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Taking Your Premature Baby Home: What to Expect
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Taking Your Premature Baby Home: What to Expect

by BabyYumYum November 13, 2022
written by BabyYumYum

Taking your premature baby home: what to expect and watch out for. After spending time in the NICU, bringing your premature baby home is a huge milestone, but it can also feel overwhelming. As parents, it’s natural to feel unsure about how to care for a baby who requires special attention. From monitoring feeding schedules to understanding signs of distress, you’ll need to stay vigilant. This post will guide you through what to expect during this transition and highlight important things to watch out for to ensure your baby's safety and comfort.

If your baby was born prematurely, you may greet your D-Day, or day of discharge, with an uncomfortable mixture of joy and trepidation. You’re finally able to take your baby home, but you’re also leaving the safety and security of 24-hour medical care. Remember first and foremost that your baby will not be discharged unless your doctors and nurses believe that your baby is absolutely ready for this step. Here’s how to care for a premature baby at home.

Health challenges facing premature babies

Any baby born before 37 weeks gestation is considered to be premature, and they can often have serious health challenges, including issues with temperature regulation, feeding, apnoea (irregular breathing) and the need for oxygen supplementation, or jaundice. For these reasons, your “preemie” may spend weeks or even months in the Neonatal Intensive Care Unit (NICU). Thankfully, with medical support and growth, immature organs can eventually recover and function independently in most cases.

Many premature babies who are discharged no longer need specialised medical care, but they will need supportive care once they’re home. For some, medical needs will continue even once they have been allowed to go home. Your discharge will most likely coincide with a meeting to discuss a follow-up medical care plan that includes visits to a paediatrician and any specialists that may be involved. Take charge, ask questions, make notes and diarise your appointments so that you feel as though you are in full control once again of this little life.

YOU MIGHT ALSO LIKE: 14 survival tips for parents with babies in the NICU

Basic requirements for discharge for premature babies & care at home

Before being discharged, your baby must meet at least the following basic requirements:

  1. Maintain their body temperature in an open crib for 24 to 48 hours, depending on how premature your baby was at birth.
  2. Take all feeds by bottle or breast, without supplemental feedings.
  3. Be gaining weight steadily.

Some babies reach this point two to four weeks before their original due date. However, babies who have had surgery, those who have needed long-term assistance with breathing, or those who are born with special needs may stay in NICU way beyond their scheduled due date.

“Many preemies may need to see early intervention specialists to ensure that they are meeting their milestones.”

Medical needs of premature babies after discharge

Your baby probably won’t need specialised medical care after discharge, but will require regular medical care and evaluation to see that they are growing and developing well. However, there are some common medical challenges that many premature babies face in the long term.

  • Apnoea: Many premature babies have episodes of apnoea, or pauses in breathing, that improve as the baby gets older. Your baby will not be discharged from hospital if this apnoea causes a slow heart rate or a change in colour. However, they may be sent home with a breathing monitor because the apnoea is minor and only requires stimulation to help your baby breathe again. If this is the case, it would be a good idea to invest in a breathing monitor and also to take a course in infant CPR, to ensure you’re well prepared.
  • Other breathing problems: Premature babies often have breathing difficulties and may need supplemental oxygen. Sometimes this need persists even after discharge and your baby may then be sent home with equipment to administer oxygen.
  • Infections: Your baby’s immune system may not develop fully for a longer-than-average period of time. Be vigilant when it comes to keeping them safe from possible infections, for example, from other people or by going out in public places. 
  • Developmental needs: Many preemies may need to see early intervention specialists to ensure that they are meeting their milestones. Remember, if a delay is picked up early, with some help, your baby can catch up quickly.

ALSO READ: Premature Baby: Complications And What Parents Should Know

Caring for your premature baby at home

  1. It is best if you plan for a few quiet weeks at home. Your baby’s immune system is still developing, so you need to ensure that visits outside the home are limited for the first few weeks to doctors’ appointments only, especially if you are discharged in the winter months.
  2. There are often viruses floating around doctors’ offices, so organise to wait in an examination room instead of the main waiting room when you go for your appointments. Most doctors will recommend that you don’t visit public places during the first few weeks and that you limit your home visitors. Anyone who is ill should not visit; there should be no smoking inside your home, and visitors should wash their hands before holding your baby.
  3. Feeding and sleeping are especially important to your baby’s health and they might sleep more often than a full-term baby, but for shorter periods at a time. Your preemie will need 8 to 10 feeds per day, with no more than four hours between feeds. Six to eight wet nappies a day are a good indication that your baby is getting enough breast milk or formula.

kangaroo care - baby yum yum

What is kangaroo care?

