We spent nine weeks in total on the unit; one week in NICU (Intensive care) and eight weeks 'feeding and growing'. We were one of the lucky families. Nothing majorly serious happened during our stay which was as straightforward as it can be for a premature baby. Yes, it was one step forward then about six back, yes she still had apnoea's (stopping breathing) and bradycardias (slowing heart rate) meaning she needed varying degrees of stimulation, yes she needed various medication to get her through to the next step, yes she required breathing support, but she was not affected by many of the afflictions which sadly too many premature babies and their parents have to experience. The only blip was, after being in air for a few weeks, she began to tire and had to go back on to low-flow oxygen via a nasal cannula. Unfortunately, rather than wean her back of this her requirement crept up and when she started oral feeds (34 weeks gestation) she needed more and more. After fits and starts, she began to get the hang of bottle feeding and as the magic words "home time" began to be whispered it looked like she was going home on oxygen.
Many parents are left reeling from SCBU months and years later. It is such an alien place that is to the be the ground for the some of the best and worst moments of your life as a family. You have a baby; but you don't have a baby. And few people understand. They try, people really try but again, it is so alien.What do you say to someone who has a baby in a critical condition? What can you do for a friend who is experiencing grief? It is human nature to put a good spin on things, "don't worry, it'll be alright in the end", but sometimes this is not what we need. Personally, I felt desperate that people should acknowledge how hard it was. I mean, can you imagine leaving a tiny, sick baby while you go home? Can you imagine giving birth then existing separately whilst other people care for your baby? Can you imagine asking permission to just touch their hand? On one hand, you are so grateful to the medical staff for saving your baby, ensuring you do have a happy future, but on the other you are almost seething with resentment that it should be you taking care and being a parent.
Everyone deals with the experience very differently. This briefly was mine, and in hindsight my pleas I wish I had had the strength to say out loud to people at the time. They may sound selfish in places, but I cannot convey enough how distressing it can be:
- This is one of the hardest times for me. Don't try and make it better: the only way it is better is either by turning back the clock or turning it forward being at home
- Please don't crowd me. I spend all day, whilst sitting solitary by an incubator, surrounded by people who rightly know all my private business, who record things I might say and who know every movement I make.
- Please let me get to know my baby first. I know everyone is excited by a new baby and wants to take part, meet them and have fun but I am still bonding with my baby. It is hard, really hard. Let us have some space. We will be glad of the company when we are ready, but only then.
- I really don't care if your next door neighbour bar two has a cousin twice removed whom was born 16 weeks early and now is a Nobel prize winning weight lifting millionaire hunk
- Don't keep saying it will be alright in the end. That is one of the worst things about this: there is no way of knowing if it will be.
- Once we get home, it will be like starting all over again. My baby might be well over a month old, but will likely only be reaching the stage of being effectively newborn. So it might take a lot longer than you think
- This will not go away overnight. I might really need a shoulder to cry on months down the line. Repeatedly. Please don't tell me to pull myself together and be grateful. It still hurts.
Before I even started blogging myself, here are three great posts by other bloggers about life in SCBU and how it feels, how frustrating it can be and how to help a friend or relative who might be experiencing it:
SCBU seems to sum up having a premature baby; it is a physical place where we can attribute blame or sorrow if we need to, rather than a more abstract concept or uncertainty that does not have a name. I treasure my keepsakes for being physical bits of history at a time where I was mentally struggling intensely and was for the best part on another planet just to get through, which means in part I feel robbed of creating special and happy memories. They and SCBU/NICU are the beginning of a journey which can define some peoples parenting experience, as it does not stop when you leave. I found we had follow up appointments, regular development checks, and when it transpired things were going more slowly, began to receive referrals to more specialist teams. These were all down to prematurity and the long-lasting affects. It never ceases to amaze me that being born weeks early can mean years of catching up. You simply don't pick up where you left off once outside the womb. Many are lucky and catch up between 2-5 years of age but equally many are left with long lasting problems, either physically, socially or cognitively. Of course, like anything these can be from mild to severe and can be managed, but it is not something any parent expects to have to contend with. It does not affect the love you have for your child, it just is something that as a parent you learn to accept and let go of some of your dreams of "My Ideal Perfect Family". It is learning that perfect has many forms.