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Sunday, December 28, 2008

Announcing "Extreme Preemie Syndrome"

I feel REALLY strongly about this.

There needs to be a new syndrome called: "Extreme Preemie Syndrome" or EPS!

Kaitlyn's issues have never fit nicely into any of the standard "named syndromes" ie: Autism Spectrum disorder, Pervasive Development Delay, Sensory Processing Disorder....etc.

My gut has told me for quite some time that something with Kaitlyn just isn't right. I've been always on the look out for what type of "syndrome" can I call it so that she can get the help she needs.

Maybe I've been looking for something that doesn't exist.

This weekend was particularly exhausting, because when Kaitlyn is in a busy environment (think Christmas parties) she goes absolutely bonkers and so does mom trying to reign her in. She rolls around on the floor, bounces off everything, can't listen, can't pay attention, can't do anything. it's really, really, really hard to control her. I'm also "tired" of everyone saying, "oh, waht a miracle she is, she looks so great." grr. why does that annoy me so much. Yes it's true, she's come a long ways, but why do I always feel I have to explain all the things that aren't just right.

I wish I could say, oh, she has EPS she weighed 1.5 pounds at birth and everyone would say, "oh" and leave it at that.

Being a parent of a preemie, you are often told by doctors, family and friends that "oh, preemies catch up by age 2."

This can be said for preemies of later term gestation, (like my son Quinn) NOT for micro preemies. Surviving Micro preemies are fairly new. Children born as early as our children were born did not survive all that many years ago.

Kaitlyn, like many other Micro Preemies isn't going to "catch up" by age 2 or 3 or maybe never for that matter. This breaks my heart. It leaves a huge open gaping hole in my soul.

There has been a recent thread of conversation on my micro preemie support group about long-term issues related to prematurity that don't "fit" any other syndromes.

I never really thought of ALL of Kaitlyn's issues being directly related to prematurity.... well that doesn't come across right, as I know her issues are all related to her being born so early, but I never considered that her issues are "unique" issues due to prematurity (and not other developmental issues), but they really are. The combination of her issues are directly related to her prematurity and they are the same as other micro children.

So often all of her therapists have told me: "Kaitlyn's issues are really different than any other of my clients." I had never really thought much about this statement until now. Kaitlyn is so strong (and advanced) in some areas but has many other issues that don't fit into any commonly diagnosed category.

There needs to be a newly formed label called: "Extreme Preemie Syndrome".

Our children missed out on major development (sensory, neurological, mental) when they should have been in the nice quiet womb of mom. Instead, they were subject to pain, torture, surgeries, loud noises, bright lights. Their little brains had so much growing to do, think of the size of a brain of a 1.5 Pound babies brain versus a full-term 8 pound babies brain? All that growth that was supposed to be done in utero NOT in a hospital.

I heard a mom once say to me, trying to explain their child:

"Think of it this way, you know when you need an electrician to work on the wiring in your house, but you get a plumber to do the work instead? So when you click your garage door opener, the lights on your house come on instead of the garage door opening. Our babies little systems just weren't wired correctly."

Here are some posts from my Micro Preemie Support group that got me thinking:

Stacy:

"P was diagnosed with PDD-NOS when she was 4 (maybe 3-it was so many years ago that I can't remember now). I accepted the diagnosis at first (knowing clearly that she was so different than other kids) but eventually fought to have it removed as she got older. Although she is VERY different than other kids, she no longer fit the PDD criteria. I still feel, to this day, that there needs to be another name for the uniqueness of our former preemies. Call it preemie syndrome, or whatever, but call it something. Many of our kiddos share the traits that make them unique yet the traits do not fit neatly on a form in order to accurately diagnose. The bottom line is though, getting a diagnosis can be very helpful in acquiring services in the public school setting.

P is happy at times. She has mental health issues so her happiness does depend on her meds. That may sound horrible but I've come to completely accept that she will need the meds. She has an anxiety disorder and pretty severe OCD-both of which are virtually completely controlled by her current meds.

As for the teasing... yes she was teased. The teasing was hard enough for all of us to handle but it what was worse (in my opinion) was how she was ignored by other kids. They simply refused to play with her. Her kindly teach told us it was because she was so smart and had an accent. But it never got better.

Her sensory issues made it difficult for her. If someone would slightly bump into her (as kids do) she would start yelling that they hit her. She also has a huge problem with tattling. She is a literal child and never can understand that there are gray areas. Black and white only with her.
It got so bad that I watched my precious child slip into a dark place. She couldn't understand why the kids didn't like her and was never able to grasp the concept of friendships. We ended up taking her out of public school and now home school. She is doing much better now.

I'll never forget when I first joined the on line list for parents of school aged (5 and older) kids. There I was in a place reading about lots of kids with traits that I thought were unique to Paige. I cried for days. I don't think it was because I was sad but more because I thought we had failed her in some way and that's why she was turning out to be so different. But, in reality, she was a lot like other preemies.

Hang in there Liz. Kaitlyn's uniqueness will become even more apparent as Quin gets older. I find myself constantly amazed at the things that T (Stacye's 2nd child: a late-term preemie son)can do, when in reality they are probably normal. lol"

And from Anne:

"I completely agree Stacey that there should be something called Preemie Syndrome.

When E was getting close to being discharged from the NICU, her neonatologist was talking with me one afternoon and said (warned?) that while E had "escaped" the more obvious signs of being extremely premature, like vision loss, hearing loss, major breathing issues, etc. that I should always be mindful that no child fully escapes the effects of her extreme prematurity, that it is simply impossible to have missed an entire trimester of gestational development and walk away totally unscathed.

He said that some children may have minor problems that are masked by more typical differences (some kids will never be athletic for example so you might not notice a minor physical limitation) but others have more obvious issues like feeding, sensory, behavioral, etc. that can not be explained away by the usual labels.

This particular neo thought the whole notion of "catching up by two" was a load of crap and as those of us with kids over the age two know, it is crap. He was an older guy who you would have expected to tow the traditional NICU party-line so to speak, but he was pretty progressive in his thinking.

Not to long ago I was talking with this neo (I live 100 yards from the NICU so often run into these folks in the neighborhood) about E's feeding and sensory problems and he asked me if my family/friends/acquaintances say or imply that E has these problems because of something I have done or failed to do. I realized that people do assume there is something I could do differently or should have done differently to prevent the feeding and sensory problems and thought about the comments I have heard: I gave her solids too early; I gave her solids too late; I had the wrong spoon; I wasn't persistent enough; I should have made my own baby food and on and on. So I told this to the neo and he looked at me and smiled said something to the effect of "if E had lost her sight to ROP would anyone have been saying there was something you could have done to prevent it or restore her sight? No one would suggest you could prevent or fix something like that but people do choose to believe that you can prevent or fix feeding and sensory disorders with some magic parental bullet."

We talked for a good while about how the medical community and society forget that there are unseen effects from the NICU which are just as life altering as the more obvious problems yet research to prevent these problems is underfunded or non-existent since society really could give a rat's ass about the problems these kids have. So maybe this neo and I are crazy. Maybe I just have a soft spot for him because after 3 months of pumping every 3 hours with meager results he told me it was OK to put the pump away and have a nice glass of wine and that I was still a good mother even if I couldn't produce any milk."

Thank you Stacey and Anne. You make me happy to have you as friends!

Let's get on the band-wagon to start a new label: "Extreme Preemie Syndrome" EPS!

And you blog readers, please help! Help educate your own NICU docs. Your own school districts. Let's get studies funded. Our micros aren't an experiment. Our kids our suffering and we as parents are tired of fighting to get them help.

50 comments:

thethomas said...

So true. So true.

Christy

Anne said...

For a mom whose kid has survived so much, you're very ungrateful. You're negative, and are judgmental of those who see the good qualities your little girl has.

She's not perfect and she's a lot of work. We get it. But maybe for once you could quit with your 'woe is me' crap and point out some of the joys this kid has brought you. You should read the blogs you link to more often. They have children with problems but unlike you, they can also see what a gift God has laid in their laps.

She's three years old and your Debbie Downer personality will soon start to have a lasting affect on her - YOU are going to make her feel like she's never good enough and you're going to blame it on some syndrome you want to create.

