It was a major hurdle that she had lept over years earlier than the doctors had predicted. And our happiness was further elated by the doctors discharging us from Great Ormond Street a week before she turned one. Her first birthday and she no longer needed continuous oxygen, Such a massive achievement.
She continues to keep leaping over the hurdles at such a rapid speed it's hard to keep up with her (especially now she has her walking frame!)
So is her feisty toddlerisms(??) wants to walk, wants to be held, screams when she wants something....... the reason for my utter exhaustion?
nope it's the flipping bipap ventilator that little E has to go on every night.
I dread bedtime.
I loath that bipap machine.
I hate holding her down whilst big D puts the rugby style hat on her and pulls the tube over her little face and turns the noisy machine on that forces air into her lungs with a pressure that keeps them inflated to allow her little lungs a well deserved rest ( lets face it she basically runs a mini marathon every day and they only telltale sign is her sweaty head and fast heart rate).
I know she needs it.
I see how grey she gets if we don't put her on bipap for a couple of days. Sometimes we go to bed and neither of us can face the battle with her and the dreaded bipap machine that night. But by the middle of night when her heart rate is high and she's working too hard the guilt sets in and I'm sat wide awake watching the sats monitor.
It's a big responsibility knowing your daughter has little lungs that are working really hard and the only way to help them is to hold her down and put a big scuba diving style mask on her screaming face. when its finally in place and little E has lost the battle, I climb into bed (little E is in a cot next to us) and lay in the darkness and listen..... I guess the sound of bipap may be comparable to sleeping next to a snoring elephant (do elephants snore?) or a giant child drinking through a straw and sucking up the last bits from the bottom of the glass, or Darth Vader with a mouth full of popping candy?!!! ITS NOISY!!!
It's aged me!!
I look tired ( ha obviously) but I feel really tired, tired of a situation that I can't see an end too.
No contended baby book can resolve this babies sleeping problems ( if you do find a book let me know)
I wonder what super nanny would make of this situation eh? naughty corner and reward charts wont fix this!
Its not that little E doesn't want to sleep, she cant.
I am starting to meet lots of special needs mummies and they all look great, but sleep deprevation is always a common factor among us. So I know I'm not alone (doesn't make me feel a whole lot better)
writing about it doesn't fix it but i do feel better after a good moan (I'm very British!!) An occasional night carer would really help, but lets face it Little E will be at least 5 years old before social services organise that!!!
I found these photos on Little M's laptop, they have really cheered me up, Its not always so bad.......................
My 4 daughters
