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Taking your premature baby home: from strict routine to complete disorder

Taking your premature baby home

I thought having a premature baby in hospital was going to be as tough as it would ever get. And it was. But then we took our boy home. It was one of the best days of my life and one I thought would never come. People said we would be ready – we had spent 5 weeks in hospital getting to know our baby and he was already in a ‘routine’. And I almost believed them. But in actual fact, it was the opposite.

Your premature baby in hospital is fed on a schedule through a feeding tube. He sleeps through this process. He does not cry and does not need to be settled. You count how many mls he takes in, and record every wet and dirty nappy. You express breast milk every 3 hours to make sure he is given the best food. He is weighed daily and his feeds are increased accordingly. His reflux is treated with thickener. He thrives. It is clinical, a numbers game. The medical team seem to be prepared for every little hiccup.

Your premature baby at home needs to learn how to suck well before his time. He needs to be woken to feed and needs enough sleep in between to have the strength to do so. He attempts a breastfeed, but you have no idea if he is full or if he is just too tired to suck. You question yourself constantly. You top him up with a bottle or tube feed, and then express to maintain your supply. About an hour later you start this cycle all over again. He needs to gain weight, and quickly. He must stay home with strict rules regarding visitors and hygiene. It is hospital at home but you are filled with doubt, and the stress of him needing to grow rules everything and takes over.

Your baby then hits his due date and you get excited to be able to treat him like a newborn. You are now purely breastfeeding and have to let go of the schedule that has become ingrained and that you have come to trust. You have to instead trust your baby and let him wake and demand his food. He starts to cry, and does not settle. His reflux is untreated and unrelenting. He is unpredictable. He has awake time, and (ironically) you must remind yourself that this is ok. You constantly question whether he’s a newborn or a 10 week old. He is both. And he is no longer the premature baby you were familiar with in hospital. It is the opposite of everything you had come to know, and it is scary.

Taking a premature baby home is not a normal newborn experience that you can prepare for. When you leave hospital, you exit the safety and control you had found during the weeks you spent in that environment and enter a world of complete and utter insecurity (whether you are a new Mum or not). One of the midwives hit the nail on the head when she said to me ‘we send parents home with unrealistic expectations of their premature baby. All they see in hospital is a baby who sleeps and feeds and has his nappy changed every few hours. It is deceiving.’ Damn straight it is!

On top of this, your world has been turned upside down much earlier than anticipated – your baby literally changed time! And then you spend weeks or even months at the hospital while your house is left to grow layers of dust and a ceiling-high pile of washing. You are mentally and physically unprepared. You haven’t attended a birthing class, you never even started maternity leave, the nursery is only half finished (if you’re lucky), and you weren’t given the ‘routine’ education on the postnatal ward regarding the basics such as feeding and settling. You feel like you have stepped off the curb and been hit by a bus…or in reality, a baby!

So here I am hoping to make this surreal experience more realistic and give parents an honest heads up on what to expect when they finally get to take their miracle home. I’m sure not everyone will have difficulty (it’s the control freak in me), and some parents of full-term bubs might even relate, but here are some things I learnt along the way:

For me, breastfeeding a premature baby was the most UN-natural thing in the world and was the hardest part of taking our boy home. I sincerely hope this isn’t the case for you, but please don’t be surprised if it causes overwhelming apprehension and countless tears. I will touch on this (very) briefly now, but I have also written a separate (very) detailed blog discussing this emotional journey. Unlike a newborn, your premature baby does not give you any ‘clues’. Nothing is straight forward and there is so much you will never know. He does not let you know when he is hungry or full. You want to assume he is full when he stops sucking. But you can’t. And you don’t have the freedom to experiment. So initially, you follow the schedule set out by the hospital. You watch the clock and wake your baby for feeds. You document when he feeds, was it a breast, bottle or tube feed, for how long, on which side, how much he needed to be topped up, how wet was his nappy? Up until now, this schedule and consistency is all you’ve known, and it saved your baby’s life. When I went back to the hospital for James’ 8-week (actual) check-up I was still topping him up with a bottle after breastfeeds, despite him spilling and thriving. I was still feeding him by the clock and felt anxious about ‘letting’ him sleep past the 3-hour mark. The doctor said to me ‘Amy, you need to start having faith in your breastfeeding. Stop topping him up and let him lead the way’. And he was right. Eventually you will have to break out of the routine, but it will be harder than you think. For the sake of his growth and development, it takes you a long time to trust yourself (and him). But you will eventually surrender to disorder and stop setting your alarm overnight. It just won’t happen immediately!