No matter what she's been through, she's PERFECT. Quit trying to fix her, ACCEPT her, and then try helping her be the best Kaitlyn SHE can be, rather than some mythical perfect, normal child you think she should be, and you feel robbed of getting.

Anne, mother to a not-quite-micropreemie

Anonymous said...

I have been following your blog for some time and have silently celebrated Kaitlyn's many accomplishments and "felt" all of her set-backs with you over the past three years. I have twins that were born at 35 weeks. One has had typical development, the other has not. I have one attending a community preschool, the other special ed preschool(she rides the "short bus" as you call it). Anyways, there are times that I mourn what could have been in terms of my two precious children accomplishing milestones together, interacting with each other in a "normal" way, etc. I almost lost both of them at 20 weeks (was dilated to 4 cm and found out at my 20 week routing u/s) and am so grateful that they are both here with me. I am my little girl's advocate and will do whatever I can to to make sure she has every opportunity to be her best but have stopped obsessing over every "abnormal" behavior I notice. She is who she is.. at times it is embarassing, at times it is funny, and at times it just is... My family and friends accept her for who she is and that is all I need. I didn't even consider the "short bus" stigma that you mentioned until I read your post. This is my child and I will do my best to make her aware that she is precious and just as important as every other child. I know it doesn't seem fair that some of us have to deal with developmental issues.. as a matter of fact.. it stinks.. but we do. I don't know little Kaitlyn but think she has overcome a lot.. and am proud of her and you too for your tireless advocacy on her part.. I was quite focused on having the right label for my daughter as you but then decided it doesn't matter. We deal with her issues, regardless of her label and try to celebrate all that she has to offer and focus on the positive. You should too. Your blog is getting more and more depressing. I want the old positive determination back in the posts.

abby said...

I agree with you, Liz. We also have one of those 'miracle' stories -- Hallie has defied the odds on so many different levels and, while she has ongoing and perhaps chronic issues related to her digestive system, potentially her immune system, and feeding problems attendant to these, she 'looks better' than anyone ever thought she would. Does that mean she's 'caught up'? Not in your wildest dreams. She is developmentally delayed across the board according to recent testing. Even more important, from my perspective, than the delays (which I do see her progressing on, day by day and little by little) is what her speech therapist calls her 'swiss cheese' development. On the one hand, she acts much like an 18 month old; on the other hand, she is whip smart, knows the entire alphabet in English and ASL, can count to 20, remembers nearly everything (and I suspect a bunch of these memories are painful) and has a pretty good grasp on causality. This therapist, and others, have said that they have never met anyone quite like her, developmentally. And this is not surprising given that about 11 to 15% of babies born at her gestational age survive. She has horrific sensory seeking issues, cannot self-soothe to save her life, and alternates between excessive focus and ADHD like behavior. Does she fit any of the typical categories/diagnoses? No. Does she fit in quite well with others who have been born way too soon. You betcha. Anyway, it would be useful for others to be educated about this; it would have helped us understand things earlier on. And it doesn't change the love we have for Hallie one iota.

Anonymous said...

I am very much agree with Anne's comment. I know lot of kind hearted people will say it's offensive comment but everybody has their own way to judge things and that's why the comments are for in the blog. It's not always fair to give nice comments even if you are not agree with the blogger.
Any behavior which is not acceptable by other and specially by the parents is unusual and there's nothing to do with extreme pre maturity. The kids are always exposed with harmful chemicals and pregnant mother too and that's why the autism is rising.If you always look at your daughter in different way she will surely feel herself different!Nothing was anybody's fault.

liz.mccarthy said...

I've spent all night being really upset by my annon and Anne's coments.

I almost replied right away, but instead muttered about it to myself all night.

I could sit here and pick the whole comment apart line by line, by I guess that would continue to make me more "ungrateful", I could also just delete the comment. Maybe I still will.

I love my daughter so much it makes my heart ache. Every night when I tuck her in after she is asleep I stroke her blonde hair I think what an amazing girl she is. I think how lucky I am for being able to be her mother. I want to protect her. I want to make her life as easy as I can make it for her.

Isn't that what all mothers want?

My desire to get help and do research and make a "label" is so that she can better be accepted for who she is. I forsee teasing in the future as she gets older. (I'll probably get picked apart by saying that). I want to help as much as I can while I still can.

I know other moms of older former-micros and their children do have issues. My heart aches thinking about that. I continue to do all I can to try to make my precious daughter's path as easy as it can be for her.

My point in this post was by making a label for micro preemies, it would be easier for us to get help. So we woudln't have to constantly explain our childrens' backgrounds. That the medical professional community would agree that their little brains and bodies were put to extremes that other babies never have had to encounter.

I run a support group for parents of micros, soo, soo many of us have to deal daily with therapists, doctors, school districts who don't understand our children.

I just want to help.

Dona said...

Why do you feel the need to explain things? Why not just agree that she is doing well and move on?
I'm not trying to be mean. I just think it is something people say, like when they ask 'how are you' and don't expect to hear a long answer, just a 'fine thanks'.
My daughter is in a wheelchair, on oxygen, attached to a feeding pump and having seizures all day, and people will still tell me she 'looks great'. It is obvious she isn't great for her age, but she is great for HER.
It doesn't mean they don't see the problems and it doesn't mean they are dismissing them, just choosing not to make them the focus.
I hope that makes sense.

Jeana said...

Liz- I think that you are an amazing person and an amazing Mom. I do not know you personally but have been following your blog for years. I can see how much you love your children. I have continued to follow your blog because I love how real you are and appreciate how much I have learned about micro preemies and their struggles. I have 2 full-term healthy kids. I can only imagine how difficult it is to see all the differences in Kaitlyn. They will become more noticeable as she gets older and as Quinn gets older. You will compare Quinn's progress to Kaitlyn's. All of that is completely normal. It does not mean that you love her any less. You want her to be "normal" and to fit in. What is so wrong with that???? Do not let other people make you feel bad for that. You have every right to feel that way. Isn't that what all parents want?? I know that is what I want for my kids.
To those of you who think that Liz is depressing and whining....Move on then...nobody forces you to read her blog. She is a real person with real feelings. She puts them out there for the world to see. If you don't like what she has to say, then don't read her blog.
Liz- I applaud your effort to try to make a difference in this world. You could just sit back and cry in private, but you have the strength to try to research and yes, put a label on your daughter and other micro preemies that do not fit the mold of other diagnoses. Keep up the fight!! Don't let the mean and thoughtless comments of people who have NO idea what you have been through bring you down. The world needs more people like you.

Anne said...

I owe you a bit of an apology. I won't rescind, as my frustration reading your blog yesterday is still valid, but I should have shown more tact. After all this is a blog and we only see a small piece of your life. But as you can see from a few comments, I am not alone in my thoughts.

"I love my daughter so much it makes my heart ache. Every night when I tuck her in after she is asleep I stroke her blonde hair I think what an amazing girl she is. I think how lucky I am for being able to be her mother. I want to protect her. I want to make her life as easy as I can make it for her. "

When was the last time you posted something like this on your blog? Or concentrated on the things she does do? How's her speech, what does she enjoy doing, what's her favorite book/show/color/game, what does she think of school, how did she like her Christmas presents, what's something funny she recently said to you?

Is she a HAPPY child??

When you were at those Christmas parties and people said "oh what a miracle," it's probably because she's walking, and running, talking and causing trouble as other children her age would, and eating on her own. She's not on a vent or in a wheelchair and having seizures as another poster pointed out. The word "micropreemie" comes with a stigma of severely handicapped children, and Kaitlyn has obviously beaten the odds in that arena.

The adults who know she is a micropreemie likely look at the "bonkers" behavior you mention and think it's probably related without being experts in the subject. Having a secondary syndrome is just something else you'll have to explain.

As for teasing, every child is teased about something. My gifted, full-term daughter has tics. It's "normal" for an EG child, but it's certainly not normal. She is picked on for it, but you can't just stop such behaviors and you can't hate every kid that makes a comment about them either. Yes she may eventually outgrow them, but for now, we help her learn to diffuse comments in reference to those behaviors.

Your time would be well-spent making sure your daughter knows what an absolute treasure and miracle she is so when the time comes that children focus on her differences (and it's not that far off), she has the self-esteem and pride in herself to dismiss their comments and be the bigger person.

