The New Normal
I remember it happening when my father had his unexpected heart attack last winter and wound up in the ICU for nearly a week. A day like any other, a day like today, in which my biggest concerns went quickly from “Man, I hope Alex goes to fucking sleep tonight” to “Man, I hope my dad makes it through the night.” The shift in thinking here is vast and it’s frighteningly quick.
Suddenly, even news that on a normal day would be some of the worst news you could hear “he had two clots, one of which is threatening to kill him, but we’ve removed one of them” sounds rather…good. It could always be worse, you tell yourself as you pace up and down those hospital corridors peeping into rooms whose occupants, well, HAD it worse than you do. But somewhere in those dark recesses of your brain, you remind yourself that even though for now, for RIGHT now, things are going as well as you can expect, they can sour without warning.
Yesterday, The Daver and I took our week old daughter to a pediatric neurosurgeon after we picked up her MRI films from the hospital. We sat there in the waiting room, me with a baby on the boob while he filled out the piles of paperwork and received the kind of pitying looks from the other patients as they walked by that made my heart swim with tears.
Yes, it reminded me, it is this bad.
After the neurosurgeon, ranked one of the best in the area, bounded into the room, filling it up with a sort of ebullient energy that only someone who abso-fucking-lutely loves his job has, he flicked through the massive stack of films to find one to show us what was wrong with our daughter. In cross-sectional picture form.
And for some reason, despite my incredible love of anatomy, my utter lack of horror for things like internal organs and dissections (I am, apparently, my father’s daughter), I could hardly handle looking at these films that showed my daughter’s head. In ways I never wanted to imagine it.
It’s funny–I know HOW these things work, I could probably give you a dissertation on reading an MRI of the brain without much prep–and yet seeing these parts of brain, parts of my DAUGHTER’S brain, made me cry and feel revolted. It felt unnatural to be looking at these films. In several, I could see that she was crying, or at least her mouth was open and neck arched backward and I ached. I physically ached for her.
Sure enough, right where some brilliant tech had put some of the measurements on the films, the brilliant and kind doctor pointed out what we can easily see from the outside: her cyst. In medical terms, as I alluded to by the title of my last post, it’s called a cephalocele, and it’s sort of like a hernia on the skull where the bones of the skull didn’t properly fuse together while in utero.
I’d known all about cephalocele’s before I’d birthed Amelia, before I married Daver, and I knew enough to know that the one that my daughter has been born with is really pretty minor. Typically, they cause all other sorts of neuro symptoms and retardation, but by the grace of God, Amelia seems to have none of those. We will, of course, know more as she ages and appropriately (or not) hits all of her milestones.
The upside to her cephaolcele is that it’s not an ENcephalocele, which means that the cyst is full of cerebrospinal fluid WITHOUT brain matter. The bad side is, of course, that she’s still going to need brain surgery in the following weeks. And no matter what way you try and spin this, it’s fucking scary.
The bounding doctor would like her to have this surgery in the next couple of weeks so she won’t remember it when she gets older, and while it makes sense to me, I’d still like to cocoon myself away from the thought of my daughter going under the knife for the next, oh, I don’t know, 60+ years? By which time I’ll be dead and I won’t have to sit in the PICU for several days while she wakes up, my breasts aching and full.
Unfortunately, the doctor whom I adored on sight, does not take my insurance and although I have a PPO, I’m not sure we can swing the thousands of extra dollars it’ll require to have him specifically do the surgery. Besides, he argued, this is a minor surgery. It’s not like it’s REAL brain surgery (his words). So, he referred us to a colleague of his whom we will see on Wednesday of next week and form a Plan Of Attack.
I only wish this Plan Of Attack included leaving my sweet baby girl’s head unscathed and eating a bunch of Funyons while sitting on my bum, but I’m pretty sure I’m not going to get out of this one.
And so I sit here, waiting again while freaking out quietly, and trying to remind myself that things could always be worse. Always.
It doesn’t help much, but it’s all I have to cling to right now. Well, that and my brand new bottle of Valium.
I would do anything to be there with you right now and hold your hand.
I’m so glad it’s not an encephalocele. That’s the first thing I thought of and I saw a LOT of those during our NICU time.
(((HUGS))) that’s all i got for ya, hon. No words of wisdom, nothing funny, just lots and lots of HUGS!
