Comments on: Hope or false hope? http://beautifulinmyeyes.net/archives/70 Happenings of Aidan with musings by his lucky parents Tue, 06 Jan 2009 12:15:39 +0000 http://wordpress.org/?v=2.3.1 By: abby http://beautifulinmyeyes.net/archives/70#comment-225 abby Sat, 15 Mar 2008 14:25:33 +0000 http://beautifulinmyeyes.net/archives/70#comment-225 Great post. We're in kind of the same position because, for a 23 weeker, Hallie looks pretty good, in spite of her issues (which are not immediately visible and hopefully will improve at some point). So we feel awkward when we stop in and see our friends at the NICU (which is about a ten minute walk from here) and they introduce us to a parent of a micropreemie currently on a vent or what have you. Still, it does give parents hope and hope is necessary and we remember quite well how much it meant to us to see Hallie's "primary primary", Ellen's former primary kiddo who had been a very very sick 24 weeker. He came into the NICU with his mom on his first birthday, and there he was, this gorgeous, playful and very chubby little boy. Day and night in terms of comparison to how sick he'd been. Hallie was maybe 2 months old at that point, still stuck on the vent, getting bigger but lacking in body fat, hooked up to IVs and wires and tubes and such and just to be able to imagine that there could be a day when our child was swinging in our arms kept us going. Now, at that point we had no choices and no illusions: we knew that we had opted to push on and that, as long as Hallie could begin to breathe on her own, there was a very very good chance that she was coming home, and we also knew that the rate of disability for 23 weekers was somewhere around 70%.So we knew that it could come out looking much worse than things did for this particular little one year old, but there was no going back and we did not want to go back. And we had done enough searching on the internet to find out what happens later on to micropreemies and we understood that there was a range of possibilities (though perhaps skewed more in the direction of good outcomes than bad---that would be an interesting and impossible study to do). Since I am a "Telly monster" like creature by nature, it was more possible for me to envision a doom and gloom scenario, so seeing a kid doing well gave me a corrective to my own natural curmudgeoniness. Great post. We’re in kind of the same position because, for a 23 weeker, Hallie looks pretty good, in spite of her issues (which are not immediately visible and hopefully will improve at some point). So we feel awkward when we stop in and see our friends at the NICU (which is about a ten minute walk from here) and they introduce us to a parent of a micropreemie currently on a vent or what have you. Still, it does give parents hope and hope is necessary and we remember quite well how much it meant to us to see Hallie’s “primary primary”, Ellen’s former primary kiddo who had been a very very sick 24 weeker. He came into the NICU with his mom on his first birthday, and there he was, this gorgeous, playful and very chubby little boy. Day and night in terms of comparison to how sick he’d been. Hallie was maybe 2 months old at that point, still stuck on the vent, getting bigger but lacking in body fat, hooked up to IVs and wires and tubes and such and just to be able to imagine that there could be a day when our child was swinging in our arms kept us going. Now, at that point we had no choices and no illusions: we knew that we had opted to push on and that, as long as Hallie could begin to breathe on her own, there was a very very good chance that she was coming home, and we also knew that the rate of disability for 23 weekers was somewhere around 70%.So we knew that it could come out looking much worse than things did for this particular little one year old, but there was no going back and we did not want to go back. And we had done enough searching on the internet to find out what happens later on to micropreemies and we understood that there was a range of possibilities (though perhaps skewed more in the direction of good outcomes than bad—that would be an interesting and impossible study to do). Since I am a “Telly monster” like creature by nature, it was more possible for me to envision a doom and gloom scenario, so seeing a kid doing well gave me a corrective to my own natural curmudgeoniness.

