Fear not

One of my customers once told me that "fear not" or variations of that (need not worry, do not be afraid, etc etc) show up in the bible 365 times.  One for every day of the year.  So there is no reason for me to tell you too.  We are doing well.  I think my dad (pictured above) is even somewhat relaxing.  Its only been 6 days and we are whipped. 
Benzen is doing great.  He gained half an ounce today, which is a lot better than it sounds.  Gaining even that little weight is better than losing or even staying the same.  Its nice that he is such a chill little guy.  He barely makes a peep.  He is off of the photo therapy lights and billy blanket.  What that means is he is eating properly and going to the bathroom properly.  Basically getting rid of the bilirubin left in his system from birth  There are milestones that children will reach that we all take advantage of.  For example Benzen was having trouble feeding and regulating his own body temperature.  I made my first huge mistake as his dad.  I let the doctors get to me.  Because, in my mind I was thinking "maybe where the abnormalities are in the MRI of his brain are his feeding and temperature centers."  I didn't even give him a chance.  Amy by the way had full faith in him the whole way.  With in one day, he was eating great and regulating his own body temperature.  Needless to say I learned from my mistake and it will NEVER happen again.  He is a couple days old and already making me so proud!
Tonight is tough for me.  I am at home.  As much as Benzen needs me, Beyla needs me too.  I loved going through her bedtime routine with her tonight.  We facetimed Amy at the hospital and she was able to watch the whole routine.  Thank you Apple!  It really does feel like this house is missing something.  Our new addition and momma are not here.  Now that I see our house it makes me want him home more.  I don't want to do this but can't help it.  I look around and see the stairway leading to our basement.  Will Benzen have trouble with them?  Are our hallways to narrow or corners to sharp?  Time will tell and just like the feeding and body temperature thing.  Do not underestimate him.
Lastly,  Please take the time to pray for a very close friend of mine and retired pastor of Faith Lutheran Church, Brian Haller.  He is a huge reason I am who I am today.  He is battling cancer.  I can not wait to sit down and have a chat with him.  With the Chemo he is on, it is not a good idea for him to come up to the hospital or be exposed to any outside germs. 
Lastly Lastly, We have received more food, gifts, and gift cards.  You all are amazing!  Betsy - Thank you sooo much for taking charge in the "Baby Benzen" facebook page.  I just found out about this and am truly humbled.  Betsy, how can people find this page?  Not just Betsy though I can't believe all of the love and support.  You are all making the next six weeks so much less stressful for my wife and I.
Lastly Lastly Lastly, if there is anything I can do for anyone reading this.  Let me know.  Here is the part where I give you another "my dad always told me."  my dad always told me to "pay it forward" You guys are all paying it forward for something someone has done for you.  Now that you have done something for me, I am going to pay each prayer, gift, or kind word forward.  You can count on that!
I can't stop writing, so here's a good stopping point.  Mostly because Amy is at the hospital and wants to read this before bed.  I didn't proof read, so pardon any errors.
Good night everybody,
Ben

Fathers eyes

I am going to tread lightly with this.  I saw this picture and immediately thought of the song "my fathers eyes" by Eric Clapton.  The reason for treading lightly is one of my very best friends just lost his father in December.  I was devastated for my friend because he and his dad were best friends, as my dad and I are best friends.  I could not do this with out him.  I have heard and read all of the unimaginably nice things everyone has said about me.  If you get a chance look into my fathers eyes and see if you see where I got it.   I bet you do.  I look at this picture and I see my son looking into my eyes and his expression to me says something like "OK dad whats next?  We've gotten this far.  I don't care what it is, we will do it...TOGETHER." My response is "tell me all of your hopes and all of your dreams, and I will get US there."
Today was a relatively quite day for Benzen.  He has been under photo therapy for about two days now.  He looks much better and he is much more active.  He also is eating better.  He gained 4.75 ounces in the last 12-24 hours.  I'll be glad when he is done with it.  Really, no test results came in, no tests were done, his vitals are great, and his blood work looks good.
I don't know if I mentioned this but the medicine Benzen is on (Ganciclovir) is just a notch below Chemotherapy.  One of Benzen's guest today was my God mother Marty Perkins.  I had heard Marty was coming and I was so excited!  She is a breast cancer survivor, strong person, and always a joy to be around.  More importantly someone that could relate to the medicine Benzen is getting.  As soon as she held him there was an immediate eternal bond.
My 24 hour feel bad for yourself time was up this morning.  I am really excited about what my new path has in store for me.  Marty asked me today if I wished I could speed up time.  I think my response was something like "as long as there is no more bad news, but no I would not"  I think Benzen is where he needs to be.  He needs to relax, get this medicine, and take things slow.  We could not really do that at home.  Another thing my dad always told us was "feel the time."  Meaning there are moments in our lives we think will last forever but they are over in the blink of an eye.  So take it all in while your in the moment.
Thanks for all the love and support-I feel it all!
Ben

Karma

Most of you know that Amy and I have dedicated a lot of time to keep R Angel going.  Not only to keep her in the forefront of our minds but mostly to help people.  We have been stocking the 5th floor shower rooms with bathroom baskets and sending food baskets there for almost 4 years.  Why did Amy and I end up in the NICU?  I thought my Karma was mixed up.  Especial when I went up there to shower and it is closed for the next 6 weeks.  Too ironic
Well, I do not have all the details yet but my sister Ashley showed up to the hospital with R Angel like baskets from people in our community.  I couldn't believe it!  It was such a strange feeling to be on the receiving end of it.  I was overwhelmed with emotion.  This is true Karma.  We truly truly appreciate it.    I may be calling some of you to do some pro-bono work at R Angel because the baskets looked so good!