I, too, am relieved it’s not an encephalocele, but I know in light of all that’s still required, that’s kind of a pea-sized drop of comfort. I hope you love the new doctor as well as the last, and the prayers for one and all will continue!
This is all horribly inadequate, but BIG HUGS nonetheless!
Sending love and prayers.
Well, it’s still sucky and scary, but he seems to think it’s not too risky. Although, putting a stitch in my son’s skull sounds risky, so I’d be a lunatic. It’s too bad you can’t have him do the surgery. Fucking insurance companies are criminals!
Cling to that baby and that bottle of V, and schedule this ASAP for her sake and your sanity.
I’m so sorry to here everything you are going through with your new baby girl. I will continue to pray for you all.
Perhaps this is just me trying to be an optimist, but this is better news than it could have been, right?
I’m still thinking of you and your family.
hugs. i’m so sorry
The man sounds like a cuddly bear, and I’d love to hug him — just for getting you through this point. I wish he could do the surgery, but hey — he’s gotta have good friends, right?
I hate the feeling, when the information is flying so fast and is so fresh you don’t even have time to plateau into the new normal. Normal can last for 24 hours and then boom, you’re somewhere else entirely. The earth shifts under your feet, and you don’t even realize it.
I am in no way comparing seriousness of medical procedure here, but my husband had two major eye surgeries in his first year of life. They also told his mom to do it then before he could remember. Obviously, he remembers nothing, and is quite grateful given his visual fuck-up-ed-ness. His mother is, I’m sure, still recovering.
Okay, well, I’m taking this as good news. And in the meantime, I’ll continue to stroke your head (err…in my imagination of course) and stuff you nutritious yummy means (again, in my imagination).
Better to get it over with. I’m sorry she has to go through this, and I hope the Plan of Attack works well for you guys. Still praying for you all.
I cannot imagine the terror you feel..
Use that valium…and as frightening as brain surgery is for ANYONE, let alone a newborn….knowing that on the scale of bad to worse, she is more on the ‘bad’ side..that is a relief..
((hugs))
as i adequate as cyber hugs are, you deserve them…and as many as you can
I am still trying to take this in. Some part of my brain keeps thinking that you’ll post a “Whoops! Never mind! It’s a birthmark!!”
You should be posting about stitches in your hooha. You should be posting about how Amelia peed on The Daver.
Damn, girl. I am thinking of you and wishing there was more than I can do.
Oh, babe. I wish I could be there for you in person. I mean, I know it could be worse, but really, I can imagine from where you’re sitting, that’s pretty effing poor comfort right now.
Sending you all my love. Again. I’m here.
Becky, I wish this was all a big, fat medical whoopsie. I *am* glad that you have a good doctor with good colleagues, but that’s a small comfort at this stage, I’m guessing. I’m thinking of you and Amelia nonstop. Nonstop. (((((Becky)))))
I wish I had the $$ to give you for this surgeon. I hope you love the other surgeon, too.
I also had eye surgery as a baby. I was 18 months old. For your amusement, before and after. I don’t remember a thing. My mother is still traumatized.
xoxo!!
Thinking of you. I’m thinking it is a good thing that the surgeon seems quite blase about the op and that it is not the encephalocele. I can vouch for the fact that babies have no recollection of ops – my son had two pre 12 weeks and has no signs of knowing at all. Oh Becky I wish it wasn’t like this and that was something more useful I could do than just think of you all.
I’m here for you, if you need me. And my husband, wonderful Catholic that he is, is praying for you. Hard. xoxo
Oh Becky, I can’t imagine what this might be like for you and the Daver. When P was diagnosed with a heart murmer at a week old I couldn’t stop crying during her EKG and other procedures. I knew that the prognosis was fine, but I couldn’t stop obsessing over the fact that my tiny girl had to endure all of the tests and blood draws.
I’m glad to hear that the medical staff were agreeable and that Amelia is facing surgery that isn’t “real” brain surgery. A light blessing to be sure, but I would take solace in the fact that the surgeon referred to it as minor.
I’ll keep you all in my thoughts.
Continued thoughts and prayers.
Thinking of you.
I googled cephalocele when I read the last post. I’m glad you explained what is going on with her. Good luck and I continue to keep you in my thoughts and prayers.
