My Sister just had her twins...at 29 weeks - Page 3 - Mothering Forums

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#61 of 80 Old 09-07-2011, 12:27 AM - Thread Starter
 
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She's definitely been asking-she has lists of questions that she writes down as they come to mind, to bring in and ask. The problem is, they only get to meet with a doctor once a week. So they have to cram all their questions into a 20 minute window-and barely get an answer...and the ones that they do get are so vaguely explained that they don't seem answered at all.


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#62 of 80 Old 09-07-2011, 08:34 AM
 
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Corrabelle, whoa. 20 minutes a week with a doctor with all of this going on? Is it HER doctor? Does she have one? I'm not sure at all how this works in Canada, but if I have questions for my doctor, sure I have to go through the nurses, who are pretty competent by the way, but I can at least get messages through to him and back to me in a reasonable time frame. There are also on call doctors who will call back directly (I'm not in a hospital setting, but I would think that in a hospital it would be easier, not harder, to get medical questions answered.) Are the questions she is asking direct?


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#63 of 80 Old 09-07-2011, 08:58 AM - Thread Starter
 
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As of now, family doctors are out of the picture. The twins have an NICU assigned preemie specialist-and they only get to speak directly with this doctor on thursday afternoons, for about 20 minutes. He's the one who works with the tech people, brain specialists, breathing specialists etc, and he'll tell the parents the results of any tests that were done-mri's, ultrasonds etc, lay out the "plan" for the next week and be on his way.
It was the same way when my son was in, and it was awful. We were there for 3 weeks before I knew "why" we were there, and what had even happened to my son.
 

Nurses will give some information...but not a lot. Just extreme basics. Sometimes my sister will ask them a question, and they'll say "i'll ask the doctor for you"...but it still isn't addressed until the next week.
It seems the only info that they recieve is rather last minute-when it's either too late to try to make an informed decision on something, or after something has already happened. 


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#64 of 80 Old 09-07-2011, 09:28 AM
 
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Quote:
Originally Posted by corrabelle View Post

The students aren't always even identified- (they seriously should be)...when it was my son, no one asked my permission to let a student nurse do anything with him. I didn't even know until it was too late, and suddenly my baby had a completely avoidable collapsed lung.
With  my sister's delivery, no one introduced themselves at all, except for one student, who turned out to be one of the best nurses there. (The only one who seemed to treat my sister like a human!)

You're right though, you should have the authority to say "no". It's too bad that they don't always even ask, or disclose the fact that they ARE a student.

 


That's awful! They should have something on their name badges or something - it's not like in that moment you'd have the presence of mind to ask everyone's status when they walk in the room... I hope you and your family don't have any more experiences like this... and I hope the twins will continue to improve! 

 


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#65 of 80 Old 09-07-2011, 02:54 PM
 
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I wanted to talk about fortifyers for milk - they are really common for young preemies. They basically augment the milk with extra calories in a baby safe way. You want to make sure the electrolytes are balanced and such, so it's more than just adding fat or adding protein to the milk. Some human milk fortifyers are actually made from human milk components. Others from other milk sources or other things.

This absolutely sounds dreadful. I wish I could send them a preemie doula - an experienced woman who can stand with them, take notes, encourage them to ask their list of questions and perhaps explain some of the basics in 1-2-3 type sentences. IT's got to be so overwhelming. Poor babies. Poor parents. So scary.

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#66 of 80 Old 09-07-2011, 04:15 PM
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See, this is why I ask questions. (I think I probably drive most doctors and midwives absolutely nuts.) I want to understand everything that I possibly can when it comes to the care of my body, and my children's bodies.
I think either A: they did explain the reason to fortifying her breastmilk to her and she either forgot, or B: was too overwhelmed with information at the time to understand it, or C: they didn't bother explaining the reasons.

I also think that they probably *did* consent to some form of study, but most likely like you said, without paying attention. They have so much to think about right now, it's almost like they need extra people in the meeting room with the doctor to ask questions on their behalf.

We only hear what the doctors have said through my sister and her husband-which is often like playing "telephone". Not that my sister and her husband are incompetent, they're both educated people, but like I said, they're really overwhelmed. I would be too.
I also know though that when my son was in the exact same NICU, there was a serious problem with lack of communication from the doctors and nurses to me. They would patronize me for asking questions at all, and then not really give me any real information.

I think it's really off though that even if she did "agree" to participate, they won't tell her what they're fortifying with. That's insane.
And if it's because it would somehow take validity from the study, then they need to tell her that, so that she can decide if she wants to continue to participate.
 

 


Yes, it's definitely overwhelming and tough to remember everything. And even in a calm, office-based consult, most people only remember a small fraction of what is said. (When observational studies have been run on this, they've found numbers on the order of 15-20%, meaning that people are missing/forgetting 80-85% of what the health care provider is telling them.) It's actually recommended that cancer patients bring an extra family member or a recording device to make sure they get everything.

