I guess it’s been an eventful week or two.  Lil B and I have had a lot of fun.  Unfortunately, Daddy Daycare has come to an end, for the most part.  Lindsay had her last day of work and is now home with us.  As much work as it was, having her all to myself was a lot of fun.  With as much fun as we’ve had, there has been an event that has reminded all of us how little our problems really are.

One of my college roomates, groomsmen, and a great friend, Eric Nickoli, and his wife gave birth to their first child, at 23 weeks gestation, on June 8th.  Tiny Judah Elizabeth Nickoli was born weighing a whopping 1.9 lbs.  And we thought Bentley had weight problems.  Not only was she 17 weeks early, but Katie went into labor while they are in Northern California working at JH Ranch.  This is not the easiest camp in the world to get to.  There aren’t exactly any major University Medical Centers nearby.  As you can imagine, Judah is having quite a fight to stay alive.  According to their Facebook page “Praying for Judah Elizabeth Nickoli,” the extended family has made it out there, but the stress and decisions as to what should be done next is starting to weigh heavily on them both.  I know there are a few of you reading this who have lost infants or young children and I can’t begin to know what that impending pain can feel like.  I imagine it would come close to having your heart cut out with a spoon (Robin Hood reference) but way way worse.  Please send some serious prayers their way as they make some incredibly tough decisions in the days to come and deal with this fragile situation.  We are praying for them constantly.

Bentley’s world seems so normal and boring in comparison, but I’ll update you anyways.  One of the last big outings we had for Daddy Daycare involved taking Bentley out to The Regions Tradition.  I really loved this.  I don’t know how many dads would take their infant to a golf tournament, by themselves, but I DID.  It was a blast.  As soon as we arrived she started to get hungry so I popped a squat by the practice green and fed her.  We watched as some young kids covered their hats in autographs, and chased down more.  Storms were beginning to roll in from afar so the breeze was picking up.  Bentley loved it.  She kept grinning and doing her penguin flap move which means “I like it.”  Right before the storm hit my sis pulled us into the clubhouse and turned B into a little celebrity.  A friend had made B a little “I love Children’s Hospital” outfit, and we stuck a few logos on it.  Katherine Webb, Miss Alabama USA 2012, was there doing some PR stuff for Children’s and she spent a little time hanging out with Bentley.  She tweeted a sweet, as in cute not awesome, pic of them to her 250,000 followers.  That was sweet, as in awesome not cute.  Children’s of Alabama along with the Champions Tour also tweeted and posted pics of Bentley on their social media sites.  Aunt Jess, being the PR guru, absolutely loved the press.  I thought it was pretty cool myself.  While Bentley was being passed around the Club House, I had the opportunity to meet a couple of Air Force pilots and talk aviation like I had stayed at a Holiday Inn Express the night before.  After holding B for a while during the storms a young pregnant couple did ask how I got so lucky having such a calm and mild mannered baby.  All I could say was “Don’t’ know, I guess we just got blessed.”  We proceeded to chat a few minutes about babies and how some people’s kids cry a lot, and pitch fits, and act-a-fool.  You know, typical expecting parent talk.  No need to rain on the parade of someone just making friendly conversation.  It was already raining out the tournament.

The following Monday Bentley had her CT scan.  Unlike the MRI, the CT was just as a means for the ENT to gain a picture of the structure of Bentley’s Inner Ear.  This was not for determining a cause of her deafness.  Again, though, we were expecting to have to put Bentley under anesthesia.  This did create some anxiety because of how tough anesthesia was during the muscle biopsy.  It really took a toll on her respiratory system, due to the intubation and all.  Fortunately, the Anesthesiologist was all for trying the CT without any meds.  They swaddled B up real tight and got her all cozy.  Then they tried the scan.  She was done before I could return with another expensive breakfast sandwich.  What a great day!  It’s the little victories that can make a huge difference.  Instead of having to spend half the day waiting on B to wake up, we were back home by about 9am.  Fun times.  Oh yeah, we have received the report and her inner ear is structurally intact.  Many praises for this.  We now know that all of the anatomical aspects needed for Cochlear Implants are in place.   This does not guarantee we get CIs, or that they will be successful.  It is just one more BIG checkbox along the journey.  

We took Bentley to her first visit to a pool.  We met Lindsay’s sister and B’s cousins at their neighborhood pool for an afternoon swim.  As I may have mentioned B loves the bath.  So naturally she was a fish already.  We played in the kiddy pool with her and she loved it.  Lots of smiles and giggles.  One day I’m having a pool lined with wrestling mats and inlaid with subwoofers.  She’ll be able to swim around without getting hurt when she nails the wall, and feeling the music the whole time.  I think I saw a pool with subs on MTV Cribs once.  Might have been Master P’s crib.  I’ll have to call his pool guy.

Can’t remember if I mentioned Genetics was making us a Cardiology referral.  That’s a heart doctor.  We had that visit last week as well.  Bentley had and EKG and an Echocardiogram.  This was right up my alley, and one of the first things we’ve done where I could look at the monitors and know what was going on.  It was our last Daddy Daycare field trip.  Being that it was Lindsay’s last day of work.  We had a blast.  Everyone in the waiting room thought B was a cutie, and she put on a smiling show for everyone.  The good news was her heart is in tip-top shape.  No sign of deformity or weakness at this point.  More good news!

Sunday, June 16th, was Bentley’s Baptism/dedication thing at church.  Of course most of the fam joined us for this.  It was our way of professing and committing to raise Bentley in a manner that glorifies God and teaches her the scriptures until she is old enough to make the decision to accept Christ for herself.  It was a great day, not only for the event we celebrated, but mainly as a time to come together as a family, share a meal, and give thanks for the blessings and grace our God has given us.  

