1 oxygen compressor/condensor thingy
6 oxygen tanks
1 O2 saturation monitor
1 nebulizer machine do-dad
1 feeding pump
1 iv pole
A wagon full of accessories and attachments.

This is the goody bag we are leaving the hospital with! I know, right?!  It's ok, you can be jealous.  All you probably get when you leave is a receipt for your ER copay.  If you stay in the hospital for 9 days, you get fun stuff like this.

We go home today.  We haven't left yet, but the docs came by and confirmed we get to leave.  So, what has happened since...

The doctor team really took on a new approach from saturday to sunday.  They realized this is a bigger situation than we all origianlly thought.  Due to Bentley's muscle weakness and lack of a strong desire to eat everything we need to give her, her ability to recover from this lung thing was impacted.  We have started, and will continue, rigorous respiratory therapy stuff.  Mainly in the form of nebulizer treatments, and chest PT.  The congestion and inflamation from her bronchiolitis inhibits gas exchange in her lungs.  This is why we are going home on oxygen and continuing those therapies for now.  The oxygen should be a relatively temporary thing.  But as all our docs have reaffirmed, this could take weeks or months to recover from, even for a baby without some of her possible probs.  

Nutrition-wise, we need to monitor B's caloric intake.  We have gone from the 50th percentile down to less than 3rd percentile.  Remember those bell curves you studied back in school, yeah, she's down on the lower left corner where it's really small.  We need to get her back up.  So B has a Nasogastric tube in place.  This is a small tube the size of a spaghetti noodle going through her nose into her stomach.  We will supplement anything she doesn't consume by mouth through the tube.  Ex: We have a target of 5oz per bottle, if she takes 3oz from her bottle and stops, we give the remaining 2oz through tube.  Plus overnight continuous feedings to help build her back up.  Idealy this will be a temporary thing too.  To help her get back to where she needs to be.  Although, our team of docs seem to think it may be more long term.  We have already discussed the plan for a gastric tube, if it becomes a necessity.  

The learning curve on all of this is sort of steep for a couple members of our family (Lindsay, haha).  But she's smart, she'll figure it out.  I'm not a patient teacher though, so pray that I will understand the disconnect there.  Right now we are working on converting units of measure, i.e. 1oz = 30ml.  Yes, we are starting slow, but I guess if you don't use it you lose it? even for the very basics.  hahaha, I love my wife.

I have to give a big shout out to our doctors, nurses, and respiratory therapists here at Children's.  They have been great.  We've had awesome care.  Multiple nurses deserve the Daisy Award.  I love having a team of residents coming in.  One of them stops by many times per day.  And you have a chance to teach them something.Our attending doc has been fantastic and the residents and interns have probably learned as much about deaf and blind babies as we have about babies on oxygen and tube feeds.  Lindsay has done a good job of letting them know things work deferently with B, focusing on her need for consistency and routine.  The RT's here have really impressed me as well.  

Well, our lives keep changing.  A week and a half ago I had a very different outlook for the months of April, May, and June.  Today I know flexibility is an understatement.  Adjustment is daily.  Sanity is relative.  Our reality is ours.  We must rely on each other and our friends and family more than ever.  Thank you, in advance, for what we may ask for.  

Snakes and airplanes, that's what scares me.  Having the privilege to be my child's nurse, shoot, that's just fun!

I was going to wait until we got home to post about the hospital, but I needed to procrastinate on a project, so here we go......

-Thursday-----Well, we've had our first ED experience.  Bentley hasn't eaten great ever since the biopsy.  She's been very congested and had a terribly nasty cough.  I just want to NT suction her (that's when you stick a tube down her nose and suck all that snot and phlegm out of her throat).  Over the past couple of days she has hardly eaten a thing.  A couple ounces here, a couple ounces there.  Not nearly enough for a kid we are basically having to feed protein shakes so she can gain weight.  It finally started to catch up with her.  I could only get an ounce or two down her yesterday, and then after I left Lindsay couldn't get her to take anything.  Once Lindsay called the pediatricians office all it took was the nurse hearing Bentley breathing through the phone and she said to head on to the hospital. 

Conveniently all this occurred during my marketing class last night.  I left right after it ended.  We got to spend a few hours in the ED.  They got some IV fluids going and admitted us for the evening.  A great night's sleep, as you can imagine.  Bentley actually slept like a rock, she was pooped.  Now we're just waiting to go home.  The cough and congestion hasn't cleared, and she's still on a little O2, but she should perk up soon.  No worries.  

