Born at 29 weeks & 6 Days weighing 730 grams
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This post contains information about premature babies.
You may find some of the information distressing or upsetting which is not the intention, sorry.
But this is a premature baby success story
The post is to highlight premature babies.
To raise awareness to Fetal Growth Restriction the mental health issues which are associated with having a baby in a Neonatal Intensive Care Unit and also to raise money for QMC Nottingham NICU.
This is not medical advice
Please don’t take any of the information as medical advice this is just my premature baby story. It is 10 years since this all happened. I have never really spoke much about what did happen
2 weeks after we finally left hospital I made a really cheap, quick photo book online which told the story. By making the book it made it easier so I didn’t have to talk about it, anyone who asked I just passed them the book.
Nottingham University Hospitals Charity
I aim to make £50,000 for The Nottingham University Hospitals Charity. The money will go to the (NICU) Neonatal Intensive Care Unit at Queens Medical Centre. NICU is not just for premature babies, the big chubby full term newborn’s need help in there too. You can donate direct to Nottingham University Hospitals Charity
Reason for premature baby
My Son Jack Goutorbe was born premature at 29 weeks & 6 days weighing just 730 grams at QMC Nottingham. The medical reason for such a tiny baby was Severe Fetal Growth Restriction which was a 1 in 4 million chance. Jack, nicknamed LJ (little Jack) by the Doctors & nurses spent 6 weeks in the NICU (Neonatal Intensive Care Unit) at QMC Nottingham in an incubator. Then a further 4 weeks in Chesterfield special care baby unit. Jack is now 10 years old and is doing just great.
Problems with placenta
The placenta was the problem with Jack causing the severe fetal growth restriction.
This was proved after birth the placenta was that small that the Doctor wondered how he ever grew to the size he was of 730 grams.
20 week scan pregnancy abnormalities
Abnormalities were detected at the 20 week scan. Further scans proved there was a problem. The information below has been included to help people who may need it and proves how fetal growth restriction can be miss diagnosed early on.
The most high risk patient on a maternity ward
Admitted to QMC maternity ward on 26th March 2012 for a few tests, this turned out to be 6 days of fetal heart monitoring. The midwives and nurses were brilliant, but by day 4, I had one of the nurses hit the alarm and start running up the corridor screaming because I was too much pressure to look after being the most high risk patient on the maternity ward.
Scared to death during pregnancy
6 days of being scared to death, scared to death, If fact I was terrified. This is not the Doctor, midwives or nurses fault it was the situation. Going up and down to the delivery suite nearly every day with a baby which was not a viable weight to be delivered until day 4 of the 6.
Premature baby delivery
Jack was delivered by caesarian section with the Nottingham Neonatal team stood waiting.
Once delivered Jack was passed straight to the neonatal team and in no time at all he was off on a trolley through the doors with the team to the unit.
2 hours of amniotic fluid left
Once the neonatal team were gone the surgeon told us there was about 2 hours of fluid left there.
Seeing your baby in NICU for the first time
The following morning after the birth of Jack was the first time when I saw him, which was in the NICU. He so was so tiny and was in an incubator with so much medical equipment making the beep noises, the sound of these will never leave you.
There were wires, breathing equipment, just stuff I didn’t understand. Doctors and nurses were explaining but it really didn’t sink in.
It was lets say, all a massive shock.
One thing is for sure and that is, when you walk into a NICU you are not the same person that walks out weeks later. Having a baby is massive change to anyones life. By having a premature baby or baby in NICU you need to realise that nothing is going to be normal. Nothing is going to be the normal or text book style about having a baby which you may have read about. After you leave NICU you and your whole perspective and attitude towards life and everything will change forever. It is life changing experience.
Mental health impact
While you are going through it all you don’t realise the mental health impact from having a premature baby in a NICU until sometimes after you leave. This is because you are trying to keep it together, and the whole situation becomes your new life. The staff know exactly what’s happening to you and what you are going through. All of this whatever your situation can lead to PTSD (Post traumatic stress disorder) which can last for years. And post natal depression which can effect any one who has a baby. Here is great post from Bliss, which is a charity for babies born premature or sick it explains clearly both PTSD & PND >>>
Trauma related to premature baby
On day 1 of entering NICU I had just been through a traumatic time for 6 days, or 10 weeks really. Was wheeled into the NICU to see my new baby Son in an incubator which was a massive shock. Then that evening I had a psychiatrist or maybe she was a councillor asking questions and what felt like staring at me in my hospital room. This whole series of events together was too much for anyone.
Whatever the reason is that you are in a NICU for, it is normal to not feel normal. It is also normal that a psychiatrist or councillor will be asking you questions and probably be assessing how you are handling everything, that is their job. There is usually someone to talk to and to help you mentally on the unit.
