Happy to be home

We have been home now for 3 days.  We are having a blast.  Benz is such a good little guy and Beyla absolutely loves him.  Every five minutes she says "I wanna kiss hims head".  She is so sweet to him.  She wants him to lay on the ground with her, sit at her card table, and basically just do what ever she is doing.  The first day home Beyla was amazed when I got her out of her crib in the morning and brought her into Amy and I's room, that Amy was finally home.  Then she heard Benzen grunt and was so happy. 
We have to give Benz Valganciclovir twice a day.  We give it to him at 9 am and 9 pm everyday.  It must taste OK because he drinks it just fine every time.  He has to have his blood drawn twice a week.  On Monday was his first blood draw and he will have another on Thursday.  His first blood work told us that his neutrophil number went up to 6600 remember this is the number that was at 200 but is supposed to be 25,000.  His neutrophil number is going up and we have not been giving him the neupogen in 4 or 5 days.  That is good news.  You would not know he has CMV if you met him, Amy and I forget everyday.  He is just too perfect.  If something show up in the future, we will cross that bridge then.  As for now we are living it up with him home.
Yes we are home from the hospital which is great.  However we do have a doctors appointment just about everyday.  He has to see the Infectious Disease doctor, Ophthalmologist, Cardiologist, Pediatrician, Neurologist, Audiologist, and more plus do his blood draws.  This is the start of a new life for Amy and I. This will be a challenge to say the least, but to us more like an honor and a privilege.  My favorite bible verse is Matthew 25:35-40, a brief description is here ( http://www.biblegateway.com/passage/?search=Matthew+25%3A35-40&version=NIV).  Basically, we are all Gods people and we all should treat other that way.  I can't wait to raise Benz.  I have already learned so much about myself and learn more everyday.  I can't wait for you all to meet him and when you do he will change your life.  When he gets the go ahead to be around people again we will have to get a calendar to keep all of his appointments with his new friends.
Good night!
Ben

Home Sweet Home!

 

Where to begin?  Two days ago the doctors agreed to give Benz the GCSF to bring his neutrophil number up.  They gave it to him when his was 300, keep in mind the normal range is from 5,000 to 25,000.  The day after they gave it to him his number went to 1,300.  They gave it again yesterday and today his number was 5,000 - which is a great improvement.  So, Thursday I left work early because I was worried sick about Benz and Amy, Friday we had what we know now as our last slumber party in the hospital, Saturday we took Beyla to the mall then went back to the hospital, and today found out we would get to come home.  It's just all been such a roller coaster ride.  Sunday(today) was Beyla's day to visit Benz in the hospital.  I drove her up to the hospital at 10:00 am.  When we got there Amy said "look Beyla it's Benzen.  Do you want to take him home...today?"  I couldn't even respond.  I was overjoyed but could not even react to the news.  I was flooded with questions in my mind, I was truly unprepared for this day to come so soon.  After a long discharge and four trips to the car to unload our room of all our belongings and goodie bags (in flip flops), we put both kids in their car seats and headed for home.  The whole way home I would look at Amy and say "I feel like we just broke out of prison or something."  We both just had very weird sensations.  

After we got home we decided to surprise our families.  So that meant I had to put all of our stuff from our hospital room away in about a half hour/hour.  Amy's parents got here first.  I stood and talked with them in the living room and pretended to work on our "broken" video camera until Amy walked out carrying Benzen.  They were shocked and overjoyed.  Then my parents came over and we surprised them in a similar fashion.  Needless to say they were so excited as well.  

Now that we are home we have to give Benz Valganciclovir twice a day for the next 24 days.  We also have to take him to a promedica lab to get a CBC (complete blood count) every couple days and will have several doctor's appointments each week.  His visitors are still limited to immediate family and still no kids.  As soon as the medicine is done Benz would love to meet you all, as long as you wash your hands.  

The power of prayer is so incredible.  I think back to May 2nd.  We got news that was just devastating.  My son, my football player, my wrestler, my track star, my new best friend, and more was most likely going to have many challenges in life.  I wanted so bad to blame God.  But like I said I couldn't.  I was reminded today, that keeping the faith will always pay off.  I hope and know that it will pay off through this whole journey with Benzen.  I remember in my "fathers eyes" post, there was a picture of Benz and I looking each other in the eye and he said to me "ok dad, we got this far.  Whats next?"  Well I got him home.  That was my next goal and I can't believe I was able to achieve my goal almost three weeks early.  I hope that this is how all of our milestones go.  I know that they all won't but I will try my best.  

