We fell down the rabbit hole and then carefully, slowly, clawed our way back out.
And then my baby got sick again, and landed back in hospital.
I am stuck on that point. My BABY is SICK and no one knows what is wrong with her. No one can fix her yet and everyone just wants to poke more needle holes into her tiny precious skin. This child of mine who lived under my heart is sick and I cannot magically fix it.
She’s having seizures – we know that much. Tiny seizures that come again and again and again and exhaust her body and brain. Tiny seizures that make her face and eyes twitch and the muscles in her back jump like she’s being nibbled by ants. And yet, no tests show anything, denying the truth of what we’re witnessing over and over.
I spent three days sleeping on a recliner next to her cot in Paediatrics and then we were sent home on weekend leave, with no solid plan in place. The tests are the be all and end all and with negative results, no one knows what is happening and why.
My mama instinct tells me that this is WRONG, that there is something WRONG and why is no one fixing my BABY?
I can’t breathe, because my baby is sick and no one is fixing her, because no one can work out what is happening.
She’s asleep now. She’s always asleep now, exhausted by her muscles twitching when they ought to not be. But she’s asleep now and I type this and watch her and wonder what is happening here. How do I distract myself from worrying about brain damage and developmental delays and the fact that my baby is sick?
There is no distracting from this.
Not now.
Not yet.
Oh Veronica, we are all waiting for answers and feel so much for you and your little girl. How heart breaking not having the answers, only worries. It can be so hard to distract yourself especially when it is waiting for important answers. My thoughts are with you and your family.
They have ruled out all feed related metabolic disorders? Rather than neurological it could as easily be chemical.
Not as yet, we’re still waiting for some tests to come back, as well as for Ev to have another attempt at a lumbar puncture.
They said that all metabolic seizures would show on an EEG (??), which is not what we’re seeing. Instead she continues to twitch and roll her eyes into the back of her head, and no one seems to know what is going on. The nurses witnessed them multiple times, but not the doctor.
I was wondering what happened with their second attempt at doing a LP. Did it happen? Did they get it right this time? I’m so worried, can’t imagine..
They postponed it until either Monday or Thursday, depending on what their thinking is. Probably thursday though.
Crying for you all. Just wish I could help, with all my heart.
I wish I had some comforting words x I the Drs find an say fix more than anything in the world .
Dear Veronica,
je suis si loin si loin de toi, mais mon esprit , mon coeur et avec toi. J’imagine ta tristesse et ton souci pour Evelyn et aussi pour le monde autour de toi.
Amitiés sincères . With all my heart !
The answers are coming. They have to be. But we’re with you in this
Oh Babycakes. shhh pumpkin pie shhh.. It will be okay, It will be okay
Oh Veronica. I seriously have no words. I want to comfort you… but I’m terrified along with you. Sending love to you all. xoxoxo
thinking of you, unfortunately is does not look like a straight forward condition, so it will be a process of elimination. This can be painful and frustrating, try not to dwell on the negative possibilities as they may not happen, try to stay positive, it will be hard at times and tax you to the limit. It is hard to see your baby proded and poked, then sleep after her”seizures” as she is so exhausted. I hope you get answers soon as a “label” is so much easier to deal with than the unknown.
OMG, just came over from twitter. I am thinking of you all. They’ll find the answer. You are strong. Holding my breath for you. A-M xx
xx I hope you get answers soon.
Thoughts are with you and sending big hugs. This is a difficult time. As the mother of a child who was/is also sick, my heart goes out to you. Please know that you are not alone.
No seizures were recorded on the EEG with my son until he had an an ambulatory eeg which is basically one that is attached for 72 hours. It was hard to get the neurologists to agree to this as up until that time said they were something else-never saying what the something else was. Because of the type of epilepsy he has they would not have come up on the EEG if they weren’t happening at the time, if that makes sense. You are in such a stressful situation Veronica. My hand still reaches out to you. With Love xxxx
This is too hard. Life should not be this hard.
I keep trying to come up with comments and I keep closing the window in frustration. Then I remember how much I appreciate comments too; so I want to contribute something back. Then I start to think about my own NICU experience and I just can’t figure out what to say.
I so utterly and completely want Evelyn to be ok. I know that doctors and medicine and tests are what she needs right now…but I just want a little baby to go home and grow up healthy and happy. The petulant 5-year-old in me wants it RIGHT NOW and doesn’t like this waiting thing one bit.
If there is anything that a friend from the opposite side of the world can do, please don’t hesitate to ask. Call me anytime, I’d answer a call from Tasmania at 3:00 am without hesitation.
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