Jenson is now 4 weeks old. At day 8 he was diagnosed with MCADD which is a rare metabolic disorder only affecting 1 in 10,000 babies and only 60 cases found every year which means he can't break down his fats into energy and can't go long periods of time without food! Unfortunately this means he will never be able to sleep through the night! It scares me so much! Tonight he's so sleepy I've literally had to wake him and force it down his neck and even then he didn't want it so only took 3 of the 5oz he normally has!
It's scary enough being a new parent without having to worry about a condition and if I leave him to sleep or leave him too long it can be life threatening! So to all of the posts I see where ur babies aren't sleeping through at a few weeks or whatever take a day in my shoes! If I leave my baby he could die! I wish I could get a full nights sleep! And even if I'm lucky enough for him to go 4 hourly in the night! I still am led in bed awake with a load of alarms set 'just incase' he doesn't wake up!
Sorry for the pointless thread but generally feeling like shit! I wish my baby was healthy like everyone else's! Why did this happen to me and my family sat in bed crying now worrying he's not had enough food
I am so sorry you are going through this. It makes my rants about sleep regression very shallow. I hope you have family and friends near by that can support you and help you out in the night sometimes. Virtual hugs x x
Wow. I just read about MCADD. I can't imagine. I read that kids can possibly sleep through the night when they are teens. Do you have a support system (for you) in place? Do you have people who can help with night feedings eventually? Your LO is still tiny, but I imagine that it will get quite exhausting. I understand not wanting anyone to help though (if you don't), because of the seriousness of the consequences of not feeding.
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