I feel like people who are released from the NICU are released with a healthy baby.  I feel like we were released and most of our concerns are yet to come.  Don't get me wrong, I am so glad to be home, just worried about how this whole experience is going to play out.  I'd say from my last post about "how do you eat an elephant?  One bite at a time"  We have taken one bite of a two ton elephant.  Thank you all so much for all the thoughts and prayers.  Keep them coming because they are working!!

Good Night,

Ben

Quick Sand

Well, again a lot has gone on in the last two days.  Starting with Tuesday.  The Docs told us that they all agreed that since it was taking Benz too long to get his neutrophil number up on his own, that they recommend not starting the ganciclovir again at all.  Before we thought that they would give it to him again once his neutrophil number came back up.  The Docs told Amy and I it was our choice on what to do.  Start it again or not.  They said that they believe the positives of the ganciclovir are over shadowed by the negatives of having a low neutrophil number for too long.  We do not want him to get another infection.  Amy and I struggled with this decision all day yesterday.  Amy had a meeting with the infectious disease doctor, neonatologist, his nurse for the day, and one or two other docs.  That is when they told her all of this information.  She called me at work to fill me in.  She told me all of this information and that one doctor said "we already know he is going to me mentally handicapped, does not starting the medicine again and possibly having a 2% hearing loss make a difference?"  (paraphrased from what I remember her saying)  That really hurt me, and I knew it hurt Amy.  I drove to the hospital as soon as I could to be with her.  The weird part is, I have been asking a doctor to say that to me for 3 weeks now and they would not, they would say "time will tell."  So the fact that I did not ask one of my probing questions and someone said it on their own caught me off guard.  I immediately got defensive. After 24 hours I now appreciate the honesty.  We are going to try prove her wrong, but I appreciate the honesty.
Today, is a whole new story.  Sorry for wasting your time in the first paragraph, but if you want a look into this whole process, you got it.  Amy and I have been in constant contact with Doctor Adler of the university of Virginia Common Wealth who has dedicated his studies to CMV and also Doctor Kimberlan of the University of Alabama, he dedicated his studies to ganciclovir.  These two have been so very helpful.  Amy put Dr. Kimberlan in contact with our Infectious disease doctor and they came up with a new plan.  More like Dr. Kimberlan said "this is what we are going to do from now on."  He suggests starting Benz on valganciclovir which is an oral version of ganciclovir.  This valganciclovir does not make the neutrofil count drop like the ganciclovir does.  So now when Benzen's neutrophil count goes above 500 they will start the valganciclovir.  I can say that I don't want to see my son going through Chemo again, but I think that the medicine will help preserve his hearing, vision, and help in his all around development.  Like I said this is an oral medicine.  Best case scenerio we can bring Benz home and give it to him.  We would have to be extra cautious about infections.  We would also have to take him to the hospital once a day or at least every other day.  But, he would be home.  Who knows what will happen tomorrow.
This is a total roller coaster ride and not a fun one.  You can not believe the information exchange on a daily basis.  That's where my quick sand comment comes in.  This whole experience can swallow a person up.  It starts with your brain.  The doctor sits you in a chair and says "we found some serious abnormalities in your pregnancy."  You immediately get tunnel vision, your mouth goes dry it's hard to breath, and you feel nauseous (you will vomit when the meeting is over).  The only thing to do is grab a pen and paper and hope you can write, because you know you will have to explain this to 500 people.  After the meeting your chest will hurt. Are you having a heart attack or does your heart hurt for your wife, daughter, and soon to be son?  After pacing around for the next couple months your legs and feet ache.  Once you get out the quick sand and things are looking better, there is more the next day.  The only cure for "quick sand" Faith, Family, and Focus.  Well I guess it's now the three F's of quick sand haha.  I know now that this CMV will be what we let it be.  We are fighting everyday to make the best decisions so that Benz has the best shot at a normal life.
I'll leave you with one of my favorite sayings and a song today, double whammy.  The saying is "How do you eat an elephant?  Answer-one bite at a time."  It's just a funny way a saying, take life one step at a time.  The song was sung by Phillip Phillips the American Idol winner.  It's called "Home". Just listen to it and you will understand why I like it.   Not sure who sang it originally, but Philip saying very well last night on Idol.
The picture above is the basket Amy and I made from some of the goodies we got less than 24 hours after we put it out.  So, it went to a good cause.  We truly appreciate everything everyone has done for us.
Goodnight,
Ben

