"Stephanie, because emotions can be misinterpreted in blogs and because I received an email from one of your current readers (since your blog is now open only to who you choose to let in) about what was being said, I am going to choose not to respond to your comment."
My comment was to sum up *my opinion* of what I gathered from your input, without using names of course. I wanted to show that not everyone is bitter toward neonatology, and that with parental consent and parental input, people are more likely to have positive reactions toward neonatology and their children's lives. Here it is:
"FYI...I asked preemie moms who frequent my blog to share their experiences with NICU consult or lack there of, opinions of neos in their NICU, their perceived understanding for why as Drs they do what they do, how much they were or were not told about long term outcomes, their overall perception of neonatology and their particular NICU.
"Out of all 8 responses from babies born under 26 weeks gestation, (I'm only counting these respondents for this point), the overall consensus was they were informed of the long term outcomes, given the option of comfort care vs resuscitation (there were 3 who were born at 23 weeks, and all 3 of those parents were presented with the option of not resuscitating). A 24 weeker who went into full cariac arrest at birth was presented with the DNR option right away (our fellow NICU buddy) and every responder was grateful to neonatology for what they had done for their child. One responder, mom of a 26 weeker was not given options, and acknowledged it was because of his perceived gestational age even though he physically was responding more like a 23 weeker. In spite of this, she still expressed great thanks to neonatology and acknowledged the interest and desire of neos to still inquire how he is doing post-NICU.
Now granted this is only a handful of participants, however, I think this speaks for the changes that are going on in NICUs across the country.
With more informed consent and parental involvement in NICUs, I believe this is why we see parents with extremely premature children who see neonatology in a positive light. When a parent is aware of the possible outcomes and given an active role in treatment and decision making, I have seen a stark contrast in their perceptions of neonatology and the tone in which they speak about their child(ren), regardless of that particular child's health or development.
It's great to have research and studies, however, I think what speaks louder is looking at how things should and could be in NICUs, and noticing a similar trend in parental reaction to their child(ren) and what neonatology has done for their child(ren) when the parents were informed and their feelings/beliefs about treatment were respected."
I find it interesting that the author's most respected commenter called micropreemies "damaged fetuses whom nature meant to abort" (not from the post I highlighted, but another one months ago), but when I report that a handful of parents had a positive experience with the NICU, I'm somehow being insulting?
The question was raised about why neos do what they do? I answered it, and then got other's opinions. Those opinions are not welcomed, because they don't fit the tone that is constantly being projected on that site. Whenever someone comes in to try and paint a more balanced picture, things like her above response are issued.
I believe all NICUs should be family-centered, and that parents should have informed consent and be ACTIVE participants in their child's care. That's why I participant in discussions like this, because in spite of the statistics HH posts about people who are informed choosing not to resuscitate, I believe there are still plenty of parents who will choose resuscitation if given the option. Therefore, it is important that we look at how best to support these parents in their decisions. And after 24 or 25 weeks depending on which NICU, when the decision is not theirs to make, parents still need to feel comfortable with their neonatologists and nurses in the NICU. So why not share our perceptions and experiences in the hopes that one day we'll see all NICUs that mirror mine or others who were supportive, informative, and family-centered?
The other issue I have is new preemie parents easily find that blog through googling and blog rolls. I think it has A LOT of information. The problem is it is often sooo one sided. Don't we want to show all sides to a new preemie parent? This is why I *try* and get the positives across over there. As you can see it doesn't work out well.
So to the person who felt the need to email Stacy, what was wrong with the original post? And just in case the answer is my comment about being thankful my children are alive, (my "low blow"), there are 2 frequent commenters (not Stacy) who have repeatedly stated they believe their children would be better off dead, and this is *their* opinion, just like it is *my* opinion that my kids are not better off dead.
And here are some pictures to help illustrate why...
Oh, and my blog is private for reasons I've already mentioned. I had no issue questioning, debating, and bringing up what I disagreed with over at TPE when my blog wasn't private; so the underlying tone of me "hiding" something by only allowing YOU to read it is ridiculous.
12 comments:
No matter what it will never be a balanced discussion with some of the participants that frequent TPE. I have thought long and hard about the reasons that I read these blogs. And I can come to only one conclusion. I want to show people that not all 25 weekers (or less depending on your situation) are not fetuses that nature meant to abort.
