Failure to thrive at 9 months DD is 6 kilos

gemma477

I really need any kind of advice or help.  My DD is in 0% for weight 12% for height and 30% for head circumference.  She is not meeting her milestones.  She has just started to sit on her own and roll over.  She is generally a fussy baby that you can put down rarely for short periods of time.  She has random episodes of screaming inconsolibly (more like a pain scream).  My husband and I are at our wits end.  We do not have any family support. 

We were admitted to hospital for 3 weeks, and flown to a childrens hosptial.  DD had every test known to man.  She saw ped. neurologists, allergy specialist, metabolic specialist, genetic specialist, a cardiologist, a dietician, a speech pathologist and a feeding specialist.  Our daughter has several holes in her heart.  She may or may not need surgery which they like to do when kids are about 5.  The cardiologist assures us that this is not the cause of her FTT.

She only eats 2 tablespoons of food per meal.  She was breast fed.  Now she is on a high cal substite and still is not gaining weight.  I can't go back to work because there is not way that I can drop off my DD at daycare - she needs a lot of supervision during feeding to make sure she eats anything.  My husband refuses to stay home with her even though I am the bread winner (he really isnt an *** just cant cope).  I am afraid that we are about to loose everything, we are contemplating selling our home. 

This is our first child and we are absolutely devastated.  The doctors can't find anything wrong other than her heart defect - so they have labelled DD as having a behavioural problem and sent us home with little support or instruction (other then to have structured meal times which we already do).  

If anyone has had a similiar experience please let me know - we are absolutely desparate.