Don't be mad

Benzen had an eventful couple of days.  His white blood count has been up and down.  Never high enough to start the meds again.  His count was so low today that they decided to take his picc line out again because they did not want any infection to be able to seep in where the picc line was.  The doctor on tonight told Amy that they are trying to decide whether or not to give Benzen the rest of the doses at all.  There is some confusion on what they should do.  1. They could not start the meds again, and we go home when Benzen's white blood count comes back up.  2. If his white blood (when I say white blood count I mean "Neutrophil") count can come up to 750 on its own, they can start the meds again.  If at that point they fall again below 750 they wait for them to come back up and start him at a half dose.  If after the half dose it falls again they will stop the meds.  3.  They may have to give him a medicine to stimulate his bone marrow to make more Neutrophil.  Then revisit how they start his meds again.  This is good news because he might get to come home early.  The bad news is he might not get all the doses of the medicine that can fight off the infection and decrease the chance of hearing and vision loss.  As much as I want him home, I think he needs the medicine.  With his picc line out, Amy was able to put an outfit on him tonight.  She has been dying to do that.

So, please don't be mad at us.  We have been in the NICU since May 2nd.  We see all the other people in the NICU without a great support system like all of you.  We truly truly truly appreciate all the food, but we can't eat all of it.  So, we made an R Angel basket out of some of the food and snacks that were given to us.  Amy and I put this basket in the family waiting room.  Not only was there a line up before we were done setting it up, but I checked on it and hour later and it was half gone (pics above)!  As much as it meant to Amy and I, it also meant a tremendous amount to the other people in similar situations as Amy and I. 

Please keep the prayers up for Benz.  I don't know what is in store for him.  I worry about him every second of everyday.  I pray for him to be as high functioning as he can be.  I pray for strength.  I pray for him not to get picked on.  I pray that he will not need any surgeries.  I pray he will not lose his hearing or vision.  I pray that, as his dad, I can be what my dad is for me.  I pray for much more but try to live as close to one day at a time as possible.  God doesn't give you what you can't handle, so I know I can handle this.  He must think I can handle a lot, and I can.  I would not trade this life or any part of it for anything.

Thanks for Listening,
Ben

I don't have to be strong enough

Benzens white blood count went down again.  This is not good because obviously we want it to go up, so he doesn't get an infection.  But, it also limits Benzen's visitors until it comes back up.  He has been off of the medicine for a couple days now and to me he seems a little more alert (not pictured above).  His Biliruban has stayed the same for a while now, which is OK.  It should start going down on its own now. He has been off of photo therapy for almost a week now.  I don't think I knew the answer to this last time but, six weeks should be the longest he has to stay in the NICU.  So, how ever many more doses they can get in, in the next 4 weeks will be all he gets.
It still is unreal everyday that I have to ask doctors how severe Benzen's mental capacity will be effected.  It hurts inside every time I have to ask, and I ask everyday to see if I can get a real answer.  This answer is always "its a waiting game."  I am a huge Universe nut.  It is mind blowing that we can land on the moon, prepare to land on Mars, or we can even see 10 billion light years away.  But, we can't look at an MRI here on earth and get answers.  Again we look to all the positive sign we know about mentioned in previous posts.
Amy told me about a couple of songs that she knew I would like.  The one for tonight is by Matthew West called Strong enough.  It reminded me that I am not alone in this.  I have all of you and God.  Becuse "I know I am not strong enough to be everything I am supposed to be."  I don't have to be.  I have my support team.  I look at another one of my best friends (Billy Witt).  He was in the Army and even fought for our freedom over seas.  That's a guy strong enough.  He fought for me to be able to sit safe and sound in a NICU room.  I can't believe the courage and strength that would take.  I appreciate what he and the rest of the forces have done and will do for all us everyday.