Kangaroo care is a way of holding a baby that maximises skin-to-skin contact between parent and child. Medical professionals strongly advise parents to incorporate as much skin-to-skin time with your baby, and this is particularly beneficial for preemies. Studies have shown that the benefits of kangaroo care include:

  • increases bonding between the parent and child;
  • it can help stabilise your baby’s heart rate and regulate their breathing;
  • improves your baby’s oxygen saturation levels and regulates their body temperature;
  • boosts your breast milk supply;
  • improving a premature baby’s overall health;
  • may have a positive impact on your baby’s brain development.

DON’T MISS: Your newborn’s natural reflexes & what they mean

Ensure that you have warmed the room well. Remove all of your baby’s clothing, except for the nappy, and lay them on your bare chest with their head to the side so you’re able to stimulate all of their senses. Don’t be surprised if your little one nods off – this is incredibly soothing for them! Remember to take care of yourself also so that you can take care of your tiny baby!

The Chris Hani Baragwanath hospital has started a Kangaroo Mother Care Unit in ward 40. The unit aims to also start a self-help group for mothers of these premature babies. Nursing staff, allied medical disciplines and mothers who have had premature babies, will be involved. 

You can find out more about this initiative here.

FAQS: Taking your premature baby home: what to expect and watch out for

When is my premature baby ready to come home?

Your baby is usually ready to go home when they can:

  • Maintain their body temperature
  • Breathe independently
  • Feed well and gain weight
  • Have stable vital signs

This is assessed by the neonatal team before discharge.

What should I expect in the early days at home?

Expect a period of adjustment. Premature babies may still need frequent feeds, extra warmth and quiet environments. You’ll be building confidence as you get to know your baby’s cues and needs.

Do I need special equipment at home?

You may need:

  • A thermometer to check body temperature
  • Preemie-sized nappies and clothing
  • Feeding equipment, if bottle or tube feeding continues
  • A car seat tested and approved for low-birth-weight infants

Your hospital may advise on any specific needs.

How do I know if my baby is feeding enough?

Track wet nappies, weight gain and alertness. Premature babies may feed more slowly or need smaller, more frequent feeds. Your paediatrician or health visitor will monitor progress.

Should I be concerned about infections?

Yes. Preemies have weaker immune systems, so minimise visitors, practise good hand hygiene and avoid crowded places. Notify your GP if your baby has a fever, trouble breathing or feeding difficulties.

Can I take my baby outside?

Yes but take precautions. Avoid extreme weather, keep your baby warm, and limit exposure to strangers. Short, gentle outings are fine if your baby is healthy and your healthcare team agrees.

Will my baby sleep differently from a full-term baby?

Premature babies often sleep more but wake more frequently. Safe sleep guidelines still apply: place your baby on their back in a cot, with no soft bedding, and in the same room as you for at least 6 months.

What follow-up care will my baby need?

Most premature babies need regular follow-ups with:

  • A paediatrician
  • A developmental specialist
  • Hearing and vision screening

This helps track growth, motor skills, and overall health.

Are developmental delays common in premature babies?

Some delays are normal, especially in motor skills or feeding. Use your baby’s corrected age (based on due date) when assessing milestones, and speak to your health visitor about any concerns.

How can I support my baby’s development?

Provide gentle stimulation like soft talking, skin-to-skin contact and tummy time (when supervised and awake). Avoid overstimulation and follow your baby’s cues for rest.

How can I care for myself during this time?

You’ve been through a lot. Accept help, rest when you can and talk openly about your emotions. It’s okay to feel overwhelmed. If you’re struggling, speak to your GP or a counsellor.

 

 

Disclaimer: This content is for general information and does not replace medical advice. Always consult your paediatrician or neonatal care team for personalised guidance based on your baby’s specific needs.

