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!