Happy Anniversary to my mom and dad 33 years!
Ben 

Sorry for the bad formatting...Here's the Lyrics
You must You must think I'm strong  
To give me what I'm going through
Well, forgive me Forgive me if I'm wrong 
But this looks like more than I can do On my own
I know I'm not strong enough to be everything that I'm supposed to be I give up I'm not strong enough 
Hands of mercy won't you cover me Lord right now I'm asking you to be Strong enough Strong enough For the both of us
Well, maybe Maybe that's the point 
To reach the point of giving up
Cause when I'm finally Finally at rock bottom  
Well, that's when I start looking up And reaching out
I know I'm not strong enough to be Everything that I'm supposed to be I give up I'm not strong enough 
Hands of mercy won't you cover me  Lord right now I'm asking you to be Strong enough Strong enough
Cause I'm broken Down to nothing But I'm still holding on to the one thing You are God and you are strong When I am weak
I can do all things Through Christ who gives me strength And I don't have to be Strong enough Strong enough
I can do all things Through Christ who gives me strength And I don't have to be Strong enough Strong enough
Oh, yeah
I know I'm not strong enough to be Everything that I'm supposed to be I give up I'm not strong enough Hands of mercy won't you cover me Lord right now I'm asking you to be Strong enough Strong enough Strong enough

http://www.metrolyrics.com/strong-enough-lyrics-matthew-west.html

Keepin the faith

A couple of updates from the last two days.  Benzen's picc line had to come out yesterday morning.  When they put the picc line in they covered it with the proper coverings however they forgot to cover the part that attaches the IV tube to the part next to his skin.  This is very bad and could've caused a serious infection (hopefully it didn't already).  They left his picc line out for about a day and half/two days, they put it back in at 11 am this morning.  After they were able to get his picc line in they had to do his daily blood draw.  Guess what?  Remember me telling you that if his white blood count fell low enough that they would stop his medicine until his white count came back up?  Well that happened today.  His white count fell and they stopped the medicine until his white count comes back up.  This stinks bad for a couple of reasons.  I am not sure if this will keep Benz in the NICU longer so that he can get all of the required doses.  Also, if we would have known that before they re-put his picc line in, they would not have had to put his picc line back in until they were ready to start the medicine again.  This would have made it easier to hold him and play with him for the next couple of days.  Our spirits are still high and I can't wait for the weekend when I can spend the night and have a slumber party with my little guy.
I am so glad that I have this blog to update.  I like having everyone get all the facts right from me.  I have not heard one rumor about Benz and I am very happy about that.  Another thing my dad always said (baahaha)(I didn't know I had so many "my dad always told me's")  He always said "only believe half of what you see and none of what you hear.).
This has been such a learning experience for me and I am sure you as well.  Thank you all for reading and keeping the faith.  We are about 50 views away from 10,000 views!
With everyone's generosity I am sure Amy and I will miss a thank card to somebody.  So please know that we thank you all for everything you have done for us.  I received a very thoughtful card tonight from all of my "peeps" at Dental Health Associates.  Dr. Tim T and the gang are the best Dentists around!  Thank you everybody.  Josie, I look forward to reading your comment just as much as you say you look forward to reading my posts every day.
Goodnight everybody,
Ben

Caught doing something good

As you can see Benz is a sleepy boy.  The cool thing today is the nurses put his IV meds on a pole instead of on the table behind his bed.  So now we can get him out and about, well as much as we can in a 10x20ft NICU room.  This pic is him laying on the couch tonight.  I know all the wires look bad, but this is him for now.  One measures his heart rate, one measures his respirations per minute, and another his pulse oxygen levels.  His picc line is in his right arm.  I think we will have more fun now that we can get him out to play.  As long as we can keep his biliruban down, he can stay off of the blanket.  We keep seeing and hearing more positive signs from the Docs.  Like passing his hearing and vision tests.  His head size is normal and he seems like a strong little boy. He has been on the medicine now for two weeks.  He is doing OK on it except I think that is what makes him sleepy and it has made his white blood count fall.  If his white blood count falls too low they will stop the medicine until it rises to safer levels.  If after that it falls again they will cut his dose in half.  If it is still too low after the half dose we may have to stop the medicine all together.  So far his levels are just above the acceptable the range and we hope they stay the same or go up.
"You never know how strong you can be, until it is the only option"  I heard that quote somewhere and it is very true.  I don't feel I had the option to be strong or not.  I don't feel I had the option to make good or bad decisions.  Maybe a higher power made them for me?  Maybe it is how I was raised?   Maybe it is me becoming my own man?  My best guess is all the above.  I truly appreciate the kinds words that all of you have said about me.  It may be wrong of me to think this way because to some it comes natural.  But in all that I have been through, in the back of my mind I always ask myself "Am I being a good roll model to my children, nieces/nephews, friends, family, and/or even strangers?"  This is what my dad would call "being caught doing something good"  Basically, this is when you did the right thing instead of the wrong thing (especially when the wrong thing would be so much fun) and then your parents find out about the good choice you made (with out you telling them).  Like, after a football game in high school there was a party I chose not to go to.  Well the party was busted and kids got in trouble.  My dad found out about the good choice I had made (without me telling him) and bought me a new pair of shoes.  My sisters and I tried to make this a common theme in our house.  But being caught doing something good is hard to come by.  So, when ever my sister and I's friends would see us with new shoes they would always say "oh, you got caught doing something good again?  Good for you."
So to close this ramble session.  I may have blown my being caught doing something good by telling you all that I actually do think about being a good role model to all of these people, but it was worth it!
Again, I want to thank you all for everything,
Ben