A friend shared this poem with me today.  She has a child with awesome needs as well, this pretty much sums it up.  -I may do a revised version one day, but this one works for now.-  We'll see if I ever fly that airlines again....Although Holland is pretty this time of year.   Welcome to Holland

-Friday Evening-----So in true Justin form, I am not keeping this in real-time.  Now it's going on our third night in Children's.  Last night Mom and Lindsay stayed here while I went home and slept.  Tonight I sent Lindsay home so she can get some sleep.  They said nobody slept last night.  Mom probably fell asleep on the drive back to our house.

Still trying to get the oxygen off of Bentley.  She's not any less congested than when we got here.  However, she does look a lot better.  Yesterday she looked terrible.  I'm pretty sure she was running a fever all day long, but her temperature said another thing ---it could have been due to the method they were using to check her temperature, but what do I know? Treat the monitor not the patient, right? hahaha (that's incorrect) --- today the temp is gone, she feels more "normal" and she doesn't have that sick look to her.  She's still not eating well.  Her stomach doesn't seem to like formula right now.  Oxygen on 1/4 L/min (i didn't even know you could measure it at such a low rate) and apparently that's the sweet spot.  Turn it off and her sats drop to the 70s.  Craziness.  Well, let's see how this night goes....

Sunday night --- So it's now heading into night number 5 at the Children's of Alabama.  Did I mention we're in the old building?  It's not as cool is if we were in the new one.  I feel like we're living in a closet.  No real improvement to her breathing.  Same ole, same ole.  While Ken was pulling night shift last night, the repiratory therapist started NT suctioning her!!!!! We've been requesting it all day.  It only helps for an hour or so, but its way better than without it.  I've learned that they can do pretty much anything to a baby I can do to an adult.  I feel like an idiot, but maybe being on this side of things makes you think slower, or just think differently.  Whatever it is, I know I should have been pushing for a little more aggressive treatment from the beginning.  Honestly, I think my thought process was along that of the ER's and the docs we we were admitted to.  I didn't think it was anything that serious.  I just wanted her to get the nutrition she needed.  We've realized there is a little more going on than meets the eye.

Monday night, the 22nd --- night #6 in the hospital.  I'm taking night shift again.  Mom stayed up here last night.  We've made a lot of progress in the last 24-48 hrs.  Not in the sense that Bentley is breathing better, but the docs here are getting a better grasp on the big picture.  We still have a ways to go, but they have realized, that this baby is special, and there are more things playing into all of this than just a little respiratory thing.  

Had a swallow study this morning.  They saw that she wasn't really aspirating, but felt as though she might if watched for a longer period of time.  I'm sure the lady administering the study didn't word it this way, but Lindsay interpreted her comments about the study as "You've been drowning your baby every time you feed her."  Just what you want to hear-- "your killing your kid."  --That doesn't help a momma who's already been in the hospital 5 days, has a blind and deaf baby, and maybe some other things going on.  ---Again, I'm not saying the speech pathologist said those words, that's just how Lindsay interpreted whatever it was she did say.---  

I also love it when people who should have probably looked over certain details in the chart reveal that they haven't.  Like when they say "oops, i won't talk so loud, she's trying to sleep."  HAHAHAAH I want to say "BUSTED"

The admitting team consulted pulmonology.  The pulmonologist had some good thoughts, and he was great talking with Lindsay about some of the options we're looking at. In addition they all read and watched the study.  They felt as though she was not aspirating but was doing a lot of work for a relatively small return, as compared to a normal kid.  We've known that for a while.  She'll suck that bottle for an hour and get nothing if you have the wrong sized nipple on there.  So in another attempt at figuring out the perfect nipple size/formula thickness combo, mom bought out Buy Buy Baby's Dr. Brown nipples (this is literally the only nipple brand she will suck, we've tried them all), and we went to the lab (no lab, just started experimenting).  Think we may have found one that works.

Next on the agenda, talk to the docs in the morning and decide what's next.  We have a few options to think about tonight, ask questions about tomorrow, and take action with our decisions.  I won't get into all the things we're discussing but in summary, we may be going home with a few new things that don't sit too well with Lindsay.  I completely understand her emotions surrounding them.  If you read that poem then you do too, remember, she thought we were going to Italy.  However, I'm encouraged by it.  I want to be doing something.  I don't like this sitting and just waiting it out.  Something is better than nothing.  But, sometimes taking action can feel like taking steps backward, and I'm afraid that's how Lindsay sees it.  

I'll be honest, this is when I really wish Dad was here to offer some advice.  I'm confident in my decision making ability, but he was just so smart in situations like this.  Most of all, he would have seen this a week ago.  He picked up on things so much faster than most people.  Fortunately mom falls in love with smart men.  Ken is a Veterinarian, and they operate a little differently than people doctors.  His brain is not bound by some of the same constraints, allowing him to think outside the box a little more.  This is great because it helps me to make sure I'm covering all the bases, and ask questions I may not have thought of or just forgot about over the past few days.  I like having people smarter than me to consult with.  It makes my job easier.

