17. Jun, 2013

The joy of life is to live - William Ward

We were told in no uncertain tones life would be short for our wee girl!

We were stunned, shocked, we felt frightened and alone. Trisomy 18 / Edwards Syndrome.  We had not heard of this condition! We were however shown a paragraph from a medical book - incompatible with life.

Instantly my thoughts were OK we will live life, we will love our wee girl, we will hold her and love her so she knows how special and loved she is.  We will celebrate every minute every hour and above all make memories.

Our first and formost challenge was we needed to be able to feed her to take her home to be among her family.  We had Melissa baptised and blessed in hospital and then the feeding challenge began.  Her mouth was small - weighing 5lb 3 1/2 ounces Melissa was like a baby doll she was unable to breastfeed so I expressed and fed her with a special bottle provided and when she was exhausted she was topped up by her nasal gastric tube.  This happened for the two weeks we were in hospital.  I was there for the 14 days due to having had a caesarian birth.  We went home using the bottle only.  Quickly we learnt the sucking was still tiring and I resorted to using a special bottle with a spoon given to me in the neo natal ward - I will take a photo of it and post it with my next post.