This is all a lot to take in, it sounds like your doing as well an can be expected..The doctor seems really nice and it’s good that he sees an excellent prognosis. Insurance companies are the devil & Im sorry he can’t be your doctor..Keep the Valium close and Amelia closer..Much love from our blog to yours!!
Holding your hand and sending hugs your way. Along with more prayers, and lots of love. I know the waiting just SUCKS! I hope the new surgeon is as ebullient and comforting as the first one. You will get thru this. Vitamin V will help, but you’re strong and so is Amelia. Thinking of you all constantly, my friend.
I am sorry you have to deal with this Becky. It sounds scary and awful, no matter how minor the doctor calls it. I wish beautiful little Amelia the best of luck. She’s lucky to have such a fiercely protective Mommy!
I hope you feel confident with the new doctor and I agree with this doctor that it should be done as soon as possible, to get it over with, so you stop freaking out over it.
It will be OK. Doctors are scientists first. If the doctor thought there was anything unique or interesting about your daughter’s case, he’d want to operate himself, the fact that he’s passing you on to someone else is a good sign.
The real normal will begin when this is behind you.
Hugs.
I have been thinking of you guys so, so much. So much. I never know when there is a new normal until I realize an old normal is gone. beaming the love and shouting at the Universe.
xo
just hugs…and hope.
Oh God Becky. Hang in there. This WILL be ok.
[…] by KT on 02/07/2009 Please swing by my friend Becky’s blog. Her new born needs brain surgery. While the prognosis is good she is still struggling just the […]
Hang tight, sister.
I’m sorry you and your family have to go through this. It will be okay. It will. My thoughts and hopes are with all of you, and next time I see ya I owe you an extra big hug. (Dave too, don’t tell him though, I’ll just spring it on him in a surprise way. It’ll be fun.)
Still keeping you all in my thoughts & prayers. Sending love.
It is so scary. I am thinking of you constantly.
Best wishes.
I can’t imagine how you are feeling right now despite the good news about not being encephalocele. I wish you the very best.
Damn, girl. I know no one can say that they know how you feel, but I sort of come close. T had to have surgery at 7 weeks, and I remember the absolute anguish waiting for him to be okay, and hoping that we’d look back on it and think, “What were we worried about?” . It’s so, so hard, and I just want to say, hang in there, and I’m sending lots of huge hugs and prayers. Peace, girl.
I don’t know you (besides thru your blog & Twitter) and you don’t me. But as the mother of a baby who spent his first month of life in the NICU, my heart goes out to you. I know how scary this is and I am sending positive energy and well wishes for both your daughter’s surgery and for you.
There is no way to not worry, just know you have many, many people including me, sending you our love, prayers and positive thoughts. My prayers will be with you and your little one.
If it was me, I’d want to get it over with. But that’s easy for me to say because it isn’t me or my sweet, innocent newborn daughter. I feel confident that this will all work out perfectly in the end. [[[[hug]]]]
I hate this stuff. Every single new mother should be able to go home and enjoy sleepless nights and crankiness, both their’s and the baby’s – not this stuff.
You guys continue to be in my prayers. Em
I can only imagine how you feel.
you guys are in my prayers!
First off, this is all about me and how much I suck. Everything is better with chocolate and friends who care. I am shopping for your care package tomorrow so get ready for goodness. I will put your real friends to shame. virtual friend rule!!!! I love you from afar, your buddy and fan and prayer monkey, Stef.
What a fricking nightmare. There isn’t much to say that hasn’t already been said by other readers. Just know that we are all thinking of you, and sending you and your entire family good vibes.
Wish I could do more than that.
I remember when Gracie had her heart defect how scared I was for her every time we met with the pedi cardiologist, and I’m scared for you and for Amelia too. Thinking of and praying for you both each and every day. (((hugs)))
My bloglines didn’t pick up your post! I hate to hear any of this, surgery on your brand new beautiful baby. I am sorry, I can’t imagine how scary it all is for you. The good news is this, it is “minor” per chipper doctor and in a few weeks, it will all be complete. You will get through it, and we’ll hold your hand. I wish I could give you a big hug, I totally would.
Snort that Valium, girl. Do what you have to do to get through today. And then do it again tomorrow.
Much love.
