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Sunday, November 21, 2010

the medical mindset- you are your child's best advocate

you may even be your child's ONLY advocate.
i will start this post by saying that i received great care at emory.
the staff was very helpful- always mindful of my needs, often before i
voiced them. for that i am grateful.
the basic humanitarian needs of jedi? we kind of had to fight for
those. i will list as much as i can recall- all this for parents who
may face the similar challenges.
jedi didn't wear a diaper for his first twelve hours of life. not
that I minded. it afforded me more skin to skin contact, and i wasn't
the one doing the laundry. i found out later that this happened
because he wasn't even in the computers. that makes sense looking
back. i don't recall them checking his temperature, how many wet
diapers he had, or how often he fed.
at some point during the first night we began to realize what we were
up against. we called the neonatal nurse practitioner and asked for a
cardiac consult. we wanted a current echo of jedi's heart. the
moment she came into our room i noticed jedi wasn't breathing. she
asked chris to give her the oxygen- which she promptly shelved. she
did not attempt to help us. i was confused and told chris to give
jedi to me. i massaged his chest, flicked his feet, rubbed his head,
and talked to him. he began breathing.
before i kindly asked her to leave she said, "you are just going to
have to keep doing that. sometimes it's better if you just let them
go."
and that- that my friends- is what is cozily called "comfort care".
as soon as she left i told chris to hand me the oxygen. soon after
she came, the neonatologist came in. she wanted to get some things
straight. our request for a cardiac consult confused her. while we
came into the birth without any real solid plans regarding the care of
our son- it seems that it was predecided that we would withhold all
medical aid from him. yes, we were offered that option- highly
suggested that option. but chris and i- talked it through and decided
that we couldn't withhold medical treatment based on a prenatal
sonogram. we wanted current clearer pictures- so we could make an
informed choice.
while she was in the room chris decided to ask her why jedi was having
apnea episodes.
"because he has a chromosomal condition. his chromosomes are not
correct in the cells of his body". the neonatologist was telling us
how these trisomy babies just don't do well and there is no use to
poke around trying to find out how to help them. i told her that
maybe they don't do well because a majority of the doctors and nurses
exposed to them withhold care. that maybe they'd do a little better
if they were given a little bit of help.
later, when the nicu charge nurse came to visit we asked her the same
question about the apnea.
"i don't know, but i'll find out."
"good answer", chris said- relieved that someone was taking us
seriously.
we finally got the cardiac consult when the cardiologist came in that
morning.
chris' main comment was "why does it have to be all or nothing? just
because we aren't going for heart surgery, why does that mean we
should sit on our hands and not do anything for him?"
my main complaint was "why can't 'comfort care' be a cafeteria type
thing? why can't we put an asterisk next to it and define it
ourselves? why don't they ask us what we want comfort care to mean?"
ultimately we wanted comfort care to be this for jedi-
clean diapers
oxygen if he needed it
food- and the ability to get it in his body.
last but not least, love
the feeding tube came about the time we notice the tide turning. some
staff started to realize what we wanted. some remained in their
autopilot "comfort care" mode.
the nurse who came in to set the feeding tube just stood there
watching him have an apnea episode in his bassinette. she requested
him to be in the bassinette for the feeding tube placement. i asked
her "is he breathing?"
she said matter-of-factly, "no".
"babe, just get him!" chris said.
i pulled the bassinette closer to my bed and took him out- rubbed,
flicked, talked- and he began to breathe again.
another nurse came in later. i honestly can't remember what she was
talking about because after she called jedi "it" three times, i just
stopped listening and stared out the window. thankfully chris kept
listening.
once the tube was set- they put him on a feeding schedule that we
didn't know would surely starve him to death. his diapers began
showing uric crystals that the nurses called "brick dust" because
that's what it looks like in the diaper- rust colored dust. my friend
michelle was trying to score some donor breastmilk and texted me
asking how much jedi needed. i told her what he was taking and she
exclaimed how inadequate that was. we requested a bump up in his
feed. they didn't suggest it- we did. it just felt so strange. in a
normal baby they would have been all over any opportunity to up his
feeding. but since jedi was slated to die, why keep his tummy filled?
at the hospital chris was a strong and steady advocate for jedi. he
calmly and matter-of-factly would tell them just what we wanted them
to do. i have never cared more for him than i did during the times he
stood strong for his helpless son. such love- such passion. i felt
so proud to call him my husband.
and taking jedi home- felt so good to leave and be able to surround
him completely with love and deep and true comfort care*.

