you are right it isn't ok. I have no idea what you are going through emotionally dealing with the blow of news like this. I do understand the frustration at feeling like other people are flaunting their healthy children at you (we had 9 miscarriages before my only daughter was born healthy, now I feel like the flaunter and would gladly take a punch if it would lift your pain even for a split second) I can't help but think about your son being born for a reason, he has confounded doctor thus far, for a reason. I have nothing to say of value but I wanted to let you know I know intimately a woman living with the life sentence and contrary to the statistics she and her family are truly living their lives. You are a brave woman for being honest with your pain and sharing it.

Then I'll just say I'm listening. It's not near enough, but maybe it helps the tiniest bit to know it.

So frustrated that you can't get the straight goods on Liam... I don't know what else to say except that there are plenty of us out here on your side.

No, it's not okay. It's ridiculous and unfair and most definitely NOT okay.

But please don't lose hope. You are being told all the things I was told about Orion, that he was going to be a wheelchair-bound vegetable, that he would never walk or speak to us.

Our babies are stronger than we, especially those in the medical profession, give them credit for. Liam feels your hope. Don't give up on him.

My email address has been submitted with this comment - please, please get in contact if you need someone unattached to your family and the situation to talk to. I have been where you are and I know how much I would have appreciated that. I'm here if you want me.

Speechless. Bawling. God damn it. You deserve so much more than this.

No, it's not ok. Nobody has the straight answer as to what his life or yours will be like. It is unfair and horrifying to think of what all the possibilities could be.

oh Kate. i'm sorry.

and i'm listening, because it's all i have to offer. i wish it were more.

i grieve for you, and still hope for hope.

btw...i can still see the soul of your son in his pictures. no, things are not okay. i can't tell you if they'll ever be what you want for him, or even if they'll be something you & your family can handle...i've worked with a lot of people with profound brain damage, and there is much heartbreak there, i know. and i know the terror of looking down that road at forever, at the rest of your life.

but his little soul? i do think it's in there...and i'm not the religious sort. i don't know if you will ever get the gift of sitting down and talking with that soul, knowing Liam as you will Evan and Ben. that's so unfair, and so hard. but for today, he's here.

as are we all, so that you don't have to risk carrying the hope just yet. we've got that covered. we can handle the fury too, and the rage, and the hurt underneath it all.

again, i am so sorry.

Kate, There is nothing I can say that isn't a cliche. Cliches seem to be the only words left to me to try and encompass the depth of your hurt and the way my heart also aches with that pain - though I do not know you and though we are miles apart. As a mother, I don't think it's difficult for any one of us to feel physical pain as we try to understand what you're going through, be there for you, and imagine how we'd feel if we were the ones making hundreds of trips to the NICU, hearing those words from the doctors, having to type that search phrase into Google...feeling the weight of it all sinking onto our shoulders, into our heart and soul.I wish there was something I could say that might actually help. But, like the others, all I can do is listen and send my love.

Kate,I respect you immensely. Your naked honesty here is beyond courageous - and that is one of the redeeming beauties of life, that something that feels as necessary as breathing or as desperate as a drowning woman grasping at a floating log on the one hand can look like absolute bravery on the other.

Susan in Calgary

A complete stranger here who thinks that you are handling this with a depth of honesty, courage and grace that I find truly awe-inspiring. We are all listening.

I will not tell you that he will be fine. But review of the literature on Pubmed unearthed the following. Please note the the outcomes are not always dire. Has Liam had an EEG yet? 19/64 children in this study were either healthy or with only mild CP. (I, like many others, came here from Sweet Jupiter. As a new reader, I am amazed at your ability to express yourself through your writing. As a physician and mother, I am amazed at your strength and character. Although I generally do not pray, I am certainly "hoping" for you and your family)

"Early prediction of outcome with aEEG in preterm infants with large intraventricular hemorrhages.

Hellström-Westas L, Klette H, Thorngren-Jerneck K, Rosén I.