Feeding is still going well.  After a lengthy discussion with Bentley a week and a half ago, I decided to pull her NG tube and give her a trial off of it.  She is doing pretty well without it.  She’s taking in enough calories to hit her targets, most days.  We’ll take her in to check her weight soon.  If she’s not gaining or hits a couple days of poor eating we’ll put it back down.  I just decided she needs some time to be herself and not have that thing stuck to her face for a little while.  I think she can tell a difference.  She still loves Enfamil.  She has discovered a love of fruits, and a hatred of veggies.  I can’t blame her. The green beans taste terrible.  Hopefully we can keep the tube out.  We shall see.

Finally, we made a House Hunting trip down to Dothan.  We finally had a number of potential dwellings available to make a trip instead of just phone calls, pictures, and mom’s drive-bys.  Bentley did great on the trip.  This was sort of trial run to see how well she will travel between Bham and Dothan within 24hrs for the weekly trips that will start once we move.  B handled it well.  She slept some, played with her feet some, and of course cried for what we suspect were gas bubbles.  Or she was screaming “GET ME OUT OF THE DARN CARSEAT ALREADY!  I WANT TO LAY ON MY GIRAFFE AND HOLD MY FEET WHILE BEING UNRESTRAINED!”  We’re not sure yet what the cries were about, but they didn’t last long. 

That is all for now.  I’ll try and update you on how our Kindermusic class goes.  We started that last week, but I’m going tomorrow to see if it is like the class I would hold in our padded and thumping swimming pool.  I can assure you one thing, this dad won’t be prancing to the music like Lindsay did last week.  I’ll walk with a cool yet rhythmic swagger while I hold B.  HAHAHAAHA  this could be a train wreck.  Thanks again for the prayers.  Don’t forget about Judah Elizabeth out in a Medford, OR hospital.  She needs strength, nutrition, healing, growing, and to poop (that’s according to Eric).  We praise God for how far she’s come since birth, but know she’s not out of the woods yet.  Have a great week.  Touch somebody’s face for Bentley:)

I sort of forgot to update you all on how those doctors appointments went.  Sorry.

Genetics went well.  Again, they are so thorough.  It's actually a calming office.  As far as the lab results go, most of them have come back normal.  We are still waiting on a test that checks for 66 known genetic causes for hearing loss, called the OtoSCOPE.  We are also waiting on a lab that checks for some kind of Mitochondrial disease.  Specifically they are using the muscle tissue to analyze the electron transport chain (ETC) within the mitochondria.  Since I took cell biology a while back, I don't remember much.  But 6th grade science will never let me forget the Mitochondria are the "powerhouse" of the cell.  A problem with the ETC impacts the ability to produce cellular energy from glucose, known as ATP.  That's as detailed as I can remember right now.  However, you can imagine there are a multitude of complications that can arise if the cells are not able to produce enough usable energy.  So, that's where we are on the lab tests. In the event everything comes back normal, we do have options.  The docs didn't go into them yet, to prevent overwhelming us again until it's necessary.  Further steps will likely involve both Lindsay and I having blood drawn to analyze against Bentley's, and a few more genetic mapping things.  The docs kept it brief. Sorry, I don't know more.  

As you can imagine, having results return as normal is great.  Of course at the same time we want answers.  I am someone who always wants to understand the why.  Unfortunately, it may end up that we don't have a definite answer.  That is incredibly frustrating and even more fascinating.  We have been told that just because we find nothing, that doesn't rule out some of the muscular dystrophies or other issues.  It just means we can't find the known genetic markers.  However, I'll take a lot more normal results and give thanks!  Some minor abnormality at the cellular level, in addition to the hearing and vision problems is enough for me.  We'll keep praying that's all we have to deal with.  

As I mentioned previously, we are off the oxygen.  All of that equipment is being picked tomorrow.  Bentley was a whopping 12 lbs. at the genetics appt.  That's huge in our world.  We are still doing the night tube feeds but are slowly reducing the amount we give her, thanks to better intake of real food during the day.  We are hitting all our caloric targets.  Including me.  Fatherhood can pack it on!

We are on hiatus from The Bell Center for a few weeks, so I am doing our activities at home.  She is almost holding her head up on her own.  Her abs are getting stronger too.  She is getting better and better at sitting up.  We practice many times per day.  She’s figured out that when we are sitting up eating, when I tap her chin it means “open up a spoon is coming.”  That’s pretty cool.  She also knows she does not like green beans.  Baby food green beans taste terrible, so I don’t blame her.  She still loves playing naked and holding her feet!  It’s just the cutest thing ever, maybe even cuter than a puppy.

Thanks to Mimi and Pop for watching B over the weekend.  We had our first weekend where both of us were away.  It was nice to spend some time together without worrying about the next feeding or changing a diaper.  We went to Albany, GA for the awesome wedding of Wadley and Carrie.  Can't wait for them to have a kid to so we can go to Disney World together.  No pressure you two;)

I think that's it for now.  For those of you who are interested, you can now subscribe to an email list and I will send you an email notifying you of when I make a new update. This way you won't have to randomly check the site.  I may get over my blogophobia when we move, and share it on Facebook, but don't bank on it.  This is nothing fancy, so it will be nothing more than an email with a link in it.  There will be no spam or junk in it.  Although, SPAM is tasty.  Click here to be added to the list.  You will receive the emails from hearbentley@gmail.com.  Keep praying, Bentley needs it and Lindsay needs it. God answers prayers even if it's not in the way or time we are expecting.