I know my daughters birthmark is no where near the level that your daughters brain surgery is, but I remember her dermatologist coming in and telling me that in the world of hemangioma’s my daughters was the kind to get. I remember (in the hormonal state that I was) that I wanted to say, well yeah its fantastic, I bet everyone wishes their kid had a hemangioma in the middle of her fucking forehead…. yep you are right, this is the exact one to get! Of course also in my head I knew, it could have gotten much much larger, it could have come closer to her eye causing complications, she could have had multiple hemangiomas all over her body (and some get them INSIDE too)….so yeah the doc was right, I was really lucky….. but sadly its not the LUCKY you want to get. You want to get the kind of lucky that comes with having a baby with ZERO problems, the kind you may or may not have had previously and sort of took it for granted (at least I did).
Anyway this is my long-winded way of saying that I am thinking of you, praying for you and hoping this will be a distant bad memory soon.
FUUUUUUUUUUUUCK
Ah, Becky…I don’t even know what to say, or how to say it, except we’re here. We’re all here.
My thoughts and prayers are with you…
I’m still holding onto that bottle of vodka. We had a deal. When this is all over we will celebrate. HARD…
XOXO
You’re right. This is scary as shit. I’m so sorry you have to go through this. I’m so sorry your daughter has to go through this. My thoughts will be with you.
Oh, Aunt Becky, I’m so sorry that everything is so messed up. I am, though, really encouraged by the report you’ve given and I’ll be praying continuously for peace for you (although I don’t know who could find that in your situation, so feel free to be as not-peaceful as you need to be) and your husband, and for nothing but good health and happiness for your gorgeous daughter.
Major *HUGS* to you and your family. My thoughts are with you during this impossible time. You’re a fighter and I expect no less from your sweet daughter.
*slips a few Xanax into your pocket during the hug*
Becky, I am so sorry you’re going through this. Hopefully this “not real brain surgery” will go smoothly.
I’ll have a good thought for you and your baby.
is it weird that i got so freakishly happy when i read, in the last line, that you got yourself some valium? i know YOU don’t think so. but i am. because i wish i had the mental fortitude to get something like that for myself when i had to have ped confrences in the nicu. it all sucks and i’m really glad you got some.
i just can’t believe this is happening to you, even though i know things *happen* all the time. it just…it’s just so engrained (can you imagine? even in MY brain, which has had the complete and utter opposite experience with reproduction) that you get pregnant, have a baby, and lose sleep and such, but that’s it. i find myself saying to people, who i tell about paige and who have minor freak-outs and internal holy-shit-what-do-i-say sessions, “it happens ALL THE TIME.” i guess i mean it, even though what we go through individually is the worst shit EVER to have happened in the history of the world.
well, i’m done with run-ons, so i’ll just say, HOLY SHIT, mama…it HAS TO BE OK. it just has to. i know it will. but is sucks ass in hell.
I’m so sorry to hear about this. I’ll be thinking about you as you go through this difficult time!!
Thinking good thoughts for you and your babe.
Still praying for you and yours. I won’t tell you not to worry, as I don’t think that’s even possible. I’ll just add my hope that you formulate a good Plan Of Attack and that you adore this other doctor just as much as this one.
Oh Becky, you guys are in my thoughts. No matter how “routine” this may be for the docs/surgeons, it’s still fucking traumatic for you guys. Sending major hugs & thoughts.
You have no idea how many good thoughts are coming your way. Think of all of out here, holding your hand when the surgery is occurring. And eventually, yes, it will happen, normal will be back to normal and you will NEVER take that for granted.
I can’t imagine how scary this must be!!! I will be doing lots of extra praying!
I’m so glad that she won’t be having ‘real brain surgery’ but I’m still so sorry that she has to have actual surgery. I’ve been thinking of you and your sweet girl.
I am here thinking and praying (even my heathen self) for you and Amelia. I am holding your hand (and taking some shots)
xoxox
I will keep you all in my thoughts and prayers.
You all remain in my prayers.
Our thoughts are with you and your beautiful daughter.
Oh! OMG, you poor thing. I’m holding your hand and desperately wishing you didn’t have to go through this. I’m wishing the Plan of Attack is just how you outlined your wish. It just horrifies me to think of how you must feel inside, at a time when you should be allowed to rest. It’s like being told you must sprint at the end of running a marathon. I’m so sorry.