Happy Mothers Day!

Benz is doing good.  He sleeps most of the day.  The doctors say he must have been more like 36 weeks along rather the 37 weeks 5 days we thought he was.  Which means he still has some catching up to do.  For example his ear was a little curled over, one testicles has not descended yet, and when he latches on to feed he forgets to breath a couple breaths and his blood oxygen levels fall.  Those thing should correct themselves soon.  The Neurologist came in Friday and said it was great news that he past his hearing test, he also said he see's other positive signs compared to other babies he has seen with CMV.   I spent the night with Amy and Benz in the hospital Friday night.  I hear that I was not that much help because I was so exhausted I never heard him wake up all night, which was a lot.  Sorry Amy!  So far a typical newborn (a night owl).  He still has to lay on the bili blanket all day and night.  I am not even going to guess how much longer because I thought he would be off of that already.
One of my best friends and college roommate Rodger Shingledecker is about to have a baby.  I hope that I have been a good role model for him.  Pray for him and his family for a happy and healthy birth in July.  I know they will do great!
I wanted to title this entry "you see what you want to see."  Amy and I took Beyla to the zoo Saturday morning for and hour or two.  We had a great time!  We only went in the front of the zoo.  We saw the seals, polar bears, took a train ride, and carousel ride.  I know it only seemed this way but, it seemed like 1 in 3 people either had CP, hearing aids, was in a wheel chair, or had some form of Neurological symptoms.  Obviously, we were thinking about what Benzen's life would be like.  I can remember going to the zoo after we found out about Remi having down syndrome, and it seemed like 1 in 3 people at that time at the zoo had down syndrome.  I know your mind plays tricks on you and you see what you are looking for.
I want to say happy mothers day to all the mothers especially to Amy and my momma.  I know that I have put my mom through way too much even before Benzen.  I can't even describe to you all the feeling of having to call or tell your mom face to face that your first born will have down syndrome, your first born will pass away today, your wife has had a miscarriage, your son has serious brain abnormalities, and will never be a typical boy.  This is hard for me to even type.  My mom is a women of little words but you always know she is listening and hurting with you.  I have always been a momma's boy and always will be.  I look forward to telling my mom all the great things about Beyla and Benz.  They are both going to make us all very proud and I truly think Benz will prove a lot of people wrong.  You all know how I feel about Amy.  She is the love of my life, my best friend, and the best mother I could ever ask to be married to.  We will get through this and have an even stronger relationship.
Sorry for the delayed post.
Ben

Pray for Neuroplasticity

This is a Picture of Beyla and Benzen face timing each other.  You can tell they love each already.  He is going to be Beyla's personal baby doll.  Benzen is still under the bili lights.  I can't believe it.  They want to make sure it does not go up again.  It is torture having to leave him in his crib that long.  We get to hold him quit a bit but not 24x7 like we want to.  He is slowing morphing from brand new born look into week old new born look.  His face is getting round and cheeks have the inherited chubby look.  In conversation with the nurse he had tonight she mentioned the term neuroplasticity, which is when the brain has abnormalities and other parts of the brain pick up the slack. That might be similar to me being color blind and my sense of smell being heightened, just a guess until I can research it more.  Who knows?  I have heard the brain is a very powerful machine and kids are resilient.  With those two sayings, I am staying positive. 
Exhaustion is starting to set in for me.  So I can't imagine how Amy is feeling.  She has slept at the hospital since May 1st.  I have started coming home at night but that doesn't mean I can sleep any better.  I can help but try and guess what the time will tell will be that everybody is telling me.  I sit up wondering how severely he will be impacted.  I know I will drive my self crazy but I can help it. We are starting to get some kind of routine going it seems.  I think Amy is getting to see Beyla more that she thought she was going to get to when we first heard we were heading to the NICU for 6 weeks. 
The love and support keeps flowing in!  We love it.  We really don't understand what we have done to deserve such great family and friends.  Don't forget to thank God for what he has given you, what he will do for you today, and what he will do for you in the future.  I know that's what my family prays for everyday.
Thank you Everyone!
Ben

Neuroplasticity

Contrary to common ideas as expressed in this diagram, brain functions are not confined to certain fixed locations.