Department of Pediatrics, Lund University Hospital, Sweden. lena.westas@skane.se

BACKGROUND: The electrocortical background contains prognostic information in full-term asphyxiated newborn infants already during the first postnatal hours. In preterm infants with intra-ventricular hemorrhages (IVH) the background activity in EEG and amplitude-integrated EEG (aEEG) is depressed during the first days of life, and the extent of the depression correlates with the degree of IVH. However, it has not been previously evaluated whether very early aEEG can predict later outcome also in pre-term infants. OBJECTIVE: To investigate if early prediction of outcome is possible from aEEG in preterm infants with large IVH. METHODS: aEEG recordings from the first postnatal week were investigated in 64 preterm infants with IVH grade III - IV. For every 24-hour period the aEEG background pattern was classified, and the maximum and minimum numbers of bursts/h, respectively,were counted. Outcome was divided into three categories: died (n = 36), survived (n = 28) with "poor" outcome, i.e., severe cerebral palsy and not able to walk and/or mental retardation (n = 8), and survived with "fair" outcome, i.e., healthy or mild cerebral palsy (n = 19). One surviving child was lost in the follow-up. RESULTS: There were significant differences in maximum bursts/h (MaxB) at 0-24 hours (p = 0.033), 24-48 hours (p = 0.011), 48-72 hours (p=0.049) and 72-96 hours (p=0.032), respectively, between the infants who died and the surviving infants. At 24-48 hours the median (range) MaxB in the surviving infants with "fair" outcome was 156 (103-179) versus 102 (73-156) in the surviving infants with "poor" outcome (p = 0.002). With the assumption that MaxB < 130 was predictive of death or survival with "poor" outcome, 68 % and 78% of infants were correctly predicted at 0-24 hours and 24-48 hours, respectively. CONCLUSIONS: This study shows that outcome may be predicted with aEEG already during the first days of life in preterm infants with large IVH. The findings should be confirmed in prospective studies since they may have clinical implications if specific medical interventions become available.

I'm so, so sorry. Praying that little Liam can beat the odds.

I'm so sorry. I don't know what else to say. I'm thinking of you.

Just want you to know I think of you throughout the day, sending my thoughts and hopes to you. I wish I could do something... Bake, hug, be profound. All I have is that I stop in the middle of laundry or while driving through town to send you something in my thoughts and from my heart. I read your words and never know what to write to you, and then I realize that by not writing you don't know that there's one more person here smiling while looking at Liam's beautiful, long fingers.

I'm sending you my thoughts, my hopes which are my "prayers"...

I am furious with the doctors for giving you a false sense of hope, yet I'm also fiercely holding on to that hope. Liam's still proving them wrong, right? Are they taking back what they told you the other day about making his own path, rewiring his own brain?

I know I don't have to live it, so my stakes are infinitely lower than what yours and Justin's are, but I'm choosing to acknowledge hearing the brain damage all over fact, but carefully cradling and carrying with me the hope and bewilderment the doctor gave you the other day. Sometimes hope is the most tangible thing we have.

Dear Kate,Like your Dad, I am a retired teacher and a grandparent. And like most teachers, we get obsessed with the few who struggle or fail, overshadowing those many others we helped achieve success, because we want it all for every student.

Evan and Ben are your triumphs; your blessings. Stop. Take a deep breath. Be thankful for their thriving lives. You're right. What has happened to Liam is not ok, nor fair. Neither is life. I know people who can't have children at all. But Liam too is a blessing and a testiment to a tenacious inner life-force with an incredible will to survive. Your 'mama greed' and excellent medical care will give him the chance to be the best he can be. Don't give up hope. Liam may keep surprising everyone. He may continue self-healing miracles thanks to great genes and Mother Nature's magical and mysterious ways. Such a fighter he is! As usually happens with this day-to-day roller coaster ride you and Justin are riding, I keep look forward for more steps forward than back. Consider yourself hugged.

just remember to keep justin and evan close... they are the only things in this life that will pull you through this, who can make this easier--and let momma have a few smiles. just know that you aren't selfish-that you are a strong woman, mother, and wife who wasnt given happily ever after-but was told to make it her own happily ever after. you'll figure this all out, it will come...

Praying for a miracle for you and your son. You are right, it is not okay.

Oh Kate, your posts take my breath away. You have every reason to be angry and terrfied and frustrated. Doctors DO manage their patients. They don't tell the whole truth. They don't have all the answers. And sometimes they are shockingly surprised by how the patient turns out--my little sister had a very rare bone disease in her leg--the doctors said the only option was to amputate. My parents didn't buy it. She still has her leg--many many surgeries later. Each being has a mighty force of destiny towing them into this life like a current. Liam's is obviously a powerful one. He'll bring heartache, but also, I'm certain, amazing opportunties, stuff you can't imagine. And yet, I'm so praying for a miracle for you. I can't help it. You are so brave.