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Baby Yum Yum - 14 survival tips for parents with babies in the NICU
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Expert 14 survival tips for parents with babies in the NICU

by Nicci Coertze, professional doula November 13, 2022
written by Nicci Coertze, professional doula

“At birth, Christopher had no heartbeat, he was not breathing, and his limp, blue body did not respond to his airway being suctioned. He looked completely lifeless. But then the neonatologist and nurses from the NICU took over and it wasn’t long before I could see Christopher’s chest moving up and down and he was transferred to the NICU for expert care. The time we spent in the NICU was not easy and I wish I had been better prepared for the whole ordeal.” Kim*

The Neonatal Intensive Care Unit (NICU) is a place no parent wishes to see their baby in, but sometimes this is necessary due to a preterm birth or an illness. Here are some practical tips to help you navigate the NICU.

  1. Participate in your baby’s care and if you want more details on his condition or medical problems, speak to the nurses in the NICU – they are there to help. Also, feel free to ask your baby’s nurse to clarify any confusing medical terminology for you. Says Hannah, mother of Riley, born at 28 weeks of gestation: “When Riley was in the NICU, it was often the nurses who helped me understand the doctor’s comments!”
  1. Hold your baby If they aren’t stable enough to be held yet, you can talk or sing softly to them. Try not to be concerned with other babies around you. Keep your mind on your own little miracle.

“There are going to be cute moments and just because your baby is in the NICU, it doesn’t mean you don’t get to cherish those moments.”

  1. Bear in mind that your other children may feel left out or have very real fears of not seeing their sibling again. Although difficult, try to make time to do something with them that you know they will enjoy. Reassure them frequently that you love them, and you and your partner have enough love for all your children. They should be told that their new sibling loves them too.Tricia explains, “My sister helped my little boy of four draw a picture for his sister and helped him to ‘write’ her a letter, which he proudly gave to me. We also brought him a soft toy from hospital and told him his sister sent it. His beaming smile told me that this was a wonderful way to allow him to work through the emotions of Elle being in the NICU.”
  1. It can be challenging to keep your family and friends up to date on your baby’s progress. Let a close friend or family member help you. Try calling or texting just one ‘spokesperson’ who can update everyone for you. Don’t feel guilty for not answering a call or text. Hannah explains, “My mom started a WhatsApp group where only the group admin could post to keep everyone informed about Riley’s condition. This really helped me so much and our loved ones really appreciated the updates!”
  1. Keeping a journal is always a good idea. Not just to write down your feelings, but also to write down questions and answers or even to take notes of your baby’s behaviour, likes and dislikes, and feeding times and volumes.
  1. You and your partner are not always going to have the same feelings about your baby in the NICU. This can be a difficult period in your relationship and it helps to remind yourself that your partner is just as worried as you are. You may not share your partner’s feelings or understand their reactions but by accepting each other’s differences, you provide the kind of support and understanding that can promote healing and help keep the relationship strong. Open communication is of critical importance during this time.
  1. Allow your friends and family to help you! Have a quick coffee break with a friend in the hospital cafeteria or a heart-to-heart conversation on the phone with a family member like your mother. Your friends and family want to help you – let them. If they ask what they can do, ask for a meal to heat up for the family to take that burden off your shoulders.
  1. According to the American Academy of Pediatrics (AAP) breast milk has many advantages for premature babies, as it contains immunities from the mother and many important nutrients. The AAP says breastfeeding your baby may result in a shorter hospital stay so try to offer breast milk to your baby if you can. Tricia says that although it was difficult in the beginning, breastfeeding Elle made a huge difference. “It made me feel part of her and made me realise that she does need me!” 
  1. Mementoes are important! Your baby will get bigger and stronger and you will forget how tiny they were if you don’t make memories. You might want a hospital bracelet, hat or blood pressure cuff. Photos are also very important! Take a lot of pictures (if it is allowed) of your baby. There are going to be cute moments and just because your baby is in the NICU, it doesn’t mean you don’t get to cherish those moments. (Remember not to use your flash when your baby’s eyes are open.) 
  1. Self-care for you and your partner is extremely important. Eat well and get as much rest as possible in this situation – and drink lots of water. Your baby needs you to be well! Take turns to eat or sleep – some hospitals only allow one parent with the baby, so utilise this time for self-care.
  1. Pay close attention to your health and the health of other visitors. Your baby needs to be protected from contagious illnesses. It’s okay to limit visits by friends and family members, or not allow them at all.
  1. Be respectful to other parents in the NICU – they are also going through a very hard time. Don’t ask them obtrusive questions about their baby’s condition.
  1. You will experience many different feelings when your baby is in the NICU. Feelings such as shock, disbelief, anger, guilt and depression are normal to have, but please speak to a counsellor if you are struggling with your emotions. Hannah says, “Sometimes just talking about it to someone who listens already makes a huge difference.” 
  1. Take each day as it comes. Your baby’s NICU stay will be a rollercoaster ride with a lot of ups and downs. There will likely be good days and bad days. Kim says that it is very helpful to try to focus on and celebrate your baby’s small accomplishments such as weight gain, increase in feedings, maintaining body temperature, etc. Embracing all the little victories can help make this journey a bit more bearable.

