Sunday, May 13, 2012

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

4 comments:

  1. Good morning Little Remer Family! What a precious picture of your baby boy, he's making us all fall in love with him. Glad you guys were able to get out for a bit, fresh air makes a world of difference doesn't it. Plus to see the zoo through your little girl's eyes is way more fun than seeing it through our clouded adult ones. Prayed for you again in Judy and my 5:00 walk. Prayed for strength and for you to feel God with you on this journey. Thank you for taking the time to share your lives.
    Love
    Josie

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  2. I hope his hair starts to grow in soon or he will for sure start looking like his Popeye! Good Luck today Benzen hope to hear some more good news and I am sure I will see you tonight with Gabba and Popeye (They are babysitting both you and me!)

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  3. Praise God from whom all blessings flow! I was so excited to hear Benzen passed his hearing test and that there are other positive signs! You, Benzen and your family are continually on my heart and in my prayers. I am believing that as we continue to pray and seek God on Benzen's behalf, he is going to be a miracle baby, touched by God, no vision loss, no hearing loss, no CP, no abnormalities whatsoever. Thank you for continuing to share this journey with us and for the pictures you share of your beautiful baby boy. He is "fearfully and wonderfully made!" Psalm 139:14. "May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit." Romans 15:13 In His love, Chris Stephenson (Kirsten Momsen's mom)

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  4. I cannot stop talking how great your family is to my sister Jessica. She shared with me her new favorite Klove song which I am sure you have heard. Hope this song lifts your hearts like it did for me. Thinking of you Ben, Amy, Beyla, Benzen and of course the whole family. The song is by group 1 crew "he said"

    So your life feels like
    It don't make sense
    And you think to yourself
    I'm a good person
    So why do these things keep happening?
    Why do you gotta deal with them
    You may be knocked down now, but don't forget
    What He said, He said

    Chorus
    I won't give you more
    More than you can take
    And I might let you bend
    But I won't let you break
    And no, I'll never let you go
    And no, don't you forget what He said

    Who you worrying, and what you're going through
    So don't let it get the best of you
    'cause God knows everything you need
    So you ain't gotta worry
    You may be knocked down now
    But just believe what He said

    Chorus

    Don't fear when you go through the fire
    Hang on when it's down to the wire
    Stand tall and remember what He said

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