TOF/OA

My second child was born with TOF/OA. These tweets are my experiences meeting the challenges that affect Mums and Dads of babies born unable to swallow.

[TOF/OA @GulpTOF]

#. N http://t.co/my3dL9TZwr

[TOF/OA @GulpTOF]

@plum_baby Here's my daughter who was born with aTOF(unable to swallow)having her 1st taste of solids with Plum
#TOF

[TOF/OA @GulpTOF]

Must stop thinking Soreen is a diet food because it's got raisins in it.
And using raisins to justify copious butter usage.
#Soreen

[TOF/OA @GulpTOF]

Watching H feed today wondering if I'll ever be able to feed her without holding my breath.Spluttering.Choking.Stopping breathing.Bit tough.

[TOF/OA @GulpTOF]

@samron99 Hiya! H had a dilatation at 2mths. She's 4mths now. How're you feeling about your little one's third dilatation? X

[TOF/OA @GulpTOF]

2 year old just called me a silly bugger. Hmmm.
#notonefornursery

[TOF/OA @GulpTOF]

FTT -> Failing To Thrive
Label often thrown at TOF bubbas.

[TOF/OA @GulpTOF]

Have struggled to get her to finish feeds too.Need to get her weighed to see how much of a problem this might be! Constantly fighting FTT

[TOF/OA @GulpTOF]

Mixed bag of a day.H is teething like a beast.Concerned that she'll struggle to drain the excess saliva.
#TOF
#TEF

[TOF/OA @GulpTOF]

Just recovering from scandalous dose of #bigrichtexas
My new Real Housewives...

[TOF/OA @GulpTOF]

Also the sleep apnea. Holding your own breath as you wait for your baby to restart their's.
#TOF
#TEF

[TOF/OA @GulpTOF]

Disturbed sleep is espesh tough with a #TOF as you know how much they need feed to gain vital weight.Can't risk always going full night...

[TOF/OA @GulpTOF]

Can't believe she's put on 1lb in a week!Shows what a week of not being poorly can do!
#fattyboomboom

[TOF/OA @GulpTOF]

Also yesterday had fundraising meeting at hospital to plan events to raise funds for #NICU Hope to split proceeds with @NEWSFORTOFS
#NandN

[TOF/OA @GulpTOF]

Also have chance for H to have test to look for genetic link/defect to show if #TOF is genetic.Unsure whether to have the test #genes

[TOF/OA @GulpTOF]

Saw the genetic consultant yesterday.Most fascinating hour. OH and i had blood tests to see who is carried for cystic fibrosis. #genes #cf

[TOF/OA @GulpTOF]

Had few good days. Baby H managed not to succumb to grotty cold. Feeding going well. Consultant on Thursday. Fingers crossed for weight gain

[TOF/OA @GulpTOF]

Check out Alphabet Print from clairevickers! http://t.co/YmqnuNqbEV via @vickersclaire
Raising money for #NNUH #NICU

[TOF/OA @GulpTOF]

Don't feel torn about returning to work and leaving her. Feel shredded. Ripped into tiny pieces. Guilt. Swamped by it.

[TOF/OA @GulpTOF]

Work meeting today negotiating return to work.I still feel like I'm just getting to know her.How can it be time to think about work already?