Having a baby in the NICU is tough. Try to face each day as it comes and remember that everyone in the NICU is there to help your baby get better.

MUST READ: Prematurity Awareness Month: A Mother Shares How to Support NICU Moms

Other sources:

http://www.stanfordchildrens.org – Accessed on 20 October 2018
https://www.who.int – Accessed on 22 October 2018

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Too soon: Prematurity and early arrivals
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November 13, 2022 0 comments
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Too soon: premature babies often face big challenges—but with love, care and medical support, these tiny fighters can grow stronger every day.
ExpertsBabies

Expert Too Soon: What You Should Know About Premature Babies

by Munchkins, parent coaching November 13, 2022
written by Munchkins, parent coaching

They arrive early, often tiny and fragile, and their journey begins before many parents are ready. Too soon: premature babies face hurdles that can feel overwhelming, but they also show resilience that defies the odds. From the NICU to coming home, each step is a mix of fear, hope and celebration. If you're navigating this path, know that you're not alone—this guide is here to help you understand and support your little one. Written by Munchkins, parent coaching.

Having a prem is not something most mothers expect when they are expecting. In most cases, there is not merely a premature baby struggling to survive, but also “premature” parents who feel unprepared for the sudden and overwhelming challenges of having a baby – and a highly fragile one needing specialised care.

I have spoken to several mothers who had prems. Following is a summary of their stories of bravery amid the ordeal.

1. On the big challenges that come with such tiny humans

Emotionally, the mothers agreed that having a premature baby is an experience that knocks you off your feet – the stress of fighting for your child’s life and seeing their defenceless, underdeveloped bodies; the shock of an unplanned (mostly surgical) birth; the heart-breaking separation from your baby as they receive medical care – even leaving the hospital without them; the many disappointments as the ideals you had do not realise … And all this on top of the standard postpartum “baby blues”.

Physically, a new mother’s body is sore and tired, but there is no chance for a mother with a prem to recuperate as she is far from the most significant patient on the scene. The continued sleep deprivation they experienced (which is often worse in the case of a prem), exhausted them even further. An additional challenge is expressing milk every couple of hours – even through the night – for the ones who chose to breastfeed.

MUST READ: Prematurity Awareness Month: A Mother Shares How to Support NICU Moms

Premature baby baby yum yum - BabyYumYum

On the practical side, the moms felt incompetent and scared to care for such a minute, frail little body who had difficulty breathing and feeding. Where there were older siblings who also needed attention, the challenges were even harder – especially feigning positivity while spending time with them. One mom stayed far away from a hospital, which was a massive logistical challenge for the family, and it also resulted in a great deal of extra expenses.

2. On what kept them going

Most of the mothers honoured the amazing nurses who work in NICU wards. Hats off to these angels! Furthermore, support from family and friends was vital. One mentioned that she had mentors who helped her keep perspective.

“Celebrate all the small victories: every gram gained, every tube disconnected.”

Faith in God, prayer and worship were also essential. Being able to witness small miracles in their babies’ development every day was helpful in staying positive. One mom said the information she gathered (from doctors and books) assisted her to cope. And of course, a mother’s love for her child would get her through any difficulty.

3. On the little things they’ll always treasure

Although bittersweet, holding their premature babies in the kangaroo care position for the first time was an extraordinary experience, said many mothers. One of them remembered her baby’s soft moaning the first time she had touched him (when she had still not been able to hold him) as if he had recognised her voice.

