As told by his mum Andrea
It seems the minute you become parents of a prem baby your life is determined by numbers. Sam was born at 25+3 weeks gestation, weighing 890gm and 33cm long. It had been a stressful pregnancy right from the beginning, and many times we thought I might be miscarrying, so in theory we should have been prepared for an early delivery. We certainly did not think our wee boy would arrive over 14 weeks early!
I had been in delivery for over 24 hours trying to prevent labour progressing. This did seem to be working and at 4.00pm it looked like I could be transferred to the ward for the night. Instead, things went the other way and by 6.00pm it was determined that I needed a c-section immediately. An NICU (Neonatal Intensive Care Unit) Registrar had been in to see us earlier in the day and said if our baby was born at 25 weeks he had an 80% chance of survival, I actually took comfort in those odds. However, I wasn’t prepared for the intensity of doctors, nurses (and I can’t recall who else) rushing into the room, all prepping me for surgery while trying to calmly tell me what was happening. 30 minutes later our wee boy was swiftly out. We got a very quick peak of him on the way past before he was whisked off to NICU.
I spent 5 nights in hospital, recovering from my own surgery, trying to get my head around the fact we now have a very wee baby boy. I was missing my other son who was only 15 months old and becoming exposed to everything that surrounds having a micro prem baby. It seemed we were off to a good start, while Sam was ventilated initially he had successfully been extubated and was doing well on c-pap.
On my first night home we were rung at 3am to say Sam’s bowels had perforated. They had performed emergency surgery in his incubator and while it was traumatic he was now stable back on the ventilator. Our initial reaction was to return to hospital immediately but we were advised there was little point and to come in tomorrow morning, and to try get some sleep.
The next few weeks were very long. It was hoped Sam would recover in about 10 days but it took him 3 attempts at being extubated, and was 21 days before he came off the ventilator. During this time, we were told he was very sick and fragile, he was on so many different medications including morphine, that he basically slept the whole time.
It was 27 days before I had my first cuddle with Sam, 33 days before he was up to having full feeds of milk (a mere 16 ml) and 51 days before he had his first bath.
Over the next three months I lived the routine of dropping our other son, James, at day care, making it to hospital in time for 9am cares, expressing, more cares, more expressing, pick up James, return home, more expressing. In the early weeks I also returned to work in the afternoons and John was working full time. Every morning I’d send him a photo of Sam’s monitors so he could see the numbers for himself.
Slowly, very slowly it seemed, Sam made progress. The c-pap levels came down and then he was on Opti-flow. Then those levels incrementally decreased until he was on Low-flow!!
Unbelievably on day 117 Sam came off Low-flow and was breathing for himself and after 126 days in the unit, we took Sam home with just his nasal gastric tube (NGT) still in.
Over those 126 days Sam had:
· 22 diagnoses recorded on his charts
· over 150 blood tests
· received 8 blood transfusions
· 2 surgeries
· received 28 different medications
· was “bagged” so many times we lost count and
· spent 22 days on a ventilator, 44 days on c-pap, 34 days on Hi-Flow and 17 days on Lo-Flow
It was fantastic to have Sam home and most importantly the whole family together for the first time. The first night at home having both boys sleeping under the same roof was incredibly surreal.
We adjusted to our new routines. Working out the best times to tube Sam his milk, knowing to leave it at least 30 minutes before going in the car otherwise getting it all back up again. We had fantastic support from the homecare nursing team, a feeding therapist, developmental therapist and dietician. It wasn’t easy though and the first year home with Sam was incredibly tough. We called an ambulance 5 times and were admitted back into hospital 4 times (the first only a month after we’d got home). Sam went back onto Low-Flow and we were using home oxygen until he was over a year old. Feeding Sam was particularly difficult and he was 15 months old when we managed to wean him off the NGT.
Now though he is a happy and very cheeky toddler, continually causing us grief but for usual wee boy antics. We still worry about his weight gain, and are monitoring his development, but there is no reason to believe he won’t grow up to have no lasting effects of his very early start to life.
Throughout this whole journey we have been humbled and incredibly grateful for all the support we received. While in NICU, both the ward and The Neonatal Trust staff became family, the team of health professionals that visited us at home and provided advice and guidance were my life savers. Even now our amazing specialist and other doctors we visit are so genuine in their care for Sam.
To any new parents of a premmie, I can’t stress enough that some days you will wonder if it will ever get easier and you will sometimes feel utterly powerless, but it WILL get better and your lives WILL return to “normal”. Make sure you take time for yourselves when you can and always accept help when offered. It can be a long journey but it can be very rewarding and will instil in you a sense of resilience you never thought possible.
*** Thanks for sharing your story Andrea***
We get a lot of positive feedback from families in a neonatal unit who read these stories and feel strength, hope and positivity knowing that they are not alone going through these experiences and feeling certain emotions.
If you would like to discuss sharing the story of your neonatal journey, we’d love to hear from you. Please email firstname.lastname@example.org
From the story above:‘
- Skin to skin ‘Kangaroo Cuddles‘ are great for both your baby and also the parents. Learn more about this great practice here: Kangaroo Cuddles overview
- Having a blood transfusion is not uncommon for neonatal babies. Read about our support of NZ Bloods ‘Missing Type’ campaign, and blood in a neonatal context here
Interested in how The Neonatal Trust supports families going through the stress and anxiety of a neonatal journey?
Here’s a gallery of support examples.