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Cephalocele

February5

I want so very badly to come here and type out just how happy I am to have my daughter home. I want to tell you all about how her biggest brother is also her biggest fan and how her middle brother, although he won’t touch her, screams “BABY!” joyfully whenever he sees her. I wish I could wax poetically on how much easier having her come home has been than I’d previously worried.

But I can’t.

I’m stuck in this limbo, waiting for surgery on her brain and the subsequent recovery which I imagine will take place over many more hospital days. I’m afraid to get too excited about her knowing that I’m going to have to give her back to the hospital again, and knowing how well I won’t handle this. I cannot picture me NOT flipping out the entire time that she’s gone, pacing the corridors of the hospital with snot dripping down my face and tears blinding my eyes, because it’s what happened before.

If it’s something primal my reaction would make more sense, and maybe that’s what this is all about: maybe I can’t help my reaction and I can’t CALM DOWN like I should be able to while my baby goes in for surgery. I’m picturing a highly tranquillized day that day. Otherwise I physically do not know how I’m going to get through it. I don’t appear to be made of strong enough stock to handle this.

Our appointment to discuss the MRI results, which, of course, don’t show a miracle, is tomorrow with the doctor who doesn’t take our insurance, and from then on we should have some sort of plan. I imagine that although the plan isn’t going to help as much as hearing something like “OOPS! We totally made a mistake. Your daughter is fine!” knowing what the next steps are may help somewhat.

Or maybe they won’t. Maybe I won’t feel better until this is all over. And maybe I won’t be able to come here and share all of the good things in my life right now because I’m too afraid of losing it all.

Can you please say a prayer tomorrow for us?

posted under Goin' Off The Rails On A Crazy Train

86 Comments to

“Cephalocele”

On February 5th, 2009 at 12:45 pm Nity Says:
Praying!
On February 5th, 2009 at 12:48 pm Nissa Says:
Becky,
I am thinking of you and your family. I am so sorry that you have to go through this. I would definitely have some Xanax on hand. I know it is hard but you will get through this. If there is anything I can do please let me know.
On February 5th, 2009 at 12:55 pm Rachel Says:
You don’t even have to ask, I already say a prayer for you every day.
You will be surprised at the reserve of strength you have. I look back now and have no idea how I survived my son’s emergency surgery at 2 days old and the 2 week NICU stay afterwards.
But you will survive, because you’re a mom. And that’s what we do.
On February 5th, 2009 at 12:56 pm Anjali Says:
Absolutely!
On February 5th, 2009 at 1:00 pm Marie Says:
Lots of prayer from me!
On February 5th, 2009 at 1:00 pm kbrients Says:
Serious? Prayers do not need to be requested… I have been continuing to pray for your family.

….and although I would LOVE to hear bright wonderful happy news, this is your forum and if all that you can bear to share is the heartwrenching stuff… I will continue to read and pray for you….
On February 5th, 2009 at 1:02 pm mnsm31 Says:
yes, i will pray for you all until I know that sweet Amelia, is Safe, Happy, and Healthy.
On February 5th, 2009 at 1:14 pm Josh Says:
It’s all going to be good Becky. In 15 years you won’t even remember this day, you’ll just hope she ain’t out drinking…too much. 🙂

And you’ll have a very lovely martini in hand while thinking it.
On February 5th, 2009 at 1:15 pm michelle Says:
You don’t need to ask, I am sure I speak for all your followers and fans here when I say I am keeping your family in my thoughts and prayers.

Moms are amazing creatures in what we can survive. I don’t know how, but we just DO! You will get through it. I promise.
On February 5th, 2009 at 1:20 pm Andy Says:
Hang in there! And blather away.
On February 5th, 2009 at 1:21 pm Badass Geek Says:
Pray? Shit. I’ll sacrifice a fucking goat if it’d help.

But yes, I will pray for you.
On February 5th, 2009 at 1:24 pm Susan Says:
Be strong, you have so many people rooting and praying for you guys!

Big Hugs!
On February 5th, 2009 at 1:33 pm Ames Says:
I’m praying my heart out for all of you, Becky. ((((hugs))))
On February 5th, 2009 at 1:47 pm trish Says:
If any mother could calmly hand their kid over to a hospital, I’d worry about them. And you know what? There are times to be optimistic and perky, and times (days, weeks, months) when all you can do is wonder aloud, WTF?! and WHY ME.

And I know you’re strong enough. You may not feel like it, but one day you’ll look back and wonder how you did it. But you DID do it, and that was your strength.

