A new booklet aims to help parents understand their premature babies. Angie Mezzetti reports.
They like warmth. They like the quiet. They hate the sound of sellotape tearing. Clanging bin lids are a definite no no.
"Kangarooing" is good and so is a solid surface to push their tiny feet and back against. Stroking is not always welcome but gentle containment holding around their tiny bodies is comforting.
They may like the soft sound of a mother or father's voice at certain times, but the radio is definitely not a good idea.
Learning to read the signals and responding to them in the right way not only helps these tiny babies but empowers the mothers and fathers who may feel totally swamped and superfluous in the high-tech environment of a special care baby unit.
Dr John Murphy, neonatologist at the Holles Street unit, says one woman enlightened him on the need for a greater, more inclusive role for the mother when she explained how she felt lost amidst all the hardware in the unit.
"She told me she felt the staff owned the baby and that she was out of the loop with nothing to add."
After that, the neonatal unit appointed a psychologist and, following techniques devised by Prof Als in the Children's Hospital Boston, they came up with a number of ideas to improve the environment in the ward for both mother and baby. They also devised this booklet to educate and inform mothers and fathers on the very distinctive needs of pre-term babies.
Baby Theo's mother, Mary McCaughey, says that when she heard his first weak cry it was extraordinary and that her three and a half weeks of bed rest in the hospital unable to move were all worthwhile.
"It's very important for parents to have as much information as possible", Mary says, "because you may have hard decisions to make.
"There is a conflict between wanting to comfort them but yet not wanting to upset them. You have to put your faith in the doctors."
Her baby was born at 26 weeks and she could not hold him for six weeks and, as a parent, she says, one thing came home to her. "You have to be most rational when you are at your most emotional."
Dr Murphy says: "This booklet brings the mother back into the frame. We show mom how to put her hands round to contain the baby and how to read communication signs - like when the eyes are open is the time to move in."
The "please talk with me or play with me" signals are when breathing is regular, limbs are relaxed and slightly bent and the mouth is open in an attentive manner.
"Time out" signs would include when limbs stiffen, eyes close and fingers splay in a "talk to the hand cause the face ain't listening" type gesture.
At certain times under careful supervision of nursing staff, mother may be able to tuck baby close to her chest, often skin to skin, in what is called a "kangaroo cuddle". This can last from 20 minutes to several hours and the technique can aid sleep and weight gain and reduce baby's stress levels.
Stress and pain management in newborn premature babies is very important, according to the unit's developmental psychologist Marie Slevin.
"We have to look at the effect of intensive care on baby as a little person in the long term," she says. "A baby born at 24 or 26 weeks is effectively spending the third trimester of the pregnancy in an incubator and this is a time for rapid brain development. They need rest and sleep to repair and recover."
To maximise this quiet time, they used cameras and monitors to research the things that were causing stress to the babies in the unit.
"We discovered things like the radio bothered them because, unlike full-term babies or you and I, they couldn't shut it out when they wanted to sleep. Other noises too upset them like unpacking supplies, blood test tapping, rattling trolleys or high heels and floor vacuuming. Alarms sitting on top of an incubator sent vibrations through it."
They now group all medical and nursing care procedures together. Nappy changing, suctioning the airways and temperature checking are all done at the same time to leave baby with a longer period of rest.
A quiet time is observed every afternoon when the blinds come down and there is no handling unless in an emergency. Sellotape and stilettos are banned, sweeping has replaced the hoover and voices are hushed. "So many changes cost nothing and improve the repair and recovery for baby," says Slevin.
Approximately 10 per cent of all babies will spend some time in a neonatal unit. "We are seeing more pre-term babies for several reasons," says Dr Murphy, "mainly because we can do more for them but also because of the increase in fertility treatment which has led to more multiple births."
Fifty per cent of twin births end up in special care units. "Antenatal diagnosis means we can now opt to pre-deliver," he says, where baby is in danger.
Going home time can be a daunting experience for the mother whose baby may have been in the unit for three or four months. The "I'm not ready" fear is a common one among mothers and fathers of premature babies, according to Dr Murphy.
"They look at the little scrap that weighs maybe four pounds and wonder how they are going to cope," he says, even parents who have previously had normal full-term children.
"The baby will likely stay with us until close to their original due date and they are usually ready to go home when they can finish a feed in 20 minutes and don't need medical intervention."
There is a special discharge planning nurse attached to the neonatal unit to assure mothers and help with all the special requirements these babies may need.
The pre-terms are brought back for regular check-ups and at two years of age all are given a formal assessment. "The biggest challenge is with cognitive development, on the other hand we have had some extremely bright sparks - very bright children coming back," says Dr Murphy.
At the launch of the booklet, Minister for Health Mary Harney joked that despite appearances she was the smallest baby born to her family.
Mary McCaughey says Theo's three older sisters are looking forward to the day they can have him at home. "Having all the information you need to know about a premature baby makes it easier to face the challenges on the road ahead. We know we are in this for the long haul."
Information about this booklet is available from Cow & Gate special telephone line 1800 570 570 in the Republic or Northern Ireland 0800 243 025.