 

As for not telling her what's in the fortification, if it's a double-blinded trial, that would be standard. That's what double-blinding means -- basically, only the researchers have the code to put together who was in which arm of the trial, and what their outcomes were. It reduces biased reporting and treatment. (Otherwise, it's just human nature to unconsciously nudge the answers in one direction or alter treatment style ever so slightly to align with what you think the study results ought to be.) However, once again, it would be extremely irregular to end up enrolled in an RCT without knowing.

 

I'm going to stop writing this down after this, because if you haven't done it yet, the suggestion clearly doesn't resonate for you (which is fine, really smile.gif), but if you call or email the patient advocate's office, you are way more likely to get actual, informed answers than you will from an online forum of strangers. (Just google the hospital name and terms like patient advocate, patient relations, etc. and you will find it. Every hospital has one.)
 

Quote:
Originally Posted by corrabelle View Post

As of now, family doctors are out of the picture. The twins have an NICU assigned preemie specialist-and they only get to speak directly with this doctor on thursday afternoons, for about 20 minutes. He's the one who works with the tech people, brain specialists, breathing specialists etc, and he'll tell the parents the results of any tests that were done-mri's, ultrasonds etc, lay out the "plan" for the next week and be on his way.
It was the same way when my son was in, and it was awful. We were there for 3 weeks before I knew "why" we were there, and what had even happened to my son.
 

Nurses will give some information...but not a lot. Just extreme basics. Sometimes my sister will ask them a question, and they'll say "i'll ask the doctor for you"...but it still isn't addressed until the next week.
It seems the only info that they recieve is rather last minute-when it's either too late to try to make an informed decision on something, or after something has already happened. 


I will bet money that if they call peds/neonatology and request an office/clinic appointment with their assigned specialist, they can get a longer time slot and get some questions answered. Also, again patient advocate/relations can really help with this.

 

It really sucks that this is the case, because everyone deserves to get excellent, thorough communication, but it's just the way it is in most places (whether publicly or privately funded.) If you know how to work the system, you can get way better communication.

 

Wishing all the best to your sister and her babies.


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#67 of 80 Old 09-07-2011, 05:25 PM
 
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oh your poor sister! ~Pi has some really great practical suggestions about how to get more information out of the system.

 

I hope you are feeling better and getting some rest yourself. Its excellent to hear how well they are growing and that they will try breathing on their own soon. I do remember from my IRL friends' NICU baby that they were told he wouldn't be able to nurse until they were getting ready to discharge him, but then, they ended up starting earlier and the nurses were all so surprised by his excellent suck reflex, her great milk production, etc. (His mom was able to EBF him with the exception that he was given extra calories- some kind of powder- mixed into a bottle of BM once a day even after he came home- for almost a year I think.)

 

 


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#68 of 80 Old 09-09-2011, 10:40 AM - Thread Starter
 
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Pi-yes, I forgot to mention that they did get in touch with the patient advocate's office (or our equivelent anyway). My mom is handling that for them, for now. She's been documenting everything and bringing it to them, since my sister is just so busy worrying about everything else. Obviously they'll be working with my sister though to make things better.
 I haven't heard anything regarding that yet, so I forgot to mention that. But yes, they did contact them, thank you for suggesting that! The social worker that they spoke with is working on a file (or something to that nature.)

The twins are now in isolation because they're both "carriers" of some hospital born bug that I can't remember the name of it. They aren't infected, but they carry it. (similar to being a carrier of gbs.) So now my sister can't touch her babies with her skin, she has to wear gloves and gowns, which really bites.
On the bright side, they're still getting chubbier.
Their wee bums looked like boney little dairy cows when they were born, but now they have honest to goodness bum cheeks, which makes us all very happy:) And their thighs are starting to look like baby thighs, and less like baggy pjs.

We still don't know about brain issues yet-they met with the doctor yesterday, and he didn't have any results yet. The little boy's swelling is going down though, which is really good. They're trying to avoid that shunt, as it would be there for life.
They also suggested that the little girl's damage might impair her vision to some degree, but they aren't sure. (Only because the dead tissue is in that part of her brain.)
They said that it's a possibility that she'll have vision, but won't be able to process it. Even that though really isn't too solid until they get some more tests done, and some more time passes. My sister did say though that she notices that both of them follow her voice, or a nurses voice, with their eyes as they cross a room. She was holding her finger up high over E's line of vision and slowly spanning it back and forth...and aside from going cross eyed a few times she was able to follow it:) (and really, even a full term baby would have a hard time with that...)
 