Ok, back to my marketing project.  Oh, and don't tell Lindsay's parents any of this.  They actually are in Italy right now and don't know we're in the hospital.  HAHAHA sneaky sneaky.

Sorry I got long winded.

As I sat on the couch giggling at Justin’s BLOG SPOT (HA HA HA), I thought “did we attend the same doc appointment, are we living the same life?” I realized it was time I cyber-up and put my own post out there for the world to see. I will try to give a shortened version so you don’t have to hear our rambling twice. 

After a night of worry and prayer because my sweet baby was going to be put to sleep for the second time this month (knowing she has one more time in May), we got up around 4 to rush out the door to make our 5:30 appointment. Now, I wouldn’t say punctuality is a strength of ours, but dang it if we weren’t on time! B was given the first appointment because she is young and if she has MD there are several risk factors for her if she gets certain kinds of anesthesia. Yes, the anesthesiologist was so nice and goofy. However, when he made a comment about something borderline inappropriate it makes you take a second look and hold your baby a little tighter. I giggle again knowing Justin compared himself to the guy! Children’s was super nice to make us wait over two hours to get the party started. It was like sitting on an airplane when they announce your plane is having a technical difficulty but want you to "hang tight." Lots of time to let my cold, tired, hungry and non-showered mind run wild! Lots of time trying to keep B busy so she doesn’t realize how hungry she was! About 7:45 I’m pretty sure B wondered if I ate a can of spinach as my death grip on her tightened. What she couldn’t see was that a strange man was walking in to pry her from my arms and carry her away for surgery. This is the part that really sucker punches me because most parents can say “bye-bye baby, I love you,” or at least their little one gets to see mommy and daddy saying bye bye and blowing kisses…. Nope, not my snuggle bunny.

Now we wait again….. Two hours later a completely different face pops in to say, “Bentley isn’t waking up. Her oxygen levels are low. So, we need you to come get her moving.” The door shuts and the crocodile tears appear. What do they mean she won’t wake up??? After the MRI she woke up relatively fast. We got moved to a different area to try and wake B up. They bring out our sleeping beauty with a new 12 foot long wound (looked like they put a golf ball under her skin) and 50 tubes coming out of her (croc tears turned to a steady stream!). After fearfully watching the monitor and moving B around for an hour, she let out a few cries and got her oxygen levels up. For the record, an hour is an eternity when you are trying to wake up your 5 month old! Several times through this process it was mentioned that we may have to spend the night for overnight observation.

Long story longer, B woke up and was smiling by the time we got back to the room! I could breathe again! When she smiles I like to think God is sharing something special with her, or Bill (Justin’s dad) is sharing funny stories about Justin growing up (we know there has to be a million, he is a funny guy). Now we just hold on and wait for the CT scan in May. I love hospitals! In all seriousness, Children’s has been nothing but wonderful and their quality care is 100%! I always wish my sweet B could see the brightly colored halls and how fun her hospital gowns are! Making it a more tactile experience would be my only suggestion for the perfect place.

So you see that it is best that my wonderful, strong and positive husband continues to make the post. I like the pictures that Justin paints way more than my reality. It is ironic because I’m the one that typically paints the rainbows and shoves out sunshine. Justin never puts it out there how unfair it is that my precious innocent B will never wake up to her mother’s comforting face or her daddy’s silly looks. He never mentions how it’s like a sucker punch every time a kid lights up and screams “MOMM/DADDY” because they SEE or HEAR them. Ok- I’ll stop. Everyone go hug your babies, young or old. Put down your iPhones and get off Facebook to go have a conversation with and play with your kid that can run free and say "momma, watch this," and "look at this.” If my angel has taught me anything it’s don’t take the little things for granted. This has brought "don’t sweat the small stuff" to a whole new level!!

We do agree on one thing. If you ever have questions and want to ask about her, please do. Those that know me would agree that I’m a bit old school when it comes to communicating. I’m also very private. Not that I frown on my Facebook/texting/twiterized/instagramming friends, but call me, lets gets dinner, go for a walk or sit in sweats with a bottle of wine and a yummy snack and sit down to chat in person. Sitting with an old friend in a Mexican restaurant with cheese dip  helped me survive last week….. again, the simple things. I’ll warn you though, if one more person says, “how are you?" They might just get the real answer. How do you think I’m doing? As a friend told me, "I’m good enough." The more people on this crazy ride the better…. I’d rather rent a stretch limo than a Mo-ped. Know what I mean Vern? The letters, meals, and prayers we have gotten mean the world to us and help me feel a little less alone on the bad days. God is good and I am reminded of that every time someone reaches out or my sweet girl touches my face and smiles. Justin and I will be fine, God assures me of that.  He is my Ninja!

