If you are a parent, you will know the feeling of taking your infant home for the first time – very excited, a little nervous, a tiny bit anxious, and completely unprepared for what lies ahead.
In many respects looking after a preemie when they are finally discharged from the NICU is the same. However, the anxiety you feel is magnified many times over.
“Premature babies are not simply small full term babies.
They need special care to support their growth and development.”[1]
Leaving the NICU can be terrifying, especially if you have to operate medical equipment (such as a feeding tube, or oxygen line). With Lily, our preoccupation was an intense watchfulness for infection or any sign of blockage after her ventriculoperitoneal shunt operation. How on earth were we to know whether throwing up all her milk after a feed was because her tummy was too full, or because her shunt was blocked? Not many parents take an infant home five days after brain surgery…
The lessons I outline here are an attempt to summarise the key realisations I came to during Lily’s first year at home, and the ways in which I learned to cope with the stresses and worries related to caring for my preemie. I hope you will find them helpful!
Lesson 1: Raising a Preemie is Different – Don’t be Afraid to Find Your Own Flow
Even for the most natural of earth-mamas out there, balancing traditional baby advice with the reality of your preemie’s specific needs is not an easy task. Yes, all new parents take a bit of time to adapt to having a baby at home. But bringing a preemie baby home is not the same thing.
As soon as your baby is home, you may find advice coming at you from many directions – from baby books, or family, or friends, and even medical services outside the NICU. You will receive well-meaning suggestions or hear comments intended to be sympathetic… “don’t worry, all babies throw up” or “don’t worry, all babies cry” etc.
The trouble is, preemies are not “all babies”. They have been lying in a hospital ward for weeks and months. Their feeding habits, sleep rhythms, medical requirements, vulnerability to infection, and sensory adaptation to the world are different. Your degree of anxiety about all these things is also, understandably, on a different level to parents of full term babies.
Trying to balance advice from all these different sources with the knowledge that your baby requires different attention and often much more intricate medical care day to day, can be very stressful.
The trick (I eventually realised) is to stop trying to fit your baby into a full term baby “box”; to stop defending the way you have chosen to care for them. Find your own flow, have confidence in it and trust your own instincts.
Let me give you an example. Much of the advice you will get and all the books you read are about developing a sleeping and feeding routine for your baby. For us this was seriously challenging: 1) Lily’s weight was in the low percentiles and gaining weight was very important, and 2) Lily didn’t happily down 200ml of milk in one sitting – we were lucky to get her to have 100ml over 2 hours! Feeding was therefore our prime concern and somehow instead of 8 feeds a day we had more like 16. I found this all very stressful because all the books were telling me one thing, but my priorities were different. Thank goodness for our midwife, the baby-whisperer, Karen Siegler, who helped me to stop panicking about it. In the end we found a rhythm for Lily, to suit her needs, and following this approach we have now at 19 months ended up with a “routine” as close to anything prescribed for full-term babies.
Lesson 2: Advice Can be Hard To Find – Leverage Your NICU Network
The trouble with Lesson 1 is that you will still be desperate for advice and it can be hard to find. I was very fortunate to be able to consult Karin, who was very responsive to my neurotic messages. I was also not afraid of calling the hospital in the middle of the night, or even the ambulance (see Lesson 3 below).
But I did wish I had a group of parents to confide in or that there was a preemie baby book I could refer to. If you have a NICU network, USE IT! Per my first blog, parents who are going through the same experience are oftentimes your best resource.
Unbeknownst to me, a wonderful book for preemies had just been published when Lily was in the NICU. Somehow I missed it. I now highly recommend “Preemie Care” to all preemie parents.
Lesson 3: You Will Be Hyper-Vigilant For a Very Long Time
One evening about two weeks after Lily was discharged, I was gently burping her on my shoulder, when she suddenly slumped and didn’t respond when I tried to rouse her. Sean heard the tone in my voice and looked up, alarmed. He grabbed her and started shouting “Lily! Lily!”. Nothing. He clapped his hands loudly, still nothing. We laid her flat and tried to listen for breathing but by then we were terrified. I called an ambulance and with typical Hong Kong efficiency they arrived in less than 5 minutes. They checked her heartbeat and her breathing and then she blearily opened her eyes. It seemed that in fact she was fine, simply in a milk-induced stupor.
