The last thing you want to be doing at 5am is watching your baby while she has a seizure. But there I was, lying down with my head close to hers* while I monitored her breathing and watched her eyes roll and her mouth twitch. After a few minutes, she came out of it and vomited all over her bed.
Not that this worries me, except as a seizure symptom – she sleeps on a spare pillowcase to make middle of the night messes easy to clean up. Five minutes later, she’d seized again, puked again and was tired and unhappy at the current events.
She rarely cries, this baby of mine. She gets sad when she’s tired, or uncomfortable, and she whimpers when she’s hungry, but she does not cry much. I am grateful for this, in the middle of the seizures and the vomiting and everything we’re dealing with, I am so grateful that she also doesn’t scream.
Amy was a screamy baby, crying pretty much non-stop for her first 6 months until she learned to crawl. Then she alternated crawling with trying to kill herself (we lived in a house with steep stairs at that stage – it was … interesting) and refusing to sleep. I can’t remember how I coped, but it wasn’t pretty.
So, Evelyn doesn’t cry. At 5am when she was unhappy, I gave her a dummy, rubbed her head, patted her stomach and she went back to sleep, before seizing again. She stayed asleep that time, but I wasn’t so lucky, as I wiped her pukey mouth and made sure that she was lying on her side to prevent her breathing anything in.
This is my new normal and forgive me if I hate it a little bit.
She laughed for the first time, did you know that? It was in the middle of a seizure though, so it doesn’t count. Just like the sobs while she’s seizing aren’t real sobs and nor are the smiles. They’re just responses to internal stimuli. It’s funny how this works.
We see her Paediatric team tomorrow at the hospital, to let them know that neither the pyridoxine (B6 supplement) nor the phenobarbital (anti-convulsant) have made any difference to our baby. We’ll point out the new symptoms we’ve noticed and hope that they either mean nothing, or that they are benign. We’ll discuss the fact that her test results aren’t back yet, and aren’t expected for another 10 days or so. I’ll mention that her vision is still very sporadic, and that some days she hardly sees at all, but other days she will fix and follow beautifully (today is a good vision day – yesterday was not).
And then we’ll hopefully get new meds to add to her current regime and more time at home while I try not to google “inborn errors of metabolism” and associated things.
You know, because Google is apparently bad for your health.
Dear Evelyn: I’m sorry for taking your photo mid yawn.
*Yes, we’re practically co-sleeping. Evelyn has a three sided cot that fits in next to our bed, so that we can co-sleep on separate matresses. This is the sole reason that the Paed was happy to send us home the second time, because she’s not sleeping alone, or far away from me.
Oh V. I have no words other than I wish it wasn’t so for you and your beautiful girl.
I’ve been reading V but just not commenting because honestly? I didn’t know what to say, didn’t have words that would offer either you comfort or hope. Then I realised, that that doesn’t matter. All that matters is that I took the time to read your words, that you and Evelyn have been in my thoughts for the past few weeks and that you know you have a whole wave of support behind you here, sending you a tsunami of love & positive vibes.
Evelyn is one lucky girl because she has you in her corner fighting for her. Couldn’t get a better Mum, I don’t think.
xx
I hate this.
Not as much as you, but I hate it nonetheless.
Sigh. I wish I had some sage words to offer…..but I don’t.
Sending love and light and hoping for some answers
Xxxxxxxxx
I hate that this is happening.
I hate that you had to put that clarification at the end because arseholes will be arseholes.
Love you, my friend.
x
Reading your updates and keeping all fingers and toes crossed. Thank you for smooshing those beautiful baby cheeks, I knew I felt happy for some reason that day.
My heart breaks for you V. You are an amazingly strong mumma to still be functioning through all this – worry levels in your head must be extraordinary!
Hopefully me feeling sick with anxiety for you means you feel a little less so knowing your burden is shared. Thinking of you and your gorgeous family often sweety xxx Hope your Paed team can find something that works for baby E very soon.
Huge hugs wonderful brave lady. You are doing such an awesome job, and she is just the cutest little girl 🙂
I’d hate it too and the waiting – goodness why can’t they move faster.
