Gearing up for Surgery: Days 177-182

My cute little dino!

Since my last post we have gotten some great news....Benton is not going to need a G-tube!  On Monday our doctors came by Benton's bedside and said that the pediatric surgeon has been monitoring Benton's feeding progress and has said definitively that he "will not put a g-tube in that baby" and the attending doctors agreed.  This is huge news because it means one less surgery for our little guy and it means he can continue feeding by bottle.  The doctors also told us that if after the hernia surgery, Benton is on low-flow oxygen and the only thing holding him back from going home is taking every bottle by mouth the nurses will teach us how to put in a feeding tube in his nose. We had been hoping that this was a possibility because after months in the NICU and helping with Benton's cares we truly believe we could be trained to put in a feeding tube if necessary.  We are just so relieved that Benton is getting to move forward with his hernia surgery!

Hanging out

Now that the hernia surgery is set for Monday, my nervousness has set in.  While I know that the hernia surgery is a necessary step on the road home, it is nerve-wracking to know that your baby is going to undergo surgery, general anesthesia and reintubation.  It has been especially nerve-wracking for me because every doctor and nurse has given a different estimate for how long we can expect him to be reintubated from a day to a week.  We are just hoping and praying that he can be extubated after the surgery as soon as possible and get back down on his settings from the ventilator to CPAP to high flow and finally to low flow oxygen.

Celebrating Nurses Week with matching sunglasses!

Since Benton's surgery has been set for Monday, the doctors have made virtually no changes to his care since we are just trying to let him relax before surgery and work on his feeds.  He is now taking up to 60ml by bottle and he is still on High Flow of 2 liters with his oxygen requirement between 35-50%.  Benton also had an eye exam and his Retinopathy of Prematurity (ROP) is now down to Stage 0 Zone 3 which is the lowest stage of ROP before his is declared ROP-free.  We can't wait until this surgery is behind us and we can focus on discharge!

Please continue to pray for Benton's continued progress and successful discharge!  We are praying for Benton's surgery to go well and for him to be extubated quickly post-surgery.  Please send your love and prayers :)

Cinco de Mayo and Mother's Day Themed Birthday Signs!

Happy 6 Month Birthday!!!

Today was Benton's 6 month birthday!  What a milestone!  The doctors even sang him happy birthday on rounds this morning.  It is such an incredible thing to watch Benton grow and become such a chubster hese past 6 months.  He is now over 8lbs and 20 1/2 inches long.  He makes eye contact and tracks you while you play with him, he can smile, hold up his head and he is starting to attempt rolling over.  We couldn't be prouder of our little wonderbug.

Such a birthday milestone requires a new birthday sign:

Happy Half Birthday!

March of Dimes Walk: Day 176

Saturday was a beautiful day in DC and we were honored to participate in the March of Dimes Walk for Babies.  This is an amazing event aimed at raising money near and dear to our hearts - combating premature birth.  As we entered Nationals Stadium, I was struck by how many people have been affected by the birth of a little one too soon.  As I looked around the crowd of thousands, I saw people who had experienced what we had - the NICU rollercoaster, the torture of not having your baby at home and the feeling of handing over the well-being of your child to a team of doctors and nurses.  Teams of people were dressed in matching t-shirts honoring their preemies, preemies were being pushed in strollers, and kids were walking with stickers saying "I walk for ME".  The event touched my heart in a very special way and I plan to participate for years to come.  Next year we will walk with Benton!

We had planned to walk with some of our fellow NICU families and it was great seeing them again. Seeing Henry and Giti, two of Benton's NICU neighbors, was incredible.  They are both over 11lbs now and it is so reassuring to see babies flourish outside the NICU as we are in the home stretch ourselves.  As we waited for the walk to start we ran into a group of Georgetown nurses, who were all amazed at the progress each NICU grad had made since being discharged.

NICU Grads

As we were talking with the group of NICU nurses, Nick Cortina and his family came up to us.  For those of you who don't remember - Nick Cortina is a former preemie who the hospital introduced us to on one of our first days in the NICU.  He is a former 25 weeker who is now 20 years old and at school in Georgetown.  His story was a wonderful beacon of hope during our most trying times and he has stayed in contact with our family since that first meeting.  He has not only provided us with inspiration, but he also gave Benton his friend Jack the Bulldog.  Jack the Bulldog has become a barometer for Benton's growth.  Jack used to be bigger than Benton but now Benton has surpassed Jack in size and stature.  Getting to see Nick and meet his extended family was the icing on the cake for an already perfect day. 

Meeting Nick Cortina's Family

Posing near Home Plate at Nationals Stadium

Completing the March of Dimes Walk for Babies!

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

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!