Transitions

Well, Charlie threw us through a loop, but his blood pressure ended up being a good thing.  The doctors suspect it’s due to increased kidney function, which is actually a good thing.  Once they got that established, they sat us down to talk about "transition planning."  This is the part where they start figuring out how to get your baby home, and how much they’ll need once they’re home. 
 
The long and short is this: Charlie could be out of intensive care by the end of the week.  He could be out of the hospital before the end of the summer.  He has two potential surgeries on the horizon–one, a shunt, the other, a button.  Both are fairly common as far as surgeries go, but they would keep him in the hospital longer.  The shunt would be to drain fluid from the brain.  The button would be to feed him since they have no idea whether or not he’ll have a swallow reflex after being intubated as long as he was.  The big deal is after he goes home.  Because of his extensive brain bleeding, he will probably need daily therapy for an unknown amout of time.  I will definitely have to quit my job.  The human brain is amazing, but it usually isn’t amazing without a lot of help.  I plan on helping little Charlie have the best quality of life possible. 
 
So all those prayers are working–the little boy they didn’t expect to make it has surpassed the odds, and may be home before we know it.  They even let me hold him!!!!
 
In the middle of all this some other things happened too: the Hub got a job offer back home is the first.  We’re still hammering out the details, but we think it’s going to work out.  Also, a very nice nurse had a little chat with me.  She has a daughter with Down’s syndrome and she told me to make sure I don’t "lose" myself in being Charlie’s nurse/therapist.  I think she’s right.  Just like any new mother, it’s important not to forget who you were before your child was born.  So, while this site will still have TONS of Charlie updates, don’t be surprised if I write about something else, or just talk about how I’m feeling. 
 
I am so thankful for everyone who has, and who continues to pray for my little boy.  Here’s hoping he’s home soon.
 
KM
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About takedeux

In one summer I had a baby who was hospitalized for five weeks, quit my job, and moved back to my hometown. This blog is about starting over.
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35 Responses to Transitions

  1. g says:

    Oh, what great news!  I am so happy for you…especially because you got to hold him.  Amazing.  Still praying for the best.  God bless the three of you.
     
    Always,
     
    g.j.

  2. Becca says:

    That is the absolute best news! You got to hold your boy! Good job mom! Steps to get him home keep moving forward! Keep the faith and we are all here for you!
    Blessings,
    Becca
    http://escape-for-a-sec.blogspot.com

  3. kacky says:

    you got to hold him??????  i know that was an amazing feeling.  yeah you.  i am so happy for all of you- and what good news!!! the job!!!!  woo hoo!!!  yes, very important for you to remain you and easier to say than to do.  Just take time for you.  I am so excited for you and to hear how he is progressing.  that is incredible and yes the power of prayer works.  very exciting.  🙂 
    k
     

  4. Lin says:

        This is such GREAT news for you all….I am so excited & happy for you.I will keep sending up the prayers fo Charlie & his Mom & Dad…Take care of yourselves & GOD bless you all….Linda

  5. Unknown says:

    That is wonderful news that you got to hold Charlie!  So glad the prayers are working and that you
    and your husband continue to stay so positive and strong.  Just a suggestion, since someone
    told me about it in the NICU, premies tend to be a tiny bit behind so ask about early intervention.
    Every state has it and it is free.  A teacher came to our house when Ashley was 3 months old and
    continued coming until she turned 4!  Also, I took her to occupational and physical therapy at the
    Early Intervention site in our city in Florida.  They do amazing things!!  Ashley will be going into 5th
    grade this year and she had occupational and physical therapy through 3rd grade.  They dismissed
    her at the end of 3rd grade, they said she didn\’t need it anymore.  So, Katy please check into
    the early intervention, they are wonderful, and will help Charlie so much!!  They give you things
    you can work on at home with them too!  I know that is in the future, but I was surprised they started
    seeing Ashley so young.  I have one funny story about her and her teacher.  Ashley was quite
    the talker starting at 1 1/2 no speech therapy needed!  🙂  Her teacher was testing her one day
    to see how many blocks she could stack, and Ashley tiny Ashley at 1 1/2 said I don\’t want to stack
    anymore damn blocks!  Well, we were all shocked but laughing and her teacher still tells that story
    years later.  I am glad Charlie is improving and know everyone is still praying for everyone,
    especially precious Charlie!! 
     
