It’s R U Okay day today and of course I’m not okay.
Because, this:
She’s absent for the first 40 seconds (notice the lack of blinking?) before the crazy eye movements start.
I’m not okay. My new normal involves holding my baby while she has seizures. It involves watching her for a lot of the day to make sure that she doesn’t choke when she vomits coming out of it (about 20% of the time). It is giving her supplements in the hope that it’s a deficiency causing her to seize (so far, no luck, but her doctor is organising for her to start a new supplement soon). It’s ringing the hospital to chase up what is happening with her test results and the specialists involved.
For the record, the Royal Children’s Hospital hasn’t gotten back to our team yet and I am resisting the urge to shout, because they’re so busy that one more patient is just a patient, but for me, she’s my BABY and I want answers yesterday.
Our new normal is going to be hospitals and specialists and watching the clock during a seizure to make sure that we don’t have to ring an ambulance.
It’s not knowing what is happening, because half of her tests haven’t come back yet.
Normal is knowing how to administer sucrose during blood draws and watching the bruises show on her skin later. It’s knowing that I won’t pass out during procedures, so they let me stay in the room to rub her head. Normal is so far from normal that I don’t even know what I’m doing, as I spend the days with Evelyn asleep on my chest because all she does is sleep and all she wants is holding.
Over two weeks into regular seizures, her body is getting tired. She’s still sleeping nearly constantly and her feeding is starting to suffer. We’re watching her closely to make sure she doesn’t go downhill fast, but it’s taking a toll on everyone.
I am not okay, because I don’t know that it’s ever okay to have to watch your baby have a seizure and to know that all you can do is hold her through it and clean her up when she gags at the end and loses half of her feed.
It’s going to be a few more weeks until the last of her tests start to come back and we’re in a holding pattern until we know what they show.
So am I okay?
No. No I am not.
And that is okay, because in this situation, it is perfectly fine to be not okay.
Are you okay?
Man, that was a tough video to watch, my heart really goes out to you and your beautiful bubby. I hope you find the cause and a successful treatment for Evelyn asap.
Hugs xxx
That is so sad to watch, I hope you get some active help soon xxx.
Yes I am ok…and on days when I feel less than ok I pop onto facebook and I see someone like you who (quite rightly) is completely not ok and suddenly my little complaints seem so little and petty that it reminds me of what is important in life.
I am so sad that you are going through all this.
Oh sweetheart, sending you all my love and strength. You are an amazing mama to those kids. It’s just as well they chose you, you know!
It’s not ok, none of this is ok, and of course you’re totally allowed to be not ok. Angry, upset, worried, emotional, and everything in between.
And remember it’s ok to have moments of being happy and laughing with your family during this. That’s normal, and it doesn’t mean you should feel guilty. Those moments of fun with Amy and Isaac will help make the rest of the time that bit more bearable.
Am I okay? Actually, other than being on my period… yes. Yes I actually am OK. And I can say that wholeheartedly for the first time, like, ever!
Lots of love to you, sweetheart. xxx
no i am not alright as i sit here with tears running down my cheeks watching one of my beautiful granddughters having a seizure.come on doctors we want answer we know it takes time but each time evelyn has a seizure it leaves her tired and exhausted we love you little one.
This is not OK at all. I think you are being amazingly patient. I would be very very shouty. I dont have baby experience, but Shouty does generally make me feel better and people at least have to listen. But maybe that’s not good advice.
On a more positive note, Veronica (and Nat!) she is just so beautiful and has put on so much weight!!! Those cheeks are gorgeous and chubby.
You must be going out of your mind. And that’s OK. Let us know if you need ANYTHING. Xxxx
Of course you’re not ok:( Rightly so, as you said. Poor little Evelyn, she’s so adorable, and I hope the doctors can help her very soon.
And yes, I’m fine, much more than OK. Which is good, because I have headspace to send all my best wishes your way where needed:)
I’m not ok for you. I can’t believe you have to watch this all day with no answers. That very short video is just heartbreaking & I’m not her mum & I only had to see it once.
I hope you get help really really soon V, for both your gorgeous baby girl & to start to heal yourself xxx
I don’t normally comment, but I just had to say I wish you and Evie all the best, and I admire your strength in dealing with this. You are an amazing person.
Oh, love, I have no words. It is so hard to watch her going through this. I wish for a magic wand to at least give you answers, if not make her all well again. She is such a gorgeous little soul, it is not right that she needs to suffer like this. Nor you.
Thinking of you. Constantly.
I’m crying after watching the video and reading your post. My heart goes out to you, your family and precious little Eve. I cannot even imagine what your life is like now. I hope that the Drs find a reason soon and can stop the seizures. Until then, all my positive thoughts are being sent your way x
I can’t even imagine. This is SO not okay. You can’t be okay. Oh sweetie. I have tears rolling down my cheeks just watching that little snippet of video.
DOCTORS!!! WE NEED TO KNOW!!!!!!!!!
xoxoxo
I have to say my heart breaks when I read your posts.