]]> By: Heidi http://beautifulinmyeyes.net/archives/70#comment-223 Heidi Fri, 14 Mar 2008 17:46:07 +0000 http://beautifulinmyeyes.net/archives/70#comment-223 You expressed it well - it feels like such a balancing act when answering questions, between wanting to let people know there is hope but not setting false expectations. We feel like we're trying to walk that fine line whenever people ask about Bennett. I remember one of his nurses saying they were careful to NOT use him as an example specifically because they were worried it would give false hope to new preemie parents. But when facing delivery so early, I sure needed something to cling to and I found only two stories of kids (on-line) that survived at 23 weeks gestation back then. Those stories made such an impact on me... I just needed to know there was a chance for Bennett. But we certainly did not anticipate this outcome. :) You expressed it well - it feels like such a balancing act when answering questions, between wanting to let people know there is hope but not setting false expectations. We feel like we’re trying to walk that fine line whenever people ask about Bennett. I remember one of his nurses saying they were careful to NOT use him as an example specifically because they were worried it would give false hope to new preemie parents.

But when facing delivery so early, I sure needed something to cling to and I found only two stories of kids (on-line) that survived at 23 weeks gestation back then. Those stories made such an impact on me… I just needed to know there was a chance for Bennett. But we certainly did not anticipate this outcome. :)

]]> By: Lindsey http://beautifulinmyeyes.net/archives/70#comment-220 Lindsey Wed, 12 Mar 2008 03:38:43 +0000 http://beautifulinmyeyes.net/archives/70#comment-220 Great post! I think you are right, some reality is important but hope is absolutely necessary to keep you going every day. I try to do this with my blog, I could easily paint a rosy "everything's okay" picture but I think it's important to tell the good and the bad. I think it would be awesome to offer ante-partum and NICU support to family's who are feeling so lost. Great post! I think you are right, some reality is important but hope is absolutely necessary to keep you going every day. I try to do this with my blog, I could easily paint a rosy “everything’s okay” picture but I think it’s important to tell the good and the bad. I think it would be awesome to offer ante-partum and NICU support to family’s who are feeling so lost.

]]> By: JoDee(p-l) http://beautifulinmyeyes.net/archives/70#comment-219 JoDee(p-l) Wed, 12 Mar 2008 02:02:58 +0000 http://beautifulinmyeyes.net/archives/70#comment-219 Forgot to add those pics are adorable Aidan is getting so big Forgot to add those pics are adorable Aidan is getting so big

]]> By: JoDee(p-l) http://beautifulinmyeyes.net/archives/70#comment-218 JoDee(p-l) Wed, 12 Mar 2008 02:00:23 +0000 http://beautifulinmyeyes.net/archives/70#comment-218 This gives me the same feelings. I am volunteering with our NICU with a partent to parent support and I was just assigned my first mom a week ago her son was a pound and a half bigger then Lexie at the same gest and did very well in NICU but I felt like giving the positive was good but at the same time I also wanted to say "hay it is not all easy"(and Lexie was a 34wkr) the mom really wanted to know that things have turned out good for us which yes they have but we still have speech issues and she is still so much more immuture then other kids her age not to mention any possable LDs yet to be found if they are there. So yes I did tell her that she has done well but made sure to mention severl times that she does have/had delays. I know that when I start the next part of the program(a visiting unassigned walk through of the NICU to visit & support)I will feel the same. It is very hard to give hope/false hope when you want to scream that no it is not as easy as our wonderful kids make it look. It is a very hard balance to walk and hopefully I will be able to find that right in-between. It is also hard to read the parents and see what they want some want to just hear the good and some want to know it all. This gives me the same feelings. I am volunteering with our NICU with a partent to parent support and I was just assigned my first mom a week ago her son was a pound and a half bigger then Lexie at the same gest and did very well in NICU but I felt like giving the positive was good but at the same time I also wanted to say “hay it is not all easy”(and Lexie was a 34wkr) the mom really wanted to know that things have turned out good for us which yes they have but we still have speech issues and she is still so much more immuture then other kids her age not to mention any possable LDs yet to be found if they are there. So yes I did tell her that she has done well but made sure to mention severl times that she does have/had delays. I know that when I start the next part of the program(a visiting unassigned walk through of the NICU to visit & support)I will feel the same. It is very hard to give hope/false hope when you want to scream that no it is not as easy as our wonderful kids make it look. It is a very hard balance to walk and hopefully I will be able to find that right in-between. It is also hard to read the parents and see what they want some want to just hear the good and some want to know it all.

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