Premature Baby

It is very hypocritical of me to say this (practice what you preach right?!) but please, as hard as it is, try to leave the focus and obsession on weight gain at the hospital doors. This advice was given to me by the same doctor as above, who admitted they need to put less emphasis on weight gain even in hospital. It becomes consuming and can overshadow the most important part – how well your little miracle has done to even survive. Yes, your baby needs to grow and play catch up, but the pressure that is put on this at home may well send you bonkers (please don’t contemplate putting your 2kg baby in a bowl on your kitchen scales!) I still weigh James fortnightly – at the chemist, I promise! – for my own peace of mind, and it is pretty sad to admit that I still get nervous every time I put him on those scales. But no matter what numbers pop up, remember they have good and bad weeks and it is totally normal for weight to fluctuate. Yes, Amy, remember!

Your baby will cry. I know this sounds stupid – all babies cry! But when I took James home from hospital he was 35 weeks gestation and hadn’t yet developed a proper cry. Call me naïve but that quiet baby in hospital was all I knew. And although your baby has already had a rough start to life, he unfortunately is not excluded from the new baby nasties like reflux, wind, colic, or whatever they want to call it on the day…cruel, I know! In fact, the likeliness is increased (yep, just what you need!) – you’d think having a baby 10 weeks early would give you a free pass on this shit! Your baby is not only premature, but immature. His gut is still developing and he can’t digest or process as easily as a full term bub. You may need to help him push out each and every poo he does in those early days – to be honest James still struggles to fart on his own at times! This is the stuff they don’t warn you about. It’s extremely challenging, it’s distressing, and it doesn’t get easier. But you do learn to cope, and one day he will grow out of it. Cliché I know, but please don’t deal with this on your own. One of our favourite nurses at the hospital was quite literally an expert in poo extraction and I like to think I am one of her apprentices – she taught me everything I know! I have a wealth of info and tips/tricks on wind and reflux. Just ask! Or just go visit Balance Integrative Health if you are in Adelaide – they will soon have your bub crapping all on his own!

If you are a first-time Mum, you will feel like you don’t even know the basics! My time on the post-natal ward was spent down in NICU with James. I went back to the ward to sleep and sometimes eat. And then I was discharged. At the time you will receive minimal education about expressing breastmilk and coping with a premature or unwell baby in the nursery. When your little one is discharged from the nursery, you will most likely spend a night in the parenting unit at the hospital and learn about taking home a premature baby – specifics surrounding tube feeds, giving medicine and required follow ups. This limited information is more than enough at such an overwhelming time when your energy is focused on solely surviving each day. But then you get home and realise shit, I don’t even know how to wrap my baby. Do I do it before he feeds, during, or after? Am I allowed to raise his cot? Why does he spill what seems like his entire stomach contents every time I put him down? You feel totally unprepared and even incompetent. I am one of the lucky ones who has the most amazing support network (shout out to my sister-in-law who has literally written me essays with advice, encouragement and even a good old ‘that sucks’). If you don’t have many people to turn to, please get in touch with your local midwives, GP, parent helplines – anyone! – and demand some help. There is nothing worse than feeling like you are alone and aren’t coping, because it’s totally not the case at all. You are actually in good company!