Day 4 NICU
By day 4 a different councillor or psychiatrist came to see me and asked the questions again. But this time I fired questions back at her about Jack which I didn’t understand still, and was confused with everything. She did try her best to explain and said ‘It’s ok to ask the neonatal nurses questions”. Then she said loud, clear and really slowly “YOUR, ALLOWED, TO GO, HOME”. After a few what if’s and I’ll think about it, she said “I’ll tell the nurses your going home tonight”. You really need time out from this, it’s ok to go home for a night. The most important thing also to know is that if you think everything what is happening is your fault, it’s not your fault and
it is normal to think that too. So don’t feel guilty, don’t blame yourself and it’s not your fault.
You are allowed to go home.
I stayed at the hospital for 6 weeks solid in a NICU after day 4 of going home for 1 night.
The rollercoaster of NICU
Jack spent 6 weeks in Nottingham QMC NICU. If you read any other premature baby stories you will be aware of the ups and downs the highs and the lows. This is the rollercoaster of the NICU and trying to dodge any infections which can knock back any baby or worse. After 2 or maybe 3 days in NICU the Doctors had done everything they could medically. It was up to Jack if he wanted to survive in the world and he needed to grow to get out. Doctors and nurses were sent from different departments to take a look at Jack in the first couple of days. This was because he was so tiny like a 25 week old premature baby but fully formed like a 30 week old. He was 1 in 4 million but was obviously so different, they would come to the incubator look and then take another look, smile at me or go, oh, or oh yes, and then go.
For 6 weeks I just looked into the incubator
I spent the 6 weeks in the NICU looking into the incubator and hoping Jack would just take off and grow, I actually kept a diary of the events. His first amount of breast milk was given when he was 1 week old it was 0.5ml given through a syringe. 0.5ml was the total amount for day 1, slowly the amount increased to 1 ml per day. As you can imagine this was going to take some time for jack to grow on that amount. There were days of no milk because something was wrong, that is the rollercoaster. Breast feeding was not going to happen obviously but the milk was expressed through a machine then syringed to Jack in the incubator.
Jack came home
Jack finally came home after 10 weeks in hospital on the 11th June 2012. 6 weeks in Nottingham NICU then 4 weeks at Chesterfield SCBU (Special care baby unit) This was 2 days before his actual due date. He weighed 4 pounds & 1 ounce so was still a very small baby. Jack left hospital with loads and loads of medication to be given which was ongoing for a few years. 3 days later after coming home Jack got hyperthermia in June!!! He had to stay a night in the Nightingale Children’s Ward in Chesterfield hospital, once you leave NICU or SBCU you can’t go back in. Jack got hyperthermia because he was still so small, we were then told to swaddle him and he was to sleep with a hat on to keep the heat in.
Swaddle a baby
Swaddling a baby and putting on a hat when they sleep increases the chance of cot death. We were told to do this though because his chance of getting hyperthermia was greater than the chance of cot death. Jack slept with a hat on until he was about 3 years old. Premature babies need to kept warm, even when they go home you still need to keep them warm but not too hot. They struggle to keep warm and keep the heat in.
Premature baby clothes
You won’t need to buy any premature baby clothes whilst a premature baby is in an incubator. A nappy and a hat is usually all they wear. The hats are so tiny they provide them in the hospital for you.
Knitted premature baby clothes
Thin layers are best once a premature baby is in a cot in the SCBU. The unit at the hospital will have premature baby clothes which you can use and they may let you take them home to keep too. Hand made knitted items are great to use when you get home. In fact they are the best for warmth and the baby won’t get too hot. This is because the air can circulate through the wool items but still keep a baby warm. Learn to knit or find someone who is great at knitting. If your good at knitting, knit for your local NICU, ring them and ask what they need. Bliss has premature baby knitting patterns you can download for a small donation
Once we were home the health visitor came to see us each week, for a check up and to weigh Jack. She also told us that with Jack being so small at 4 pounds it would be best to stay at home for the first year. No mixing with other babies because he was more likely to pick up germs. So no nursery, no new Mum’s group’s and don’t take him to the supermarket, basically a Lockdown in 2012. As soon as he was 1 year old Jack started at the local nursery.
10 years on
10 years on Jack is good and doing great. He is healthy, above average in Maths at school. Premature babies tend to be behind at school to start with. Doctor’s, scientist’s and test’s say that premature babies will catch up which in Jack’s case he did by school year 2 at age 6/7. It is not easy having a premature baby or a baby in the NICU but it does get easier as the years go on. We were very lucky, I was in the right place and Jack has no problems whatsoever. Others are not quite as lucky.
Thanks Nottingham QMC & NICU