16 comments:

  1. (((hugs))) to you and chris! Disgusting how that precious baby was treated! The mindset of so many people regarding life is sick. I know you remember Teri schivo ....
    You and Chris I'm sure made am impression at least the staff will have it all in memory.
    I heard over and over "statistics show" xyz when I was forced in the hospital with Sebastian. I would always say "we are individuals not a statistic " and the staff and neonatalogist would say " we live by science" and my reply " I live by faith in God and the instincts he gave me"
    I fought for everything for Sebastian , as you know his "journey " is on my blog . Our situations were totally different I know but the attitudes very similar..
    I was told so many times he can't or won't do this or that.
    The big one was nursing... I was told him be born at 34 weeks he would not have sucking ability...but the only wanted him to have a bottle to which I said no...he latched on by day 2 never a bottle...
    Us moms and dads have to be the advocates for our children that God has loaned to us and you momma and dadda chris did just that !!
    God bless you both !
    Love u!

    ReplyDelete
  2. (((hugs))) to you and chris! Disgusting how that precious baby was treated! The mindset of so many people regarding life is sick. I know you remember Teri schivo ....
    You and Chris I'm sure made am impression at least the staff will have it all in memory.
    I heard over and over "statistics show" xyz when I was forced in the hospital with Sebastian. I would always say "we are individuals not a statistic " and the staff and neonatalogist would say " we live by science" and my reply " I live by faith in God and the instincts he gave me"
    I fought for everything for Sebastian , as you know his "journey " is on my blog . Our situations were totally different I know but the attitudes very similar..
    I was told so many times he can't or won't do this or that.
    The big one was nursing... I was told him be born at 34 weeks he would not have sucking ability...but the only wanted him to have a bottle to which I said no...he latched on by day 2 never a bottle...
    Us moms and dads have to be the advocates for our children that God has loaned to us and you momma and dadda chris did just that !!
    God bless you both !
    Love u!

    ReplyDelete
  3. Oh liz i am soooo glad you made a post like this! it is so true that the medical comunity does not see the "true life" these children have. How sad that a nurse would call Jedi an "IT" I just cried reading how insensitive she was. yes heart babies need "huge" amounts of calories or yes they will starve and how heartless the nurses were for not informing you of this. Thankfully you and Chris were not 'railroaded" into 'just let him go" but did advocate and made sure he was well cared for so he did come home and receive the love he was meant to have. The difference was your strength,hope and faith in God to provide jedi with what he needed to live out his days in comfort.
    This brings to mind my own mother who lost her own baby at a week of age back in the 60s....this child has no photos, my mother did not hold her(saw her at birth but she was transfered to a childrens hosp) and when she died she had no funeral the hospital just disposed of her....my mother was told "its better you dont see her" "just forget about it" and "you can try again". back then it was the norm to treat sick babies and mothers like this....oh how lucky you were to experience his short life!

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  4. Wow, you remember these things with such great detail; it is a testament to your love and desire to do everything for your son and it is beautiful. Can I add one more thing...for all the other mothers who will also read this? Remember when the NP came in while Elaine and I were there and you asked her (simply) for a better way to keep Jedi's mouth moist? She looked at you dumbfounded, almost as if she'd never been asked such a question. You told her the swab wasn't working so well, and she said she'd need to call over to Egelston and find out how they "do it over there." It was almost a passive way of her saying 'Why, what's the point...?' But every moment of your pregnancy and his life had a point to you, and to all of us who gladly walked beside you during these difficult months. You have taught so many of us about the true value of life, and a mother's innate desire to protect her child. Jedi made this world a better place.

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  5. I don't think I will ever wonder again why God wants me to be a nurse. I am glad that I am going to Mass next. I need His Grace to help me process the injustices against Jedi -- and oh so many who don't have advocates like you and Chris.

