PINK and BLUE?

Are you part of the NICU club? Do you have a child who is still struggling with the effects of being born too soon from preeclampsia? Share your concerns and stories here among parents who have been there.
princess_ame
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Re : PINK and BLUE?

Postby princess_ame » Thu Nov 17, 2005 02:28 pm

Boy do so many of those remind me of Lillian. I am always amazed when I look back because it seems like such a non-reality some days and other days it overwhelmes me at how blessed I am to have her. Thanks for sharing.

sandy
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Re : PINK and BLUE?

Postby sandy » Wed Nov 16, 2005 11:44 pm

What a powerful collection of words!

I have chills reading it.

Thank you for sharing this, and all you have done to spread awareness.

cassie05
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Re : PINK and BLUE?

Postby cassie05 » Wed Nov 16, 2005 11:20 pm

SO so true...I think more people need to realize this is our reality

paige_va
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Re : PINK and BLUE?

Postby paige_va » Wed Nov 16, 2005 08:57 pm

So true...all of them....

whosures
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Re : PINK and BLUE?

Postby whosures » Tue Nov 15, 2005 09:37 pm

You are welcome to e-mail the poem. It was written by a bunch of people on www.shareyourstory.org. Different people added a couple of lines here and there. I read it tonight and it went over very well. A lot of it was me because I kept adding to it before I sent it in. [:)] The nice thing about it is that you read it and you realize you really aren't alone. Seriously, you all should try writing one. It's very cathartic. Here's my one I wrote....you'll probably recognize some of the lines that I added to the group one.

Imagine…driving home one night and seeing fire in your car, only to realize that your eyes are playing tricks on you

Imagine…waking up the next morning and feeling “not right” and having your legs so swollen they won’t fit into shoes

Imagine…going through the entire day and realizing you haven’t stopped once to pee, even though you’re 25 weeks pregnant

Imagine…driving yourself to a store to take your blood pressure because of some scary things you read on the computer

Imagine….calling the doctor’s office and begging them to see you, the symptoms of preeclampsia fresh in your mind

Imagine…seeing the look of horror on your doctor’s face when he looks at your ankles and checks the blood pressure cuff

Imagine…being told that any protein in your urine is bad, you’re at +5

Imagine…being put into bed while nurses wrap you in pillows

Imagine…asking the nurse if you’re doing any better and seeing looks of sadness, regret and pity cross her face

Imagine…being transported to a different hospital because you’re too high risk, your 24 hour urine count is now +18

Imagine…going in for an ultrasound and getting a thumbs up from your baby

Imagine…waking up the next morning not able to see, a failing nervous system, blood pressure over 200, a pounding headache, more hallucinations and nausea yet still praying to stay pregnant as long as possible

Imagine…being visited by a neonatologist who tells you that your baby has a low chance of survival and if she does survive, she’ll be mentally and physically handicapped.

Imagine…the look on your husband’s face when he finds out your liver and kidneys are failing

Imagine…the feelings of thankfulness that the decision is out of your hands and the guilt that you feel because you are secretly relieved

Imagine…going in for a c-section and kissing your husband for what might be the last time

Imagine…knowing your baby is born but the only sound you hear is the door closing as they take her away

Imagine…having picked out the name Riley for your baby, only to find out that her new home will probably be Riley Hospital…if she survives long enough to get there

Imagine…being told your daughter weighs 26 oz.

Imagine…someone waking you up in recovery so you can see your baby through the glass transport unit

Imagine…the fear your husband feels as you are returned to ICU and the baby is taken to the NICU at another hospital

Imagine…24 hours after she is born, you’re taken to see her but you’re so weak you can only stand at her isolette for a few seconds

Imagine…baptizing your baby by yourself because you don’t know if she’ll make it long enough to get a priest there

Imagine…feeling the pain of seeing pregnant women

Imagine…leaving the hospital with some flowers and balloons, but no baby

Imagine…boxing up all of your baby things because it’s too painful to look at them in the nursery

Imagine…the looks on the faces of your family and friends when you try to talk about the future

Imagine…the first time you touch your daughter, it is to touch a tiny finger

Imagine…being told that she has a PDA but it can be fixed with medicine

Imagine…being told the PDA popped back open and she’ll need surgery

Imagine…trying to produce breast milk that your baby desperately needs even though your body isn’t prepared to produce it

Imagine…seeing three different ventilator types parked around your daughter’s isolette because she has to continuously switch from one to another

Imagine…signing papers to allow for surgery on a baby that weighs less than a pound and a half now

Imagine…seeing your daughter after surgery and finding out what a fighter she is

Imagine…tracing your finger across a 1” by 1” bandage that crosses half of your daughter’s back

Imagine…the pain of parents all around you losing their babies, grief and guilt mixed with happiness that it’s not you

Imagine…insensitive comments from well meaning friends like “can you put a ruler in there with her so I can see how big she is?”

Imagine…dressing your baby for the first time in doll clothes

Imagine…holding her for the first time when she’s two weeks old

Imagine…the blanket she is wrapped in weighs more than she does

Imagine…watching monitors for the slightest blip that says she has to go back in the isolette

Imagine…being told she’s well enough to come off the vent

Imagine…seeing her face for the first time when she’s one month old, after she’s been extubated but before they put the CPAP on her

Imagine…giving her a bottle when she’s two months old

Imagine…the joy of her hitting four pounds

Imagine…feeling the pain of seeing pregnant women

Imagine…preparing to bring her home the next day only to find out that it would be at least another week

Imagine…the excitement and fear you feel as you walk out of the NICU with your baby, and all of her assorted equipment

Imagine…her first therapist telling you your daughter is autistic even though she’s not even supposed to be born yet

Imagine…the fear of ever having another child

Imagine…the thrill when she walks before her first birthday, six months before the therapists had hoped

Imagine...the rush of emotions when your daughter runs past the doctor who told you she'd never even walk

Imagine…the happiness when she’s declared “caught up” when she’s only 18 months old

Imagine…knowing that no matter what happens, your life will never be the same

paige_va
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Re : PINK and BLUE?

