My Premature Baby’s Journey – What to expect when your baby needs special care

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My baby was born at 32 weeks, 8 weeks early. This is his story, what we encountered in the special care baby unit and how he developed.

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My oldest son William was born at 32 weeks gestation, just under 8 weeks early. He was a twin, and we had complications (click here for the full story), meaning I went into labour at 32 weeks and 5 days. I’d had a set of steroid injections the week before, which can help mature the baby’s lungs. If you are at risk of premature labour, you may be offered this.

He was born via emergency c-section, a tiny 3lb 7oz (1.5 kg). I was expecting him to be tiny, but even as a Midwife who’s seen and worked with neonates, I was still unprepared for how tiny and baby bird like he looked. I knew he was going to be a boy, and I’d dreamed of that moment for so long, he was such a long awaited healthy baby. I’d not long lost my first child to Tay-Sachs disease, we’d had her funeral only a few months before. I had to have a general anaesthetic, because his heartbeat was dangerously low and there wasn’t enough time for a spinal to be put in, meaning I was asleep when he was born. As soon as I was awake I asked to be wheeled in to the special care unit to see him. My husband had taken a photo of him, which to this day is so precious. Photos are often all you have when you can’t be with your baby, so take lots, even though they’re all going to be similar. I stared and stared at him, and when they wanted to take me back I wanted to stay, but I was on strong painkillers and drifting in and out of consciousness. All I had on that long first night was that one photograph on the camera, which I kept bringing up on the screen.

IVF PGD, my story - twins, with misdiagnosis and the after effects

He had a tube down his nose into his stomach which was to give him milk, stickers on his chest to monitor his heartbeat, an oxygen probe on his foot to monitor his oxygen levels and for the first few hours of his life, he had a mask over his nose that applied positive pressure and air to aid his breathing and oxygen levels (this is called CPAP and looks worse than it is). The CPAP is one step down from being on a ventilator, which does all their breathing for them. Babies born before 30 weeks are more likely to need ventilation or some sort of breathing help. Sometimes they will use a tube that sticks on the baby and leads to a machine that alarms if baby stops breathing, called an apnoea monitor. They will need an IV line giving them fluids and sugar.

They don’t wear clothes when they’re in an incubator, just a nappy and are often cocooned in a soft nest. The incubator controls the temperature that is set by the medical team. Once the baby can maintain their own temperature, they will be moved to a cot and can wear clothes.

The importance of Skin to Skin for premature babies

Skin to skin, sometimes known as Kangaroo Care, is encouraged in special care. If you are too unwell as the mother, the father or birth partner can do it. It helps to maintain their temperature, heart rate and oxygen levels. They will know your smell and sounds. This is the first time I held my son, the following morning after his birth.

IVF PGD, my story - twins, with misdiagnosis and the after effects

The following day I got to do skin to skin contact, we both loved it and it also helps to establish feeding too. Don’t be scared of all the beeping machines, they’re set to alarm at a certain level, but it’s often because the leads have fallen off or because you’re moving the baby and will soon rectify.

IVF PGD, my story - twins, with misdiagnosis and the after effects

I expressed my breastmilk, hand expressing at first and then via a hand pump before progressing to the electric double pump! They had pumps on special care and I had one on the postnatal ward which I then took home. After a couple of days I felt I couldn’t keep up with what they were asking for and I was advised to take a break overnight, I was exhausted. I’d needed a blood transfusion and I was very weak. I felt really guilty, if my baby was with me and full term, we’d just be breastfeeding on demand, but because he was medicalised in hospital, his milk requirements were calculated according to his weight. He had fluid at first through his bloodstream and then milk feeds. After that nights rest I then had no trouble and had loads of milk.

premature-baby-small-hand-in-large-hand

His tiny hand with his Grandma’s

They told me he wouldn’t suck for another 2-3 weeks but he had other ideas – and so did I. I myself was a premature baby at 32 weeks as well (my mum just went into labour early) and my Mum told me I just fed, never had a tube down and was called a ‘mature baby.’ That was in the back of my mind, and since the first skin to skin cuddle, I would put him near my nipple and gently encourage him. After a wee, he latched on and fed. They withdrew some milk from his tube which proved he was feeding from me. The staff were amazed, and pretty soon he was having all his feeds from me bar the night feeds, as I’d gone home by this point.

