Having been asked by staff at the Birmingham Women’s Hospital Neonatal Intensive Care Unit to write a short account of our experiences there, following the birth of our twins, this is an attempt to summarise those 9 1/2 weeks in a way that might be useful to other parents about to embark on a similar journey.
For most parents-to-be, the expectation is of a natural child-birth after some 40 weeks of pregnancy – give or take a week or so. As parents of twins, we knew our two would probably arrive 2 or 3 weeks earlier than this, which for us would hopefully mean just in time for Christmas. Yet from around week 23, with the start of intermittent bleeding and water-loss, these expectations were about to be shattered.
Fortunately, our twins managed to hold out for a further 5 weeks before our little kung-fu-girl (all through pregnancy she had been the active one) managed to kick a hole clean through her amniotic sack. At this point, my wife was admitted to hospital and, after 4 days of observation and foetal-heart-monitoring, the decision was made to deliver via emergency Caesarian section. Our experience of this event and our first reflections on what might lie ahead is recounted here.
And so began the long journey home.
In the above-mentioned post, trying to capture how we felt 4 days after the birth, I wrote, “For the parents it is a heady mix of elation, pride and anxiety.” For the following 60 days, this description remained fairly accurate, although looking back, we might now add the words: frustration, confusion and fatigue.
Just a couple of days after the C-section, my wife was discharged to return home with me, while our babies struggled for their little lives in incubators at the NICU. This was by far the most heart-rending experience my wife and I had ever been through. Looking back she describes it thus:
It felt as though a piece of my heart had been ripped out and split in two, one piece beating in each of these tiny bodies. Each day, as I walked past the cafeteria and shop, seeing all the “New Baby Boy / New Baby Girl” balloons and other gifts, what’s left of that heart sank, wondering if I would ever be able to celebrate this birth like a normal mother. At that time, I couldn’t even hold them.
Certainly for the first week, while her body was recovering from the shock of major surgery, these emotions weren’t helped by the fact that she only had stamina to visit the NICU for a few hours each day, and so for the remaining time, sitting at home, it almost felt as though nothing had really changed – that the whole thing had been a dream – that we hadn’t really just had twin babies at all. Gradually though, as she regained strength, and the nursing staff taught us how to become increasingly involved in our babies’ care, the NICU took over our lives and the reality of what was to come finally began to dawn on us.
For my wife, the day would begin around 7 am in the morning when I dropped her off at the hospital, and end around 9 pm when I brought her home. For me, since it seemed more sensible to save my paternity leave for when the twins finally came home, I would generally try to knock off work at 5 or 6pm, then spend the last few hours with them at the hospital before returning home for an early night. In spite of the physical and emotional drain of this daily routine, we believe this increased involvement in the care of our twins helped enormously in beginning to unite us as a new family.
One of the first and most important ways in which we became involved, was in the expression and feeding of breast milk. Although initially, and at various stages subsequently, this had to be supplemented with an intravenous supply of nutrients known as Total Parenteral Nutrition or TPN, the provision of milk was one of the few things my wife could do for our little ones that made her start to feel like a real mother. Indeed the whole ritual, every 3 to 4 hours, day and night, of setting up the pump, expressing for 20 to 30 minutes, and then washing and sterilizing the equipment, is not so very far from the feeding routine now – just without the crying, belching and vomiting.
Of course, since premature babies are unable to synchronise their sucking and swallowing reflexes sufficiently to breast-feed before around 34 weeks gestation, this milk had to be given via their naso-gastric (NG) tubes. This involved attaching a plunger-less syringe to the tube, holding it above the baby’s head, and allowing the milk to drip down under a combination of gravity and intestinal pressure.
Other ways in which we both got involved, were through “containment holding” (providing reassuring touch with your hands in the incubator), “doing the cares” (top-and-tail cleaning and changing within the incubator), and “Kangaroo Care” (skin-to-skin contact). Of these, the most rewarding was Kangaroo care, where you remove the baby from the incubator (though still attached via a bewildering array of wires and tubes), unbutton your shirt, and lay her against your chest. Not only is this incredibly calming for both baby and parent, helping the two of you bond, it has also been found to be extremely beneficial to the baby’s health, reducing the incidence of certain complications and even shortening the time spent in intensive care.
Even now that we are finally home, two and half months later, laying the babies tummy-down on our chest is still the most reliable way to calm and comfort them – assuming they are already fed and clean that is.
Like most parents, we began this journey with very little knowledge of what lay ahead. Besides the need to limit causes of infection, maintain body temperature, and monitor heart rate, the details and terminology of neonatal care seemed as unfamiliar as the terrain of Mars (which as it happens had just recently started to be revealed by NASA’s rover, Curiosity).