Postby paige_va » Tue Nov 15, 2005 08:38 pm

I'm crying at that poem...

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julie f
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Re : PINK and BLUE?

Postby julie f » Tue Nov 15, 2005 05:08 pm

Julie, That poem was beautiful, heartbreakingly true... Did you write it? I'd like to send it in am email to some friends if that's ok?

I'm wearing my Preeclampsia Foundation tank top and Jack and I are both wearing pink and blue ribbons. We even got asked about them at the mall earlier.

cassie05
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Re : PINK and BLUE?

Postby cassie05 » Tue Nov 15, 2005 02:39 pm

I loved that poem, so sad, so true

mommy1st
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Re : PINK and BLUE?

Postby mommy1st » Tue Nov 15, 2005 02:09 pm

I am in my pink shirt today and my husband and son are both wearing blue! I was suppose to go to the hospital where Braden was born to hand out information in the cafateria about prematurity but Braden keeps on having these throwing up episodes so I decided not to to be on the safe side.

PINK AND BLUE POWER!!!, LOL :)

whosures
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Re : PINK and BLUE?

Postby whosures » Tue Nov 15, 2005 01:22 pm

I'm in my pink shirt, and Riley and Rick are wearing blue. Countdown to our vigil is about 7 hours. I'm reading an imagine poem to start the vigil. It was written by moms on Share. Everyone contributed a line or two. If you've never written one of these poems about your own experience, you should try it. It is really healing. I've also sent cards to the moms of preemies that I know and sent out e-mails to friends reminding them of the importance of today. Riley and I also did a newsbroadcast on Saturday and we have two radio interviews set up for today. Tomorrow, I'm giving a speech to the board of directors at the hospital where Riley was born. I'm leaving for our vigil in a few hours so that we can light luminaries and get our candles and everything set up. I'm so excited but I'm also a bit emotional about the day.

What can you do for pink and blue??

Here's the poem I'm reading...

Imagine.....your baby's birth weight being less than a bag of sugar or a 2 pound free weight or a 32 oz soft drink
Imagine…your granddaughter's tongue the same size as a tic-tac
Imagine...not hearing your child cry until he was a month old
Imagine…trying desperately to stay pregnant for as long as you can, even at risk to your own health
Imagine…giving birth only to be told that your baby has a 40% chance of survival and if she does survive, she will be blind, mentally and physically handicapped and never walk
Imagine…the smile on your face and the tears in your eyes when one year later, that same child RUNS past that same doctor
Imagine...having a hospital feel like home and your house feeling like a place you occasionally visit to sleep
Imagine…not seeing your daughter’s face until she was four weeks old because she was ventilated
Imagine…being able to fit your wedding ring on your child’s arm
Imagine…leaving the hospital empty handed
Imagine…planning your newborn’s funeral
Imagine…having the hospital call a week after the baby’s birth and asking if you’re having fun with your new baby…the new baby that you’ve never even held because he’s in the NICU struggling for life
Imagine…boxing up all of your baby things because it’s too painful to look at them in the nursery
Imagine…signing papers to allow for surgery on a baby who weighs less than a pound and a half
Imagine…the pain of parents all around you losing their babies, grief and guilt mixed with relief that it’s not you
Imagine…holding your baby when she’s two weeks old and realizing that the blanket she’s wrapped in weighs more than she does.
Imagine…feeling the pain of seeing pregnant women
Imagine…having to choose to stop breastfeeding the child you’ve already taken home in favor of his twin sister who is still in the NICU
Imagine…the fear of ever having another child
Imagine…agreeing to sign papers…to let your baby die before he hurts any more…
Imagine......Being afraid of, and afraid for, your child.
Imagine......Not even knowing who's lips, eyes, nose, or chin your child has because you can't see their face for all the tapes, tubes, and eye masks.
Imagine....Your husband knowing your nurses and the NICU routine better than you because he's been there for five days already before you ever even get to see your son.
Imagine...the looks on the faces of your friends and family when you try to talk about the future
Imagine...Being ecstatic when your baby hits 4 pounds, or 3, or 2...
Imagine…knowing your baby is born but the only sound you hear is the door closing as they take her away
Imagine... getting condolences instead of congratulations when your child is born.
Imagine... Not getting to hold your child until he/she is nearly a month old.
Imagine... hearing comment after comment on all the things people didn't think your baby would ever do.
Imagine... that some of the most peaceful times of your day are when you are sitting attached to a breast pump!
Imagine... how quickly the rough past fades away when your child first smiles at you.
Imagine…hearing your child’s last breath…suck in deep and full…as if his life depended on it…and knowing that this breath will haunt you always…
Imagine…trying to produce breast milk that your baby desperately needs even though your body isn’t prepared to produce it
Imagine…knowing your baby literally inside and out because of x-rays, heart monitors, brain scans and blood tests
Imagine…dressing your baby for the first time in doll clothes
Imagine…knowing that no matter what happens, your life will never be the same
Imagine....being able to turn this life altering, tragic journey into something that can help many, many other people!



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