World's youngest preemie is going home!!! - Page 2 - Mothering Forums

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Old 02-21-2007, 11:17 AM
 
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WRT: "Wimpy white boy syndrome" My mom mentioned to me when ds was in the NICU(full term), I thought she had made it up. It's does make sense that it's a real term she would know, she's a CRNA.

It's wonderful that the little girl is doing so well. Did you see those pictures of the mom holding her, her face was just so full of love and happiness, it made me leak:
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Old 02-21-2007, 11:20 AM - Thread Starter
 
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Re: them keeping her, apparently her docs think she runs a risk of getting a virus. That is what they said on GMA.
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Old 02-21-2007, 12:21 PM
 
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Originally Posted by sarah1972 View Post
I know all about WWB syndrome. My WWB is a 26-weeker who's acting like a 24-weeker, but we're on NICU day 64 and he's still here

Anyway, I was at the U of I tonight visiting my little buddy and talked to them about this article because the University of Iowa is quoted in it, and they all swear (neos and nurses) that the dates are wrong, but I keep thinking it won't be long before some of these obstacles are overcome and they will find a way to save 20-weekers. This is the website. I've checked it out a few times. I know that the've saved a 12-ounce 22-weeker but she cried at birth, and of course was a 'she.'

http://www.medicine.uiowa.edu/tiniestbabies/
Its funny, but dh and I also said the dates are wrong. But this baby down in Maimi has a few good odds working with her. I remember when everyone kept saying to us, she is a girl which is good. We both thought- what are they telling the parents of boys?? Now we know
The three smallest babies from IL- I know the one from downers grove and the first two listed are Maggie's Dr. Again, all girls.

Maggie also cried at birth and had high apgar scores so although that was a great thing, it was still a long long road until she came home.

Half of me is very happy for the parents but the other half of me wishes the media would leave this alone. The chances of this happening in most nicus are slim and none. And for every baby like MAggie who was a 24 weeker who is doing well, there are 20 who are not.

"The true joy of life is the trip. The station is only a dream. It constantly out distances us."
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Old 02-21-2007, 01:58 PM
 
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I remember when everyone kept saying to us, she is a girl which is good. We both thought- what are they telling the parents of boys??
I know what you mean! I've watched the and 25-week girls move on up out of there before Emery. There is a 24-weeker, an African-American boy, there right now doing pretty well. What they did tell me in the beginning was that they could manage Emery, he would have a prolonged ventilator course, an extremely long NICU stay, several infections and pneumonia. I appreciated their honesty and they frequently keep telling me he's not the worst one they've seen, which always makes me feel a little better.

I wish the media would leave this alone, too. I think it really minimizes the stress/pain/joy/anxiety that the long NICU stays bring. Peoeple read it and think we hang out in NICU and knit booties until baby comes home. I remember my husband thought when Emery was born that it was just a matter of waiting. He said he wished he wasn't so naive.
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Old 02-21-2007, 02:57 PM
 
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I wish they would leave this alone as well.... Yesterday someone at work mentioned that if a 21 weeker could do so well... it must have been very easy for my 34 weeker. Sure, we did not deal with a lot of the things that other parents did, ie she was never on a respirator, but we dealt with plenty in the NICU. Syd'd apgars were 5 and 9, and it still was 6.5 weeks before she came home.
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Old 02-21-2007, 06:11 PM
 
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I am a little surprised that people have used this case to extrapolate how a such-and-such week baby does...or how they think they "ought" to do...

:

I had a comment about Adara too. No she didn't need ventilated (5 minutes of CPAP at birth then to room air), was pretty ready to eat (needed a slow start), no feeding tube (it was a possibility when she was moved to full feeds and started refusing), or have anything majorly wrong (just had issues with the magnesium levels from all my mag sulfate, the levels were higher than they had anticipated and lasting longer than expected)...

HOWEVER that does NOT mean that she didn't really need to be in the NICU...because you know I WANTED her there, right?

"If they can save a 21 weeker, why would a 33weeker even need to be there?"