But as we spent more and more time at the unit, reading the booklets provided, watching the free informational videos, and most importantly, talking to the nurses and doctors on the ward, we slowly became conversant in this strange new language – a language peppered with words and phrases such as NG-tubes, CPAP, TPN, blood gases, bilirubin levels, NEC, nil-by-mouth, de-satting, bradycardia and so on.
The sobering truth is that despite the relatively high survival rate for premature babies born, like ours, at 28 weeks gestation, there is a frightening number of things that can still go wrong, and most parents of extreme pre-term babies will experience at least some of them. This is why, no matter how much you may want them to, you will never hear a nurse or doctor tell you, “Everything will be all right.” Unlike the optimistic assurances from friends and family, the best you are likely to hear from the professionals are guarded comments such as, “They seem to be doing well today.” And so, eventually, you become like them, learning to live each day as it comes, being grateful for those that pass without complication – when your baby’s weight rises rather than falls, when their daily feed is being tolerated, and when their tiny nappies are filling with material of the right colour, firmness and quantity.
Another thing we learned, was that the only other people besides doctors and nurses, who really understood what we were going through, were other parents at the NICU. At the BWH NICU there is a parents’ lounge where you can sneak off for a quick cuppa and where you invariably end up chatting to others in more or less the same boat. Sometimes, listening to their stories, some of which had dragged on for more than twice as long as ours, we felt incredibly lucky. At other times, seeing the smiles and relief as they prepared to take their babies home, we felt our despair deepen.
For several weeks, the progress with our twins seemed at best: 3 steps forwards and 2 steps back. At worst, it was the reverse of this, and at those times we seriously wondered whether our babies would ever be coming home. On these days, no matter how expertly the nurses are caring for your child, as a parent you feel hopelessly impotent. The way my wife dealt with this was to take on as much of the nursing as she could herself.
Although experiencing fewer complications than her twin brother (apparently it’s normal for girls to do better than boys) one of the challenges for our daughter was that she was born smaller, and remained (even at the time of writing in fact) below the lowest percentile of weight for her age. At its worst, for more than a week, the poor little thing was actually losing weight, leading my wife, out of desperate maternal concern, to personally take responsibility for as many of the feeds as possible. Unfortunately, since our little son had somehow managed to get himself colonised by a potentially harmful bacteria, and thus been moved into isolation, this meant shuttling continually between two different wards all day long.
At the time of most concern over the girl’s weight, more attention was obviously given to her. But as she finally started to show gains, her brother duly picked up the anxiety baton, and began to develop signs of a particularly nasty bowel condition known as Necrotising Enteracolitis or NEC. This meant putting him back on antibiotics and stopping all NG-tube feeding (nil-by-mouth). In spite of this, his abdomen became so tight and distended, he started having difficulty breathing, requiring him to be put back on the ventilator – something he had not needed since the first few days after birth. In addition to this, since he was no longer receiving breast milk, they had to reattach IVs and cannulae to his little arms. This procedure, which can be quite hit-and-miss even for adults, appears to be doubly difficult with the tiny veins of a premature baby, making the experience extremely distressing for both the child and any parents unlucky enough to have to witness it.
However, thanks to these and other life-saving interventions from the wonderful staff at the hospital, we finally graduated through all the incremental stages (each with its own ward) of the NICU, and after some 6 weeks, were moved out into transitional care (TC).
In TC, although still monitored by nurses and doctors, the mother returns to live in the hospital with the babies until breast feeding is fully established and the child is big enough to regulate his own temperature. Typically at this stage, the NG Tubes are removed, together with all monitors and other encumbrances. As an added bonus, thanks to our son’s (apparently benign) bacterial colonisation, my wife and twins were given their own room, rather than having to share a ward with other nascent young families.
The advantage of TC is that it prepares the mother for life with her babies, yet without any of the house chores (although of course this is what hubbies are for;). The disadvantages are the food (sufficient to survive, but not exactly home cooking), and the difficulty of sleeping with all the inevitable disturbances of a busy hospital.
The only other challenge of TC, is that you don’t know when it will end. In our case, we were waiting for our daughter to reach the magical weight of 1700g, but with her daily gain so variable, we had no clue how long this would take. If I’d had a pound for every time well-meaning friends of family would ask, “So when will they be home?” We might already have enough saved for their university education:)
However, after 3 weeks of transitional care, a full 65 days after the birth, our little family was finally free to come home – just in time for Christmas. 🙂