So that's all we know right now, and we're trying to focus on the good-as there is a lot that's going well for them. Their breathing is stable and they have good little lungs, they don't have the many heart problems that so many babies in the NICU with them seem to have, and they're gaining weight. They're also developing little personalities of their own, which is good for my sister to see. She's able to see the bigger picture, which helps tremendously. 
 


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#69 of 80 Old 09-09-2011, 10:52 AM
 
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I do not knwo how it works in Canada, but in US I would call "Patient Relations " Department (Or something simularly named) Tell them I am unhappy and taht the only thing that would make me happy is 2 horus conference with the doctor and Partient Relations representative

 

Quote:
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She's definitely been asking-she has lists of questions that she writes down as they come to mind, to bring in and ask. The problem is, they only get to meet with a doctor once a week. So they have to cram all their questions into a 20 minute window-and barely get an answer...and the ones that they do get are so vaguely explained that they don't seem answered at all.



 

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#70 of 80 Old 09-09-2011, 11:00 AM - Thread Starter
 
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I got the impression when talking to my sister on the phone last night that things are going a bit better with the dr and communication-but we didn't get to talk much about it. I'll ask my mom though if she knows what's being done now.
It's killing me that I can't be there with her! My mom was able to go with her to the "meeting" yesterday though and had a whole list of questions of her own for the dr. Sometimes it's good to have others with you for situations like that...and ask questions you wouldn't think to ask, or are too overwhelmed to ask.


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#71 of 80 Old 09-09-2011, 12:00 PM
 
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Quote:
Originally Posted by corrabelle View Post

So that's all we know right now, and we're trying to focus on the good-as there is a lot that's going well for them. Their breathing is stable and they have good little lungs, they don't have the many heart problems that so many babies in the NICU with them seem to have, and they're gaining weight. They're also developing little personalities of their own, which is good for my sister to see. She's able to see the bigger picture, which helps tremendously. 
 


That is all great news! I hope they continue to get better and things can calm down a bit for you guys in terms of dealing with the hospital. 

 


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#72 of 80 Old 09-09-2011, 07:42 PM
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Great to hear that your mom has been working that angle. It can really help.

 

I can imagine how frustrating it must be for you to be dealing with this on top of your own concerns. Hang in there.

 

Continued good thoughts to your sister and her babies.


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#73 of 80 Old 09-09-2011, 08:40 PM - Thread Starter
 
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A wee, fun update from today. T (boy) now has to have his arms swaddled at his side because he's so feisty that he continuously yanks out his feeding tube, and heart rate monitor. He's active!
E(girl) was on her tummy today, and lifted her head up, looked around, and then turned it the other way. The nurses were *quite* impressed that she was able to do that, and my sister got to see it first hand. She's very proud:)


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#74 of 80 Old 09-10-2011, 06:31 AM
 
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Quote:
Originally Posted by corrabelle View Post

A wee, fun update from today. T (boy) now has to have his arms swaddled at his side because he's so feisty that he continuously yanks out his feeding tube, and heart rate monitor. He's active!
E(girl) was on her tummy today, and lifted her head up, looked around, and then turned it the other way. The nurses were *quite* impressed that she was able to do that, and my sister got to see it first hand. She's very proud:)


Great news! It must be so nice for you sister to get to see them fight and act like the little people they are, not just helpless patients. I can't imagine how frustrating it must be for you to be on bed rest through all this! Hope you are doing OK and your sister's wee ones continue to rally. 

 

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#75 of 80 Old 09-10-2011, 03:57 PM
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Great news! It must be so nice for you sister to get to see them fight and act like the little people they are, not just helpless patients. I can't imagine how frustrating it must be for you to be on bed rest through all this! Hope you are doing OK and your sister's wee ones continue to rally. 

 

 

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#76 of 80 Old 09-10-2011, 06:06 PM
 
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Oh, love those happy updates! Thank you!!!

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Quote:
Originally Posted by corrabelle View Post

A wee, fun update from today. T (boy) now has to have his arms swaddled at his side because he's so feisty that he continuously yanks out his feeding tube, and heart rate monitor. He's active!
E(girl) was on her tummy today, and lifted her head up, looked around, and then turned it the other way. The nurses were *quite* impressed that she was able to do that, and my sister got to see it first hand. She's very proud:)



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#78 of 80 Old 09-11-2011, 03:35 AM
 
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Quote:
Originally Posted by corrabelle View Post

A wee, fun update from today. T (boy) now has to have his arms swaddled at his side because he's so feisty that he continuously yanks out his feeding tube, and heart rate monitor. He's active!
E(girl) was on her tummy today, and lifted her head up, looked around, and then turned it the other way. The nurses were *quite* impressed that she was able to do that, and my sister got to see it first hand. She's very proud:)


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#79 of 80 Old 09-11-2011, 12:20 PM
 
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What a lovely update!!!

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#80 of 80 Old 09-12-2011, 02:57 PM
 
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Such happy updates. :)


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