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  6. My mother's heart bleeds for you, Liz. I know that we are called to be merciful and that they need our prayers the most, but it's not a bad thing to make a suggestion that the staff not refer to a child as "it". My family are fervently praying for you and yours. Jesus be with you at this very hard time of processing all He has given to you. Prayers and love, Heather

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  7. Thank you for posting this. This will help many mothers and fathers in the future to be more aware. Even if a baby does have a problem, food and basic emergency care should not be withheld. I know I will take more notice when I deliver my babies in the future. So sorry you and your precious little son were treated this way.
    Angie

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  8. Thank you for sharing these practical experiences so we can all learn just how hard these babies need strong advocates.

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  9. Someone called YOUR BABY "it"??????????? That needs to be addressed. No baby is an "it." That is horrible. I just can't believe how uncaring the medical model is for just about everything. When my grandmother was dying and in a lot of pain, they wouldn't give her extra pain medication because of the potential for addiction. Her kidneys were failing, her body shutting down. Addiction was the least of her worries. It is very frustrating and there is a lot of cruelty involved, whether they mean it or not.

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  10. I believe Jedi was blessed to have you and Chris as his parents from the perspective that, he was your 7th child and you were "experienced" parents. Newer parents wouldn't have necessarily had the knowledge to ask for the kinds of things you did to comfort him, nor how to advocate for him. God surely knew what He was doing giving you Jedi to love. Peace.

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  11. my heart breaks for you just reading this and getting a glimpse of what you and chris had to fight for. thank you for your openness and honesty and taking the time to write it out. jedi was so blessed to have you and chris there to fight for him.

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  12. This is soo very sad. I am a nurse and it pains me that life is treated so disposablely. When my adopted baby was born (I was at the birth) addicted and placed in the NICU for 2 weeks I had to fight for his and mine rights. The DR. did not want to allow me access. I had already started breast feeding in the delivery room. The crew was busy cleaning up and so I just did it....no questions, just being mama. I had been caring for him and feeding him with a supplementer while at the breast...then they wanted to withhold him from me....oh no! Once that was all settled (big fight, lawyer involved within an hour) the charge nurse told me I could not hold him all the time and that when he was sleeping he needed to be in the bassinet. What? are you kidding me? I had to get the PA to put in the orders that I could hold him and do kanga-care as often as I liked and that I could sleep in the chair except during shift change. If was going to sleep he was in the bassinet. It took some fighting. Overall most of the nurses were supportive and glad to have me there. It meant a lot less work for them and they had more babies in the NICU than they could really handle. It was so very sad. I wanted to cuddle them all but I could not touch them. I know that I made an impact while I was there. Several of the nurses were interested in the supplementer I was using and were amazed that I was producing milk for him. He overcame great hurdles because of the love and affection (skin to skin TOUCH).

    You did all the right things and I am sure you and Chris made an impact. The sad thing is that you are the exception not the rule.

    God Love You!

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  13. I am so very sorry that this was how Jedidiah was treated during his life here with us. I realize that nothing I say can comfort you, so I pray that God, who is right now the only one who can comfort you, feels very near to you - as near as I believe He is. Jedi is very beautiful, and I know you love him so much. I'm so sorry.

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  14. And a prolife nurse is born. Lord, please allow Liz to be guided by your wisdom as she plows through nursing school bootcamp, grant her the energy needed as she learns to care for the lonely, give her husband the patience to endure a less engaged wife and mother, Holy Mary please rock her children to sleep in your arms so she may study late into the night, and Holy Spirit please guide her tongue so she speaks only with your words, your plan, your agenda.
    You take the North and I will take the South.
    May Christ hold you next to His Sacred Heart so that you may feel the warmth of His Love,
    m.a. from PTC
    RNC, MSN/Ed
    OB Inst.

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  15. OMG. "IT"?

    So insensitive. Even our pets we call them by he or she.

    Im so sorry for your loss. Hugs.

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  16. I sort-of randomly came across your blog this evening. I am a nurse; I work in the adult ICU. This post helped me re-re-define comfort care. I see the "why bother?" mindset at work quite often. I am so sorry that you were treated this way by people who were called to help others.

    Your posts are beautiful and inspiring. I will pray for your family!

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