Thank you everybody!
Ben & Amy

MRI Results

The MRI results that we have been waiting for are in.  They are not good.  He has calcifications in his brain as well as abnormal parts of the white and grey matter that make up a brain.  White matter makes up motor skills and grey matter is cognitive.  We also learned that he currently has a heart defect.  A very minor defect but its there.  Benzen will never be a "typical" boy.  What I mean to say and what they tell me is "only time will tell."  I'll tell you he will have the best opportunities in life living with Amy, Beyla, and I.  Its a challenge we were chosen for and we except.  
I have gotten a lot of bad news in my short life so far.  Getting the news today that my first born son and my families last name legacy will most likely have mental retardation was another sucker punch to the stomach.  Especially when you look at baby Benzen, he is perfect.  In 3 days, I have learned more from him and love him more than one should in that short span.  My dad always told me "you only get 24 hours to feel bad for yourself."  I am sure this is an exception but I don't want the exception.  I'll take my 24 hours.  Then its back to being the best dad and husband I can be.  There is a lot of negativity in this world that I don't want to be apart of. 
I once asked my grandpa Bob how he was feeling.  He said "I am 100%, but at this age, I have a new 100%."  That holds true for me.  I am 100% but it is a new 100%.  I am ready for my new 100%. 
Benzen will be in the NICU for 6 weeks.  As I sit here looking into his little crib where he is currently under photo therapy and just past him Amy asleep on the little couch, I want to be able to take them both home now.  Where we can be with Beyla and start our new life together.  Every parent says it about their kids I know but I think Beyla is slightly advanced to not only communicate with Benzen but help him through life.  We all may have to learn sign language to communicate with Benzen, and I know Beyla can learn that.  She is going to be great with him. 
Anyway, when Remi was in the hospital I tried to give a song that I draw inspiration from.  The first one for Benzen is a love song that I obviously was able to relate to my life.  It was sung by Jamar Roger on the show The Voice.  Its called "I want to know what love it."  This song was originally done by Foreigner.  The only way I know to get the Jamar Rogers version is Itunes.  I assure you its worth it.  These are the words I sit and say to myself looking into Benzen's crib. 

Lyrics:
 I gotta take a little time
A little time to think things over
I better read between the lines
In case I need it when I'm older

Now this mountain I must climb
Feels like a world upon my shoulders
I through the clouds I see love shine
It keeps me warm as life grows colder

In my life there's been heartache and pain
I don't know if I can face it again
Can't stop now, I've traveled so far
To change this lonely life

I wanna know what love is
I want you to show me
I wanna feel what love is
I know you can show me

I'm gonna take a little time
A little time to look around me
I've got nowhere left to hide
It looks like love has finally found me

In my life there's been heartache and pain
I don't know if I can face it again
I can't stop now, I've traveled so far
To change this lonely life

I wanna know what love is
I want you to show me
I wanna feel what love is
I know you can show me

I wanna know what love is
I want you to show me
And I wanna feel, I want to feel what love is
And I know, I know you can show me

Hi everybody,
Here we are again.  Just as before with little Remi, I will try to update this as frequently as possible.  I think this is the best way to keep everybody in the loop.  Amy and Benzen are both well.  We are waiting on some test results to let us know what the CMV has done to Benzen.  Beyla was here yesterday and she is becoming a trip.  Thank you all for the FB messages, posts, re posts, tags, and more.  I love to read them all, so keep them coming and you can even comment on these blog entries.  Thank you to all for the support and kind words. 
The formatting is off a little if you are accessing from a smart gadget. you can either go to the bottom and click view web view or  on iPhone click the post and the whole thing comes up. 
This was a good starting point I'll update again soon.
Have a good day!
Ben

First update on Benzen

                Benzen was exposed to CMV (google it) we think at about 15 weeks gestation.  It  was fluke that the doctor found the CMV at all.  At our twenty week ultrasound Benzen had an enlarged ventricle in his brain, a prominent pulmonary artery, and pelvic kidney.  CMV is very common.  To a human you may feel flu like symptoms.  To a fetus, it is devastating.  The side effects are hearing loss, complete deafness, learning delays, mental retardation, and more.  In the 3 trimesters of pregnancy it is the worst to get it in the first trimester, still bad in the second, and not so bad in the third.  Also, the severity depends on if the mother has had CMV in her life.  If she has had it before it is less likely she will transfer it to the fetus.  Well, Amy has never had CMV before and Benzen got it in the first trimester.  The worst possible scenario.  The only thing to do was a clinical drug trial called Cytogam.  The Cytogam research stated that of 32 women that took the dose only 1 fetus showed CMV signs at birth.   Pretty good odds right?  Well we did it TWICE and we now know he was born with CMV symptoms.

                He was born May 1st at 11:50 pm.  Physically he was perfect.  We did not know what was in store.  All of our fears from the pregnancy were put at ease that night when everyone told us he was perfect.  It was not until the next morning when they told us he was fine again, that I had some questions.  They induced Amy at 37 weeks due to the enlarged ventricles.  So I asked.  "Shouldn't we check the size of the ventricle?"  The doc said "that might not be a bad idea."  After an ultra sound on his brain, I received a call from Dr. G choked up he said "They found some abnormalities on his brain scan, it does not look good."  It turns out the ventricles were surrounded by calcifications showing us that the virus did affect him.

                This leads us to where we are now, the NICU.  We will be here for 6 weeks while they administer Ganciclovir, a medicine to help decrease the severity of hearing loss and possible vision problems.  He passed his BAER hearing test and we are now waiting on the results of his MRI from this morning. This is a very short synopsis of our very long and bumpy ride.   He is the cutest little guy and by looking at him you could not tell anything was wrong.