However, I have noticed that no matter what I say in regards to how well my child is doing, there is always a comment that follows encouraging me to "wait until she is older" or "some problems are seen until late in the school years." News flash, I can't live my life waiting for the other shoe to drop.
One thing that has always irked me is that these things happen to kids who aren't born prematurely. A full 38-40 week gestation can result in just about anything under the sun. So NO doctor can tell me that should Caitlyn develop learning, behavioral, emotional, or psychological problems that it's because of her prematurity. As far as I'm concerned the doctor that does tell me that, when we are close to 7 years removed from teh NICU, isn't worth spit in my book.
I think that the view you take on your NICU and neos ultimately depends on the outcome of your child. Maybe I am wrong in saying that, but it seems that is what I have noticed after 7 years of blogs and message boards. If your kid has a positive outcome, you look favorably upon your NICU/neos. If there is a negative outcome, then by all means there must be someone to blame. And who better than the doctors?
I'm not an overly religious person, but you know what, sometimes sh!t just happens. And nothing we do or doctors do or don't do can avoid that from happening. Who is to say that if some of these parents decided against saving their children's lives that something else down the road wouldn't have come along to make them so miserable?? There's always a struggle in life. No matter what. And that just leads me back to the belief that you either look at the bright side, or piss and moan about it constantly.
I will tell you this though, going back and forth in an argument in the comments section will get you nowhere with them. You already know that. Which is why you took hiatus from TPE. While I still read, I rarely ever post. It's just not worth the time and effort that it consumes of me. There will always be people there ready to fire away at how wrong it is to take drastic measures when saving preemies under a certain gestation. And I'm sorry, but if that were the case, then my daughter would have had to "take one for the team." And I can't see any mother agreeing to those terms.
Nancy,
You're so right. It's just hard because instead of complaining about prematurity, NICUs, and neos, here was my honest attempt at showcasing how when parents are informed, empowered, and involved, their perception changes. Maybe it's true the outcome reflects parental reaction to neonatology, however in a case like mine for example, when I wholeheartedly believed EJ would likely be disabled by CP, I accepted that this would be our reality and wasn't angry with neonatologists for it. They told us what to expect, and like Heidi mentioned in her comments from my last post, anything that they do as 23 weekers, amazes me because I know what they were up against.
I know Serena and EJ are doing wonderfully and this probably does color my perception, especially related to my feelings on resuscitation. But my opinion will always be for parental choice to resuscitate and a parental choice to end treatment based upon the individual infant. Where resuscitation ceases to be a choice, I still struggle on that one. However, I see nothing unethical about a DNR and ending treatment in situations analogous to what we went through and others who have shared here as well.
I don't know what my long term goal will be over there, but giving up is so unlike me. I'm angry that only one side gets its voice in a blog that so many NICU parents happen upon. I remember the devastation I felt as I read the accounts of parents who hated their lives and talked about the incredible suffering of their children.
Now, over a year later, I have two kids who defied many odds, and yet like you said, I'm not out of the woods according to them because I have to wait until school age.
Well, like you said, I'm not living my life that way.
Thanks for your input Nancy, it is greatly appreciated, and it feels good to have someone agree with me :)
Like you, I was so well informed before I had Caitlyn. Granted we only had about 12 hours prior to her arrival, and I was only coherent for about 5 of those 12 hours.
The doctor actually said to my husband and I "If it comes down to it, who would you prefer that we save? Your wife or your child?" It wasn't a Catholic hospital, as a matter of fact, they perform late term abortions just a couple of floors away from the NICU. Which is some weird form of hypocricy if you ask me, but to each their own.
Within a couple of hours of my being initially examined and diagnosed with HELLP (no contractions, no dialation, no labor) there was a neo in my room. He laid it all on the table for me. We had all the information we could handle.
On day 5 when Caitlyn had her head ultrasound and it was clear Matt and I rejoiced in the aisle. That was promptly stopped by the neo saying, "That doesn't mean she isn't still at risk for some very serious life long disabilities." I stopped him and said that we needed to celebrate this small milestone. It is actually in the nurses notes "parents informed of results from head u/s; however indicated they did not want to discuss the remaining possibility of disabilities at this time."
I also believe that there are some cases in which parents aren't informed simply because they don't want to be. As in my case above. Not that I wasn't informed, I just needed one really good day for myself. Selfish maybe, but psychologically, I needed that at that time. But I do think there are parents that don't want to hear about the negative sides and the possibilities. Then when something bad happens, they claim they were never told. If you don't ask, you don't always get answers.