She is absolutely beautiful. I’m so sorry you are all going through this. I can only imagine the agony of waiting. My thoughts are with you and hoping for the answers you want and need x
I can only begin to imagine how awful this situation is for you, hang on in there, you’re doimg a great job and focus on that gorgeous picture of your Evelyn mid yawn. The only solace I can think of is that babies are amazingly resilient and do perform feats sometimes not scientifically ‘possible’ and certainly not understood. My 12 year old had a stroke when she was 15 months old and made a miraculous recovery. She is part of a research programme looking at how babies/childrens’ brains recover differently to adults and it’s fascinating and totally uplifting to witness how well the young body manages to recover in a way still not totally understood. Obviously, I don’t know about your baby’s particular difficulties but we do live in an age where the medical profession perform miracles every day – and who knows what will be possible in the future. I wish you all the very best.
You are doing a wonderful job. Your baby doesn’t know about normal or not, seizures or not, but she does know about longing for something she can’t name- you- and that you are THERE, you are there, you are there. This is everything. xo
You and your beautiful baby girl are in my thoughts and prayers. Hoping you get answers soon…xoxo
That is a beautiful photo of your lovely Evelyn. Is the vomiting post seizure a new thing I am so sorry I can’t recall if you have written on this aspect previously Veronica. The seizures seem very close together, looking out for status epilepticus is stressful, very stressful. Being in a constant hyper vigilant state extremely tiring for you Veronica. I sincerely hope that the meeting brings answers. Have the p’ team suggested a baby monitor so that you can be alerted of any breathing difficulty. I know she is sleeping on her side but this may help you to get more sleep at night by way of extra reassurance. I as others are here too, am thinking of you all very often and hope that the sending of support albeit via the internet helps a little. Veronica, you & beautiful Evelyn are very much in my thoughts. xxxx xoxo
I don’t blame you for hating it, no one would blame you. Sounds absolutely exhausting on top of just the sheer sadness and frustration at seeing your little darling baby going through it all. Gosh i hope you have a support team around you, helping out. Tending to a newborn is exhausting enough, let alone a newborn with seizures. I really hope you get some help/answers from the p-team tomorrow. Forgive my ignorance but why do the tests take so long – it feels like you’ve been waiting forever??
It’s taking so long because we’ve done all the simple quick tests and gotten normal answers. Now, they’re testing for inborn errors of metabolism and chromosomal errors. IEM’s are incredibly rare, but the first symptoms are usually seizures. This is why she had a lumbar puncture, so that they know they’ve tested for everything possible. The nature of the tests means that they take a while – four weeks minimum.
In the meantime, we pray that it’s something benign that will resolve with age and we attempt to get control of the seizures with medication.
I really hope that is the case. I have two kids, one of whom is 4 months old, and so I have been putting myself in your shoes this whole time – little babies are so vulnerable and even though we know that they’re able to bear more than adults in lots of ways it is still so hard to see them suffer. For some reason when you mentioned that she doesn’t scream/cry much, it made it all the more poignant – she is bearing her lot with such stoic forbearance! I just really empathize with how worrying and hard it must all be, and I sincerely hope it resolves with age and you are able to enjoy your beautiful girl without so much stress…
Thinking of you, V. Praying you get answers soon x
Ditto Rach aka Stinkb0mb. I read every post and think about you all often. I send you my love for support and strength.
Of course you’re forgiven for hating this!
I’d be very surprised if you weren’t hating it.
Can’t “they” put a rush on her test results? Can’t the doctors say “this is urgent we need to know something yesterday”? it’s so frustrating to keep waiting!
The on again-off again sight is intriguing, I wonder if there is pressure on the optic nerves?
I’m just thinking out loud here…
Love the yawn photo, she’s so pretty!
I hate this too. Here’s hoping that this is something that will be outgrown.
So impressed by your fortitude.
Sending constant love and hope. Xxxxxxxxxxxxxx
Four weeks to get results? I don’t get why that has to take so long, but meantime, you are all in my thoughts and prayers. Evelyn is so pretty, even mid-yawn. Very cute. 🙂
She is so absolutely beautiful. I wish that she weren’t having such a hard time. My sister has a seizure disorder and watching seizures is one of the hardest things to do. Watching your tiny child have seizures and not know how to help must be heartbreaking. I’m adding my love to the rest that is being sent your way.
Gosh, how could you NOT hate this? I am so sorry that none of the meds helped, and I just hope that a new one might help Evelyn as soon as possible.
The picture is beautiful, as is you daughter…
I’m surprised you get any sleep!!
She’s very cute, even mid yawn 😉
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