Initially, you will feel like the over-protective parent that you promised you would never be (even more so than a full-term parent, and yes, even if you are nurse!) You will think the worse. Every snot ball will feel like a fatal illness just waiting to take away your everything. You will constantly check if your baby is breathing, you will stress about his temperature, and you will wonder whether that red – almost invisible – mark on his forehead is a sign of the end. We were extremely lucky that James only required minimal medical treatment in his first few days, but even so, he was extremely vulnerable to infection. Please make sure you remind family and friends of this. I can’t even begin to imagine the anxiety parents must face if their baby needs to go home on oxygen or is suffering periods of apnoea. Not only do you need to ‘get to know’ your baby, but you also need to learn new medical equipment which up until now has been foreign and frightening. And those parents who have another child or children at home…well you are just above and beyond words. Every single person on this earth could learn a thing or two from you. I take my hat (and my pants) off to you. Let’s be honest, I get naked.

Depending on how early your baby was born, he can be anywhere up to 16 weeks old when he hits his due date. But he is still just a newborn. This is so surreal and hard to comprehend – shouldn’t he be smiling and interacting by now?! Instead he’s only just started crying! Despite your baby having these two ages (actual and corrected), he will never fit into either box! ‘Generalised’ information will never apply and you will never get a straight answer. Again, I know this is the case for all babies (they are all different and don’t go by the book) but it is particularly prevalent with premature babies – milestones are widely variable, ‘wonder weeks’ are completely erratic and he’ll be behind but ahead all at the same time. You will quickly find yourself telling people his corrected age when they ask. The looks you get when you tell someone he is 16 weeks old are discouraging, even when you explain he is ‘technically’ 6 weeks. He will constantly be compared and you will get sick of hearing ‘oh he is SOOO small’! At first you won’t be ok with this, but you will learn to just smile and nod and remind yourself how small he once was – and then you will feel insanely proud and even pompous! You would THINK that everyone would at least be compassionate or even impressed considering his story, but unfortunately not all is right with the world.

Premature Baby Meme

This one is quite bizarre but something that sticks out in my mind…laugh at me all you want! When James did mature into a bright-eyed 4 week old (corrected – see, it has to be clarified!), I found I was forcing sleep on him! I was so used to feeding him and immediately cuddling him to sleep that when he started looking around and becoming more alert I was shooshing him and rocking him, and trying everything to help him nod off! And no, he wasn’t even crying, just awake! This is partly because I didn’t know any better as a new Mum, and partly because the feed-sleep routine was all I’d known. I then had a light-bulb moment (yes, it does happen occasionally!) and realised derr Amy, he is going to grow and develop eventually! This is the moment you have been waiting for and you are doing your best to obstruct it! We’ve all heard people say ‘being a mum is the toughest job ever, but it is also the most rewarding’. But because you have had extra weeks or months of the newborn stage, you may feel like you had to wait a lifetime for the ‘rewards’. Of course your healthy baby is the biggest reward of all and you will feel extremely blessed to have spent every extra second with him, but by the time he hits 40 weeks you will also be well and truly ready to progress to the next phase of interaction and smiles. Don’t feel guilty that you feel this way. People will tell you to ‘lap it up’, cherish the newborn cuddles, ’they grow up so fast’. You can promptly remind them just how immensely you treasured your once-a-day hour-long cuddle in the neonatal unit. You are the last person to take this for granted!

Overall, I believe that surviving this unfamiliar and down-right scary journey depends on breaking some habits, forgetting the clock, and learning to trust your baby instead of the routine. Your baby will start to wake when he is hungry and you won’t feel nervous to feed him. He will go 4 hours between feeds, and you won’t worry that it’s too long. He will get thigh rolls and you won’t need to weigh him every week. He will cry and you will know the exact reason for it. He will sneeze and you will think it’s cute instead of immediately assuming he’s got pneumonia. He will have more awake time and you will stop stressing that he’s burning energy and not asleep. And then he will smile, and all the blood, sweat and tears will be completely worth it. One day, like the flick of a switch, you will have faith in yourself and your baby. But it won’t happen overnight. Have patience, and remind yourself how far you’ve both come.

Baby Feet

 

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