The quiet times in the hospital with just mom and baby stood out as valuable bonding and slowing-down moments. Watching their little ones grow stronger and reaching each milestone (however “late”) was very special.

Some parents even felt they had “secret access to the womb” by seeing certain developments, unlike with full-term babies – like witnessing eyebrows appear. The bonds the mothers formed in the NICU with others going through the same trial were beautiful gems amid the sadness and stress.

4. On the advice they have for other prem parents

You absolutely have to accept help – now is the time to be humble. Ask all the questions you need to ask; cry all you need to cry: this was not the plan. Choose to take away something from the experience that can change you for the better. Celebrate all the small victories: every gram gained, every tube disconnected. Savour the special moments and take many photos that can later serve as a testimony for the miracle of your child’s life. And pray without ceasing!

To all the parents out there who went through or are currently facing the turbulent and tiring storm of caring for someone who should have still been a foetus protected by a womb – you are true champions!

Finding your feet at home with a prem and possibly other children to care for can be very tough. Baby Yum Yum expert Celeste Rushby, who also happens to be a qualified occupational therapist, can rightly testify to this as she had three prems of her own in less than three years!

Says Celeste: “I understand. I’ve been there! I am using my experience, my specialised training, and my heart for parents of young babies – especially preemies – to support, guide and educate; and above all, to empower. There is light at the end of the tunnel. A bright and incredibly beautiful light. And I just love helping parents to find it.”

You can read more of her story here.

The original version of this article can be found on the website of our partner, Munchkins.

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Premature Baby: Complications And What Parents Should Know
BabiesExpertsNewborn Babies

Expert Premature Baby: Complications And What Parents Should Know

by Dr Maraschin, expert paediatrician November 12, 2022
written by Dr Maraschin, expert paediatrician

Every premature birth comes with a wave of emotions—relief, worry, hope and fear all wrapped together. Premature baby: the complications they face and how parents can help is a topic that hits close to home for many families. These tiny fighters may face big hurdles, but your love, presence and advocacy play a powerful role in their journey. Let’s explore what they’re up against—and how you can support them every step of the way. Written by Dr Maraschin, expert paediatrician.

Premature babies are those born before 37 weeks of pregnancy. The earlier a baby is born, the greater chance there is of developing complications associated with prematurity. In my experience, it is not only the baby that is premature. Mom and Dad become parents prematurely as well.

The experience is very difficult for all concerned. While modern medicine has substantially improved the long-term outcome of premature babies, the immediate medical concerns, trauma to the baby and to the parents, and the often-unexpected medical costs associated with a preterm birth elevates the stress for all concerned.

Just this week I was visited by one of my micro-prems (extremely low birth weight – in this case just 800g). For purposes of this article, I will call her Sarah*. She is now 16 years old and absolutely beautiful. She needed to have a copy of certain of her medical records. My staff could have assisted her, but she chose to wait to say hello to me. What a moment for me as a paediatrician!

There are some babies for whom you spend months fighting. Long hours, working day and night and micro-managing their very existence – and then the day comes when they go home. It may be that you don’t see them for follow-ups, and you wonder how they are and if the prematurity or medical treatment had any significant long-term effects.

“The role and level of involvement of the parents is of utmost importance for both the physical and psychological outcome of a premature baby.”

Having Sarah stand up and give me the biggest hug was a moment for me to treasure. Looking at her at 16 made all the struggles worthwhile. And boy, oh boy did we have struggles! This little Sarah threw the book at me in terms of complications associated with prematurity.

Bear in mind that not all premature babies will go through all of the complications and will be home with Mom and Dad not too long after birth. For others, the struggles are prolonged. Dealing with the complications is the responsibility of the medical team. Over and above this, the role and level of involvement of the parents is of utmost importance for both the physical and psychological outcome of a premature baby.

ALSO READ: Antibiotics in children – when they can do more harm than good

How do we categorise premature babies?

  • Late preterm, born between 34 and 36 completed weeks of pregnancy. The average weight being between 2.5kg and 2.8kg.
  • Moderately preterm, born between 32 and 34 weeks of pregnancy. The average weight being between 1.8kg and 2.4kg.
  • Very preterm, born at less than 32 weeks of pregnancy. The average weight being between 1.1kg and 1.4kg.
  • Extremely preterm, born at or before 25 weeks of pregnancy. The average weight being 650g or less.

