Three years ago I was faced with every expectant mother’s nightmare when my daughter was born early at 26 weeks gestation. Fortunately I had been on bed rest for a month preparing for an early arrival and familiarising myself with the statistics and potential outcomes, but in reality there was no way to prepare for the rollercoaster that was to come. What struck me the most in this time as I lay in hospital with nothing to do but ponder my future, was that everyone that visited me had a story- someone they knew, or someone’s friend, or a relative of a friend’s cousin – who had been in my position. And after the experience of living through months in a NICU it made me realise that the insight of other parents who had been in my situation would have been invaluable. If only I had been able to reach them, ask them questions, or just sit in silence next to someone else that understood. Because when it comes to prematurity, you really can’t get it unless you have lived it.

So here is my contribution to anyone that may need it – to anyone that is on bed rest, has recently had a preemie, (or had a preemie at all), and to anyone that has a friend living through it that they don’t know how to help. It’s a frightening time, and you never know what might help a new parent navigating prematurity through unchartered waters, and up against strong headwinds and stormy seas. Please remember its just my experience. I’m not an expert or a health professional, just a Mum who has been on the NICU rollercoaster.

The Basics

Prematurity is far more prevalent than most people realise, with 8% of babies being born early in Australia, (before 37 weeks). 1.5% of these babies are born before 31 weeks. [1] Many factors determine the outcomes for these babies, including;

• Gestation
• birth weight
• health of the mother and baby at birth
• sex
• Maturity of the baby’s internal organs
• Presence of breathing problems at birth
• Multiple pregnancy
• Presence of congenital abnormalities
• Application of antenatal steroids
• Whether the baby is delivered at a hospital, particularly one that offers special care.

In reality every experience will be different and the outcomes for premature babies are notoriously unpredicatable. For more on the outcomes for premature babies by gestation, see here.

Resources

http://www.miraclebabies.org.au/

http://preemiehelp.com/

http://www.lilaussieprems.com.au/

http://www.marchofdimes.com/baby/premature-babies.aspx#

 

 Bed Rest Tips

Some mums will be put on bed rest prior to giving birth prematurely. While this is a blessing of sorts, (the outcomes for preterm babies born in hospital, particularly a hospital with level three care or a NICU, are considerably better than those born suddenly outside of a hospital), it can be challenging for Mums who are confined to a hospital bed for weeks or months at a time. Sometimes a mother will go into labour and be transferred to hospital only to have the labour slowed or stopped resulting in a stay on bed rest. Other times they may have a slow leak in the amniotic sac, or there could be concerns about the baby’s health. There are a myriad of reasons for bed rest, although Dr Joseph Biggio Jr of the University of Alabama at Birmingham reported in his paper in theJournal of Obstetrics & Gynecologythat there is no conclusive evidence that bed rest prolongs a pregnancy prior to early or full term birth. Regardless, many doctors prefer to err on the side of caution and have the patient in hospital waiting to deliver.

This is a tumultuous time for a mother enduring a pregnancy that is outside of the norm, and it is very likely that she will feel completely alone at some point. The following is a list of tips that got me through a month on bed rest – it is not exhaustive and they may not work for everyone, but they worked for me.

• Develop a routine. This may seem insane if you are in a hospital bed, but you would be surprised how a sense of normality can get you through the seemingly endless days. For me it was breakfast, read the paper, fill in tomorrow’s menu, read for an hour, craft for an hour, recorded television for an hour, and so on.
• Ask friends and family to stop by regularly if and when you feel ready. Ask them to create a schedule to come and keep you company, update you on the outside world and talk to you about mundane things like the weather and news items. If you have other children ask someone to bring them in as frequently as possible. This will help you to feel less disconnected from the life that waits for you back home.
• Invest in a DVD set of a new series you have never seen before. For me, it was very simple and uncomplicated television like reality TV that distracted me from my reality.
• Take up a craft, like knitting, drawing or embroidery. Something that requires intense concentration can really help pass the time.
• Ask lots of questions of the nurses and doctors. This allowed me to feel more comfortable with what was happening.
• Take a tour of the NICU if you are at a Level 3 hospital. It can be overwhelming to picture what your baby may look like, and the reality is far less daunting than what you can conjure up with an overactive imagination during periods of boredom!
• Get a dongle so you can keep in touch with what’s going on outside your hospital room – social media, online news site and email can be life savers during the long hours.
• Ask friends and relatives to bring in some food for you. If they come just before dinner or lunch they will be able to heat it up in the ward kitchen. Hospital food is not always the most nutritious long term and compared to it a homemade casserole can taste like a meal at a three hat restaurant. Also, strict bed rest can result in constipation, which is incredibly uncomfortable and stressful for a pregnant mum to be, so home cooked meals are a valuable source of fibre.
• Keep a journal of your thoughts. I became fascinated with Albert Einstein, (a preemie), and wrote a daily quote in my journal as an affirmation. The simple task of finding and recording a quote distracted me for precious minutes daily.
• Go easy on yourself and have a plan if negative thoughts pop into your head. Assign yourself a person you can call, (with their permission), day or night when you start to feel down. Write affirmations down to read when your head space becomes too dark. And get to know the night nurses. Often bed time is the loneliest time in a hospital and the nurses are often at a loose end during the long hours before dawn. You may feel guilty or even depressed by the situation, (these are not rational thoughts, but nonetheless they can have devastating effect). Remember, you are doing the very best thing you can do for your baby just by being in the hospital. Ironically, sometimes the very best thing to do is nothing at all and by being on bed rest you are making an art of it!