One of the paramedics thought I was completely mad and suggested that I should google how to look after a baby. But he obviously had no understanding of the huge anxiety we lived with every day: (a) in the NICU she had regularly had episodes of apnea and bradycardia, and (b) when a ventriculoperitoneal shunt gets blocked, the signs you are meant to look for include lethargy and “can’t be roused”. ERGO, when Lily fell into a deep sleep, we just assumed the worst.
We have gotten better at it, but we still have a baby monitor next to our bed and every time we hear a squeak out of Lily at night, we dart out of bed to her side.
Lesson 4: You will Learn to Readjust Your Expectations and Be Okay with That
Every premature baby is different, but most preemies generally take a bit of time to catch up (developmentally speaking) with their full term peers. If all goes well, then they are usually expected to reach their milestones by about 2-3 years old.
Some, like Lily (we now know – see Lesson 6), may take much longer. She had shown such determination to survive from the very beginning that I came to see that Lily would make her way in her own time. That doesn’t mean that my heart doesn’t clench just a little (for her, for me, for us) when I see little ones younger than her who have achieved typical milestones before she has.
But as time rolls on, I no longer compare. I see Lily in her own right and all the possibilities that lie ahead of her. In fact I stopped checking developmental milestones pretty early on and learnt to celebrate Lily’s little accomplishments in “inchstones”. I have adopted a positive outlook and will always be full of hope for her future.
Lesson 5: Try to Get Your Baby Enrolled into an Early Intervention Programme ASAP
Due to her “stormy” start we were told that Lily would be enrolled on a “High Risk Infant Programme” (HRIP) in the public hospital system that would evaluate her progress every 4 months and provide some form of “early intervention”. This is a term you may hear in the preemie world and I will discuss it in more depth in my next blog. Essentially it is about therapies and services that help to support physical, cognitive, behavioural and social & emotional development[2].
A friend with a preemie strongly urged me to supplement the HRIP with regular physiotherapy. I decided to follow her advice and sought out a private paediatric physio with specific neurodevelopmental experience. There is no question that working with Lily’s wonderful physiotherapist, Jessica Tuohy, since Lily was 5 months old (2 months adjusted) has made a huge impact on the progress of Lily’s motor and cognitive development.
The catch of course is that we are very fortunate to be in a position to pay for this private therapy. I do not therefore have the authority to generalise our situation. That said, our insurance only covers a minimum amount and so we do as much as we can manage, but also do a lot of the work with Lily ourselves every day at home.
Private therapy can be prohibitive, and I know that in certain countries you can only access publically provided programmes if your diagnosis meets certain criteria (often driven by what insurance will cover). This makes accessing early intervention very difficult.
However, if you think your preemie would benefit from these types of programmes, I would highly encourage you to try whatever means available to you to access them. In my next blog, I will look at different ways in which you could do this publicly, privately and even how at home you can get your little one moving and stimulated and learning.
Lesson 6: Brace Yourself for Potential Diagnosis
Lily’s first paediatrician was a very experienced neonatal specialist in whose hands we felt very safe once Lily came home. She understood prematurity and the risks it carried. She knew about shunts and the risks they carried, reminding us always what to look out for, and taking the extra required precautions.
All the same, every visit to her filled us with jumbled nerves because we knew that Lily’s brain injuries could have far-reaching implications that may not manifest themselves until she was a little older.
Eventually the day came when the doctor confirmed her suspicions that Lily probably had cerebral palsy. Lily was 8 months old (5 months adjusted). It was not entirely unexpected news but I came away from that appointment feeling very low. Sean was amazing. I met him near his office afterwards and his exact words were “she’s got fight in her, so we make the best of it!”. He was so strong and reassuring, although I knew he felt the blow too.
In his wise way he helped me see that our family’s and Lily’s is simply going to be a different journey, not any less of a joyous, fulfilled or happy one.
COMING UP NEXT – THE BENEFITS OF EARLY INTERVENTION
[1] Preemie Care: A Guide to Navigating the First Year with Your Premature Baby, by Karen Lasby and Tammy Sherrow
[2] https://www.eif.org.uk/why-it-matters/what-is-early-intervention
This is the most informative heart-searching blog. Thank you for sharing your experiences with all parents in similar situations who need to know they are not alone.
Les, thank you so much for your kind comments and support – I do hope that SuperLily can in time serve this purpose!