Another thing to consider is one day Kaitlyn will find this blog - it is inevitable. Were you Kaitlyn, how would you feel about the things your mother, who is one of only a select few people in the world who should love you unconditionally, has written? What kind of burden will you be placing on her shoulders when she reads the all the burdens she has placed on yours? The best thing you can give her especially as a girl, again, is great self-esteem and self-worth, and were I her reading this blog, it would cut away at those things quite succinctly.

Just things to consider from another mom who is certainly not perfect but has more experience, especially with "not-perfect" girls.

Anne

Anonymous said...

Liz, all of these responses to your post just confirms the fact that you can't share feelings anywhere without being criticized. My water broke at 22 weeks, but I never went into labor. My twins had no fluid for six weeks before being born at 28 weeks. After multiple surgeries and five and half months later, they were both home from the NICU. They are now almost 2 years old, still not walking and just one of them is crawling. They just started sitting on their own this summer. I have no idea what the future will hold for them developmentally. How many twins do you know that didn't have fluid for six weeks? Anyway, when people ask me about them, I just say, "They're fine". If I ever try to explain some of their issues, I always hear, "Yes, but look how far they have come." People just want to hear that they are doing good and make me feel like I should be grateful that they are even alive and not complain about all of their appointments and how hard it is. I am grateful for my miracles, but, like you, I want so much more for them than just to "be alive". I have even had someone ask me several times when they are going to be "normal". How do you answer that question? After almost two years, I have given up trying to share my daily struggles with anyone, except my mom (who originally told me about your blog). I am so thankful that I have a place that I can come to and know that I am not the only one going through this! Thank you!

Anonymous said...

I am a Mom to a 23 weeker as old as Kaitlyn, and yes I get it. He does walk talk but soes have major sendory issues and people do say what a miracle he is and sometimes it does bother me but I have to agree with ANNE unlike you I am not negative and maybe because he is my and will be my only child I cheirh his milestones. Of late I hate reading your blog it's such a downer enjoy the little girl and you mention about Stacy and Anne read their blogs there is not pity party going on there--- or go read Hallie's blog. Wake up and start loving Kaitlyn.

ThePreemie Experiment said...

Anne wrote: "No matter what she's been through, she's PERFECT. Quit trying to fix her, ACCEPT her, and then try helping her be the best Kaitlyn SHE can be, rather than some mythical perfect, normal child you think she should be, and you feel robbed of getting."

Seriously? I had to read this quite a few times to make sure I wasn't misreading it.

If Liz had sat back and accepted Kaitlyn the way she was, Kaitlyn would not be eating my mouth right now. Instead Liz sought out the support she needed to get help.

Are you actually suggesting that Liz simply accept the fact that Kaitlyn does not act age appropriate during certain situations? What will happen when Kaitlyn does that behavior at age 5, or age 8? Will it be acceptable then? Wouldn't it be better to get help when she is younger?

Hugs and acceptance can go far when raising children but not when the life ahead of them MAY be filled with hard times. Trying to "fix" a behavior or action at a later time is much harder than helping to guide them at a young age.

Parents of preemies suffer. Why is this unacceptable to talk about Anne? Liz is normal. Her worries, anger, fears, concerns are all normal. If she wasn't going through these emotions... I'd be worried. She loves her child and wants the best for her.

Simply accepting them for what they are is doing a HUGE disservice to their lives! That equates to giving up. I for one will never give up on my child.

Your words to Liz are very similar to ones I heard from a pediatrician once. I was being scolded for worrying about Paige's behavior and was told to just let her be a child and forget that she was born premature. The following week Paige was diagnosed with Epilepsy and when her MRI came back it showed that she had right brain atrophy. The pediatrician never apologized to us.

Many doctors, therapists, educators and the general public are in the dark as to what it is like to raise a premature child. This mentality does a disservice to our children.

Preemies face long term impacts due to their prematurity. It's a fact. If your child has escaped some of the harder long term issues, consider yourself lucky. But, how dare you criticize those of us who deal with very real, emotionally charged, issues on a daily basis.

Liz, hang in there. You are a wonderful Mom. I, for one, am quite proud to call you friend.

Stacy

Anonymous said...

Hi!

This is Lorie and I read your all blog posts and I do feel that your blog has been focusing negetive
thoughts recently. The people who read your blog are mostly the parents who have special need children and people need some hope and positive thoughts so they will enjoy their children and don't feel worried all the time.The parents are already heartbroken and tired with fighting so much and there's nothing new you or Stacy can tell people.The preemie moms and special parents know their outcomes.Liz, don't get offended by the comments because people are not your enemies,they care about Kaitlyn even you are not related with them and it's very unfair of Stacy to interfere about somebody's comment in your blog.It's not Stacy's blog.It's wise to get help rather find out the causes of the problems because that give you lot of pain. If you want to help other people put something that everybody can get benefit from there.
Thanks.

Anonymous said...

This blog is yours Liz. If you need to vent - do it. If you are frustrated - write about it. It is not your job to be a Pollyanna for all preemie parents. I admire your strength and appreciate your candor. I think a future, grown-up Kaitlyn will be very proud of her mom seeing how she advocated for her and loved her with all her heart through both the easy and difficult times.

Anonymous said...

I have been reading this blog for such a long time. I'm a 25 weeker mom and a psychologist, and want to say the following out of concern and care-

Its pretty obvious that the deep emotional exhaustion of caring for your child (very well!) over this long period of time has starting taking a toll on you.

Whether or not you are aware of it, there are resentments you pretty blatantly state about your daughter. They come from worry, and love, but they are going to eventually destroy her self worth if you do not get professional help.

You are drowning in grief. You need help. I know it is not professional to do this, but I guess its the 25 weeker part of me speaking up too. Please, please consider speaking to someone to save your future relationship with your daughter.

23wktwinsmommy said...

Liz,

I am sooo sorry you are getting comments like Anne and anonymous.
You are open and honest here, and your love for Kaitlyn is so clear. You don't have to see Kaitlyn as "perfect", ignoring her issues, pretending everything is fine...THAT is neglect! Blogging is a way to vent so that your emotional pain is NOT let out on your daughter. It's a way to connect with other moms who KNOW how you feel.
I am taking my son to a speech clinic tomorrow to try and discover why he isn't talking and learn what I can do to help him communicate. He is two years old. He doesn't walk either. I could pretend he'll catch up and pretend prematurity didn't injure his brain, or I can get up and drive out to this appointment (and the many others.) I chose to be like you; confront honestly to myself and others that my micro preemie twins did not walk away unscathed, and instead of sticking my head in the sand I'm ready to fight...fight to have them have a better life, to be treated fairly in school, by therapists, by society. You're a fighter for Kaitlyn too. And it's ok to be upset about Kaitlyn's issues. I cry myself to sleep some nights thinking about the difficulties my kiddos face, and will continue to face.
Being sad about the struggles your child faces DOES NOT mean you love them less or are a bad mother. Please vent to me personally anytime. I only wish you could do it here as well without ridicule....
Again, please know I and so many other moms who are living your reality understand you love Kaitlyn as much as we love our micro preemies. Know that we are here for you.

Mir said...

I totally get what Anne and the psychologist are saying, but I also get what Stacy said. You should NOT give up, EVER, on Kaitlyn. But at the same time, you could concentrate more on the parts of Kaitlyn that don't need to be "fixed." I think Anne meant Kaitlyn is perfect in that she's exactly who she is right now, so she's perfectly Kaitlyn. Do you have a baby journal? It would be so sad for you to read your blog years from now and only see the hardships, especially if you don't have the good things written down somewhere else like a baby journal, you know?

If you get a minute, please visit Noah's blog. My son is a day younger than Noah and I think three weeks older than Kaitlyn. When I read Noah's blog, even though he's teetering on death, you don't get the feeling of despair and like the psychologist said GRIEF you feel when you read about Kaitlyn.

http://noahgrantjohn.blogspot.com/

I've been reading since Kaitlyn was a tiny baby and I hope you aren't insulted by what I wrote, but at the same time, if what us commenters have written helps you see your daughter in a more positive light, it's worth the hard feelings.

Just Me said...

First, I'm sorry that you are getting so many comments going into unsolicited parts of your life. I like advice on my blog when I ask for it, but when it is not asked for it always feels like criticism from people who don't know me. Not my favoite thing.

