So close to losing everything

The LAP forum had a thread running on “the hardest part of your NICU journey”. It made me think back to the long days of CPAP and desats (very tedious) and trying to establish breastfeeding (very stressful), and before that to the day I was discharged from hospital, leaving my beautiful, fragile little daughter behind in a humidicrib. It coincided with my “baby blues” day and I was more or less inconsolable, bursting into tears at the slightest thought of my baby. My husband couldn’t get me back to the NICU fast enough, he was so worried about me.

However, the single worst aspect of the entire journey, the part I would least want to go through again, was the evening I was admitted to hospital. It was the moment when they told me I might be having a baby within hours, when (knowing nothing about premature babies) I believed she was coming too early and would surely die, and my wonderful husband was away overseas, knowing nothing about what was taking place, and he could not comfort me as I lay strapped to the monitors, shaking and frightened.

Thank goodness for the miracles of modern medicine, for the drugs and the machines and the caring and technical skills of doctors and nurses, and (something we take for granted in Australia today) easy access to a clean, well equipped hospital where they have lots of experience in dealing with premature babies.

My grandmother went through this personal hell. No miracles. No baby.

Café Finisterre

Corrected age: 5 months, 1 week
Weight: 5.165kg
Diet: breastmilk, formula, the merest taste of solids (potato and sweet potato)

Monday morning the Child Health Centre is open for anyone to weigh their baby, so I try to hike up there every week and see how Talia is progressing. She has been very slow to gain weight since leaving hospital, which has caused me a lot of stress and contributed to a bout of postnatal depression. I was so keen to breastfeed exclusively and it was a great disappointment to find that I am a “low-flow” mother and barely able to produce enough milk to keep my baby alive. Fortunately things have improved for both of us since I introduced formula, and now I am still breastfeeding “for medicinal purposes” but without the stress of knowing it is Talia’s only source of food.

I started Talia on “solids” (which are anything but solid!) a couple of weeks ago and have tried Farex, pear, sweet potato and potato. At first she just screwed up her face and wouldn’t have a bar of either farex and pear (”Eat it yourself, Mum!”) but then she seemed to grasp the idea and opened wide as I spooned in a mix of milk and mashed potato. Unfortunately, as fast as it went in, she pushed it with her tongue - straight back out again. I don’t know that she actually swallowed any of it. So I am going to wait for another week or so and see if the tongue reflex goes away.

PDA (Patent ductus arteriosus) and the premature baby

What is it?

When a baby is growing in the womb, it receives oxygen via the umbilical cord from the placenta. The ductus arteriosus (DA) is a naturally occurring “short cut” between two major blood vessels coming out of different sides of the baby’s heart. It allows blood in the pulmonary artery (which leads to the lungs) to bypass the baby’s lungs, which are not yet functioning, and flow directly into the aorta, which sends the blood to other parts of the body, and also back out to the placenta for re-oxygenation.

After a baby is born and starts breathing, its lungs expand and blood flows into them. The short cut is no longer required and the lungs give out a hormone which constricts the duct, and it usually closes completely within days or weeks of the birth.

PDA, patent (persistent) ductus arteriosus, occurs when the duct fails to close after the baby is born.

Why does it occur?

PDA is common in premature children because their heart and lungs are underdeveloped and they are not able to produce sufficient levels of the hormone to close the DA.

Why is it a problem?

If the ductus fails to close, blood flows from the high-pressure aorta into the lower-pressure pulmonary artery (the reverse of the flow in the womb) and increases the amount of blood flowing into the lungs. As a result of the increased workload on the heart and lungs, the baby may be breathless and tired and show poor weight gain. In premature babies, PDA can complicate respiratory problems.

How is it treated?

Small PDAs may not require treatment or may close without treatment. In premature babies, an aspirin-type drug called indomethacin is often given. If a PDA does not respond to medication, surgery may be needed.

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This is one of a series of articles I’ve written for the L’il Aussie Prems newsletter under the heading of Premmie Health. Read my disclaimer here.