[tri-med] Re: Having difficulty getting baby to accept CPAP

Tess was on CPAP from about six weeks old. The mask has to be firmly 
fitted otherwise, yes, it will shift. Could be that the pressure 
needs to be adjusted. Rest assured she WILL eventually adjust to it 
and it becomes part of the bedtime ritual.

Tess's CPAP was a bonnet-like affair, with two velcro fasteners 
either side of her head. It was quite fiddly at first to get used to. 
when she was tiny the bottom part of the very soft gel like mask 
would be on her top lip, and the top on her lower eyelids. When Tess 
got older she would resist the mask, but we used to wait till she had 
fallen asleep and then gently try and slip it on (not always 
successful). Tess progressed from CPAP to BIPAP, BIPAP releases on 
the out breath, so feels like normal breathing, other than, as her 
mother said, it feels like a hurricane blowing up your nose. (smile). 
Tess suffered from obstructive and central (from the brain) apneas, 
so it was vital that we persevered. Tess is now 12 years old, and 
does no longer wear CPAP or BIPAP. She now has flow past oxygen at 
night time. Tess went on to develop pulmonary hypertension, but I 
think without CPAP and BIPAP she would no longer be with us. It's 
just a matter of trial and error to get the pressure adjusted to 
something they will tolerate.

At 11:47 PM 13/06/2009, you wrote:
>Hi there moms,
>Does anyone have their babies on CPAP? Need advice on how to get my daughter
>Vera now 15 months to accept it. The minute we put the mask near her face,
>and she feels the air blowing at her, she fights it off, in her sleep! If
>anyone had and overcame this problem appreciate if you could share how you
>did it. Everytime she turns, the mask shifts. If we make it too tight, it
>would be uncomfortable. Also the mask, the Mini Me, is the smallest and yet
>it's too big for her, given how small Trisomy 18 babies faces are. The top
>nearly touches her eyes, the bottom touches her upper lip.
>
>http://mylittlevera.blogspot.com/search/label/equipment
>
>Her diagnosis is severe Obstructive Sleep Apnea. Thinking of giving up on
>CPAP but feeling guilty that if we don't get this up and running she'll
>develop Hypertension later.
>
>
>May
>Mom to Vera, full Trisomy 18, now 15 months.
>
>
>                   Building ___ooOOoo__ Rainbows
>                        www.trisomyonline.org
>                   Families Helping Families On-line
>
>
>
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>06/12/09 17:56:00



Jocelyn, wife to Frank, Mother to Ian, Gillian and Susan, Nanna to 
Carly 22 Mathew 20, Ashleigh 19, Alex 17, and Tess (Trisomy 18,) age 
12 yrs, & Benny the Maltese, plus one amazing DIL and two amusing 
SIL's of whom I'm very fond, and their extended family who are too 
many to list here.  

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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