I think I know well what you are describing. My older brother was a micro-preemie for his day (now would be simply a preemie) with the same low odds of survival, and use of the frighteningly high oxygen concentrations of the 60s. He survived without the side effects considered most likely to be problematic at that time, but he came out of it with plenty of other issues: some learning related although he's very intelligent, some CP (I think and I'm a therapist), and a huge deficit in social skills, which I don't think he ever just picked up. So I can see what you mean.

I also remember that in my own fight to be diagnosed with (eventually) bipolar I reached a point I was losing my mind. I was so desperate I would have accepted ANYTHING, just to have a name and maybe hope.

And lastly, just for fun: better come up with another name. We anti-psychotic users have appropriated EPS. It means extra-pyramidal syndrome and is a set of really nasty and potentially permanent side effects. You don't want your daughter to have it:). I did once and it was not fun.

Jessica said...

As a longtime reader, the comments by Anne and others have left me steaming. As someone else said, if you don't like reading this blog, and want to read a Pollyanna, sugar-coated version of someone's struggle with a tough situation, go elsewhere. It is obvious to me that Liz deeply loves her daughter and is fighting for her so that she can get the most help available and be the best equipped to deal with life given her situation. If you have read the whole blog, there are many moments of triumph and appreciation of Kaitlyn - getting the feeding tube out, Kaithlyn eating a Happy Meal, Kaitlyn doing really well at Disneyland, etc.

Liz, I really appreciate your honest approach and your tough fight to get Kaitlyn the best help possible. Many others do as well. We know you only want the best for your precious, beautiful daughter. And it's clear you love her so much and think she's wonderful! Your blog has helped me to better understand how a dear friend has survived dealing with her micro-preemie twins and hopefully I am a more empathetic friend to her because of your blog.

Anonymous said...

I am the mom of a 24-weeker and can understand how some folks may see this blog as being less than positive at times. I admit I do like hearing about Kaitlyn's triumphs since they are inspiring to me - but it is Liz's blog, and Liz's reality - not yours or mine. Even if I do not agree with something she wrote or how she wrote it, and even if I would do different things as a micropreemie mom, I would never presume to tell Liz or anyone what to do on their own personal blog,unless she asked for the advice - would you want someone doing that to you? Except for the very few commenters who have genuinely expressed concern for Liz's well-being, what are you hoping to gain with your criticism? Do you think you can tell Liz "Hey your blog isn't what I want it to be" and she will change it to your liking? If you don't agree with her attitude, you can express it in a more caring way, as some have done, you can also choose to not read her blog and move on, but please skip the mean comments. That helps no one. Hang in there Liz :)

23wktwinsmommy said...

I'm posting again because I can't sleep...this has been bothering me since I read some of these comments last night. I have tossed and turned thinking about how unfair commenters have ben to Liz. How people can't understand that a label will help our children.
A label could help ensure our children received Medicare to cover the costs of therapies, medication, Dr's appointments, equipment, etc. It could help teachers understand that behavioral and learning difficulties so common with our micro preemies have a CAUSE and weren't caused by poor parenting. It could help well-meaning family members and friends that kindly place blame on us that it's a syndrome, not a result of what we are or aren't doing. It could mean so much to have our concerns acknowledged by the medical community and society at large. There is NO shame in having a diagnosis for our children. It doesn't mean we love them less because we seek to expand the understanding of others.
And I also want it to be ok for parents to scream PREMATURITY SUCKS!!! That it has robbed our children, and us, of a whole hell of a lot. We should be able to vent and say these things without having to follow up by saying we are thankful for our children, we know it could be worse, we love them regardless. This is all true and we have said it before. I find myself adding this disclaimer so that my family/friends without micro preemies know that I'm ok, that the burden isn't too great when I open up about my fears and concerns about the kid's health and development. It should be clear we love our children, and it's ok to be worried, upset, and frustrated. In fact, it's normal. We love our children, value them for who they are, and all of that, but do we need to type it every time we explain a challenge? Or is it obvious from reading and clear simply by the fact that we are researching, connecting, and advocating for our micro preemies?
Some people choose to include biblical quotes and thank God in every post, that's fine, I enjoy reading many blogs like that. But everyone writes differently, and expresses themselves differently...and that's ok. That's part of what makes us human.
You can hate the fact that your child struggles to breathe when sick, or struggles with eating, or with social skills, or with talking, walking, understanding, etc..I hate it. I hate it for my kids and all our preemies friends. I wish all were healthy...but wishing will not change the reality. Sitting back and being thankful is part of our journey, but getting up and fighting is part of it too. We live in a world that isn't always accepting; we see prejudice, racism, and hate too often. It should be normal to worry about how our children will be treated, and it's not enough that our family and friends love and accept them. Society should, teachers should, their peers should. And we owe it to our kids to do what we can to help people understand. Because through understanding comes acceptance, and that's what Liz and so many of us want for our children.
I hope Liz continues to honestly express herself and turn to those who understand. I hope readers recognize who Liz is, a caring parent hungry to make the world better for her daughter..I'm fighting right along side you Liz.

Anonymous said...

Liz, Thank you for your honesty and passion. I have a 27 weeker a little older than Kaitlyn and I read your blog because of your predominantly positive and hopeful outlook and your fearless candor. I am really sorry that your typical cheerfulness apparently made you a "denialite magnet". Check out the backlash when their fix of happy sunshine and rainbows gets threatened by a dose of reality! Hang tight, my friend, I am not the only one who is ever so grateful to know that I am not alone in my fears for my beloved son.

To Anne & Mir & lorie who think Liz is negative and doesn't acknowledge Kaitlyn's achievements: Do you people read this blog? HELLO--the Tubeytube is gone! Am I the only one who can read the guilty squees of joy and the happy dances behind the words "Eat" and "candy cane! happy meal! pumpkin pie!"? The positive outlook isn't gone, perhaps it is just appearing in a form you can't comprehend b/c you haven't been there.

Oh, and to the supposed "psychologist": Please come back and give us your name and where you practice, because I occasionally need help dealing with the aftermath of prematurity and I want to make sure I find someone who can really understand my situation and provide helpful insight without jumping to unfounded conclusions about me. In other words, I want to stay far away from you. Drowning in grief? Resentments that will destroy her self worth? REALLY? Does your licensure board know that you flit about the internet inflicting ill-founded unsolicited unprofessional advice?

Let's get back to the topic of this blog entry:

My son also experiences Preemie-syndrome. The leeway of time for "catching up" by 2 or 3 is passing, and the faint hope that the neos and nurses were right about that is fading now. He has overcome a LOT but not everything, and new hurdles are just beginning to appear now that he's in preschool. He has developmental, physical and behavioral issues that set him far apart from his peers, but looks "normal" whatever that means. Despite his myriad issues, he has few "labels" because he just doesn't fit the diagnoses. But, thankfully, he is "still disabled according to Social Security's rules", because I couldn't possibly afford all the copays (thankfully? Imagine the horrifying conflict I experienced over that concept-experiencing relief from words I would never hope associated with my child!) I dread the day when he forms enough cognizance to realize that other kids don't like to play with him and enough language to ask me why.

There is a reason that more isn't done to prevent premature birth. There is a reason that NICU's are in denial about the aftereffects of their services and, consequently, in no hurry to improve those services to improve outcomes. There is a reason my son can't get all the help he needs. It's because every time someone stands up and says there are impacts and asks other preemie parents to acknowledge and band together for the betterment of our own children and others...someone screams them down for being ungrateful, negative, out of their minds or what have you (see comments above this one for more examples). By revolting in the face of reality and refusing to acknowledge any perspective that isn't happiness and light about how perfect our preemies are, YOU (Anne, anon, Mir, psycho and everyone else who stuck their claws in Liz here, I mean YOU) are responsible for the poor outcomes of our preemies. Do you even realize how much damage YOU are doing to your children by refusing to acknowledge how hard they've had it and hiding those difficulties from public/doctors/other parents so that nothing will change?

If even we as parents can't agree that things could have turned out better, how will they ever get any better?

Kassie

Mir said...

Wow Kassie. I've read this blog for three years, and always shown my support, so my ONE comment to the contrary makes ME responsible for the poor outcome of your preemie?