"You should have just taken her home! You let those doctors take her for no reason."

Oh the comments I have heard from people...blessedly ignorant people who have the luxury of not knowing what it means to have a preemie, not having to spend even a minute in the NICU...

No my baby wasn't the smallest (by any STRETCH) nor the sickest (her report reads like a textbook case of how WELL things can go!), but that does NOT mean she didn't "need" to be in the NICU, or have an IV, or be fed by TPN for the first two days, or anything else!

Okay, okay, sorry, sometimes, I wish people could understand, and then I remember that I wouldn't WISH anyone have personal knowledge of the NICU...no matter how much they upset me and make judgements...

So I'll hop off my and thank you for listening to me rant...

Angela - wife to my gamer hubby and SAHM to Handsome autismribbon.gif 3/6/03 (~35wks), Princess 8/9/06: (33wks) - we are HELLP survivors, Bubbalicious 9/15/09 (FULL TERM!), and pos.gif oops...here we go AGAIN! (June/July 2012?)

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Old 02-21-2007, 11:40 PM
 
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Originally Posted by sarah1972 View Post

Anyway, I was at the U of I tonight visiting my little buddy and talked to them about this article because the University of Iowa is quoted in it, and they all swear (neos and nurses) that the dates are wrong,
I've read 2 or 3 articles now that have stated she was conceived through IVF, so the dates can't be wrong.

Jillian wife to Ryan and mommy to Janelle Ashlynn (9/09/2002), Kincaid Chance (3/29/2004), Travis Neil (8/13/2007) and River Anderson (5/02/2009).
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Old 02-22-2007, 01:42 AM
 
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I have to agree about what people say after hearing the 21 weeker. Does anyone realize the odds of this happening??? I almost dont want some parents to see my baby becuase they may think- well Maggie is ok so my kids will be ok.

Also, as Bob used to say in the nicu- all the parents have different crosses to bear. That full term baby in the crib over there- well even though he dosent have a vent, he may need a heart transplant like the little guy in ours. And dont give his parents dirty looks because they get to hold him, they still have a nightmare in front of them.

As of right now, if I had a dollar for every person who has emailed me a link, called me, told me about this baby in FL, we could go out tonight for a fancy dinner with a bottle of wine. A couple of Bob's patients even brought in the newspaper to show him.

"The true joy of life is the trip. The station is only a dream. It constantly out distances us."
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Old 02-22-2007, 04:29 PM
 
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WOW.... 10 ounces is 283 grams.... They told us babies HAD to be at least 24 weeks and 500 grams for survival. We were told that under 500 grams the IV tubes and intubation tubes are too big.

Wow what a tiny baby.
our hospital semi-routinely intubates babies who are smaller than 500g and I know at least one who survived it really, really depends on the baby and the hospital.

oh Amy, I know everyone is like "have you heard about that 21 weeker????"

-sarah-
mom to three, 4 and under.
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Old 02-22-2007, 05:04 PM
 
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I'd already heard it before so it wasn't too much of a shock when I was told a few times that little caucasian boys were the wimpiest. It didn't really phase me and ds did remarkably well. Hadn't really thought about it before but maybe it had something to do with Dh being half Cuban?
After we knew my Zav was going to be ok, the nurses told me they were praying while I was in the OR that he would be a girl, because the boys dont survive nearly as often.
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Old 02-22-2007, 06:40 PM
 
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I checked out the tiniestbabies web site that Sarah972 posted. It's too bad they don't have more follow up info on those babies. Some of them would be 6 or 7 by now and the last info is from when they were discharged or 1 or 2 years old.

I looked at the baby born in Miami and it says she is the "product" of in-vitro fertilization. So I guess the dates are right but I wouldn't want someone calling my daughter a product. : Couldn't they say "conceived by IVF" instead?

