[quote Somethingsnappy]@NannyAnnieKnitsKnickers, thank you for sharing your daughter and her baby's story. I'm glad to hear she is doing well now. Do you mind me asking why she was in NICU for 5 weeks? I've seen that 2 weeks is the average. Were there complications? Perhaps due to the baby being premature too?[/quote]
Before birth my daughter was told to expect a two week hospitalisation for her baby.
She was in hospital for a week before the birth because she was having contractions. Her waters 'Went' spectacularly and all who came to help were 'skating' in what went on the floor. Her labour was quite fast to say it was her first. Waters went at 2 o'clock then no pain at all until established labour at 6 o'clock (partner allowed in) born at 8.30.
Baby was 3lb 15oz and did not need any help with breathing - she was holding her own. She was taken to NICU after two hours with my daughter (dad had to go after an hour).
She had the operation successfully (the surgeon described it as basic plumbing) despite it being more complicated than first thought because of a major artery being tangled at the site of the 'stricture' but this whole area was bypassed. She again needed very little support post op - no oxygen required.
She was transferred from NICU to SCIBU quite quickly. All appeared well. She was making amazing progress.
She had surgery Saturday morning. Monday afternoon she had sepsis and was rushed back to NICU for 1 - 1 nursing. That was touch and go for 24hr. The following Saturday they introduced feeding directly into the stomach with a tube (my daughter was expressing) which everyone (family) thought was too soon. She had been on some sort of glucose drip? The following day my daughter arrived at her room and she wasn't there - she collapsed on the floor. Her baby had been moved in the night to another room because another baby needed 1 - 1. She wasn't told her baby had been moved. Baby was in a 2 - 1 room. During that day baby was being sick after every feed. My daughter was asked to leave that evening but was concerned that her baby was struggling. She asked if she could stay longer as baby was being sick and 'choking' frequently. She was told to go get some rest. At 8am she had a call to say baby had inhaled stomach contents into lungs and was back in 1 - 1 care. Again - touch and go for some 48 hrs. Baby then had this lung 'infection' which did not clear up and kept her in hospital until she was 35 days old. She went from no oxygen support required to having cpap for several weeks. My daughter felt that having 2 - 1 nursing there would've been a closer eye kept on her as she had told her nurse that baby was repeatedly 'choking'.
Baby was discharged on oxygen and was on this another 4 weeks fully and then another 4 weeks during the night. When she was discharged her arms and legs were the same diameter as her mums's little finger. Her aftercare really set her back considerably. My daughter is still having therapy (zoom) for PTSD after having watched her daughter choking and having a lumbar puncture amongst other procedures. At one point my daughter was shouted at - 'Are you going to help or do you want your daughter to choke?'
During her stay another baby was admitted to NICU with the same issue but this had not been picked up before birth. Born at 35 wks - very small. That baby had inhaled stomach contents and was in hospital for 12 wks.
My daughter has lost faith in medical staff.
Her partner also didn't get to 'meet' his daughter until discharge because of Covid - he saw her for an hour after her birth. Both had to shield throughout lockdown. Baby was born a couple of days into the first lockdown.
Baby has reflux which is now improving because she has started solids but the reflux was quite bad to begin with. We think that due to having to hold the baby upright after feeds for half an hour is the cause of her crying every time she was being 'settled' afterwards. My daughter is still very anxious about the possibility of choking.
She had her vaccinations without any problems. Baby is still unsettled through the night. Apart from feeding issues she is a strong and hilarious little character and is sitting unaided and trying to crawl. She has just gone into 3-6 month clothes. We don't know how much she weighs because her next weighing appointment for next week has just been cancelled. She was about 13.5 lb the last time she was weighed which was a while ago. Aftercare since discharge has been hit and miss due to Covid. Mainly miss.
My daughter has had two telephone conversations with the surgeon and one face to face visit. The surgeon retired last month, but baby should have one more check up and as she seems to be piling on the weight since weaning started she shouldn't need any further treatment. Her milk feeds didn't appear to stay down long (EBF) despite prescribed medication but since food got more solid she seems to be keeping it all in. My daughter wishes she had weaned much earlier but was told not to be ridiculous by her HV when she asked about weaning when baby was around 20wks old.
A happy ending but a long and rocky journey to get to here.
Hope your journey is smoother because you'll know what to watch out for.