Friends of Preemie Parents

I often get asked what people can do for their friends that are on bed rest or have just had a preemie baby, and these are my answers. Please note, every experience is different and therefore what worked for me may not work for your friends. Above all expect your friend to be an emotional wreck and unable to return any of your kindness. Any good deed you do for a friend living through prematurity will need to be done under the expectation that your relationship is, for a short time, a one way street. There may be little space in your friend’s head for thankyous or returned phone calls. It doesn’t mean your kindness is not appreciated, but every ounce of energy is probably taken up worrying and caring for their sick child.

• Treat the birth like you would any other regardless of the outcome. Send flowers, give small gifts, say congratulations. One of the toughest things about having an early birth is the loss of normalcy during and following pregnancy. Your friend may have missed out on a significant portion of pregnancy and this may be devastating to them. Some women even experience phantom kicks for months after they give birth. So little specks of normalcy can be reassuring.
• On gifts, be careful in what you choose and steer clear of typical baby clothing gifts early on. If things go badly it could provide a sad reminder for what a parent has lost, and even if they go well it is unlikely that a preemie baby will be wearing clothes for some time. When they do, they need to be specifically tailored to allow for chords to go in and out, and most clothes, even 5 zero sizes, will be way too big.
• A journal is a wonderful gift to record the goings on in a NICU regardless of the outcome. Other mind saving gifts include an MP3 player with a mix of soothing and uplifting songs, especially if you know the parents’ musical taste. Music will help drown out some of the incessant beeps and alarms that chorus through the NICU.
• My favourite gift during the four and a half months in the NICU was a Sophie the Giraffe teether. My daughter was just about the same size and we were able to get photos of her as she grew. Even today it is a nice reminder of how far we have come.
• Later towards the due date if things are going well, ask your friend if they would like a baby shower. This is a better time for clothes and traditional baby gifts, and your friend will likely be starting to think about the impending homecoming of their much loved new addition.
• Ask her if she is okay. She may not tell you, but she may still need you to ask.
• Keep the meals coming and offer to do practical things like laundry or looking after siblings. It can be a real juggle living in the NICU and attempting to get household chores done while taking care of a small child who may be feeling neglected.

Life in the NICU

It is difficult to describe what it is like to have a baby in intensive care for months on end. Everyone’s path will be different depending on your baby’s prognosis and gestation and your family circumstances. Doctors, midwives and nurses, may warn you about feeling depressed when you leave hospital without the baby, feelings of guilt for not being able to breastfeed, and the emotional rollercoaster that you are about to embark on. The mantra of a NICU is ‘two steps forward and one step back,’ meaning the expected road to recovery will include many obstacles and set backs, but hopefully your baby will be moving in the right general direction. These may seem like clichés but they are all accurate in one way or another and in varying ways – depending on your own personal journey.

But there are some things that doctors can’t tell you at the outset of what is sure to be a life changing experience because they have probably not gone through it themselves.  In my own encounter with the NICU a few things took me by surprise.

