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