I agree so much with Bon. None of this is okay, none of it is fair, but his little soul? I believe his little soul is in there, aware and appreciative, alive, and whole. It's his body, his brain that is hurting. Your struggles will be his too, and someday, it will all make sense.

I was directed to your page from another reader and I am probably 3 or 4 degrees removed from the original reader... Kate, your words are reaching so many hearts and we are all pulling for you and Justin and Ben and Liam and Evan... As you said before, let your son chart his own course through this life. Let him write his own story, not some faceless internet source. It is frightening. Ben and Evan will write their own stories as well, and in the end, they will be a beautiful novel about a strong family built on love and guided by grace.

I know that I share in the sentiments of so many others. Your family has the cheers and best wishes of so many behind you. I hope that on some level you can feel every last bit of what we are sending your way.

I have no words other than the only ones I usually have left during trials of grief, and that is: I honor you. I honor you right now, in each horrible, painful moment. I honor that space in which you need to be in right now, or tonight, or tomorrow. By honoring, I simply hold you close to my beating heart, encase you in golden light, let you be the child - the crying, sad, unkempt, lonely, questioning, abandoned child - in a mama's arms. I hold your boys with honor too, for their struggles and strength.I have no wisdom or insight into the journey you are traveling, except that it is yours uniquely to travel. Your bits and bytes of wisdom peer through your words in every post.You awe me.Mamalove.XOXO

Kate, Justin and Evan

All we want to say is that you are all in our thoughts everyday. And you are right...this is not o.k.

Love,Brian, Selah, Amelie and Noah

I know everyone has already said this, but it's true. None of this is OK and none of it is fair. It's not fair that the doctors are giving you half truths, it's not fair that any of this happened in the first place.But I look at little Liam's pictures, and I read what your write about him and I can't give up hope that he will beat the odds. He may not ever be a "normal" boy, but there is no doubt that he will be the light of your lives.Sending you hugs and love from California.

This is so damn unfair, and the doctors' inconsistency is just infuriating. And I am so sorry that you are on this unpredictable rollercoaster of hope and bad news and odds-defying.

Interesting that the "anonymous internet voice" was a commenter on some different blog. not a doctor. not a psychologist or even a philosopher. just some hag named "Terri w/2." And plenty of people took Terri w/2 to task for her outburst: http://neonataldoc.blogspot.com/2007/01/disagreement.html

I am really not the one to speak of the value of any life. I have seen people with all the brains and potential in the world cut open their own wrists for reasons they alone seemed to understand. I have seen brilliant lives snuffed out by a stranger's careless decision to run a traffic light. I grew up with a special education teacher for a mother, and she taught me to fiercely believe that there is value in every life. And still I don't understand how that all fits together.

whatever any of feel, this is no place for any of us to suggest how you should feel. but as we all try to say what we can and overstep our bounds and occasionally say the wrong things, that should be a good reminder that sometimes the people commenting on blogs can be wonderful, but they can also be inexplicably maniacal windfuckers who should never be allowed a high-speed internet connection for all the havoc they cause.

Friend, Kate - You are strong. You absolutely must say what you are saying and dig deep through it. These feeling probably seem like quick-sand to you. At the end of this part of your journey, you will rise above it all. Liam is here for a reason, and it will become clear in time. But no, what has happened and is happening does not feel OK. I feel for you the same unfairness and questionning: why? All I know is when I saw that photograph of you and him and Ben, I smiled all afternoon. (hugs) to you today - please continue to write this all out -- we are here and listening --

(Thank you Dutch for bringing some perspective to that horrible generalization that is haunting Kate right now. I see the blog is offline now.)

Kate, I'm one of those bumbling folks who want to say something and I hope desperately that it's not the wrong thing. What I want to say is this: NO ONE KNOWS. The doctors don't know -- Liam has blown their expecatations out of the water at every turn.