I can’t imagine how your heart is. I so hope this ends with some answers very soon
Always thinking of you
Oh precious baby girl. How awful for you and your family to have to endure this, probably more so the waiting and wondering – no wonder you’re “not OK”. I changed my blog look and (due to the fact that I am technologically challenged) lost all my links. I have been thinking about you and often wondered how you and your family were, not knowing that you’ve married and have a new little lady on your team. I was really pleased to find your link through Jenty’s blog. I want you to know that I AM thinking about you, and WILL keep you in prayers. Praying for answers and healing, with much love.
Hi Veronica. I have just realized that I have been reading for a few weeks without commenting. Woh that video is difficult to watch and therefore I can’t imagine how it is for you day by day. Even being able to put your thoughts down coherently is amazing! I just wanted to say that if there is anything I can do, please let me know. I dont know whether you have met the ward social workers but they can help with some things even if it is just to debrief. I know they can’t necessarily give you the answers you want though but sometimes they can facilitate things that may be helpful. Thinking of you x
I wish there was some way to take this away from you, i can’t imagine what it must be like to constantly be going through this. I wish there were answers, and I wish there was a way to change the way things are.
It’s okay to not be okay when the world is not right, I just wish that it was not the case.
Thinking of you and yours often xx
Omg, I can barely bring myself to watch that, the poor little love, and you, I don’t know how you do it. So heartbreaking to watch, hell to live through. Here’s hoping for some quick answers.
‘all’ my parents had to deal with when I was a baby was eye operations but somehow this gave me more compassion for them.
As usual, I have no idea what to say.
Take care the best you can.
No, not OK watching that and imagining how life is for you at the minute. Heartbreakingly tough. I hope the answers start coming really soon. Oh, she is beautiful. Much love xxxxx
I’ve been reading, but not clicking thru to comment. Today I wanted you to know that I am one of many many people I am sure who are thinking of you, and hoping for an answer for you and baby Evelyn really soon. Hugs
Watching that brings back very difficult memories. I am so sorry that the medical team isn’t getting back to you. This must be so very frustrating beyond that which words can describe. Your beautiful baby girl must be so exhausted which then obviously flows onto you all as you worry and care for her. I really can’t understand why they haven’t put her on some meds to act as a buffer and circuit breaker. They can still perform testing….The biggest hugest hugs and healing vibes. Holding you in my heart and mind. You know you can always contact me xxx
Oh that is so so heartbreaking. That poor little beautiful dumpling, and poor YOU. It’s truly fucked-up that you’re not getting answers. I am thinking of you – my “poor” story is NOTHING compared to what you’re going through. I hope you get answers soon. Kx
That was one of the hardest things I have had to watch in a long time, my dear friend, I am heartbroken you are going through this and your beautiful Evelyn. I am thinking of you so much xxx
“I” am okay, but I’m so very sorry that you and Evelyn are not.
I’d hoped that you would hear at least something back from the doctors by now.
Keeping my fingers crossed for simple solutions.
OMW that was hard to watch… cannot imagine how you’re feeling. I really can’t.
(((hugs))) and praying you get an answer soon
Oh. Watching that clip made me cry, because my toddler girl is doing this same thing- exactly, the same thing. Hers aren’t as severe and nowhere near as long. But I understand how not ok you are. Your baby, your little tiny, baby. It’s not supposed to be like this! I am praying for you all with all my heart, and I pray that both of our baby girls will be okay. xxx
I don’t expect you to have time to read these comments any time soon, but my heart and prayers go out to you, your baby girl and your family. I can’t imagine what you are going through and you are so so right to not be ok right now. Hugs to you all and prayer they get answers faster than later.
Oh darling. Hugs and love from across the world to you all. I’ve just got back from being away and catching up with all your news. Wish I was close enough to give you a proper hug XxXx
I am so sorry.
I can only tell you this, and hope it helps. My son had newborn seizures for the first two months of his life. All is well now.
He is 15 and I know how scared you are.
I was scared.
SO VERY SCARED I almost lost my mind.
I will send you all my love. Right now.
xo
A zillion love and hugs to you Veronica – I’ve followed your blog for a long time – as a lurker – but now I think it’s time for all lurkers to send you some love and hugs back through the internet… your children are adorable, your new daughter is absolutely beautiful – the end of the video shows how much she adores you too – hope you get some answers soon… xxx ((hugs))
So sorry to see you are going through this. She is just beautiful, best wishes to you all and that they find out the cause and get things under control. Xxxx
Oh Veronica, I am so sorry … knowing that you are feeling so helpless is awful to say the least. I cannot imagine. Hang in there, thinking of you. Love Jess xx
I have no words that could possible help you today.
All I can say is that I hope with all my heart that your medical team will find the answers as soon as humanly possible and that you will get your beautiful baby girl happy and healthy again.