    Also, I know everyone understands if you don\’t want to talk baby all the time and just want
    to tell us how you as a new mother are doing!!  We would love to hear how you all are doing.
     
    Take care and I will continue praying for everyone!
     
    Gwen

  6. Siobhan says:

    That\’s so good to hear.  It\’s amazing how even though I barely know you (even online), I feel connected through prayer.  I am so excited you got to hold him, that brought a huge smile to my face.  I am still praying for you all and sending happy vibes your way.  Take care!

  7. Christine says:

    Katy,
    Your kind nurse was very wise.  There is probably a support group for children with medical problems or disablilties available.  Take advantage of it.  People who have had to deal with similar circumstances can be a great source of comfort and first hand information about expected outcomes, and while they will have some "medical speak" just being in their circiumstances, but they will speak to you on a less technical level, and they usually understand that you have feelings about the problem or procedure.  I am so happy to hear that your little fighter seems to be winning another battle.  I will continue to pray!
     
    Love you!
     
    Christine

  8. Antonella says:

    I\’m so happy for you guys! THat\’s such great news, the transition with Charlie and the hub\’s new job!!! I\’m sure it felt great to hold Charlie!
    Well, I will continue praying for you guys,
    HUGS,
    Antonella

  9. Stacy says:

    Terrific News!  I am so excited that things are looking so well for all of you. 
     
    And boy is that Nurse right.  Also don\’t forget to spend time with Hubby alone once in a while.  That really keeps us in touch.  Once a year just hubby and I will go away.  Just one night, but it is just us.  Even a quiet dinner together is better than no alone time. 
     
    Prayers will continue and give Charlie a little High-Five from us.
     
    -S.

  10. Stacy says:

    Terrific News!  I am so excited that things are looking so well for all of you. 
     
    And boy is that Nurse right.  Also don\’t forget to spend time with Hubby alone once in a while.  That really keeps us in touch.  Once a year just hubby and I will go away.  Just one night, but it is just us.  Even a quiet dinner together is better than no alone time. 
     
    Prayers will continue and give Charlie a little High-Five from us.
     
    -S.

  11. Gina says:

    Katy, that is terrific news!!!  Charlie is just such an inspiration! I continue to pray for healing and successful days and nights! Please feel free to email me should you just need to vent or talk about anything!

  12. Nadine says:

    This is all good news!!
     You are moving back home. You will have your family near you to lean on…even though your family may drive you crazy at times, You need them.
     Hey this is your blog….tell what you want to….baby news, new jobs, the move, poop….whatever. We will be here for you…that is what friends are for….even if we are cyberfriends!!
     
    Hugs!!!

  13. KEL says:

    I am so excited to hear the wonderful news!!  This is the start of a journey for you and your family but one with an amazing little boy who is such a fighter.  You are a brave woman Katy, congrats on the job offer for your hubby and I\’ll keep Charlie in my prayers.~K

  14. Sarah says:

    That\’s great that you finally got to hold him! I\’m glad to hear that things are working themselves out. 🙂

  15. -c says:

    Such good news! I am always amazed at the power of prayer, and how God \’takes care of the details\’ like a job offer, a nurse with experience, and just the right words. Sometimes it\’s hard to see the blessings we receive in life, but, Katy, you are blessed. And so is that precious little Charlie!
     
    -cindy

  16. Sheryl-Ann says:

    Wow Katy, such wonderful news!  I could just imagine how nice it felt holding your son in your arms.  We will not stop praying, and Gwen has given you some great advice below.  I firmly believe that Charlie will surpass all of our expectations!  Let\’s hear it for CHARLIE!!!!!!  I will continue praying for complete healing.  Hang in there!