Serena and EJ are doing wonderfully. And that really has nothing to do with the things that can do and the things they can't do. It has everything to do with how you perceive their accomplishments. And when you get down to it, that's really all that matters.
It will always be a one sided battle because all of the statistics are stacked up against these kids. They have every study under the sun to back up the argument that micropreemies don't always fare well. But every once in a while, that 1% (or whatever the percentage is) creeps up. And you can't possibly discount that. Because that 1% is a crap shoot. And personally, those are certainly odds that I was willing to take with my child. It was the least I could do.
That's not to say that we didn't ever consider putting a stop to it all. We did. And every doctor, nurse, social worker, etc listened to our concerns and took them to heart. I couldn't have asked for a better NICU team that took care of my child. I always tell people that for the first 3 1/2 months of her life Caitlyn had the BEST and most expensive daycare in the state ;)
I think I'm going to follow in your shoes and stay away for a while from there like you did. I honestly felt sick all day after someone had responded to a comment I made over there with 'been there, done that, not impressed with that argument,' and I honestly wasn't trying to argue. I've always kept an open mind about the blog and all of the comments over there because, in the beginning, it was the only information I got.
I chose my followup neo because he used to look at Emery like a baby and not a pathetic attempt at human life. I just can't imagine telling my son 10 years from now that his life isn't worth it. It's much like my friend who has a Down's child Should she have terminated the pregnancy because of Down's? What about my other friend who has a boy who is wheelchair bound from spina bifida? Is his life not worth living because he is in a wheelchair. These were term babies. They suffered NICU stays and medical procedures and they didn't have a choice in their care, but their lives are worth it more because they are term?
Sara,
Like me, (perhaps even more so), you tried to be diplomatic in your point, and were nothing but genuine and non confrontational. A good point was dismissed by 'been there, done that, not impressed with that argument.'
I was not trying to cause an issue this time since I had my little "I'm not coming over to the dark side" comment the last time I commented..
It is the dark side over there, thanks to the persistent commenters who seem to have A LOT of time on their hands to post all those research stats. I wish they'd just WAKE up and realize we are not advocating for the suffering of children, but rather acknowledge the difficult decisions we had to make and relish in the fact that our children are alive; and for those who have lost a micro preemie they mourn their loss, and I am sure are not comforted by Helen's attempts at demeaning micro preemies by calling them "damaged fetuses whom nature meant to abort." That still makes me sooo mad!
When Emery crawled forward this week, it was magical to you. When Edwin pulled to stand and began cruising recently and when Serena took her first real steps today, I was beyond overjoyed. We don't ignore the hardships we go through as a family, but we don't live with a dark cloud over us either. We see the positives where they are, and to me, it is easy to see positives when we know what our children were up against.
I don't think I'll try anymore either. I feel so sad for the new moms of preemies who find themselves looking for balanced info over there. Thankfully not all blogs are private like mine, and I know if they find your blogs, it will give them the hope and support they need.
Firstly I would like to say thank you for allowing me to follow your beautiful children and all their wonderful progress via your blog. Secondly, I can't imagine not wanting to at least try to save your baby. Now I'm not involved with TPE like you, I have visited but quickly left due to the negative comments and feel of that blog. I choose instead to surround myself with those like me who have preemies and have had a positive out come despite knowing the risks. Granted my children where not born as early as yours. I started preterm at 26 weeks, thankfully they held me off until 30 weeks, I feel my children had the best possible NICU stay, the staff and doctors never sugar coated anything and always told us of all possibilities and risks. I have to wonder if those who don't feel they were informed did not do their own research. I think it is only natural when presented with a situation that you would want to educate yourself as much as possible about it. With all that said had my twins came earlier than they did at any point I would have wanted to do whatever possible to resuscitate them. I just can't imagine not wanting too. I hate that this is going on especially when people who are presently in these situations are searching for advice and answers and people who have been through it. I only hope they continue to look for those blogs that have a more positive tone, despite any disabilities their children may have. They are our children and like you have stated many times before we would and do still love them. I think you are a wonderful mom and a voice for your amazing children who will someday be able to personally say to you thank you for choosing life for me.