I wish you the best of luck, and I’m desperately hoping that in 16 years you’ll be blogging about how your sweet 16 year old daughter has brought home her first boyfriend, or something innocuous like most teenagers do.
Fingers are crossed and our thoughts are with you.
Hi Veronica, last night was the first time I’ve read your blog – found it via Tiff’s blog. And I’ve been thinking of you and Evelyn all day. Just wanted to let you know there are a lot of people sending love and good vibes hoping everything will be OK. Please keep us updated when you can. x
Hugs sweetie. Lots of love from me (and my hubby too).
Cait
Have you considered that she may be asleep with her eyes open? Her eyes fluttering and the faces she pulls are a lot like when you are in REM sleep. It is actually very common for babies to sleep with their eyes open. Here is a link to a YouTube video of a baby that looks a lot like what Evelyn does in your video. There is a name for it, “Open-eyed sleeping — called nocturnal lagophthalmos” and it is completely harmless.
http://www.youtube.com/watch?v=wIGERjIqI9w
I hope the link works, otherwise on YouTube type in ‘Rocco sleeping with eyes open’.
Hopefully that is all that it is and she grows out of it. Another good link is http://www.babycenter.com/404_is-it-normal-for-my-baby-to-sleep-with-her-eyes-open_3652525.bc
Over 50 comments of parents whose kids have had the same sort of thing. Good luck with it!
Being asleep with her eyes open was one of the first things we hoped for. But this was quickly discounted by Evelyn’s medical team.
I remember sitting in the same situation you are in, watching my baby girl have seizures, vomit, and sleep. Being told there was nothing wrong with her and she would outgrow it. Needle sticks, x-rays, CT-Scans, more needle sticks … the cycle never seemed to end. One afternoon her daycare instructor found her laying face down in vomit, sound asleep … unresponsive. A trip to the ER, where we met with an ER physician that wasn’t one of the ‘normal’ ER docs for the day, landed her inpatient upstairs with a preliminary diagnosis of ‘Seizure Disorder’ … the key was to find out what was causing them and why. We visited a pediatric neurologist where she had a sleep deprived EEG followed by another CT-Scan. Fortunately we had a diagnosis and a reason. She had been diagnosed at 6months of age with mild cerebral palsy. What we weren’t told was that she could possibly face the seizure activity and all that goes along with it. The end results of all the testing she endured finally gave us answers we had wanted since her CP diagnosis … thorough review of her CT-Scan revealed that she had suffered a stroke, sometime within the first 6 weeks of conception. I remember thinking back to when I first realized I was pregnant then writing it off due to one instance of light spotting which I attributed to a botched period for the month. About 2 weeks after the spotting I had a confirmed pregnancy test and told the doctor about the spotting instance. He told me that was the point where the embryo attached itself to the uterus. I took that at medical value until I put all of the pieces together. The date of my last true menstrual cycle, the date of the spotting, and the date she was actually born. I know in my heart the day of the spotting was during my first 6 weeks of pregnancy and that is when she suffered the stroke that left her with CP and the seizure disorder.
Fortunately she was diagnosed and we were able to control her seizure activity with medication. When she reached maturity she was able to come off all her seizure medication and has been seizure free ever since. The hardest part of it all was watching and feeling helpless. Watching her seize then sleep so hard afterwards. Watching her little body become exhausted from the seizures … I hated every minute of it … I know what you are going through and I pray they give you some answers soon and find something that will put her at rest from the seizure activity and allow her to grow and thrive like she was meant to do.
Love and prayers to you all … she is absolutely precious!
Just wanted to add my love and good wishes V. Such an incredibly hard time 🙁 xox
Hugs, V, just big hugs. And if the fact that the baby jackets have STILL not made it in the mail to you is any indication, I think you know how I probably am. Will get them out ASAP. X
Hang onto those melting smiles. They’re the reality that will stay with little Evelyn when you’ve got past this, as you will. Uncertainty, waiting, worrying – wish it weren’t so. I hope you and your family are rested and have had little bits of OK. You deserve a peaceful interlude and I send you my mightiest wishes for long-term ease of mind xx
She is so beautiful…I’m sorry Veronica, this must be so hard on you all…
God I’d not be ok either. Scary stuff, you poor thing… Doesn’t help when its you having to chase Doctors either! Really do wish health and happiness descends on your home again soon x
Hoping for some positive news for you all soon. You and Nathan are two very strong people, just the right parents for Evelyn (and Amy and Isaac). Sending hugs and healing light your way. xxx
I am thinking of you and your family. Keep seeking the answers to your questions – you are a fantastic Mum, and I know your family is lucky to have you battling for them. xx
Oh hun 🙁
No, I’m not, but I’ve regathered my troops for another round
Thinking of you and holding my breath. Xx
I’m so sorry you’re going through this. It’s perfectly OK, to be not OK.
Thinking of you all, and may your news be good news today. x
Beautiful little girl, so difficult to watch without tears welling up. Hoping that answers come your way soon.
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