How dare you accuse me personally by name of such things.

Obviously this is the first thread of comments you've ever read on Liz's blog, because otherwise you would have seen hundreds, if not thousands, of supportive comments to her, Kaitlyn and Brian over the years. Including several by ME personally.

Quit blaming everyone else for your son not getting the help he needs. LIZ has gotten the help Kaitlyn needs, hasn't she? Does she have some magical help fairy that you don't have access to? How about the other bloggers that Liz links to?

YOU are responsible for the outcome of YOUR child, not some damn commenters on a blog that isn't even yours.

abby said...

Like Stephanie, I'm posting again, too, because this has been bugging me as well.

Is there upbeat and downtrodden, happy and sad, elated and frustrated on this blog? Absolutely. And there's a reason for this: life with micropreemie kids is not all a ray of sunshine. It's not all about miracles and thanking God or higher powers for them. It's about the amazing milestones--that we above all other parents appreciate more than anything--and about the ongoing deficits and frustrations. There's an ebb and flow to this (as I suspect there is in all parenting, but what the heck do I know about conventional parenting?) but it's more medicalized in our lives. It's also accompanied by greater fear and trepidation; for the most part, the kids of full termers don't agonize about milestones and meeting them to the same extent, or about eating, or even about vomiting (note: I said most parents of full termers, because there are indeed full term babies out there who have special needs much worse than those that Hallie and Kaitlyn face). Our lives are also complicated by the fact that we parents are constantly barraged by an army of experts--doctors, specialists, therapists, and even other parents--and are told that we are not doing a good enough job (either directly or indirectly; see my comment concerning the dentist who wanted us to get a G-tube for Hallie because her teeth are rotting for one recent case in point). So we're constantly hearing we're not doing enough, not good enough, and in reality all of our energy is directed at helping our children, and our families, survive and thrive.

The point is: things go in cycles. A month ago we were desperate and depressed and near a breakdown. The stress of the recurrent stuff with Hallie was really getting to us. This month we're great, and Hallie is feeling fine. If we can't vent on our blogs, where in the world can we vent about these cycles and ups and downs?

Parents of micropreemies do need to know that, as well as some of our kids are doing, it's not all rosy. Our doctors in the NICU were very clear in telling us this, and when I used to spout out the stats to my mother-in-law concerning things like disabilities, she'd attack me, accuse me of being a 'Debbie Downer' (her phrase, not mine) and even of turning Hallie into a disabled kid (as if talking about the high risks she faced was going to magically make her disabled). People have a hard time with the truth--and the truth is that our kids are high risk and cannot possibly walk away from this unscathed.

And like I said before, none of this makes our kids any less important to us or perfect in our eyes. It's just that it takes a huge toll on our families and is very stressful at times.

Finally, like Steph said and I forget who else repeated, a label might provide more in the way of services for our kids. Last month, we had 9 doctors visits. 9 copays add up, and so do all the meds, and this is without major surgery or hospital stays and god awful expensive special elemental formulas. Providing relief from some of these expenses is a very tangible benefit of a label.

Does that turn our kids into a label? Not at all. They are our children and we love them.

OK--off my soapbox and back to work!

Anonymous said...

I have been following your wesite for a little while know. I found your blog off of Evan Storrs. I also have a micro preemie that was born at 26 6/7 weeks weighing 1 lb 2 oz. She is know 4 and only weighs 27 lbs. She will never catch up to kids her own age in weight. She has done amazingly well considering. You have a beatiful family. michelleclark307@msn.com Michelle Knowlton

Anonymous said...

I'm sure I should hold my counsel, but I can't stand back and listen to people go after a mom who has been through what Liz has been through.

When you have lost two babies (don't forget Liz's first baby at ten weeks, even before Corrine), then the tragic loss of Corrine, then the gut-wrenching struggle of the NICU, followed by three years of feeding and vomiting hell at home, along with significant health and developmental issues, and then finally what she had hoped to be a normal pregnancy, only to end up on bedrest trying desperately not to repeat any of her previous experiences, but alas, having another premature birth (albeit at 34 weeks), and spending three weeks yet again in the NICU. What is that saying, until you have walked in another (wo)man's shoes.....

In any event, I scrolled back through Liz's last 8-10 posts, and they are overwhelmingly happy and joyful reports about their life with her beautiful family - Disneyland, Santa, Happy meals, getting the tube out, Kaitlyn's birthday party. Amongst those posts, it appears to me that she opens up about her feelings about new realizations and discoveries she is dealing with, as they are occuring. Like Kaitlyn's teacher's recommendation that Kaitlyn go to a special school instead of the mainstream school. This was unexpected and not what she had planned and, I daresay, not what she wanted for her daughter. I just don't know how anyone could expect her to be happy-go-lucky and upbeat in her first post about that. She posted her honest reaction and her feelings - in what I thought was a balanced reaction in her post on the "short bus". And of course, that post was about more than a special school, the recommendation brought to light issues that Liz had been thinking about but had not had someone confirm before, but now had put before her front and center. Again, why in the world do some of you expect her to not be grieving the difficulty of dealing with these issues for her family and for Kaitlyn for at least a few weeks after they got this information? Its not like she found this out months or years ago, and she is still dwelling on it - its been a few weeks, for goodness sake! She's still processing and accepting. She loves Kaitlyn exactly as she is, but that means she would like for life to be as easy as it could possibly be for her, and she just got information confirmed that it may be somewhat harder than she had hoped. Give her some time to be frustrated and to pound her fists! She will, as she ALWAYS does, move right on forward doing the very best thing for Kaitlyn and giving her the very best. Kaitlyn would not be where she is right now, as all of you are so hot to proclaim, if Liz had not done so well for so long.

And now, I will make my assessment - it appears to me that the comments were made by parents who did not have micropreemies and therefore do not get it at all or by parents who have disabled micropreemies or children with disabilities from other causes and somehow feel that Liz does not have the "right" to complain about her situation. I think this is exactly what the micro preemie moms who commented are referring to. Just because our issues may not be the same or even as bad as the issues that you have dealt with does not mean that they have not been difficult for us. I had a micropreemie only by the broader definition. She was born at 26 weeks and weighed 2 pounds. But she spend 103 days in the NICU and had an incredibly rough time of it. When she got home, the vomiting began and she quit eating. She ended up with a g-tube, which we were able to remove a few months before her second birthday. She is one of the lucky ones - she did mostly "catch up" by age 3, but we had our years of multiple specialists appointments, therapies, and feeding and vomiting hell. And the feeding and vomiting hell can only be understood by someone else who has been through it. And the three months that preceeded getting the tube put in when I practically stood on my head to get her to eat her bottles can only be understood by someone who has done the same to coax an infant to take a bottle who does not want one. And all of this while you are quarantined in a house for literally eighteen months. We did not really get to leave and live a normal life (but for the feeding tube and copious vomiting until she was 18 months old.

And although she "caught up", even today she is still in occupational therapy once a week for sensory integration issues, and she will be in speech therapy starting in January for the spring for her paralyzed vocal cord. Dinner still takes at least 45 minutes every night, and we still have eating issues. She threw up just tonight, after taking too big a bite of her hamburger (and this is after having had a fundoplication four years ago). She had pneumonia last SPRING, and it took three weeks (!) to get over. When she gets sick, I still refuse to take chances. Right now, I am having a battle with her pre-school teacher who will take the kids out on thhe playground if the temperature is above 32 degrees. I really don't like for my daughter to be out if it is lower than 37 or 38 (we live in Texas, and she is just not used to the cold temperatures and doesn't get a chance to get used to because they don't occur frequently enough). My point is, no one really gets that she is different because she was a preemie - I don't think I mentioned that she turns five in two days - on New Year's Day. She looks normal, every one thinks she is normal. And mostly she is. But she isn't completely. And that is mostly okay. But I hate that I have to feel stupid for arguing with people about things that I think she needs to protect her. My friends think I am overblowing things that she is in OT. Nevermind that the neurologist suggested it. And I have gotten to where I am hesitant to bring up the fact that she was born early with people because I feel like they just think I should give it a rest and get over it. But you know what - I will never get over it. And neither will she. And neither will Liz. And neither will any of us, really. And that is just the way it is. And anyone that thinks otherwise is in denial. And criticizing Liz for articulating it is like criticizing her for acknowledging that the sky is blue, as far as I am concerned. And saying that she doesn't love and appreciate her child, is just mean-spirited and idiotic.