Most premature births occur in the late preterm stage, which makes their care much easier as they experience far fewer complications.

What kinds of complications can occur and what would the necessary medical treatment be?

There are a number of issues the paediatrician will be concerned with during an admission to Neonatal ICU. These include feeding issues, apnoea, jaundice, metabolic problems and then more serious complications. For our purposes here, I will only discuss those that are more serious and not easily understood by parents.

  • Temperature control: Since premature babies have very little body fat, they struggle to maintain their body temperature and this may lead to hypothermia. A baby may experience breathing problems and low blood sugar levels as a result of hypothermia. Under these circumstances, the baby would need to be placed in an incubator or under a warmer.
  • Lung problems: Respiratory distress syndrome may develop as a result of the baby lacking surfactant. Surfactant is a fluid secreted by the cells in the lungs which allow the lungs to expand. These days a paediatrician may administer surfactant to the premature baby thus substantially reducing the risk of respiratory distress syndrome. A baby with respiratory distress syndrome would usually require ventilation to help them breathe normally.
  • Heart problems: Patent ductus arteriosus (PDA) occurs when there is an ongoing opening between two vessels emanating from the heart known as the aorta and pulmonary artery. This condition usually resolves on its own but treatment is required if it continues. The treatment may include a medication administered via a drip (intravenously), good nutrition and, if all else fails, the baby may require surgery. It is really important that a PDA is addressed, as it can lead to respiratory failure or heart failure. Low blood pressure is another problem for premature babies. Usually, the paediatrician would manage the blood pressure with fluids and medicines.
  • Gastrointestinal problems: A condition known as necrotising enterocolitis (NEC) may develop as a result of a premature bowel. NEC is an infection which attacks and causes inflammation in part of the intestine. Typically, the baby would struggle with feeding, develop a bloated tummy and vomit. It is a life-threatening condition that requires urgent antibiotic treatment and may result in surgery to remove the damaged parts of the bowel.
  • Brain bleeds: A baby’s blood vessels grow stronger in the last 10 weeks of pregnancy. This means that extremely premature babies are at risk of a brain haemorrhage simply because their blood vessels are fragile. Mild bleeds resolve on their own and cause no long-term damage, but larger bleeds may cause permanent damage. The bleed is known as an intraventricular haemorrhage. In extreme cases, the baby may require surgery.

CHECK OUT: Prematurity Awareness Month: A Mother Shares How to Support NICU Moms

premature baby complications - BabyYumYum

Role of the mother in the care of her premature baby

I have treated enough premature babies to know that mothers often carry huge guilt around having a premature baby. It is traumatic and far from the ideal picture painted in the media and dreamt about by new parents.

The clinical interference by medical staff to attend to your premature baby may leave you feeling robbed of normal interaction with your baby and useless in the situation. The truth is that your role is vital to the overall well-being of your baby and there are certainly things that you can do for your baby during the NICU stay.

  • Breast milk: A premature baby may not be strong enough to suck from the breast, but breast milk is still of utmost importance. The colostrum that is produced in the first few days helps to seal the baby’s gut and lowers the risk of infection. Breast milk itself contains all that is required for your baby’s health and plays a huge role in preventing NEC.

The nursing staff and your husband can certainly help in ensuring the colostrum gets to your baby as soon as possible even if you are unable to do so. Breast pumps are available for you to use to extract the milk, which will then be given to your baby via a nasogastric tube until such time as your baby is able to feed from the breast.

  • Kangaroo care: This is the practice of holding your baby skin-to-skin against your bare chest. This form of care helps to regulate the baby physiologically. A baby cared for this way shows more stability in blood pressure and temperature regulation, breathing and heart rate. In addition, kangaroo care stimulates and increases breastmilk and bonding for the mother and immunity, sleep, cognitive development and motor development in the baby.
  • Talk to your baby: A fascinating study was done to test the effects of a mother talking to the baby in a NICU setting. The findings were published in the American Journal of Paediatrics. Not only were the babies able to settle easier after painful procedures, but the talking also encouraged the baby to make eye contact and to vocalise its own sounds. Beyond this, the study showed that the cognitive and language ability of babies spoken to by their parents while in NICU was substantially increased when tested at 18 months of age.

