Feeding our daughter was the biggest challenge  - looking back it was a huge challenge all through her life. Success was measured by the number of spoonfuls that were kept down! She was continually sick / choking and I was really aware of the aspiration pneumonia risk. I bacame exhausted and could no longer express my milk due to lack of time and energy....was Melissa going to starve to death? Our plunket nurse bought me samples of milk powder to try - we tried isomil and could not believe you drank all of the first bottle.  So that was the decider - for Melissa - Isomil was the one she tolerated the best - we used the ready to drink tin.  We also started with 'solid' food earlier than normal.  Using apple baby food (tinned) and again it seemed to work and gradually weight was being gained. 

We also used a beanbag as seating for Melissa especially after feeding to keep her upright - that worked well - only issue we needed to be aware of was her overheating while sitting in it - as maintaining her temperature was a challenge too.

I needed something to go by - we had been told - failure to thrive - so I needed a benchmark to measure Melissa's progress by.  Each day we made progress - facing each day - new challenges.  Our 2 main issues were fluid intake and sleep for her. We found we could not lie her down and even with the raised cot she could stop breathing very easily.  So we just had to manage holding her so she slept comfortably.  I used our couch -two couches together on the angle and we would take turns holding her and then when we fell asleep in the corner seat she was quite safe being held and we could relax and doze feeling her breathe.  For the first few months this was the most successful outcome.  Our neighbour was very kind and formed part of our sleep support in the early days.  We had a big scare in our first week home when I realised Melissa had stopped breathing in her pram right on tea time - however as soon as I picked her up she started again.  Very scary.

So back to benchmarks - we were given the form in the photo to record milestones - so we could measure progress even though we had nothing to measure from - didn't really matter as long as we could see and feel progress.  We felt very isolated.  Hence I recorded everything we did so I had benchmarks, success and failure all documented.

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.