Leaving your baby at the hospital

This was heartbreaking, I stayed longer than you would normally, for 5 days in the end, but then I went home, without him. It was hard, but I was able to better recover, and we luckily didn’t live too far from the hospital. I pumped my milk every 3 hours without fail, getting up in the night too. I stored it in little bottles which were then frozen. When we left the hospital I had loads spare! Some hospitals do have rooming in facilities if you live far away, or accommodation you can stay in. There may also be some help with travel expenses. It can be difficult, particularly if you have other children to look after. Don’t be afraid to ask for help. At our hospital, they only allowed immediate family (parents and grandparents and other siblings) to visit, meaning aunts and uncles and cousins had to wait.

baby-in-incubator

After a week, William was in a cot, with clothes on. It was wonderful, such a turning point. The downside was I didn’t get to dress him for the first time, and they’d dressed him in a hideous bonnet! I took that off and put a woolly hat on him. There are lots of wonderful people that knit little hats and cardigans for tiny babies in neonatal and special care and donate them. I was so appreciative of this, because you just can’t buy them anywhere. At the time (2009) there were only a handful of places that sold really tiny baby clothes, and you could only get pampers ‘micro’ nappies. The baby unit didn’t provide these beyond the initial few. Those little donated cardigans and hats kept my baby warm and cosy. I took some and donated money to the SCBU (special care baby unit) and I still have them to this day, plus his tiny name band and cot card. Nowadays there are a few places that sell tiny sizes like Boots, Mothercare, George and John Lewis.

Once he was feeding regularly, and no longer being topped up with my expressed milk, they asked me to ‘room in’ with him. This was fabulous, a real bonding experience just for us. I had a room down the corridor from special care with a bed, TV and sink in and he was there with me in the cot. He still had his nasal tube (NGT) in just in case. I had the staff on hand and they popped in to see me every now and again, and noted down when and how long he fed for. I bathed him for the first time. He still had the apnoea monitor on. After the first night, they took this off which I was terrified about, but they said I wouldn’t have it at home and it wasn’t needed.  I actually had a breathing monitor at home, one that sits under the baby’s mattress and alarms if the breathing rate (based on movement) falls below a certain level. This reassured me, even thought they can’t necessarily prevent cot death, it can give you a bit of peace of mind and stope you staring and checking every 5 minutes! I stayed 3 nights in total, he always woke just before his feed was due, even though I set an alarm. After the second night they took the NGT out, and after the third night, the Paediatrician came round and said we could go, they weren’t doing anything for us. He had gained weight, although he was still under 4lb, they knew I was a midwife and I was deemed sensible enough to take him home.

Taking my premature baby home

It was daunting but exciting taking him home. He was so small he didn’t fit in the car seat properly, we had to put a blanket inside it. We got daily visits for the first week from the Health Visitor which I really appreciated. The daily weights did cause some anxiety though, at one point formula top ups were mentioned, and had I not been a health professional and pro breastfeeder myself, it could have turned out differently. His weight picked up and they were satisfied. I went weekly to get him weighed for a while. I did take him out, I used a baby wrap and also the buggy. We got comments wherever he went, people thought he was a doll and couldn’t believe he wasn’t in hospital. We went to a wedding after being out a week, one guy kept on saying ‘Are you sure he’s allowed out?’ which wore very thin and I got cross in the end, I felt he was implying we shouldn’t have brought him. We stayed for the day, then left when the disco started because I was worried about his ears. He slept a lot, but woke for his feeds. He was already used to the regime from special care, which made it easier.