Another extreeme-preemie mom,
Shellie (mother to Sarah - amost 5 and Rebecca, in heaven)

Anonymous said...

And one more thing - I love my child more than anything in the world. She is the love of my life. I wouldn't change her for anything - she is beautiful and smart and funny and loving, and I thank God for her every single day, many times each day. I cannot believe I am lucky enough to be her mother. I cry sometimes when we do some of the littlest things with her because of all the times I didn't know if we would get to do those things with her. I could not love her or want her any more than I do.

But it has still been an incredibly hard road to travel having given birth and raising a child born so early, and I would not wish extreme prematurity upon anyone. Add to it losing her twin sister, as Liz also experienced, and it definitely results in feeling sad and like I have missed out sometimes. You can call that "ungrateful" - I call it human. I am incredibly grateful to God for what I have been given. But I have had to learn to accept, and at times am still learning, what I have not.
Shellie

Melissa said...

Hang in there Liz. You are an awesome mother and wife. You are doing the best you can. I know it can get very overwhelming at times but just know that there is going to be the light at the end of the tunel. Kaitlyn is such a special girl who has faught her way through. I know exactly what your feeling, well can't say exactly exactly cause every story is different and nobodys shoes are ever the same but just hang in there. Kaitlyn is going to be something special you will see she already is and I know you know that. Sometimes it is hard not to focus on the heavy and hard stuff but keep your chin up dust yourself off. Sometimes when you just really start focusing on the wonderful things like she is walking and she can hear and she is able to see the other stuff will follow along. I remember for me I really got in a bad rut when I couldn't see anything else but all the bad stuff and I am not saying that you are at all because I have always seen you talk about how excited you are over the littest things which are huge for us.But whenever someone would ask how she was I would start listing everything she wasn't doing and for me it sounded like such a downer and I would hang onto every single word the Dr would tell me but then I started getting a different attitude about things and started saying you know what she isn't able to do this but you know what she can walk and she can talk and she can see things and she can hear things and she is able to eat a bit more now and it started putting me in a better place. I know its super hard for you with Corrine I deal with the same thing every single day but you have to start moving on from it and letting it go, now I am not saying that in a negative way like just let it go but meaning you need to start letting it heal and accepting that this is what happened and I am going to focus on what is here right now in front of my face because if not it is going to eat at you and eat at you and eat at you. Now I am not saying that I don't have my hard days but if you always are wondering what if and more what ifs and why why why its going to make you lose what Is TODAY. Now I love ya and I have been following your blog since your rupture and you have got me through alot of things with my daughter. But just believe for her and keep fighting for her but try not to label her. No one wants their child labeled because then they become that. You want to speak life into her and say what she is doing so well because it can handicap her even more so and she is not handicaped. What she is doing is catching up by her standared, not the age standered's not the Dr standards and not anyone else's childs standards she is doing it by Kaitlyn's standards she is going to get there. You never thought you would see her eat without vomiting and she is doing it!! You never thought she would ever smile and she is doing it and not only is she smiling but she lights up the room when she does it and it is the most beautiful and best darn sincere smile I have ever seen. She is a gift. Don't waste it and don't miss it show her how happy you are and that this is not going to get you guys down and hold you down this is making you stronger and even happier cause you guys are together. I wasn't planning on writting this much and I am sorry if anything came out wrong but I just wanted to let you know its going to be ok it really really will. Things will get better as each day comes along just like they have been getting better with each milestone she has met. You go ahead and vent because sometimes just writting your thoughts down or telling someone about how crappy your day was feels better just to get it off your chest but just try also not to hang up on every single thing she can not do today becasue there is tomorrow and if today isn't the day for the next step and goal she is going to reach then you know what tomorrow is always a new day and its always a day that can bring new things!!!! Kids are smart they can pick up on your energy, she will pick up on your stress and she can also pick up on your happiness and good energy. Its going to be OK

Melissa said...

I forgot to add when the people do ask how she is doing and wow she looks so good you could tell them till you are blue in your face exactly what it is to have a preemie and they will still never get it. You can not understand unless you ahve been there. I have ate many words so many times myself with just having children alone and before I had them I thought I had it all figured out and was very quick to judge other peoples kids and parenting skill when yet i had no idea what the heck I was saying just as well as I have actually had a few different friends that have had preemie children and I never fully understood the whole extent of it until I was actually placed in that situation myself. Its not that people just can't understand they just really can not comprahend because they haven't been there. It would be like me saying I know what it is like to have a relative with a certain disease when in fact I really don't have a relative with that certain disease or whatever have you, Nor would you understand what it is like to be in a situation that you have never been in. Its not that all people are mean they just don't get it and there is nothing you can do about it. Now I know some people have mentioned that if they don't like reading what they ahve read then move on but I know even though I may not always agree with you nor you always agree with me I still love watching Kaitlyn grow up and love hearing about how she is doing and I think I will always want to be a part of your blog just to see how everything is.Your kind of like family for us and has been an honor being able to see Kaitlyn from day 1 till now and even Quinn!!

Tiffany Evans said...

Thank you!!!! Our son is 13 months adjusted, 17 months corrected. Everyone, including our pediatrician says he's doing great. And he is. But, I too, notice things that aren't "right." and I feel like no one believes me! Thank you for sharing your feelings about this. Blessings.

Tiffany Evans said...

And, one more thing. When our son was in the NICU we had some "naughty commenters" on our blog, too. They're everywhere. You can write whatever you want on your blog. It's yours. And if you feel like complaning, do it. If you feel like being happy...say that. You are not responsible for how other people feel. If they don't like what you're saying, they shouldn't be reading along. As the mom of a micro-preemie, I find your honesty very helpful. All the honesty, the good days and the bad.

BusyLizzyMom said...

Wow what controversy. Liz I totally support you in your last entry. Having our children home, talking, walking and eating is an amazing feat for babies born so small. I cherish everything my daughter does and I have devoted everything to help her succeed in life. Despite all this hard work she still has obvious and non-obvious effects of her early arrival. It is hard for a preemie mom to overlook what is not obvious to a parent who does not have a child with special needs, we have Dr's, OT's, PT's, SLP's and every other health professional pick apart our child and label them, we have the words of Dr's and nurses in our head from when our children were fighting for our lives telling us of potential problems. My daughter has been labelled by so many professionals; behavoiral problems, ADD, Autism, Aspergers, SPD and this adds to her CP and her hearing impairment. It is hard to dismiss all these worries when you have concerns about your child. Elizabeth has many oddities that do not fit all the criteria for the above diagnosis's, she does have difficulty with emotional regulation, sensory issues, becomes overstimulated and has some social difficulties.
You are not sugar coating prematurity as it often is, you are telling the truth how difficult and how rewarding it can be to a PROUD mother to a extremely premature child. As advanced medicine has become in improving the outcome for extreme preemies, research is forgetting what needs to be done when we bring our babies home.
I think if readers looked more into Liz's post's they may realize that what Liz wants more than anything is for Kaitlyn to fit in and be accepted by her peers. She is not aiming for perfection she just wants a happy little girl who will fit in the 'mold' society has created.
Angi
(Elizabeth began to do the same behaviours Kaitlyn is doing when out in public around the same age. We have hired a private OT and began the wilbarger brushing technique and it helps emensely. If there was current research we would not have dealt with this problem for so long and have to pay out of pocket to get Elizabeth help.)

Jennifer said...

Gosh Liz! You don't need any of this grief! Nor do you need anyone to tell you you're a great mom - you know that and it shows!

Being sleep deprived and dealing with everything you have been is hard! There are days I snap at everyone because my youngest is having another 'can't be put down/teething/reflux' day - and speak negatively about her in addition. Does that make me a bad mom? No - and it doesn't do that for you either.

Like others have said... being on the preemie roller coaster is hard. I hope you get some rest from it real soon!


Jen

Anonymous said...

Hi Liz,

I can't recall how I found your blog. My husband is a fire fighter in WA state though, so we have that in common.

I am a mom to two children, not preemies in the least, so I have no idea the challenges that you face with that. I do understand what it's like to be married to a person who works 24 hour shifts with a new colicky baby in the house and I know that's not easy.

