 18 days!  Since our last update, Benton has been able to wean off the nitric oxide with the help of sildenafil (i.e. VIAGRA).  Sildenafil helps to improve pulmonary artery function by reducing the resistence that Benton's blood vessels encounter in his lungs.  While viagra is normally thought to help older gentlemen get boners, our little 5 month old is on a twice daily dose of the stuff to help his pulmonary hypertension.  The viagra certainly has worked wonders and has allowed Benton to wean off the nitric and already his pulmonary pressures on his echocardiogram look improved.  In addition, Benton is slowly weaning off his morphine and is completely off the versad, these medications had been used to calm him down when he was on the jet ventilator a few weeks ago.  Finally, this Wednesday should be the last day of his steroid treatment and that will be the telltale sign of how well he truly is doing on the CPAP once the steroids are officially gone.  Over the past few weeks they have been weaning the steroids ever so slowly - going from twice a day to once a day to now every other day.

Benton checking himself out in his mirror!

With all these changes we have been anxiously watching Benton's blood gases, oxygen requirement and how fast he has been breathing.  His oxygen requirement has been anywhere from 29%-45% and his breathing has been mainly between 60-70 breaths per minute with moments both higher and lower.  Benton's blood gases (his CO2 levels) have been good enough to switch him to blood gases only on Mondays and Thursdays which is the least frequent he has ever had them while in the NICU.  We are hoping that he keeps up the good work and he can move down from a CPAP of 7 to a CPAP of 6.  This will be one step closer to getting to the high-flow nasal cannula.

Hanging out with his crab mittens from his nurse Mary Anne and his new Giraffe sound machine :)

Over the past week I have tried to become even more involved with Benton's care.  I am now participating in his physical therapy and speech therapy sessions.  Meeting with physical therapy is interesting as we learn how to help Benton meet his developmental milestones.  Today we worked on strengthening his neck muscles and doing bicycle kicks with his legs.  It might seem early to meet with a speech therapist, but what you may not know is that speech therapists work with babies on learning how to suck and swallow to help them take bottles.  We have been working on slowly getting Benton used to swallowing while breathing by dipping his pacifier in milk and having him suck the milk off his pacifier.  In addition, the speech therapist will insert a small amount of milk into his mouth via syringe and have him swallow that while sucking on his pacifier.  These are huge strides for our little boy and I am excited to assist in helping him grow and develop on a daily basis.

Our big beautiful boy.  Such a fighter!

This past week Joe's parents have been in town to see how big Benton has gotten and to help set up his nursery.  Joe's dad has been hard at work helping us repaint the nursery and rearrange the room.  With such awesome grandparents in town we had both of Joe's parents hold Benton this past weekend.  It was so great to see three generations together and Joe couldn't have been more thrilled to see his parents with Benton.


We are truly blessed to be able to watch our lovely boy grow and experience his surroundings.  With each passing day he interacts with us more and more and makes the cutest, most expressive faces.  In these coming days and weeks we are praying for Benton's lungs to grow stronger, for him to be able to graduate from the CPAP down to the high-flow nasal cannula and for him to be able to start feeding by mouth.  We hope and pray that he continues to improve each and every day and that he can come home soon.  Please keep Benton in your thoughts and prayers so that we can finally bring our sweet beautiful boy home.

Benton outfitted by Auntie Elyse :)

Sleeping cutie

21st Week Birthday Sign!