Well you know that HH can get my blood to boiling like no one else can..She is so negative, and feels the need to try and fling that on anyone who sees their child as anything other than a burden. She and I have went back and forth on several occasions, I don't know why I go back to PE honestly, yes some of the blogs can be helpful, but leave it up to HH to pull out her super woman cape and quote every "not so good" outcome story ever published..I think that you are right about parents need to see that their is good, if it were up to them then anyone delivering before 30 wks would be terrified, not all outcomes are bad..granted Kellar is only going on 2,and yes some things are diagnosed later, typically cp is diagnosed by what age 2 I think, but there are other things that may or may not come up, if they do so be it I'll deal with it then..I do at times feel like they regret or are upset that they "had" to continue care, mainly HH..She thinks she is the know it all of prematurity outcomes or something and is always so quick to try and knock someones "dream" of a normal outcome down, makes my stomach turn...( i told her she made my stomach turn once..haha..) sorry to ramble on but I seen nothing wrong with what you have done, heck remember my long post on seeing things differently..congrats on the steps serena, you picked a good day, my birthday!!!!
I'm still not going back and you can't make me :P I've never come across a group like them and they're very negative. I refuse to believe that a preemie has no worth and for them to insinuate that is pathetic.
I was just talking to a mom who's daughter, unfortunately, just passed away after being born at 29 weeks 2 weeks ago. Her email was full of accolades for the NICU at Baylor (where her daughter was) and how helpful all the doctors and nurses were. I don't THINK her opinion will change even after time goes by because they were VERY up front about their care with Kaitlyn. I think that makes the difference - no so much outcome, but how involved the parents were in all parts of the process and this is the environment that is happening more and more across the country.
I've been doing lots of pregnancy related research lately, as you know, and I've found EVERY NICU in New England, as part of the Vermont -Oxford Network is a 'family-centered' NICU to some degree. The NICU at Woman and Infants in Providence will not allow you to be part of rounds because of HIPPA/privacy issues (still one big room with lots of babies), but they're building a new NICU (that I pray we won't see the inside of) with all private rooms and parents will be involved in rounds then. Otherwise I had full access to all her records if I wanted them and all the doctors answered questions. The only issue I had was with the nursing staff but it was mostly due to the major shortage of nurses.
So... my advice to you is not feed the fire. You can't change their minds anyway.
And to the person that 'ratted you out'... please, thats pathetic. We're here to SUPPORT Stephanie in her life (with all its exciting new turns) and with her totally adorable kids - if you can't do that, why are you reading this?
Jenn,
Thanks so much for the support. I too am aggravated at the person who felt the need to email Stacy. Since I can't figure how to change it, I can only have 100 readers to this blog, and there are people who have asked to be added, and can't, because I've already hit my max, so it super annoys me that someone who is invited to read this is causing controversy in a situation that was not even controversial. What's controversial about asking people how THEY feel about their NICU? I care more about you guy's opinions than some study Helen Harrison copies and pastes.
I want to believe that Stacy tried to come on the blog and found out it was private and accused someone of emailing her, but I can't be sure. Either way, it'd be nice to know who is interested in causing issues, because I'd like to invite someone who really wants to read about S&E and my ramblings! :)
Sadly, I don't think so long as Helen Harrison is given free reign to vent her spleen on TPE that there will ever be a balanced discussion of anything on that blog. Perhaps it should be renamed "The HH Show." She can quote her "research" until the cows come home for all I care. It is interesting that the overwhelming majority of "research" she quotes is almsot a decade old. It is as if she refuses to acknowledge that any improvements have ever ocurred in neonatal care or in the NICU environment in the past 30 years.
I shall spend my time happily reading about the adventures of Serena and Edwin Jr. who bring a smile to my face! Much better for my blood pressure than Ms. Harrison's drivel.
Thanks everyone for your input. You guys are the best!
Anne,
You have an amazing sense of humor, and ALWAYS make me laugh with your sarcasm!
Glad I have you guys for support.
I especially love our onslaught on HH's long lost twin, Caryl Rosenthal, over on Preemie Mom Blogs!
Wow...I really thought you were quite measured and even toned over at PE. It seems dissenting opinions are just not welcome over there with a lot of Stacy's readers. I think Stacy herself likes balanced discussions, but there is a whole other group of women who just don't want to be part of one.
I think my DH said one of his buddies has a private blog and has settings that allow more than 100 invites. I will have him look into it and let you know if I find anything.
Congrats on the gross motor spree!!! Those are awesome when they happen!
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