The muscle biopsy.

Another early morning awaiting anesthesia.  We woke up around 4 to give Bentley some fluids prior to surgery.  Arrived at Children's around 530 to a spunky little kid who was exstatic about getting pins removed from his arm.  For real though.  He was so excited because "they are going to fix me."  It was funny.  This kid was running around the waiting room barefoot and still in his pj's.  I miss those days.

Bentley was actually happy as could be.  She was in a great mood.  A little sleepy, but happy because I slept in her room with her that night:)  We were pumped at the thought Bentley was the first case of the day.  However, we didn't realize they start later on Tuesdays, so cut-time was scheduled for 745.  It's a good thing we were there so early (sarcasm).  Let's be honest, the problem isn't the wait.  The problem is we were hungry!  

The anesthesiologist came by while we were waiting, he was a goofy guy.  The perfect doc for a Children's Hospital.  I think we could be friends.

Well, they finally did come take Bentley from us.  It was kind of sweet though, because the nurse just carried her away.  He didn't put her on a stretcher or anything.  It just kind of made it feel like they cared a little more.  The procedure went well.  It really didn't take all that long.  The only hangup came in recovery.  Bentley likes Diprivan.  She was really enjoying the sleep it gave her and didn't want to wake up.  We had to hangout another hour or so to make sure she was breathing well and alert and all.  No worries.  The recovery nurse was great.  She is awaiting the return of her husband who has been in Afghanistan for almost a year.  He is in the Army.  

Bentley's been a champ with her incision.  She's shown no signs of pain or soreness. She's so tuff.  Must be a Bryant.  Now we just wait for the results.  Like I may have said previously, we have a month or five to wait for results.  The samples were going to be sent to Cincinnati and Duke.  I guess they are a little backed up.  We are still learning more about cochlear implants.  Bentley starts speech therapy in a couple of weeks.  Our Hand In Hand therapist made us a resonance board for Bentley to play on.  She is awesome (the therapist).  When you put Bentley on it and tap it she can feel the vibrations.  It's really cool.  Lots of learning potential with it.  Thanks Hand in Hand.  The Bell Center is still going great.  Don't forget about the corn-hole tourney at Avondale on April 27th.

I also wanted to add, if anyone has a question please don't hesitate to ask.  It's not awkward, or weird, or emotional, or going to make us cry.  If your kid had hearing aids I would not hesitate to ask a thousand questions.  So don't worry about asking us anything.  We love talking about it.  Thanks for the continued prayers.  CT scan in May.  later taters.

We went out to the Indy race at Barber Motorsports Park last weekend.  It was a ton of fun.  As we were walking up we saw my sister walking with a crew of people.  At second glance she was escorting Bo Jackson.  BO JACKSON! The man who I still have an autographed poster of in my "man cave."  I got the autograph at an A-day game when I was 2 or 3 years old.  BO JACKSON.  So cool.  Jess brought him over and he took a pic with us.  It was awesome.  

So during the Indy practice days in March, Jessica was holding Bentley and ran into Helio Castroneves.  Well, being the gentleman he is, he wanted to find Bentley hearing protection. Jess proceded to tell him about her being deaf and blind and that was why we weren't covering her ears (it was not nearly as loud as at the actual race because fewer cars were on the track at once. I know we need to still protect her from super loud noises.  We don't want to damage her ear drum or something like that.).  Anyways, one of the first days the teams were back in Birmingham last week Helio found Jess and asked about Bentley.  He said he and his family had been praying for her, and he wanted an update.  SO COOL.  Very awesome.  This big time race car driver not only remembered the child, but remembered her name, and had told his family about her.  Following the race on Sunday we got the opportunity to meet Helio.  He and his family.  They were very nice.  We really enjoyed it.  Of course we took a picture.  Not a very good one, but still, it's a picture with Helio Castroneves.

I almost forgot the best part.  We were up in the paddock during pre-race festivities, and during the race.  Bentley had her hearing aids in.  Well, when the Bo said "gentlemen start your engines" we were right up above pit road where all of the cars are parked.  All of a sudden there was a big VROOM.  As all the drivers were revving their engines, you could feel the vibrations through the floor and steel girders along the wall.  Almost instantaneously Bentley's face lit up! We don't know if it was Bentley actually hearing the sound of the engines magnified by her hearing aids, or feeling all of the vibrations.  Either way, it was awesome.  She was smiling so big for the few minutes the cars were sitting there.  Don't worry, as the race started up and things got really loud we turned off the hearing aids and let them act as earplugs.  I think we need to take her to 'dega!