We’ll be trading some long emails after this is over, my friend!
On February 5th, 2009 at 1:47 pm Kristine Says:
It’s okay to flip out. It’s scary. Anyone who tells you differently doesn’t have a real stake in it. You will make it through, you may have tears and snot all over you and whoever happens to be in a 15 foot radius, but that’s what you’re supposed to do. You’re supposed to be an advocate for Amelia, even when it sucks for you, you do what needs to be done for her. And you will, because you’re a mom.

Unfortunately, this may not be the hardest thing you will ever do for her. Even if it feels like it right now. But you can do it, we know you can and we are all here for you.

I will be praying for you and Amelia.
On February 5th, 2009 at 1:48 pm Coco Says:
I’ll be praying my heart out for Amelia and for you, Becks.

Hang in there. I know it’s hard and it’s terrifying, but you will get thru it. You’re strong. You are. And we are ALL here for you to lean on.
On February 5th, 2009 at 1:51 pm mandy Says:
I pray God comforts your precious mother’s heart. I pray for her quick recovery from the procedure and for any miracles possible!

I know this is tough, I am so sorry you have to go through it. We will hold your hands though. 🙂
On February 5th, 2009 at 1:55 pm Lola Says:
I’m with Badass! I’ll sacrafice a goat and a sheep — well, maybe a couple of mice — if it will help. I’ve already been saying a little prayer every day, so of course I’m on it.

You’re strong, and you’ll get through it no matter what. Who cares if snot is running all over the place, even if it’s on your blog. We don’t need the sunshine shoved up our asses if you’re just not feeling it.

After all of this is over and everyone is fine, you’ll be so sunny that we’ll need shades. And I’m so glad to hear about Ben and Alex loving her so much! Screaming “BABY”? Super cute!
On February 5th, 2009 at 2:00 pm Tracy Says:
I’ve flipped out over things that were about one trillionth as scary.
Will say a prayer for all of you. Take care.
On February 5th, 2009 at 2:08 pm JP Says:
Of course.
On February 5th, 2009 at 2:13 pm Betty M Says:
You will get through it – you will. I will be thinking of you. Flipped out or cool as a cucumber – do whatever you have to do – we are all with you.
On February 5th, 2009 at 2:13 pm Danielle Says:
I haven’t STOPPED praying! Good luck tomorrow, HUGS!!!
On February 5th, 2009 at 2:24 pm Ms. Moon Says:
Becky- I have never been in your exact shoes, but I have been in situations with my children that were very, very close. Life threatening. Etc. I remember thinking during one of those situations that I could not possibly live through what I was going to have to so obviously live through and that I wished I’d never had children at all because I could NOT bear this.
But you know what? I did and all is well. My children are well and whole. And your daughter will be fine. And you will be too. This is a very, very hard thing to get through but you will.
Amen.
On February 5th, 2009 at 2:41 pm arkmama Says:
Have been and will continue to keep you and your sweet girl in my thoughts! I hope that you can find some sort of calm in the storm, Becky. For now, just try to enjoy those lovely moments with all three of your sweeties!
On February 5th, 2009 at 2:42 pm swirl girl Says:
I am SURE it will be fine. But you have every right to be wrought with fear. Go ahead – let it out. Just think of the great story you can tell her when she’s bigger and embarrassed to hang out with you!
On February 5th, 2009 at 2:45 pm Ginger Magnolia Says:
A million and one prayers for you and your family, Becky. No matter how un-strong you feel, you ARE stronger than you think. We love you.
On February 5th, 2009 at 2:47 pm Kendra Says:
Oh, you’re in my thoughts all the time. And what you’re going through has got to be hitting you on the most primal level you have. Before I had kids, I knew what it was like to love someone: I was lucky to grow up in a family with parents and siblings who genuinely loved me and showed it. And I was lucky enough to meet and marry my dear husband. But I had never known what it was like to honestly, in my very core, believe that I would sacrifice myself in a heartbeat for another person. And now that we have those people in our lives, having them in pain or in danger and NOT being able to sacrifice or even do anything meaningful to make it better, it’s unimaginable terror.