Neuroplasticity refers to the susceptibility to physiological changes of the nervous system, due to changes in behavior, environment, neural processes, or parts of the body other than the nervous system.^[1] The brain changes throughout life.^[2]
Neuroplasticity occurs on a variety of levels, ranging from cellular changes due to learning, to large-scale changes involved in cortical remapping in response to injury. The role of neuroplasticity is widely recognized in healthy development, learning, memory, and recovery from brain damage. During most of the 20th century, the general consensus among neuroscientists was that brain structure is relatively immutable after a critical period during early childhood. This belief has been challenged by findings revealing that many aspects of the brain remain plastic even into adulthood.^{[3]
FROM WIKIPEDIA (http://en.wikipedia.org/wiki/Neuroplasticity)}

No news is good news...right?

   I did not even get to see Benzen today.  That is why you get to see a pic of Beyla above.  She comes to visit to her brother an mom.  She is not aloud back in the NICU so we have found places to take her outside the hospital and some fun places in the hospital.  Amy was with Benzen all day and she told me everything was good and quiet today.  He is still under the lights today because his biliruban is still kind of high.  They told Amy that his sodium was high today, so they wanted to make sure he was eating well, which he is.  They ended up adjusting his IV meds to something with little or no sodium in it.  I did not see him today because I worked all day then Amy came home to play with Beyla and I.  Amy was able to have dinner with Beyla and even tuck her in to bed tonight.  Patti and Bummer sat with Benzen while Amy was out.  Today is one week down of our 6 weeks in the NICU.
  I have a story from today.  On my way to work I stopped to get a coffee.  The line was about 5-6 people deep.  Everyone in front of me was complaining about the line, gas prices, the cashier, and more.  When it came to my turn, I put my coffee down and she said"oh, you just have a coffee?  You can have it for free for the wait."  I said "no thank you, I'd like to pay for it because the line was no ones fault."  We fought back and forth in a nice way about the amount to pay.  Eventually she charged me a dollar.  I paid it and then tipped her two dollars.  She got emotional and told me that people are always mean to her there and people do not appreciate what she does there.  She said I made her day and was appreciative that I treated so kindly.  This in turn made my day.  I called Amy to tell her about this and she said that the women was probably trying to "pay it forward" for something someone had done for her in the past.  So really I somehow "one upped" her pay it forward and I didn't mean to and if that is true I would feel bad. 
So for now, no news is good news.
Ben

Lifes a journey...Not a destination

 "Life's a journey not a destination" This is one of my sister Lori's favorite quotes from an Aerosmith song.  Think about it for a second.  Do good in this journey of life and you will make it to Heaven.  Take care of God's people, no matter what.  Sounds simple right?
Benzen passed the second half of his BAER hearing test and also his eye exam from an infant ophthalmologist.  That was all great news.  Shortly after that the neurologists let us know that he was reviewing the MRI again and judging by what he see's he is 70-80% sure Benzen will suffer from some sort of hearing loss (how will we know if that is just not inherited from his Papa Bummer?).  Most of you know that Amy is a speech therapist and knows all the great audiologists in the area.  Thanks for your help so far Julie.  They will monitor him closely and we will be prepared for what ever happens.  He also said some of the findings on the MRI were signs of Cerebral Palsy and possible future seizures.  We are still cautiously optimistic he will have mild cases of what ever he may develop.  We had a new nurse today, and she told me some interesting facts.  She said in other infants she has cared for with abnormal MRI's and neurological disorders that they show signs like continuously smacking their gums, continuously swinging an arm, or continuously kicking a leg.  Benzen does not do any of those.  Which seems like good news.  His biliruban did go back up, so they put him under the lights again all day today.  I would think he will be done with the lights for good tomorrow.  Although, he loves the lights and just chills out and relaxes as you can see from his above picture.
The other picture above are drawings from Zae Zae Bolyard, Harlie Hensley, Sadie Walters, and Mei-Lyn Walters.  Also, in there is the count down calendar made by my sister Ashley.  Benzen loves his new artwork.  I still cannot believe all the of the stuff Betsy is sending up to the hospital from all of you!  Thank you all very much!  In the Jewish faith this would be called a "Mitzvah" (A moral deed performed as a religious duty. As such, the term mitzvah has also come to express an act of human kindness.)  This will be repaid to you many times over in Heaven.
Thats pretty much it today.  Nothing sappy and sad.  I hope you all have a great day today since it is after midnight.
Ben

Stay awake for me.

