Monday, September 27, 2010

this is how we're doing

Travis:  He's doing okay.  He's got work (high school physics and chemistry), a masters class, bills to pay, a lawn to mow, a wife to tend to, James to visit, and Lydia and Bennet to love on.  It's a lot for any man to handle but I think he's doing a good job.  I think he was greatly recharged by a Friday night with his dad and a Saturday fishing with his brother.  People keep telling me that my husband is worth his weight in gold.  I already knew that, but it's wonderful to hear others speak so well of him.  He's an outstanding man and I wouldn't want to go through my life with anyone else.  Especially this part.

Bennet:  He's doing okay.  He has no idea I had a baby, he just knows that I'm gone a lot more.  He misses me and it was really hard on him when I couldn't pick him up for a week.  Finally, late last week I put him to bed for the first time in awhile.  He was so tired, but after he finished his bottle all he did was look at me, with his hands behind his head while he giggled and smiled.  He was so happy to be in my arms again, listening to me pray and tell him how much I love him.  Now that most of our mornings and nights are back to normal he seems to be a happier boy.  Oh!  I should also say that he grew a ton in the last two weeks and he has a bunch of teeth that are ready to pop through.  And he is so. cute!

Lydia:  She's doing a lot better than she was.  It's hard on both the kids to have Trav and I come and go to the hospital so much, but it's even harder on her.  Lydia doesn't understand why she can't go to the hospital (she's not allowed in the NICU), but she desperately wants to come with us.  She'll talk about when I was "sick" - right after James was born - and she'll ask if I'm all better now.  She'll ask about James, though I don't know if she really gets that she has another brother.  More than anything she is helpful.  She would help me to the bathroom when I was too weak to walk after L&D.  She would even help me get dressed like she saw her Grandma do the couple days after James' birth.  And she loves to help me pump.  "Can I help you?  Look, it's coming out!  It's filling up!  Is that for baby James?  I love your milk."  Maybe I just weirded you out, but I think it's incredibly cute.

Me:  I'm tired.  Pumping is going well.  My body is healing very well.  I sway back and forth between worry and blind hope.  If it's silent long enough I find myself apologizing to James, either in person or in my head, damned by the thought, "What did I do to my son?"  I keep thinking about the passage, "Before I formed you in the womb I knew you," and I wonder how who James was will compare to who James will be.  I remind myself that God clearly wanted us to have James and that we have no idea why his heart stopped beating.  I wonder if this is all part of God's will - the stillborn birth, the 61 minutes, all the damage, all the healing, all the praying, and all the unanswered questions.  I constantly pray to God to heal my son.  I wonder what the nurses say about me.  I eat a lot, not because I'm hungry, but because it's something to do that's normal.  I wonder if I'll be fat forever.  I wonder if we'll have more kids.  I wonder how Lydia and Bennet will be around their brother when he finally comes home.  I wonder if James will even like it at home.  I wonder if I'll be tired forever.  I'm tired.

James:  Nothing new to report.  In many ways he's doing very well.  The attempt to feed him with a bottle did not go well.  Will you please pray that when they try tomorrow it will?  His suck is pretty good, but his gag reflex isn't great and so milk goes into his lungs instead of his tummy.  His doctor said that he's made so many improvements in the last 7 days that it's okay for him to rest and take some things slow, but I'd like him to come home in 2 weeks on a bottle, not with a feeding tube surgically placed into his stomach. 

In 3 days he'll be done with his antibiotics, which means the iv into his groin comes out, which means I will finally get to do some Kangaroo Care.  Skin to skin contact between mother and baby is so important and I hope it helps him heal. 

His muscle tone is still not good.  Please pray for normal muscle tone.

Lastly, we met with the developmental pediatrician today.  He was also concerned about the feedings and muscle tone.  He wasn't able to tell us anything with certainty, besides that there was brain damage and James is at risk for disabilities.  How deep is the damage?  We don't know yet.  Will James have cerebral palsy?  Maybe.  Will it be mild or severe?  We don't know yet.  Will his body function normally and let him run, walk, dance, and play normally?  We don't know yet.  Will he be severely mentally retarded or just have ADD or nothing at all or something in between?  Yes, it will be one of those things, but which we just don't know yet.  The good news is we still have reason to hope.  The bad news is we could still get the absolute worst.  Please pray that God will heal James' brain.