Isn't she so stinkin cute?  This week has been fairly chill...

After leaving our meeting with the neurologist last week we knew a muscle biopsy was going to be on the schedule soon.  After the surgeon’s office called to schedule an appointment for this past Tuesday, we couldn’t believe how fast they had gotten us on the schedule.  Unfortunately, it was a false alarm.  I was curious as to why anesthesia never called to give us a heads up for preop stuff on Monday.  It was because all we were doing was going to meet the surgeon and learn about what the biopsy entailed.  This was nice, but if the office had told us that Lindsay wouldn’t have taken the day off of work and I would have gone to class.  So, now we have the biopsy scheduled for next Tuesday, April 9th.  Bentley will have to be put under anesthesia again, like the MRI, and the procedure should last an hour or so.  He will take a nice little snippet of her thigh muscle.  Anesthesia twice in a month’s time is kind of nerve-racking, even for me.  I’m excited for the test results, but not to eat the expensive breakfast sandwich this soon after the last one.  

Today was our first true speech therapy visit at the HEAR Center.  It was more of an evaluation day.  To see how Bentley is tolerating her hearing aids and find out how she is progressing developmentally.  We also learned a lot more about this “journey” towards cochlear implants.  However, the best part of the day was hooking Bentley’s hearing aids up to a machine that reduced the amount of feedback they receive!!!!! Now only the right side squeals, and not like a stuck pig, more like a pig talking in its sleep.  

The speech therapist was great.  She wanted to know all about Bentley’s sleeping and eating habits.  She wanted to know about her activity during the day.  She is also evaluating me and Lindsay.  There is an “environmental” component to cochlear implant candidacy.  The powers-that-be need sufficient evidence that we are committed for the long haul.  Leading up to implantation, Bentley will need speech therapy at least every other week at the HEAR Center.  This could become weekly, depending on how she does.  We have to show that we will commit to this regimen as well as doing our homework. The therapists haven’t said this, but I think the hearing aids are more like training wheels for the implants.  The hearing aids allow us to get used to taking care of this devise that is attached to our child at all times.  I haven’t found an estimated retail price of the implant’s processor, but I imagine it’s expensive.  Not the sort of thing you want to accidently step on, wash, or leave sitting on the bumper of your mom’s car.  Good thing Jarod didn’t need a set of these when he was little.  Back to the regimen….One thing that concerned me and Lindsay is Bentley’s need for a level of communication prior to implantation.  Usually this would be a visual cue such as reading lips, hand signals, or simply turning her head toward what sounds she can hear, or light she can see.  Well, Bentley won’t be reading my lips anytime soon, so that is out.  Hand signals from a distance, NOPE.  Morse Code with a strobe light, nuh uh.    So we have to use touch or tactile means of communicating.  But then the “what if” game starts: 

What if she’s got a cognitive learning disability? 

What if she has muscular dystrophy and that affects it? 

What if she has the attention span of her father? 

What if I leave her in the grocery store? – oops, wrong “what if” game.

Could one of these factors prevent her from getting implants? I could ask so many questions, and most aren’t even relevant yet.  

Following implantation therapy can become more frequent.  At that point we have to teach Bentley’s brain how to hear (if she has heard absolutely nothing at that point), and what sounds are and mean.  They say that she should have some level of hearing prior to implantation, it’s just the matter of figuring out how to tap into that level of sound and training it.  The YouTube videos make it look like all you have to do is flip a switch.  Apparently there is a little more to it than that. 

The fun part, at least to me, is that I have three brands of implants to choose from.  I feel like I’m car shopping.  I’ve got brochures, dvds, and websites to look at.  Each one claiming their implant is the best.  We’ll see.  They now offer many accessories and colors.  Some are even waterproof.  If you can’t tell, I’m excited!!!  I basically get to pick out the most expensive and awesome set of headphones for my daughter.  “Your kid has Beats by Dre, my kid’s headphones will be attached to her brain! BOOM (with hand gestures)”

Well, I guess I’ll stop now.  Muscle biopsy Tuesday.  Oh yeah, I just learned there is going to be a cornhole tournament at Avondale Brewery on April 27th supporting The Bell Center, in case you want a fun afternoon tossing beanbags.

I’ll throw in an update soon about when the Texas and Nashville Bryants and the North Carolina Owens came to visit Bentley.  It was fun.