• Doctors will never tell you it’s going to be okay. More specifically they will never tell you your baby is going to be okay. This is partly because they can never say for sure, (which is true of any newborn baby but magnified in the case of a preemie) and partly because even if they are almost certain they need to choose their words carefully. After a few months in the NICU it is easy for parents to pin their hopes on tiny slivers of possibility and the doctors need to deal primarily in facts and what is known. In any case it can be very frustrating for parents who may feel like it is difficult to get a straight answer from their neonatologist, and at times it may feel as though the doctors are always giving you the worst case scenario. Rest assured these professionals, both the nurses and the doctors, are the very best at what they do. It takes a very special person to choose such a profession and they deal with all sorts of outcomes on a daily basis – from miraculous to utterly heartbreaking. The truth is there is so much still to understand about the outcomes of prematurity and it’s often difficult to tell which babies will thrive and which ones will struggle.
• The beeps will drive you crazy. At first it will seem jarring to have alarms go off constantly and the first few days in the NICU may leave you feeling extremely drained because you are quite literally on the edge of your seat all the time. You will soon learn to take your cues from the nurses and who are usually extremely calm and level headed. These professionals know how to react in a crisis – if they are not worried about the beeps you shouldn’t be either. Take an MP3 player and listen to something to drown it out if you need to.
• It is quite likely you will see something shocking, heartbreaking or life altering. You may see a baby pass away or parents be told some terrible news. You may witness an emergency. Many people I have spoken to have been surprised at how this has affected them, but the simple truth is that it is very easy to put yourself in the place of those parents. There are constant reminders of your precarious situation and its likely your emotions are already on high alert even if you are controlling them for the outside world. Most NICUs have social workers that are there to help you deal with these situations and the nurses have seen just about everything. Plus, there are always other NICU parents around if you feel you need to talk to someone that has been through what you have.
• You will feel like you are in a bubble. You may feel as though few people in your life understand what you are going through and it can be very isolating. Added to that, you might feel as though you each minute lasts several hours because parents have a tendency to watch the monitors second by second, (I know I did, despite being told not to by the nurses). Don’t do this if you can help it – there will be thousands of alarms and beeps in your months in the NICU. Focussing on each one will become exhausting.
• A journal is a great way to keep perspective. If you have a day where you are feeling particularly down about your baby’s progress read a page from a week ago. We rarely register gradual changes that are so pertinent to a baby’s health and after reading previous posts you will soon realise just how far he or she has come.
• Tiny little wins will become a big deal and tiny defeats will feel soul crushing. The first time you get to dress your baby will feel like they have just been awarded the Nobel prize, but the day a nurse tells you that your baby is having a tougher day and needs to stay in the crib can be devastating.  I suppose the old expression has some value – a watched pot never boils. You may be watching for a long time making little milestones more significant. Equally when your baby fails to meet a milestone it may feel as though the world is caving in. Try to remember tomorrow is another day full of milestones and possibility, as desperately hard as it seems. Go back in your mind to the last two steps forward and remember there will be another two soon. It is hard to keep the big picture in mind when you are focussing on the minute by minute, but it is important to keep perspective if you can.
• You will get to know the nurses like family and it may feel as though they are sometimes because they are caring for your child.
• There are a myriad of resources at your fingertips in the NICU. My daughter had no less than 12 specialists before she left the NICU. Ask them as many questions as you can. It will make you feel more in control of your family’s destiny and help you to understand what you are up against. One of the most valuable resources for me was the physio and OT that came to check on our daughter. They were a fountain of knowledge when it came to development and were able to give us strategies for giving our baby the very best chance at a great outcome. You will probably have a lot of specialist appointments following your baby’s release from hospital too. These are a great opportunity to ask questions of a doctor away from the stress of the NICU. Write a list so you don’t forget anything.
• You will become paranoid about germs in your everyday life. This is probably part of being around a hospital, but like everything with premature babies it seems magnified because they are so susceptible to infection. You might find yourself not wanting to see friends in case they are carrying flu strains, or wanting to wash your clothes as soon as you get home from the supermarket. It may seem paranoid or neurotic, but on the other hand it may save your baby’s life. Talk to your neonatologist about ways you can reduce the risk to your child, but accept that there are risks we cannot control.
• This is a marathon. Let me repeat that, because I know it sounds obvious but its so important to remember at the outset. This is a marathon. Look after yourself. Get some daily sunlight, some exercise, eat as well as you can manage and surround yourself with people and things that make you happy. When you are living through this microcosm of the real world where babies are born full term and go home after a few days – endurance is key. There will be days you may lose your temper, feel like crying for no reason or not want to talk to anyone at all. That’s completely okay. Allow yourself to have whatever feelings you need to and be kind to yourself and your partner.

This is just my experience and may not work for everyone, but had someone said this to me at the start of our NICU stay it may have made life a little easier.

Most of all take heart – there are others that have been through this before you. Although it feels like it sometimes you are not alone.

 

[1] Li Z, Zeki R, Hilder L & Sullivan EA 2013. Australia’s mothers and babies 2011. Perinatal statistics series no. 28. Cat. no. PER 59. Canberra: AIHW National Perinatal Epidemiology and Statistics Unit.