I hope, with the part of me that hopes that my parents will someday get back together, that they do tell you it was all a mistake and your sweet girl is practically perfect in every way. More realistically, I hope that your plan is sensible and practical, that you get through it in one piece, and that you have her home with you, healthy and for good, soon.
On February 5th, 2009 at 2:55 pm Sus Says:
Honey, why wait until tomorrow? The praying starts right now!
On February 5th, 2009 at 2:56 pm Jen Says:
Just (((hugs)))
On February 5th, 2009 at 3:03 pm Petra a.k.a. The Wise (Young) Mommy Says:
You got it hun! You are totally at the top of my prayer list!
On February 5th, 2009 at 3:06 pm Mrs.Spit Says:
Praying. Always.
On February 5th, 2009 at 3:08 pm MrsJoyner Says:
Aunt Bee..The praying hasn’t ceased since before you delivered precious Amelia. And please, don’t hesistate to come here, to YOUR space and tell us how you are feeling and vent. Life isn’t always butterflies and rainbows and we’re here to help out, even if it is just a comment. Much love, hope, and of course, prayers to you & the whole family!!
On February 5th, 2009 at 3:16 pm Melanie Says:
I hope hearing the plan helps…. will be thinking and praying for you.
On February 5th, 2009 at 3:20 pm Tiffany aka yourgodlovesmetoo Says:
I don’t pray.
But for this. I will make an exception.
On February 5th, 2009 at 3:24 pm g Says:
You guys are in my thoughts and prayers. I puffy heart you.
On February 5th, 2009 at 3:26 pm magpie Says:
I’m thinking of you now, and will be tomorrow. Your strength will erupt up as needed if and when that surgery happens – you’ll be okay – really, you will.
On February 5th, 2009 at 3:31 pm tash Says:
I’ll take posts on anything, really. Believe me.

Somewhere buried on my blog are some posts about how basic and primal my reactions were to the shitstorm of news we received. I really think they’re based somewhere back when we were cave people and haven’t changed a whole lot. The only thing I really felt I could control and understand was just holding her. I couldn’t really “protect” her, or “save” her, but I could just be there, and hold her, and that my brain and body got.

Thinking of you all, so so much.
On February 5th, 2009 at 3:41 pm S to the hizzarah Says:
Saying a prayer today, tomorrow and always. I wish we could ALL show up and pace the hospital halls with you. Imagine that, a horde of (mostly) women walking up and down with you.
You know you don’t need to be happy here. You know that all we want is for you and your baby to be okay, nothing else matters. We are here.
On February 5th, 2009 at 3:42 pm heather Says:
Praying without ceasing, for you – my friend – and your beautiful, beautiful baby girl. Maybe this is a good place to come for you because we’ll all be here waiting to hold your hand and be with you. Thinking of your family, Becky.
On February 5th, 2009 at 3:42 pm Peggy Says:
Hang in there Becky…

It sucks (really hard) but you did it! You made it through the whole week!! Good luck tomorrow!
On February 5th, 2009 at 3:53 pm Dora Says:
Oh, Becky! I can only imagine how hard this is. Of course I will hold you all in my thoughts tomorrow. xoxo
On February 5th, 2009 at 3:55 pm mumma boo Says:
Prayers and hugs on the way, my friend. You’ll get thru it moment by moment because that’s what moms do. I hope hearing the plan will help alleviate the fear. I’m so glad the boys are loving their baby sister. Her future boyfriends will have to be vetted not only by you and the Daver, but by Ben and Alex. And the money thing? Set up a kissing booth at the hospital – I hear those Aunt Becky sloppy wet tongue kisses are worth millions. A few of those should be more than enough to pay the surgeon’s fee. Damn insurance company.

Stay strong – we’re right here with you whenever you need us.
On February 5th, 2009 at 3:55 pm Kristen Says:
Still here and still praying. I can’t imagine what you are going through, my heart just aches for you.
On February 5th, 2009 at 3:57 pm ewe_are_here Says:
My thoughts will be with you and Amelia.
On February 5th, 2009 at 3:59 pm Heather Says:
Sending prayers, today, tomorrow, and every day! I can’t imagine what this must be like for you. I hope you get the chance to relax soon.
On February 5th, 2009 at 4:17 pm birdpress Says:
I’m also praying for you. And don’t worry; nobody knows how to handle that stuff; from what I’ve heard you just do it. Lots of love and prayers for Amelia, and you, and the rest of your family!
On February 5th, 2009 at 4:29 pm foradifferentkindofgirl (fadkog) Says:
I’ve not yet stopped, and I won’t. All of you and the doctors who you’ll be working with are in my prayers. Please don’t be apologetic or concerned that you’re reacting in ways you shouldn’t be. You’re a human and you’re a mother. It just kind of all falls before us in these situations. And you? You know, at the core, you are strong enough, and so is that beautiful girl.
On February 5th, 2009 at 4:33 pm theramblinghousewife Says:
You’re definitely in my prayers. And you are definitely made of much stronger stock than you ever deemed possible. We’re moms–we get through. One breath at a time–one breath at a time . . . .
On February 5th, 2009 at 4:35 pm SciFi Dad Says:
Becky, it’s totally normal to not feel normal right now (if that makes any sense). Hopefully her surgery will be uneventful and her recovery quick.