At 8 weeks he was still tiny and we were careful to keep him wrapped up. He looked like a little old man, in this picture we thought he looked like Len Goodman from Strictly, so my husband made him this little judging stick! Seveeen!

william-8-weeks

Milestones and the premature baby

Although I’m a health professional,  I had no idea really about how being premature would affect his milestones. I naively thought that by Christmas (he was born in August, due date in October) he’d have caught up. In reality, this wasn’t the case. In the picture above, he was 8 weeks and still not smiling. By his adjusted age he was only just born! If I adjusted for that, his milestones were normal. It was hard, especially when we started going to baby groups and met other mums who’s babies were the same age but were ahead of him developmentally. I knew he would catch up eventually, but when you’re in the situation, you focus on the small things. By Christmas, he was smiling and blowing raspberries. At 6 months, he wasn’t sitting up yet, but managed at 8 months. He crawled at 10 months and walked at 14 months. Strangely, the weaning advice for solids is the same, you don’t adjust, which I still find strange advice. I started tentatively at 6 months. By age 2 you couldn’t tell the difference between him and his peers really, and everyone compares each other anyway. They still offer the vaccinations at the same age, they don’t adjust.

william-4-months

Aged 4 months

william-7-months

Aged 7 months

william-8-months

Aged 8 months

william-11-months

Aged 11 months

age-1

Age 1

Starting School

As he was an August baby and premature, it felt like he was starting school very early! I could have held him back a year, but I didn’t want him to not be age appropriate for his school year plus I was struggling with 2 children and I wanted some help! He was a little behind but by the start of his second year in school I can see no difference. He’s gone from strength to strength and I’m so pleased with his progress.

Medical issues

Generally, he’s been fine. When he was just 6 weeks old he got a cold which went to his chest and needed antibiotics. He became very wheezy, but he was called a ‘Happy wheezer,’ because it didn’t seem to bother him and his temperature was normal. The next time he got the same, when he was around 3 months old, we ended up in hospital with him on a nebuliser and oxygen. Until he was 3, we spent time in hospital every time he got a cold because he needed the nebuliser. Eventually they gave us an inhaler and spacer to use and we could use up to 10 puffs at a time to help him. This meant we could manage it at home and no longer needed to be admitted to hospital. I’ll never know for sure whether his viral related wheeziness was related to his prematurity, but I believe it is certainly a factor.

When he was born, he had an umbilical hernia, which looked like a lump around his belly button. It scared me, and I was told he may need it operated on, but at around 4 months of age, it went down by itself and he had a normal belly button.

Other than that, he’s had no problems. He had hypospadias which needed to be operated on, but that wasn’t due to him being premature. He’s no smaller than his peers, he’s actually one of the tallest!

william-age-7

The first 2 years with a premature baby are the hardest, but then after that, those little differences become less and less.

If you have any questions about this post or if you have had a premature baby, I’d love to hear from you, just comment on this post or send me a message via Facebook or Twitter.

Jenny-midwifeandlife-midwife-blogger-mummy

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7 Comments

  • Reply OneDad3Girls (@OneDad3Girls)

    What a beautiful memory to pop up. His hands look so tiny

    Thank you for linking up

    August 30, 2015 at 8:54 pm
  • Reply Adam Hickmott

    I found this a great read, very close to home. My little boy was an early bird to. I’ve written a piece you might find interesting about his beginning: https://storiesofadad.wordpress.com/2015/10/10/dont-forget-each-other/

    October 26, 2015 at 12:13 pm
    • Reply MidwifeandLife

      Thanks I’ll visit later, I’ll be adding to this post when I get a chance!

      October 26, 2015 at 12:44 pm
  • Reply Lucy Gibson

    Jenny, it was great to read about your tip of having skin to skin with your premature baby. My sister also had her daughter prematurely. It’s great to know that there are professionals out there who are specialized in this and can help; it can be a huge relief at times. Because of the whole process, she’s even looking into neonatal care as a possible career choice. I’m sure there’s schooling for it, but I’m glad that there are people to help in these situations. Thanks for sharing your story.

    September 1, 2017 at 12:37 am
  • Reply Dennis omy

    Admirable!!! Such an amazing post with bunch of touching pics. Thanks a lot for sharing your moments. Keep posting, looking forward for more.

    January 1, 2018 at 8:30 am
  • Reply C Wales

    My baby was born early too…he was just 3.4oz and 16 3/4 tall. This was in 1996…he was a little fighter and now at 21 years old he is 6.4 and over 200 lbs. He did start wearing glasses in freshman year…but I don’t attribute it to being born super early. I love my giant and hope this gives a mother or father looking for hope just that …HOPE! My kid made it and yours will too. Just let them grow and learn and be themselves. They are precious miracles!

    August 24, 2018 at 8:34 am
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