  17. Tracy says:

    Wow, how exciting that you are talking about / making plans for him to come home.  Yay!!!  And you got to hold him!!! 

  18. siobhan says:

    Oh katy that is wonderful.  I pray that you get to bring that little one home soon.  And Gwen had some really great advice.  Now I am praying that the damage to Charlie\’s brain function will turn out to have been minimul.  Stanger things have happened and doctors have been wrong before.  With all the prayers that Charlie has been getting from around the country, indeed around the world, anything is possible.
    Hugs and Happy dance for the wonderful news
    Siobhan

  19. Toni says:

    km here i am for the first time in months and i\’ve missed out on all this! congratulations on your little one and i sure will be praying for him and your new family…~Toni

  20. Ann says:

    I am crying, but I will also be praying.  Life is so crazy…but God is above it all.

  21. K says:

    FANTASTIC NEWS Katie!!!  I keep your family close to my heart and continue to send vibes of positivity and healing your way.
     
    Excellent news!!!

  22. Nora says:

    I am so happy you got to hold Charlie, and that he is doing so much better.  I will continue to think of you and pray for your family.

  23. Gina says:

    :o) –>  wanted to leave you a friendly smile. Thinking of you and your family.

  24. Jaysey says:

    Yay!  I am so happy for you! 

  25. Carol says:

    Katy, each day when I open your site I\’m afraid about what I may read.  Yet each day brings some positive news.  Thank goodness!  You got to hold Charlie.  That\’s wonderful!!!  

  26. Carol says:

    Katy, each day when I open your site I\’m afraid about what I may read.  Yet each day brings some positive news.  Thank goodness!  You got to hold Charlie.  That\’s wonderful!!!  

  27. Carol says:

    Katy, each day when I open your site I\’m afraid about what I may read.  Yet each day brings some positive news.  Thank goodness!  You got to hold Charlie.  That\’s wonderful!!!  

  28. BP says:

    I\’m so happy to hear this positive news.  Keep the updates coming.Billy

  29. Unknown says:

    What a great update!  I\’m still praying for you guys!God bless 🙂

  30. WINDOW LIVE says:

    Charlie is going to be fine.  I have confessed this and it is and will be.  Charlie will also be better than fine because he has YOU  for a Mom.  BTW, my children only have adhd and I still am the nurse, therapist, blah, blah, blah.  That\’s why I went back to school.

  31. Betty says:

    Hi KM,
     
    What a thrill – holding your baby!  Hope you get home (to LA) soon so that you will be cradled in the love and support of your family.
     
    I recommend writing about your feelings.  I can\’t tell you how much that helped me in the months after Dean\’s death.
     
    You, Charlies and your hub are in my prayers twice a day.
     
    Betty

  32. Aimee says:

    iam so sorry that i have been gone for so long…however reading all the entries to get caught up on your life was an emotional rollercoaster that i am sorry that you have to go through…the talk of bringing home your baby boy put a smile on my face…as well as the fact that you got to hold him…you are all in my thoughts…
    :o) smiles are free and contagious…so pass one right now to the people you love and those you don\’t…soon everyone will be smiling… :o)

  33. Stacy says:

    Katy,  Sure hope all of you are doing well.  -S.

  34. Joell says:

    How wonderful you got to hold your little man!  He sure is showing those folks how it\’s done, huh?!  Glad to hear it.  Congrats to Hub on the job…hope it all works out just the way you want it to.  I continue to think of you all and pray for you.  Thanks for keeping us all in the loop.  Your new nurse friend is right…don\’t forget to take care of Katy too!
    Keep on keepin on!
     
    HUGS!
    Joell
     

  35. Becca says:

    Katy,
     
    How is everything going? How is Charlie? How are you and hub holding up? Please update when you can. Thinking of you and keeping good thoughts, as I am sure we all are!
    Becca
    http://escape-for-a-sec.blogspot.com

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