I love reading your blog and appreciate your candor. I guess my point is this. This is your blog. You can write whatever your little heart desires on here. If they don't like it, they should quit reading.

It's obvious from the comments that Anne and psychology lady are the minority. It is obvious that you have a lot of supporters out there, including me.

So, keep up the good work and hang in there. As far as Quinn, it will get better. He will sleep through the night....eventually.

Take Care!

Caitlyn said...

Liz,
I can't begin to understand what it might be like to have a baby be born so early. My daughter Caitlyn was born at 37 1/2 weeks. The pregnancy was mostly uneventful. But at 15 months she started losing skills, and was diagnosed with Rett Syndrome at 2 1/2. As a parent of a daughter with special needs, I want to thank you for the honesty your blog shows. Yes, I think we should speak positively of our children, but I think you do a great job of that! I appreciate your ability to not sugar coat things. I personaly think as bloggers we would be doing a dis-service to our readers if we sugar coated our feelings as parents. I can accept my daughter is different, but still have it rip me apart inside. Please continue to be honest with your feelings on your blog! The world of special needs is scarey, but technology gives us the chance to all come together in a support group of such, and be honest about the road we are on. Thank you.

-Rebecca (Caitlyn's mom)
caitlynsfamily.blogspot.com

Anonymous said...

Ok, let me say up front that this is going to be a little long winded. I am not the mother of a preemie, micro or otherwise. I have read this blog since the beginning, having lost a son to pprom at 19 weeks 4 ½ years ago. I read this blog to follow a girl who I think of as a miracle, and her heroic family (mother). I don’t see Liz as negative, but honest (and maybe a little exhausted, she does have an infant as well). I read the triumphs, and the disappointments. All mothers go through both, but I would imagine that having an extreme micro-preemie would make these feeling, well, more extreme. Liz, I have seen the way you tirelessly advocate for your daughter, and I see the whole “labeling” issue as proof of that. Nobody wants their child to need a label, but if there are problems, a label can be quite a relief, and useful as well. I was a child development major in college, and we studied syndromes, or labels, so we would know how to best help the children that fell into those categories. It is nice, as a professional, to have a sort of check list to follow when dealing with many of the common syndromes, such as Downs, or Autism Spectrum. Early intervention plans have been shown to be very effective in increasing the quality of life in both of these examples. And, with a name, these syndromes get funding and research. 20 years ago, when I was in college, we studied Downs Syndrome, knowing that early intervention helped, but the research on Autism was relatively new. 40 years ago, without proper labeling, most families were encouraged to institutionalize these children. Parents advocating, and wanting better, has improved the treatment, outcome, understanding, and expectations for all children presenting with these issues today. We need to start somewhere. So to Liz, and all the other micro preemie moms out there, GO, advocate, make professionals take notice, and make it better for your children, and all the micro preemies that will unfortunately come in the future. Accept your children for who they are, but strive to make them the most they can be. You are all an inspiration. As to the supposed negativity, this is a blog. I don’t read it to get a rose colored version of your life. I want to know the struggles you go through, and rejoice in the triumphs. Had I been lucky with my son, I might well have gone through many of the same. I hope I would have been as good at it as you are.

Beth, fellow prom angel mom

Kristin said...

Let me preface my comment by saying that I am not a mother of a preemie...actually, I don't have any kids yet, preemie or otherwise. I started following this blog after stumbling across one of Liz's videos on youtube.

"There is a reason that more isn't done to prevent premature birth. There is a reason that NICU's are in denial about the aftereffects of their services and, consequently, in no hurry to improve those services to improve outcomes. There is a reason my son can't get all the help he needs. It's because every time someone stands up and says there are impacts and asks other preemie parents to acknowledge and band together for the betterment of our own children and others...someone screams them down for being ungrateful, negative, out of their minds or what have you (see comments above this one for more examples). By revolting in the face of reality and refusing to acknowledge any perspective that isn't happiness and light about how perfect our preemies are, YOU (Anne, anon, Mir, psycho and everyone else who stuck their claws in Liz here, I mean YOU) are responsible for the poor outcomes of our preemies. Do you even realize how much damage YOU are doing to your children by refusing to acknowledge how hard they've had it and hiding those difficulties from public/doctors/other parents so that nothing will change?"

Pardon my uncouth response here, but Kassie, that is probably one of the stupidest things I've ever read. There is a reason more isn't being done to prevent premature birth? The other posters here are responsible for your son's poor outcomes? Nice that you accredit them with such awesome power over the universe, but come on. Let's face it...shit happens, and sometimes that shit is babies being born premature and having developmental problems. No one is to blame. And "There is a reason that NICU's are in denial about the aftereffects of their services and, consequently, in no hurry to improve those services to improve outcomes..." are you serious? If the aftereffects are so awful, perhaps you should have denied them to your son. Where would he be? Dead. My twin and I were born prematurely 28 years ago. We were 3lbs 12oz and 3lbs 14oz. I know, you all will scoff and say that's nothing compared to your micropreemies. But had we been born a decade earlier, what would our chances of surviving, let alone being normal babies? And your preemies? Doctors probably wouldn't have even bothered trying to save them. So I have a hard time believing that nothing is being done to improve the care and treatment of preemies. Do preemies still have problems? Yep. They are doctors and nurses, humans...not God. There is a limit to what they can do, what science and technology will let them do. But where would your child be if they didn't do it? Think about that before you go blaming everyone on this earth but yourself for your child's problems.

Robin M said...

Oh, Liz - I'm so sorry you are getting such negative comments. I read a few other blogs and I've never seen such toxic, hateful comments. Honestly, I don't understand how these people think they have the right to stand on a pedestal and judge you??? Anne and the other ridiculous people who left negative comments - if you don't like what you are reading than STOP reading. It's as easy as that. Instead, why don't you start your own blog, pour out your deepest feelings about the struggles you're facing in life and let us all stand in judgement of you. It's quite a courageous thing that Liz is doing, not to mention helpful to A LOT of people. We all have things in life that we are struggling with and none of us has the right to judge anyone else. I would challenge anyone to do a better job with the challenges that Liz has been dealt. I think she's doing an AMAZING job.

I have a child who was born very early and is almost the same age as Kaitlyn. I've learned so much from you, Liz. I can't tell you how many times I've forwarded your blog to other people - doctors, therapists, friends, etc. I thought your post about Extreme Preemie Syndrome was so interesting. My Jack has many of the same behaviours you described and I've been trying to figure out for some time what his "label" is. He's not autistic, but he's not typical either. I've been researching Sensory Processing Disorder lately, but that doesn't seem to fit either. And when you wrote about "Extreme Preemie Syndrome" I thought - that's it! I even talked with my pediatrician about it. I think it's important to figure out what our children are struggling with, because that's the first step in getting them the help they need.

Liz, I know there are so many people out there who have been helped by your blog, your support groups, and your advocacy on the part of micro preemies. Please don't let a few naysayers affect your efforts. These people have too much time on their hands! This blog is yours to do with and say what you want. Let them get their own blog if they want to have a voice! I think we should all remember the old adage - "If you don't have anything nice to say, then don't say anything at all".

I hope you and your family had a wonderful holiday and a very Happy New Year!

Caitlin Davis said...

Liz-

I have been following your blog for a few years and I am so impressed by your strength. I am a tired mother of two girls, and I can't imagine the amount of work it takes to advocate for your two children for everything from insurance issues to specialists to choosing the best schools.

I remind those who judge- parenting is hard... really hard! If I read a perky, happy blog, I would think Liz was lying about her experiences. I would rather read about her the successes and challenges of parenting Kaitlyn and Quinn

My only thought on the label is this. My second daughter was born with a clubfoot- a very easy to label disability. When she was first born, the nurse in the nursery said, "wow, her foot looks funny, she must have been cramped in there." Once she had a cast on (3 days old) a nurse at my pediatrician's office asked if she fell off a table and broke her leg (after I just told her she had a club foot.) Even now, people will ask what it wrong with her foot and when I say clubfoot, most people stare blankly.

I know this is not really parallel, but clubfoot is a really easy thing to understand and the label does not really help people.

Happy New Year, and keep up the great work!
Caitlin

thethomas said...

Liz,

I am sorry that people feel the need to be nasty and judgemental.