(Are you able to stay with her in the hospital so you can continue breastfeeding her, or are you limited to visiting and therefore forced to formula feed her? This was an issue when my son had to be readmitted.)
On February 5th, 2009 at 4:57 pm Sarah Says:
Ongoing prayers, of course. Without question. With so much love. I had to hand my little man over to surgeons when he was 3 months old… I almost know what you’re going through, but it was not to a neurologist – just a urologist. I feel you beat me hands down in that regard.

Those damn -phaloceles!!! >:/
On February 5th, 2009 at 5:15 pm perchancetodream Says:
Sending prayers and good thoughts your way. Would include some lovely meds if I could!!!!!
On February 5th, 2009 at 5:33 pm kate Says:
yes. i will pray and pray.
On February 5th, 2009 at 6:15 pm Chibi Jeebs Says:
Truckloads of prayers and love coming your way. My fingers will be crossed! *hugs*
On February 5th, 2009 at 6:20 pm Jenn Says:
Thinking of you! xoxo
On February 5th, 2009 at 7:10 pm deb Says:
We’ll say as many prayers as it takes Becky. As many as it takes.
On February 5th, 2009 at 7:12 pm Donna Says:
Dear Aunt Becky we don’t expect you to be full of sunshine and happiness all the time so anytime you just want to vent and be real with your Internets have at it and I as always will be praying for you and Amelia. You have all the tears and snots you need whatever gets you through the moment and I’ll light a candle for sweet Amelia. Love hearing the brothers are loving them some baby sister. Take care and be well.
On February 5th, 2009 at 7:35 pm Dreamybee Says:
I’m pretty sure that freaking the f*ck out at the thought of your newborn’s impending brain surgery qualifies as primal. I’m pretty sure I would be on the edge of insane if it were me. Good luck tomorrow-I hope the doctor’s plan sets your mind at ease a little bit. You are in all of our thoughts and prayers.
On February 5th, 2009 at 7:45 pm Betts Says:
I’m glad tomorrow is almost here, because sitting around doing nothing has got to be the hardest thing to do.
On February 5th, 2009 at 8:10 pm Emily (Apron Strings) Says:
Ah Becky … Amelia and you and the whole family are in my thoughts. I’ll be saying a prayer for you …
On February 5th, 2009 at 10:00 pm Tiffany @ My Random Wisdom Says:
Hey I think what you are feeling is TOTALLY normal..
I cannot imagine the terror involved w/ brain surgery on an infant..
((hugs))
You all are in my thoughts and prayers
On February 5th, 2009 at 10:35 pm LilSass Says:
You know why I know you’re going to be ok? Because women are bestowed the ability to give birth and fight off grizzly bears to protect their children. I KNOW you’re going to get through this, snotty face and all. G’head and let it unravel in the hospital, there is no need to hold it together. You do the crying, we’ll do the praying.

Oh darling Becky, you and sweet Amelia are in my thoughts. From head to toe and inside and out, from morning til noon.
On February 5th, 2009 at 10:53 pm Cari Says:
We’re praying for great news. Good luck tomorrow!
On February 5th, 2009 at 11:40 pm Sara Says:
It’s this stuff that reminds us, we are a lot stronger than we ever imagine we can be. You have my prayers until forever!

And you flip the fuck out if you need to. Otherwise, you’ll explode later. Do what you need to to get through it!
On February 5th, 2009 at 11:47 pm Kyddryn Says:
Aww, sugar…breathe. Please? You’re in my thoughts, you and Amelia and the boys all. Fingers crossed, too.