Please pray for all of us.

Thank you and God bless.

11 comments:

  1. Bonnie- I visit your blog occasionally and only just saw about little James' birth. First, Congratulations! You and your little family will be in my prayers. I can't imagine how hard this is on all of you. I'm excited for you about finally getting to hold him. I hardly put my daughter down for the first 24 hours of her life; I know it must be tortorous for you not to be able to hold his sweet little body.

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  2. oh bonnie... such heartwrenching questions you are asking yourself right now. my heart is ACHING for you. this is that worst case scenario that moms fear- you are living it.

    and yet... you ARE living it. you are NOT alone. you are tackling one day at a time- one moment at a time.

    i know that your mind goes there, but try to stay in this moment. right at this moment, everyone is safe. at each and every moment, someone, probably lots of people, are praying for you and james and your family. all the angels and saints are praying. mary holds all of you safely in her starry mantle. she loves you all so much.

    you did not do anything wrong. you did not cause this. our world unfolds as it does, yet God gives us the graces to handle it, moment by moment, with Him. you are a beautiful woman, and you are right- God gave you this little boy because you are exactly the mama he needs.

    much love and prayers-
    jen

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  3. Bonnie- Thank you for the update on all of you. I have been worried about how you all are doing. I pray for all of you daily, and I will continue. I pray for strength and ocntinued hope, I pray that your babies understand...as best as babies can. I haven't called because I know you are tired and busy and probably overwhelmed. But, know that I think of you and pray for you daily. Love to you, my friend.

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  4. Thank you for being vulnerable and letting me into your world to see how all of you are doing. I have spent so much time in prayer for all of you lately and it really helps to know exactly how to pray for you. We will be at the prayer time tonight. Love you all.

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  5. Bonnie, we have been praying. thank you for taking the time to share your life and James with all of us. Tim tried to stop by a few times, but I think he missed you and Travis.
    (((Bonnie)))
    love, and many pryaers, the Roders

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  6. You don't know me but I have been following your posts since James was born. I am a pediatric nurse and I have seen some very sad cases in the last few years. No matter the outcome of James health, I appreciate the involved parents you have been in his recovery, I appreciate the prayers you send forth, and most of all I appreciate the love you have shown him in his short life. Just know that I am praying for you and your family, know that no matter the outcome, I will continue to pray for all of you, and know that even when nurses may say the wrong things, they still love and care for your child just like it is their own. Prayers to your whole family... Jennifer

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  7. Bonnie,

    I literally just prayed for you and James. My heart bleeds for you...I wish I had the power to make it better for you. I know, though, no matter what happens, James is so lucky to have the two of you as parents. I wish him healing.

    Love, Em

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  8. Bonnie
    We continue to pray for you. The Holy Hour was amazing. I am so glad my children and I could attend. Please know that James has touch my girls lives. They are praying. One wouldn't leave until she said yet another prayer for James. I really think that James and your whole family is helping my family grow spiritually. James is amazing and God is doing great things thru him. Bonnie I know you are a great mom. I have seen you with your kids. This is in NO way your fault. Please remember that always. Please know you are safe and loved in Gods Hands. God Bless Lori

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  9. Bonnie- Thank you for taking the time to update us on your family. I'm sure it took courage and strength to even type some of those words. I will continue to pray for energy, strength, and guidance for your weeks ahead. I'm sure your tired body and mind will need all of that.

    We missed you at girls night and all raised a glass for you and your family! Can't wait for you to get back with us when time allows.

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  10. Still praying so often for you all... When I hear the words you write I wonder where you get the grace and strength (I know the God provides that, but after all we are, well, human). Thank you for your transparency, it allows for those of us praying to know specifically how to lift you up.

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  11. I just read where you wrote "what have I done to my son?" If this is in response to your home birth remember:there are many sick babies in the NICU all the time, and they were all born in the hospital. this is important for you and Travis both:
    we don't know, and never will know why the events happened in James' birth as they did. Don't beat yourselves up over it. Let it go. Free yourselves; don't be dragged down by "What ifs."
    Mom

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