Stacy linked back to you today and i read the comments. I will learn not to be the first commenter. :) People who live in the "Pollyanna" world that everything is great and I just am thankful for my miracle are IMO not being truthful to themselves. IT IS HARD raising a special needs child. That does not mean that we who are open about the struggles do not rejoice in the triumphs of our kiddos. Quite the opposite. I just this week stopped everything to go give a high five and a hug to my almost 5 year old b/c for the first time spontaneously gave an appropriate answer to a peer. That being said IT HAS BEEN A HARD 5 YEARS. Josh looks so "normal" and has that "swiss cheese" development. He is very smart (benchmarking a grade ahead) but developmentally years behind (he just started the phase of asking why to everything.) So when family/friends/doctors say he is doing great, I just want them to come spend a weekend with us.

Having a Preemie Syndrome would be very helpful in so many ways.

So I guess what this long rambling comment is trying to say is Liz don't let it get to you. Continue to be yourself and to be honest on you blog. After all it is your blog. You are letting other preemie parents know that they are not alone in the world of worry, struggles, and real life with a preemie. Can people not understand that some days you will be sad about what is going on? I may not always post about it but there are days that I just sit and cry b/c who knows what the future will hold. One last comment about the person who compared her child being picked on for a tic. Does she sit at night and pray that her child just makes 1 friend. Well guess what I do. I pray that Josh just makes 1 friend.

Christy

Kristie said...

I know I'm late jumping in on this post, but all I can say is wow. I've been checking in here from time to time over the past year. My daughter was only 9 weeks early, and still has sensory issues and other differences that I worry about. She's done the rounds with all the specialists, had various therapies, etc. Newly three, she is doing better, but still isn't caught up. After her, I had a term boy (not without bedrest and plenty of drama), and all of the things that come easy to him make my heart ache a bit for her.

I haven't experienced 1/4 the problems you have, but I can still relate to how you feel. I whole heartedly agree that gaining recognition as a "syndrome" would help our kids on a number of levels.

I appreciate reading the real story hear, without all the sugar coating. Keep it up!

Anonymous said...

Twenty years ago, very low birthweight preemies were the "micropreemies," and even then, unless there were noticeable, diagnosed disabilities, they were treated as if they were full-term. One of mine had the "Swiss cheese" development, and there was no way the school system would skip one skill to progress to another if he couldn't master it, because that is the way "normal" children develop. Not so with preemies! So Liz, I fully understand your frustration with the system. There needs to be mass education that preemies (and sometimes even late-term preemies) are DIFFERENT! They aren't even close to being like a full-term baby who has delays and differences that are not secondary to prematurity. The typical extreme preemie has many affected developmental areas that impact him for life, and it is a never-ending fight to get professionals and family and friends to understand that. You just keep on bloggin'!

Ben & Kara said...

I am the mother of 23/0 weeker born in August 2006. I think you are absolutely correct, Liz. I have been saying for the longest time that there is a preemie syndrome that micros suffer from. And the fact that it is hard to define, diagnose, or treat is a lot of what is so damn frustrating about it. My son, Truman, has done remarkably well for a 23-weeker, but he still has very serious issues that will plague him for perhaps his whole life. And, it sucks -- for him and for us as his parents. It is because we love our children so much that their differences hurt.

And I just wanted to second the frustration over the "miracle" comment. Yes, my child is a miracle baby, but I didn't want a miracle, I just wanted a child.

--Kara

Anonymous said...

Hi Liz, I agree with you regarding a diagnostic category for preemies. I'm the PROUD father of a 1 lb. 3 oz. 23 weeker. He is: my hero, the most affectionate human, and a real bugger at times. He's def. ADHD and generalized anxiety disorder, but as for his other quirks...I'm a pediatric OT so I know there's many more issues than meets the eye. And we know that they don't "catch up" by 2 years of age or even by five. Peace Out !

Miracles said...

Hi Liz,

Don't be bothered by the negative comments left. YOU know what you live with and YOU know what you feel.

If other's don't like what you are writing they have the choice to move on to the "PERFECT" stories out there of prematurity.

Honestly, the best therapy is getting it out in anyway you can. It doesn't cost thousands to share your feelings here. This is what worked for me as a mom to former preemie twins.

Maybe the negative commenters of former preemies are the one's who need the expensive therapy to get through their lives.

Keep writing and never let these things get you down. You know the people who are behind you and who agree with you. And, I could not agree with you more.

Shannon

premature babies said...

I don't have any idea about this syndrome but after reading this post. It really makes it clear to me. I am just so glad that I found this post.

Anonymous said...

I am the proud mother of a 26 wk micro-preemie.So happy I found your blog, so much is hitting home! Love your honesty!

Shana said...

I am so thankful for coming across this blog post! I, too, am a mother of a 9 year old micro preemie( born 23 weeks @ 1lb 3oz.)
I was feeling overwhelmed and started to think how I should approach things with my daughter.. Striving to make her world as "normal" as possible is gradually becoming more difficult with her age, I fear she might be stuck, I fear I might not be "doing enough". I really think we are the pioneers of micro preemies, for me at least, it certainly feels that way.
I think our kids inherently know that life is going to be a struggle, but they are strong, or else they wouldn't be here. The ambition they display is humbling.
Keep up the good work!

Anonymous said...

WE HAVE A MICRO PREEMIE HE WAS BORN AT 23 WEEKS AND 602 GRAMS HE IS 3 YEARS OLD NOW AND ALL THE WONDERFUL DOCTORS AND THERAPIST ARE GREAT BUT I AM RELIVED TO HEAR OTHERS TALK ABOUT THE UNIQUE ISSUES WE HAVE WITH OUR SON. HE IS OUR MIRACLE BUT NOW I WANT TO HELP HIM GROW AND HAVE FRIENDSHIPS AND SUCH, THANK YOU FOR POSTING YOUR COMMENTS.

Anonymous said...

Ya know. I have read a number of these "helpful, informative" blogs over the last couple of months when dealing with my micro preemie and do you know what I get out of all of them.

"Don't make the same mistake I did"

We were well informed by several doctors what our baby's outcome might be, but if I had been still pregnant when I read these blogs, I'd be terrified to make the decision I did. Seriously, what exactly are you people trying to say here?

What do you honestly think a baby's outcome would be should they be given these blogs to read while in the process of preterm labor. Read them from that perspective and ask yourself honestly if you would have made the same choices.

I was given the choice of comfort care for my 24 weeker. Told his odds and you know what. God gave me this for a reason. It wasn't to torture me. Riddle me with guilt. My baby was born breathing, crying for a reason. This is what God gave us and he never gives us anything that we can't handle. But what I hear is that you people can't cope with what you got. Accepting her as she is, isn't neglect and will not prevent you from getting her the help she needs. This is a ridiculous statement. Accepting her means focusing on her strengths, when most of you focus on her weaknesses.

I have an autistic daughter who is 10 and is just learning how to read. Do I tell people, she just can't get reading. All the other kids her age do. It's so hard to deal with etc... No I don't. When people ask about her, I say she read 5 words today, or a full page by herself, or she's trying so hard to read these words. When she has fits, do I get all depressed thinking about what others think that she is just a brat, no I don't. I congratulate her every day that she doesn't have one. I don't focus on her bad days. If she can only finish half of a page for school work, do I tell people, oh she just can't keep up with the other kids. No I kiss her and hug her hard, because she finished her work half way. First time in over 3 yrs. Can I read the letters she writing, no but she's writing.

I understand that some children are more severe. I also understand that just because my baby has had a smooth NICU stay and the doctors say his outcome look is more then steller, doesn't mean he won't have problems. But try to understand the message you people are conveying here. The doctors should tell you about the possible disfunctions you are facing yes, of course. But none of that is written in stone for every baby. You people are making it sound like that. If you were paraded into hospital rooms to tell expectant moms your story just you are telling it here, I'm very positive the number of live mircos would drop drastically as moms make different decisions. You are making this self serving in relieving your own guilt for not being able to cope properly and you and the rest of these bloggers who are trying to "inform" people as to "what they are REALLY in for" Is nothing short of "avoid my mistake"

My rant is over. I'm sure you love your daughter. I would hope that you do. But I agree with an above poster. You and others need help before you do more harm then good.