Shade and Sweetwater,
K
On February 6th, 2009 at 5:33 am chancesmom Says:
Lots and lots of prayers for you and baby.

chancesmom
On February 6th, 2009 at 6:47 am Sandy Says:
Of course. You can count on a prayer from this house, for sure.
On February 6th, 2009 at 7:38 am heather Says:
Aww Becky. =(
On February 6th, 2009 at 7:56 am kim Says:
Praying like never before.
On February 6th, 2009 at 8:26 am Amanda Says:
Still praying here.
On February 6th, 2009 at 8:54 am charmedgirl Says:
you are totally NOT gonna calm down until it’s over. don’t even try. you also need to call your doc and get some valium, ASAP (see? then you don’t have to try to calm down, you can take pills!). 10mgs, if they give you the fivers, TAKE 2. seriously.

mine were in the NICU for 3 weeks. it was hell. and they didn’t have any surgeries for me to freak out over, either.

thinking of you guys a lot, would pray if i believed in that kinda thing.
holy shit lady, really. i just can’t believe it.
On February 6th, 2009 at 10:25 am Kate Says:
I’ll be saying lots of prayers.
On February 6th, 2009 at 10:29 am tobacco brunette Says:
This is my first time here. Your daughter is beautiful and I’m so sorry you’re experiencing this. I wrote a very similar post a few weeks (months?) ago, about my son, his congenital heart defect, an eventual open heart surgery, and my very real fear I “couldn’t do this.” It’s so hard and it’s such bullshit that any of us have to deal with things like this.

I’ll be praying for all of you. Please take care.
On February 6th, 2009 at 11:54 am Cassie Says:
I’ll definitely be saying prayers and sending good thoughts and wishes your way. She is just too precious.
On February 6th, 2009 at 12:12 pm Elaine at Lipstickdaily Says:
I’ve come back to your post a few times . . . there is nothing like what you are going through. My little Maggie was born with a severe illness – – all the doctors could say was (1) hopefully she will be born alive, (2) hopefully she will stay alive long enough to come out of the hospital, (3) hopefully she will stay alive for the first year so she could be big enough to have her surgery, and (4) hopefully she will survive the surgery. Thank God all those things happened and she is now an amazing little girl . . . but it takes amazing fortitude on YOUR part. Just don’t ever stop asking questions, learning, learning, learning – – you would be surprised how much you can teach the docs! And remember, God will not give you anything you can’t handle. Hang in there! (AND there’s something very special about children who have been through a lot as little ones!)
On February 6th, 2009 at 12:16 pm Stacey Says:
You have a fully justified reason to freak the hell out. Go for it. Sometimes a good freak out is what you need to then be able to cope.

We’re praying for you all.
On February 6th, 2009 at 2:24 pm Alex Says:
Oh, Becky, yes. And I do believe this is something primal. I’m sorry this “one thing” is taking the joy from the many otherwise joyful aspects of having Amelia home with her brothers.
On February 6th, 2009 at 3:44 pm Shanna Says:
Let me know if I need to come hold your hand. I have lots of vacation time to use so let me know.
On February 6th, 2009 at 7:29 pm baseballmom Says:
Praying, girl…(((hugs)))
On February 7th, 2009 at 1:38 am pam Says:
It’s gonna be okay, Beck! Prayers, prayers, heavy duty prayers dancing a congo line from your heart to His ears:)
On February 7th, 2009 at 4:35 am rockmama Says:
I have been thinking about you ever since I read your birth story! Many, many good thoughts coming your way from across the ocean.
On February 7th, 2009 at 9:56 am Leslee Says:
Prayers, thoughts and a billionty cats are being sent to you and your family. Well, the cats will just have to be imaginary, but you get the idea. I hope everything goes better than you can imagine. *ginormous intarweb hugs*

â™¥
On February 7th, 2009 at 10:17 am Stephanie Says:
Hugs! Prayers sent.
On February 7th, 2009 at 11:00 am quietgirl Says:
Their prayers will support you. Right now you just have to go through falling apart a little, but it will not destroy you. You will come back stronger very soon.
Our prayers will support you. You are not alone. We also know the place you are at. It turns out going crazy doesn’t kill you so long as you don’t slit your wrists. It just feels like it will. Plug into our support in your heart. Together we are strong 🙂
On February 7th, 2009 at 11:14 am andi Says:
Hey Becky.

I can’t imagine what you are going through right now. I’m so sorry for all the hurt. Please know that you and your sweet girl are so loved. And that so many people are thinking of you. I’m sorry that I’m not the praying type, but I will keep you in my thoughts and send many positive vibes your way. Be strong, my friend.
On February 7th, 2009 at 12:07 pm Lainey-Paney Says:
praying for you guys
On February 7th, 2009 at 12:54 pm Coco Says:
Just want you to know…I’m thinking of you.