The article on the baby bugged me too. I wish they would have put more info in about how rare this was, how hard it was for the parents to have her there, etc. Now everyone is going to think you can just pop out a baby at 21 weeks and it's no big deal. And it's certainly no big deal if your baby makes it all the way to 32 weeks or 35 weeks or whatever.
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Old 02-22-2007, 10:21 PM
 
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I wished that Tiny babies site had longer outcomes too.
Everyone is happy to have their baby home, but I wonder how many have long term problems and developmental delays.
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Old 02-22-2007, 11:07 PM
 
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I wished that Tiny babies site had longer outcomes too.
Everyone is happy to have their baby home, but I wonder how many have long term problems and developmental delays.
I myself have proof about 3 of the babies. The two that were listed as the tiniest were born at my nicu. The second smallest one is 18 now. She is slight for her age but was an honor student all thru high school. Our nicu keeps close tabs on her including a 15th birthday party and pics w our Dr.
The smallest was born 2 years ago. My home health nurse also takes care of her. She is actually doing better than her sister is. Both are doing well, as well as expected for micro twins. Neither are on O2 anymore and they are moving along and strong girls.

the one in Downers Grove IL, was delivered by my OB practice over 5 years ago. She spent 3 mos in the nicu and lives in my area as well. A friend of mine is related to her by marriage. The girl is 5 yrs old now and although healthy, about the size of a 3 yr old and slender. Her parents got pregnt a few years later and delivered a full term healthy boy.

My nicu does follow up for several years and encourages babies to come back as they grow. They had have college graduates come back to visit and usually the Drs etc remember these kids!!! I dont know how they do it, but this nicu remembers everyone and where they live, the siblings etc.

"The true joy of life is the trip. The station is only a dream. It constantly out distances us."
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Old 02-23-2007, 01:13 AM
 
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I've read 2 or 3 articles now that have stated she was conceived through IVF, so the dates can't be wrong.
They still felt it was off by a day or two for whatever reason. Who knows?

I agree with everyone about being sick of hearing about this. Everyone keeps telling me that if a 21-weeker is fine then my baby will be fine, too. It's really hard to explain that yes, in theory, my baby should be doing pretty darn well. I usually just say that they gave Emery an 88% chance of survival, so that means that 12 babies out of 100 didn't make it. The way the media portrays it makes it hard, though, to get across to people.

Oh, and Amy, my mom toured that NICU. She said that actually have a gram unit, where the micros go. Amazing what they can do for kids up in 'your' NICU!
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Old 02-26-2007, 01:49 PM
 
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Its funny, I thought this whole baby thing would bring back my PTSD. But it helped it because this whole thing angers me. The media painted this rosy picture of this tiny baby going home. When in reality, the parents the last week had to deal w O2 issues, monitors, taking care of a baby who could get apnea any second, hoem health care worker woes, taking this baby to the uptenth appt for "follow up" or as most preemie parents know- getting readmitted for whatever.

If I had a dollar for everytime someone said to me "did you see that baby in FL?" I could go for a nice dinner. I have been replying "YEs and I want you to remember- she is one in a few billion, most die. Also, for every Maggie who is doing really well, there are 20 babies with the exact same dates and weights as Maggie who are not, so dont assume." It has shut a few people up and others see it as educating.

"The true joy of life is the trip. The station is only a dream. It constantly out distances us."
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Old 02-27-2007, 02:17 AM
 
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"YEs and I want you to remember- she is one in a few billion, most die. Also, for every Maggie who is doing really well, there are 20 babies with the exact same dates and weights as Maggie who are not, so dont assume." It has shut a few people up and others see it as educating."

For some reason this just made me tear up. I think because we were discussing maggie and emma and just how different each case is recently. Ok, wiping the tears and putting on my viking hat!
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Old 02-28-2007, 06:41 PM
 
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[QUOTE=munkeesmama;7413153For some reason this just made me tear up. I think because we were discussing maggie and emma and just how different each case is recently. Ok, wiping the tears and putting on my viking hat! [/QUOTE]

sorry elaina! I didnt mean to upset you but to point iut how dismissal people are.

"The true joy of life is the trip. The station is only a dream. It constantly out distances us."
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