At lunchtime, after expressing nearly 180mls of milk, care of a bunch of dropped feeds, I had to wake Evelyn up and encourage her to feed. She’d been asleep for nearly four hours at that point and it had been five since she fed. She wasn’t terribly impressed.
Of course, she wasn’t terribly UNimpressed either – this baby of mine doesn’t cry. She shouts at me if she’s a bit tired, but crying? Nope.
She only fed once overnight and stayed asleep for thirteen hours straight. Yesterday she was awake for around two and a half hours total. I’m hoping that her dropping feeds is an age appropriate thing, not a symptom of whatever it is she’s got going on. The other two kidlets fed every 2-3 hours, so I can’t remember what is normal baby behaviour and what isn’t.
It’s a bit ridiculous, when you take into account that she’s ten weeks old.
She had three big seizures while she was awake this morning, and then had a few clusters during her sleep. I’ve just put her back down now (she was awake for forty minutes this time) and she’s promptly started to seize again. I’m frustrated and tired and so very sick of seeing my baby twitch.
Of course, I’d be completely batshit insane without the Internet. Especially Michelle, on twitter, whose baby daughter is having identical symptoms and who understands exactly where I’m coming from. If you want to send her some support too, I think she’d appreciate it.
In the meantime, I will continue to wake Evelyn for feeds, and if all else fails, I can feed her while she sleeps.
I don’t know what to say, except I am here, listening. Hoping for a change or answers or something.
This is the perfect thing to say Zoey. xox
Thank you. xxx The listening helps. (Reading? Listening? Confuzzled.)
Want to tell you to hang in there – but that just sounds so inadequate. Let’s hope there is an answer soon and it brings peace for you and bubs.
Listening, praying, hoping for a turn for the better. Hugs xxxx
I didn’t think feeding while she sleeps is possible, but I suppose the sucking reflex is still there, it would be like sucking a dummy, she just has to swallow as well. As long as she keeps gaining weight, I wouldn’t worry about missing a night feed or two, it’s possible she would be sleeping through by ten weeks anyway.
Oh my heart goes put to you
Im now understanding that Tim tam reference on Facebook. Maybe Evelyn is making up for lost sleep? I really have no idea, but still, like others, here and listening
Sending love, so much love.
I’ve been reading your posts for weeks with a knot in my stomach and a lump in my throat, remembering just how it feels to watch my baby’s seizures, wait for answers and not know what the future will hold. We are lucky – we now have a happy, healthy 18 year old. You have every right to feel confused, angry and frustrated. Your life has been turned upside down and you’re on an emotional rollercoaster. You have been amazingly strong through this stressful time. I can only hope and wish that this nightmare time will end soon, that you will get some answers and that your beautiful baby Evelyn will stop seizing. I’m sending you love, hugs and strength.
I don’t know the right words either …
But Im Sitting beside you,holding your hand.
Much love xxxxxx
I started following your blog because I have a baby the same age. I am so sorry for what you are going through 🙁 but just to let you know Charlotte dropped her late night feed at exactly 10 weeks, so I think it is normal baby behaviour.
Keep strong, we are all rooting for you.
J
Oh, that’s good to know. Thank you!
Just… sending you love. Lots of love. xxx
I hope the Paed can give you a little bit more information and together you can develop some plan of action.
We are here for you and you can vent and rant as much as you want and/or need to!
Much love.
Still hoping for the answers you need and for wholeness of health for Evelyn. I cannot imagine the strain and worry but hoping you and your family find some reprieve and comfort too.
Still sending lots of love and light. Praying for answers for you. xo
(My middle child ate every 6-8 hours from the day he was born (and he was a breast fed baby)
I know its not much, but all I can give you and your beautiful little girl right now is a warm hug each and the assurance that I am here, listening to you vent your frustration.
sending hugs and prayers xo
Just a thought… in all the testing you’ve done have docs ruled out hyperthyroid (low thyroid function)? My babe slept almost 24×7 until we got a diagnosis and started Synthroid. Prob you have newborn screening in Australia as we do in Canada but just in case? And, of course, thyroid function can change in response to other issues. Wish I could bring all answers and not just this tiny idea….
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