The Journey

  • DAYS IN HOSPITAL (from birth): 209
  • DAYS IN NICU: 157 / DAYS IN CHILDREN’S HOSPITAL: 52
  • Cervical Teratoma removed: day 18
  • First cuddle (mum): day 24
  • First cuddle (dad): day 39
  • First cuddle (James): day 49
  • Gastrostomy placed: day 179
  • Gastrostomy removed: 2 years later (Woo-hoo!)

Mar 08: Born
Mar 23: Pneumothorax healed
MRI
LBO
Mar 26: Teratoma removed
Mar 27: Seizures
Mar 31: MRI & EEG re seizures
Apr 01: First cuddle with mum
Apr 15: C-PAP
Apr 16: First cuddle dad
Apr 17: First sound
Apr 26: James held Rose
May 02: High-flow
2kg
May 06: Trans-pyloric feeding
May 15: Immunisation (Infarix Hexa)
May 21: First breast suck
May 28: Second LBO – Proximal trachea – posterolateral (right) collapse (dynamic with respiration)
May 28: intubated (still made sound – unusual)
May 29: self-extubated
May 29: C-PAP
May 29: High-flow (4 litres)
May 30: High-flow down to 2 litres
May 31: Immunisation (Previnar)
May 31: Back to bolus feeds 20ml every hour (vomit x1)
Jun 01: high flow removed. In air!!
Jun 03: moved to Level 2
Jun 04: see-saw feeds. 21ml first hour, 19ml second hour, 22ml third hour, 18ml fourth hour until 20th hour when we will move to 40ml 2 hourly.
Jun 04: 3 breastfeeds
Jun 05: Newborn hearing test – no result will be redone when she’s ready to go home
Jun 06: trans-pyloric moved gastric
Jun 07: sleep study showed no apnoeas overnight – follow up required before she goes home
Moved to 3 hourly feeds
Jun 10: first bath and first untethered cuddle
Jun 14: first cold [?!!]
Jun 15: 100 days in NICU
Jun 17: +3kg !!!!!🎉🌈😊
Jun 19: Brady / resus. / back to Level 3 on C-PAP / fluids only
Jun 20: EBM (no more HMF)
Jun 20: high-flow (4)
Jun 27-28: 24 hour pH impedance study (high flow removed for study)
Jun 28: high flow reinstated (4)
Jul 1: 170ml EBM per kilo per day from 160ml – (170×3.28)/8
Jul 8: Sleep study – 37 apnoeas per one sample hour, as long as 16 secs. Home C-PAP required when sleeping
Jul 8: reached James’ birth weight
– sometime about now had a 24 hour period without vomits
Jul 18: Suspected cold – back to high-flow (6 litres) – antibiotics – fluids
Jul 19: Influenza A / given tami-flu
Jul 20: high flow removed
Jul 22: Stopped breastfeeding
Jul 29: high flow reinstated due to co2 in blood gas and desats, oxygen added for a day
Jul 29: moved to 7 feeds a day (4 hourly overnight) 89mls
Aug 3: Reached Daniel’s birth weight!!
~Aug 4: moved back to 3 hourly feeds
Aug 9: Met Poppy
Aug 12: moved to Sydney Children’s Hospital / met Gary Williams – her pediatrician
Aug 16: 2nd 24 hour period without vomits (actually 30)
Aug 19: Vaccination: Infarix Hexa
Aug 20: Blood test
Aug 22: nasal endoscopy re vocal cord function
Aug 27: Previnar (pains 4 hours after)
Sep 3: Gastrostomy / Fundoplication / LBO. Moved to CICU, intubated
Oct 1: Passed hearing test
Oct 3: Left hospital for home 🙂

2014
Aug 19: MRI to check for teratoma re growth and presence if thyroid tissue
Aug 22: Hearing test, inconclusive, retest Sep 2
Dec 16: First steps

2015
Mar 17: Sleep Study 1.9 apnoeas per sample hour.. recommended trying her off C-PAP. We tried for a couple of sleepless worryful nights but put her back on on the third as she had a clear runny nose and developed a cough. Her stridor was constant and very loud and we could hear her stop breathing. Her behaviour and sleep patterns though did not change during the 2 days off but this wasn’t enough time to show either way if she needs C-PAP or not. Both my and Andrew’s instinct is that she still needs it for now. We’ll try again in a week or so. Next sleep study showed about 8 apnoeas per sample hour. She went back on C-PAP, same pressure

Sep: Gastrosomy closure

2016

Jan 3: poo potty 😷😇💩
Mar: Eszter gave us a new mask to try with cpap. Pixie mask… huge improvement!!
Apr: potty trained
Apr: started weekly speech therapy with Di Lam and Sue Marden @ One-on-One
Apr 26: Sleep Study (5 days wash out prior, half night without cpap, half night titration)
Sleep Study results: 11 partial apnoeas on average per hour… slightly worse but still supported by minimum cpap pressure. Dr Teng suggested we consider removing tonsils and adenoids… Andrew & I did not find it difficult to decide against this suggestion. Status quo all good at moment.
Jun 2: First day of Pre-School!!!! Rose is loving it so far. She’s really enthusiastic and it’s a lovely pre-school. She’s a lucky girl.

Blood type: A+
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