It is scary not to know, as you noted in an earlier post about this limbo-land you inhabit right now. But Liam is here - no matter what happens in the future, here he is right now, and he needs you. I hope you can step back from what might be and not let that scare the hell out of you. Be here now, with Liam as he is now, and I hope that brings you some peace in this moment.

My mother asks that I let you know that she is praying for your family as a whole, and for Liam specifically and by name.

I'm not really sure what to say. I want to be mad at the doctors for the false hope...but is it really false hope? It's good to be informed with all the facts and figures, but nothing about Liam has been 'textbook.'

That should give you a little bit of light in all this darkness, right? There's always that chance.

You must be feeling a million different emotions, many all at once. Every single one of them is justified, so do not feel bad about them.

Thank you for taking us on this journey with you. I can only hope that knowing that you have people EVERYWHERE pulling for your family gives you some sort of peace.

No. Just.. NO.

I'm so sad and furious and scared for you.. and then I realize, as others have more eloquently said, that the Doctors, and internet sites can only generalize and give statistics, but they do not know Liam's future. And as I watch his video, his sweet face, and listen to him coo, I can't help but be so hopeful for him. He is a miracle boy, full of surprises.

My love to all of you.

I read your words every day but rarely comment because I simply don't know what to offer. Maybe it will help, if only just a little, to know that there is one more person out here who marvels at your strength and honesty, who never, ever judges your emotions, and who believes that Liam and Ben will fill the years with stinky sweat socks and hilarious antics, just as you hope for. It may not be how you pictured it, but the joy will come.

I've been sent here by SweetJuniper. I've been lurking for awhile, reading each and every one of your powerful, uplifting, heartbreaking journey that these two little boys are taking you on.And I just wanted to say that it's not OK. And it's OK for you to feel like it's not OK.

I wish that I had something awe-inspiring to say. A mere stranger that I am, offering peace and less bumpy roads for you all. I imagine those roads will not always be pretty. They may never seem like they were meant for any of you. You may question how you got onto these roads to begin with. But know that these roads are lined with many of us cheering on Liam and Ben, you, your husband and Evan. We've got our hands and hearts out. And hoping that the trees part to let in a little sunshine.

It's not okay and I'm so sorry Kate. I'm praying that Liam's going to be okay and is starting to welcome the world.

But I want to add a bit of maybe unwanted advice coming from my experience as a scientist. Please do not use google to find information! Much of it is wrong and misinterpreted. Instead, try scholar.google.com, which is better at only referencing peer-reviewed (and therefore more trustworthy) literature. Maybe ask a friend with a medical or biological background (my physics background isn't too useful here) to search the literature for you and collect the relevant studies. It might be that the picture has a lot more shades of grey than you can currently see.

Nothing I can say other than I am sorry for the pain that you are going through. It must be immeasurable.

Hell no it isn't ok! This is your child's LIFE and his comfort in it at stake.

You've had so many raw emotions since these precious babies were born and now the doc throws a worst case scenario your way. I'd be pissed too! At everyone and everything.

I admire you immensely. The daily strength you gather up to be there for Liam and Ben. Having to constantly wipe your mind slate clean to rewrite that day's baby update or changes.

I agree with everyone that Liam's soul is there. When he grabs your finger it is with intent and love for his mama.

Mothers know their babies better than anyone on earth and you will know Liam whether he is able to outwardly express himself or not.

The doc didn't change his mind about the amazing things Liam has done thus far, has he? So don't even begin to think Liam's done baffling the doctors.

Yes, your lives are changed forever but you are still a beautiful family of five.

I am so sad and sorry for you.

It's not okay. And it's not fair. But also? It's not set in stone yet. According to the doctor he's doing all sorts of things he "shouldn't" be doing, given his condition. You've got an amazing, strong little fighter in Liam, and he's doing things his way. There's no reason in the world he can't be the case that the doctors write up in awe, and give another mother hope one day when she searches the internet looking to find out about what may lie ahead for her baby.

Love and prayers to you and your babies!

It's not okay, it's terrible and unfair.

All I can do is be here and that's not much, is it?

it's not ok- it sucks and it is so effin unfair for liam and for your family and for all the families that have to experience the neverending emotional rollercoaster that life in the NICU brings. i hate it for you- i too wish you could just go home and have it all be allright and not have this be the new normal. i can't imagine your emotional and physical fatigue.

i pray for you all- prayers for peace in all of your souls, strength and courage to bear you up on this journey, and life-giving hope that today will be an up day, a day filled with better news and well-deserved optimism and progress.