Today my sister Ashley made us a count down calendar.  It's a very nicely decorated calender that counts down the days until Benzen can go home.  It is very awesome, but it put things into perspective.  5.5 weeks is a long time.  The nurses told us that when we feel Benzen is up to it we can bring a bouncer, swing, or a blanket to play with him on the floor.  I think he will love him some "belly time" on the blanket.  This is good news because we were worried he would only be able to just be held or lay in his crib.  Its hard because of his PICC line, O2 sensor, and vital monitors.  As you can see Beyla is in love with him.  I picked her up tonight, got her all buckled in her seat, and she looked over at Benzen's empty seat and said "Benzen sit here!"  Teary eyed I told her "soon enough."  We got home and Facetimed Amy and when Amy was showing Beyla and I Benzen she could not stop kissing my phone screen.
Benzen is doing well again today.  His bilirubin went up a little to 13 from 8, so they are going to monitor that again.  Our interim pastor from Faith Lutheran came to visit tonight.  She was very nice.  As you can see from these blog updates, I think I talked too much.  I don't know if she got to cover what she wanted to because I wouldn't shut up.  We told her more about Remi, R Angel, and some of our plans for Benzen.  I was trying to explain to her where my head was at, without her thinking I was a weirdo.  I was trying to explain that I was very tempted to stop believing, but I just couldn't.  Who would I talk to, be mad at, or be happy with especially when I am alone?  Who was going to protect me, my family, my friends?  Right now, I can feel people saying "but Ben, he let your little girl die so young, he made Amy have a miscarriage, he gave Benzen CMV which is going to prevent him from having a normal life.  Well Remington is one of the best things that ever happened to me and a lot of people, without the miscarriage we would not have Beyla, and Benzen is and will continue to be another one of the best things that ever will happen to me.  He already is an amazing little man!  She said a very nice prayer for him before she left. 
The song for this update is by Secondhand Serenade called Awake.  This was Amy and I's wedding song Sept 2, 2007.  This was the day we told each other that we would stay by each others side through sickness and health, for rich or poor, the good times and the bad.  This song to us is never wanting to be apart from one an other.  We vowed to each to do as much as we could together, never go to bed mad, and always be there for each other.  Now you can see why this experience is extra sensitive.  I am here at home taking care of our daughter and she is at the hospital taking care of our son.  It's hard to be apart.  Every line in this song holds true from me to Amy and I know they hold true from Amy to me.  If you see my Godson Hudson around ask him to sing this song for you. 
Thank you for the continued love and support.  I hear, read, and feel it all.  I am trying to respond as fast as I can to FB messages, txts, calls, and comments.  I love them all, they really help keep me going!
Good night,
Ben

Lyrics to Awake :

With every appearance by you, blinding my eyes,
I can hardly remember the last time I felt like I do.
You're an angel disguised.

And you're lying real still,
but your heart beat is fast just like mine.
And the movie's long over,
that's three that have passed, one more's fine.

Will you stay awake for me?
I don't wanna miss anything
I don't wanna miss anything
I will share the air I breathe,
I'll give you my heart on a string,
I just don't wanna miss anything.

I'm trying real hard not to shake. I'm biting my tongue,
but I'm feeling alive and with every breathe that I take,
I feel like I've won. You're my key to survival.

And if it's a hero you want,
I can save you. Just stay here.
Your whispers are priceless.
Your breathe, it is dear. So please stay near.

Will you stay awake for me?
I don't wanna miss anything
I don't wanna miss anything
I will share the air I breathe,
I'll give you my heart on a string,
I just don't wanna miss anything.

Say my name. I just want to hear you.
Say my name. So I know it's true.
You're changing me. You're changing me.
You showed me how to live.
So just say. So just say,

That you'll stay awake for me.
I don't wanna miss anything.
I don't wanna miss anything.
I will share the air I breathe,
I'll give you my heart on a string,
I just don't wanna miss anything

 

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.