(And I too am grateful it’s not an encephalocele.)
Your friend
I’m glad the dr is so encouraging. OTOH, brain surgery is brain surgery, so I can’t blame you one bit for being a nervous wreck, even if the prognosis is good & you know she’s in good hands. Hang in there, we are all here for you. (((hugs)))
You said it all Becks. Things could always be worse. We’ll all be here keeping good thoughts for you and your precious baby girl.
I can’t imagine where your getting your strength from. It’s so overwhelming to me I can’t even imagining wrapping my mind around my newborn having to have brain surgery.
Keep a hold on to that strength and each other.
{{HUGS}}
God Bless honey. I have had you and baby girl in my prayers since before she was born. It goes without saying(but just so you know) that I will continue. (((HUGS)))
It IS fucking scary!!! Prayers go out to you and your beautiful family and of course Ms. Precious Amelia who WILL get through this with flying colors. Thinking of you daily. xo.
Wow. Reading this brings back our first visit to the pediatric cardiologist when my son was a week old. As I walked through the doors I couldn’t believe it was my baby that needed this doctor. I sat in the waiting room with a huge lump in my throat, fighting back tears – unsuccessfully – the entire time.
I really feel for you. I feel like I’m reading my blog when I read yours (only you’re a much better writer and the organ of focus was a heart, not brain).
It’s almost impossible to accept that your new baby will have to have serious surgery. Valium, tho, can’t hurt. I hope that you will find a way to afford the doctor with whom you are most comfortable.
There really are no words. I went through this all last month, andI still have no words. I’m just so sorry.
oy. no words. still praying…
I totally know that feeling. My child was 17 and the doc was expaining his POA on her new ACL. It felt so bad I actually passed out in the office. My teen daughter was so embarassed. It is a terrible feeling and I know exactly what you mean. Kids, they’re attached to your heart and that connection never ever goes away. It’s a lifetime connection, that they forget to put in the new parenting books.
Keep your head up and I’ll put in a special prayer for you!
Paula
Offering you a virtual Vodka right now? Glad to hear it is not “real” brain surgery but holy crap dude, I’m sure you’re scared brainless right now.
One day at a time sweetie, we’re all praying for your sweet child.
xxx
This isn’t exactly the news I was hoping for (“Oh, it’s nothing, it’ll go away on it’s own in 2-3 weeks.”)
But a needed surgical removal of non-brain matter, beats the hell out of brain matter and REAL brain surgery.
I am still thinking of you and Amelia.
Yes, it could be worse… But Damn that it is what it is. I am so sorry that you have to go through this. That you have to watch your daughter go through this.
You will get through it though… and things will get better.
But DAMN.
Still thinking of you guys and praying.
Valium is a truly wonderful drug. Take care of yourselves.
Here’s the plan, Beck. Brilliant fantastic surgeon takes care of what he considers a small issue in comparison to others. It’s just crazy how fast Amelia recovers, like it never happened. Furthermore, she has your personality and scares the crap out of you in 112 more creative ways over your lifetime, giving you more joy than you can hardly contain.
That’s my prayer & I’m sticking with it.
Oh Aunt Becky, even when upset, you still write beautifully. My heart goes out to you, and I will keep your family and Amelia in my prayers.
Best wishes. Its hard to see a loved one go through something like that.
I wish there was something I could do.
I’m thinking of you guys and sending you psychic Funyuns, Rock of Love episodes and hugs.
I’m so very sorry that I have been so out of the loop and haven’t been keeping up with Amelia’s progress.
While I am absolutely aching for you as one mother to another, I hope you are keeping your spirits up with the extremely tough medical analysis you provided, and the doctors words of “minor” brain surgery. I’m sitting here silently screaming at the words “minor” and “brain surgery” even being in the same sentence.
On another note, how would you feel about putting up a paypal type button for those of us that would like to contribute even a small amount to help you guys pay for whatever the insurance doesn’t cover? You have a lot more followers than I do, but I would be really happy to get the word out on my blog and ask my followers to also spread the word to their followers.
Think of Obama, from your own state, saying that we have to step up to the plate and help each other out. This is absolutely something I would rally behind. Helping a friend out. Please let me know what I can do, please…