I'm in the been there done that camp. My daughter had a Level III brain bleed at birth. I was told she was going to have severe CP, could be severely brain damaged, don't expect much, blah blah blah. She had 3 years of EXCELLENT early intervention where her brain obviously rewired itself. She started with a diagnosis of spastic quadraplegia (CP in all limbs). After 18 months she wasn't really developmentally delayed that much, after 3 years she was tossed from the special needs program in our city. She is now almost 15. Yes, she does have learning disabilities. She has CAPD and NVLD, but she is so freaking NORMAL that nobody really knows that about her. She's just great. And she had a terrible prognosis in the NICU as an IUGR baby and a 35 week preemie twin.

Doctors don't know what the future lies. Our doctor, the head of neurology at Childrens in Boston, the TOP children's hospital in the world, was dead wrong about my child. YOu really never know. So even though you've had terrible news, it doesn't mean a life sentence for Liam. Instead, hold tight to your dreams and see where he leads you and himself. It could really surprise you.

I don't know what to say, except that we are here to listen and offer whatever support we can, inadequate though it may be. I am thinking of you and praying for you and your whole family.

When a blog gets as many comments as yours does, it's difficult to add something insightful or valuable -- but it's impossible to leave here saying nothing. And so I wanted you to know I am thinking of your family, and in agreement with so many above -- particularly with Dutch. Some people should not be allowed an Internet connection.

I have been reading this blog for a while and I have looked back to all the things you have wtitten on Liam and Ben and I just want to say I am so sorry. It isnt ok and I can understand you mourning the loss of a normal life for your sweet baby. I spent 8 weeks in the NICU with my daughter she has a severe seizure disorder and the doctors all did the same thing. Give so much scary information you just dont know how to go on. I do not know exactly what you are going through but I do know the NICU life and how scary and awful it is. I keep your sweet babies in my prayers and you and the rest of your family as well. The doctors really dont know everything it is all just educated guesses but that little baby can surprise you and do wonderful things. I know my sweet baby has and she is not anywhere near "normal" I will keep you in my prayers and I will read and listen to your story whenever I get the chance.

It is not ok, and I am so sorry. Even though you don't know me, I am thinking of you and your family.

I want to blast this song as loud as I can and scream it for you:

http://www.youtube.com/watch?v=iv0WrpZWEfI

The internet is a double-edged sword. Whereas you have an outpouring of compassion on your Sweet/Salty blog comments, you also can discover all sorts of scary information. After we lost a baby during my 20th week of pregnancy and then got pregnant with a high-risk twin pregnancy where they shared a placenta, I banned myself from looking up information on the internet. It is just too vast and there are so many conflicting facts and opinions. For me, this was the best thing I could do. I went through our 11-weeks of hell in the NICU somewhat unaware of the "what-if's." When my daughter was diagnosed with a Grade III IVH (I erroneously wrote Grade IV in a previous post), we did somewhat pester the neonatologists about what the possible outcomes were, but they were noncommital, only telling us that there was a whole spectrum of how this could affect our baby. I eventually just blocked this stuff out the best I could and focused on whether Nicole would make it out alive. Having lost a little boy at 20 weeks gestation and then Nicole's twin at birth, I felt I couldn't bear losing another child. I honestly don't think I would have wanted to live if we had lost Nicole. Now she is a thriving 2-1/2 year old with no developmental delays. She is completely happy and healthy.

But this has to do with you. I am so sorry for what you're going through. I know that it probably feels like these stories that people send of positive outcomes are coercive ... like forcing you to be optimistic. But I think that everyone wants to help you to escape some of the fatalistic thinking that is so intrinsic to the tragic events on the past month. I for one still have so much hope for Liam. I remember being at one of my lowest points when Nicole was in the NICU and my brother said to me with complete faith and confidence, "She is going to be fine. She is going to be better than fine. She is going to be great." At that point, I decided to believe him. I have decided to believe this for Liam too.

"I'm furious. I want to throw things, punch someone."

Little wonder, Kate.

Aghhhhhhhh!

Crap! Dammit!! FUCK!!!!

It's awful!

I have nothing to offer but to let you know I am sending you my support.