Happy 8 Months Benton!

Sweet cutie

It's hard to believe that we just celebrated Benton's 8 month birthday.  This means that Benton is 8 months old chronologically and 4 months old adjusted.  It's weird to think of how many ways I can think about Benton's age.  In size (he's 11 1/2 lbs) he is more like a 2 month old, but in development he is more like his 4 month adjusted age.  When people ask how old my son is, my answer changes based on who I am talking to.  For example, if its a close friend/doctor/therapist I go into the whole spiel "He's 8 months old but was born at 23 weeks so its really like he's 4 months old".  But with strangers or acquaintances that don't know my situation a simple "3 months" will suffice.  Even though he is not 3 months in any way - it is just easier to tell people what they want to hear.  I don't like explaining why my child is small for 4 months because that gets us into a whole other conversation about his premature birth and then I feel the need to explain that he really isn't even 4 months old but rather 8 months old - so I just stick with what they want to hear. 

In his prim and proper suit from Tutu

Enjoying time with mama

Now on to the more important thing: how Benton is doing.  Benton continues to amaze and surprise us every single day with his enthusiasm for life, ability to pick up new skills and general happy-go-lucky personality.  In the past few weeks Benton's gross motor skills have grown by leaps and bounds with the help of his weekly physical therapy appointments.  He can now hold his head up during tummy time, roll over from tummy to back, bat at toys, suck on his hands, and grasp his links.  He is also smiling socially in response to his mommy and daddy and whenever you tickle under his chin or play "this little piggy" on his toes!  When Benton is awake and playful, I just can't get over how much fun I have being his mom.

Tummy time and grasping at links

Trying to sit up in his boppy and with Daddy's help

So many things to play with :)

 Check out this video of Benton rolling over!!!

The one thing that has been difficult with Benton has been his feeding.  After he first began his prevacid medication he started to eat 60-70% of his feeds by mouth, but then all of a sudden it started to drop off with no apparent reason.  At the same time he pulled out his NG tube from his nose 3 times in less than 48 hours.  It seemed apparent to us that he really didn't want that tube in his nose, so we decided to give him 2 days without the tube and see how he did with his feeds before our next doctors appointment.  We didn't make this decision lightly - all the research we had read regarding tube weaning had recommended taking out the tube and letting the child get hungry so that they would want to eat.  So with this research backing up our decision we decided to see how our little fighter would do without the NG tube.  The answer was pretty decent.  He increased his feed volumes from 10-25% to 65-80% within those two days.  Granted he needed to be fed more often and some feeds took a little too long, but in general he was more enthusiastic about the bottle and his feedings than he was with the NG tube in place.  Furthermore, without the tube he seemed much happier and more talkative without that tube in his throat constantly.

Benton's priceless facial expression from going through a tunnel for the very first time!

With such progress in two days we went to the NICU follow-up clinic super jazzed.  But our happiness was short-lived.  The doctors were not happy with Benton's oral intake nor were they happy with his weight gain.  He had gained 10 oz in 2 weeks but that wasn't the 1lb they were looking for.  They told us it was necessary to put his feeding tube back in and increase his feeds to 80 ml at 28 calories.  Furthermore, the doctors now want Benton to be evaluated by a speech therapist, have a barium study done to review his suck and swallow reflex and perhaps start the route to a G-tube.  Needless to say we were pretty upset.  I get that my son still might need his NG tube for awhile longer, but to jump all over us for trying to wean him from his NG tube seemed cruel.  And to basically put a G-tube surgery back on the table just broke my heart.  Joe and I have already learned how to place the NG feeding tube so it's hard to wrap my head around making Benton go through G-tube surgery when we could maybe avoid it.  All in all it was a hard conversation to swallow.

We have a speech therapy evaluation set for next week and we will likely have more answers at that point.  With each passing day Benton seems more interested in his feeds and reacts with less reflux....so there is hope he can avoid surgery.

I would do anything for that smile

In other news, Benton needs to go to a urologist to have his penis looked at.  When Benton was about to be discharged from the hospital we had the choice on whether to circumcise or not.  While we had initially been for circumcision when I was pregnant, having watched Benton go through countless procedures made us decide against it.  We thought Benton had been poked enough there wasn't any reason that he needed to be poked one more time.  Well apparently that may have been the wrong call.  It seems that Benton's foreskin is causing him to not fully empty his bladder when he pees and they are afraid he will get a urinary tract infection so we need to have it looked at.  There is a high likelihood that the urologist will recommend a circumcision in which case I guess poor Little B will have it have that done as an outpatient procedure.  I just feel bad because we could have had him circumcised while he was under general anesthesia during the hernia repair and now it will likely be outpatient with just some numbing cream.  Oh well.

Being silly with pants on his head

With each day that passes, I have begun to venture out of the house more and more with Benton.  Just this past week we brought him into the backyard to enjoy a cook-out as well as took him on a walk around the Capitol.  Plus I have started to reach out to our NICU friends and start doing walks with the other moms of preemies.  My friendship with the other preemie moms has been such a blessing.  Not only do they totally understand my obsession compulsion with germs around Benton, but they are such a good resource to talk through these medical issues and developmental milestones.  Plus it's just plain fun to have mommy friends and playmates for my little man :)

Enjoying playtime in Lincoln Park with his preemie pals

Benton and his pal Henry

Despite all the medical issues we have to deal with, each day with Benton is the ultimate blessing.  I love every single minute I get to spend with my darling boy as he grows stronger each day.  We continue to pray for Benton's health - that his lungs will get stronger and no longer need supplemental oxygen, that his pulmonary hypertension and PDA will resolve and that his feeding issues will disappear.  Thank god for miracles because every day I look at my son I know I am witnessing the most amazing miracle of all.

Happy 8 Month Birthday Sign by his Great-Great Aunt Sister Mary