ALSO READ: All your questions about newborn babies answered by a paediatrician

Role of the father in the care of his premature baby

Fathers often report feeling isolated and excluded from the care of their premature baby. This may be particularly so if the baby is rushed from the delivery room and straight to a NICU. Anger and frustration are common emotions.

Traditionally, men want to care for and protect their families but the emergency, unforeseen occurrences associated with a premature birth certainly overrule this natural instinct of a father, unless he gets involved immediately.

There is a huge role for fathers to play. Mothers, in a premature birth situation, are often ill or at risk themselves. The onus is placed on the father to take the reins in the parental role and the studies show that the outcome for the family as a whole is extremely positive.

  • Breastfeeding: We have established that breastfeeding is vital to the well-being of a baby. Breast milk plays a role in preventing NEC in the premature baby and there is a significant association between the quantity of human milk received during a hospital stay and the neuro-behavioural development at 18 months and at 30 months.

Mothers included in a study on the success of breastfeeding were unanimous in their opinion that the attitude of their partner to the breastfeeding far outweighed the importance of medical staff. This very interesting study, published in the British Medical Journal for Paediatrics, concluded that the chances of successful breastfeeding and the duration of breastfeeding was highly linked to the involvement of the father.

Since breast milk is usually expressed and given via a nasogastric tube in very premature babies, fathers are able to take the role of giving the feeds to the baby. Fathers also often get involved in monitoring the amount and frequency of feeds.

  • Kangaroo care: Fathers play a vital role in the Kangaroo care (skin to skin) of their baby. The positive effects on the baby are the same as for when mothers hold their baby. Kangaroo care increases the father’s ability to bond with his baby and this cannot be ignored. Since the mother may not be in a position to care for her preterm baby, fathers often take up this role and I would certainly encourage it. Kangaroo care is generally encouraged for about an hour a day.
  • Talking to the baby: Again, the aforementioned benefits for mothers speaking to their babies apply equally to the father.
  • Emotional support of the family: Mothers of preterm babies are more likely to develop postpartum depression. This interferes with the mother’s ability to respond to her baby’s subtle needs. Under these circumstances, the studies show that fathers often take over this role. Furthermore, studies have shown that the likelihood of postpartum depression is lessened when the father is intricately involved in the care of a preterm baby.

It is not always possible to predict if a baby will be born prematurely. There are factors which increase the risks such as previous premature births, smoking, infection or multiple births. Often the cause of a premature birth is not clear. Regardless, the risks and trauma of such a birth are not something one is easily prepared for.

Being in a hospital with a good NICU is vital to the positive outcome of the infant. Equally important is the role of both the mother and father. With the correct support and care, your premature baby is likely to grow up beautifully and to achieve all the milestones necessary for a fully functional life.

A MUST READ: Too soon: Premature babies

BabyYumYum FAQs: Premature Baby

Why are some babies born prematurely?

Premature birth can happen for many reasons, including multiple pregnancies (twins or more), infections, chronic health conditions, or sometimes without a known cause.

How is a premature baby cared for after birth?

Most premature babies need specialised care in a neonatal intensive care unit (NICU) where they receive support with breathing, feeding, temperature regulation, and growth.

Can I hold my premature baby in the NICU?

Yes, once your baby is stable, skin-to-skin contact (also known as kangaroo care) is encouraged and beneficial for bonding and recovery.

When can my premature baby come home?

This depends on your baby’s health and development. Generally, they must be able to breathe on their own, maintain body temperature, and feed well before going home.

Will my premature baby catch up developmentally?

Many premature babies catch up by the age of 2, though some may experience delays or need additional support. Regular check-ups help track developmental milestones.

How do I feed a premature baby?

Some preterm babies start with tube feeding or expressed breast milk. As they grow stronger, they may begin breastfeeding or bottle-feeding with support from the care team.

Is breast milk important for premature babies?

Yes. Breast milk provides vital nutrients and antibodies that are especially important for premature babies. Donor milk or fortified breast milk may also be used if needed.

What are common health risks for premature babies?

Premature babies may face challenges such as breathing difficulties, jaundice, infections, or feeding issues. Most improve over time with proper care and monitoring.

How can I support my premature baby’s development at home?

Create a calm environment, follow feeding and sleeping cues, attend regular check-ups, and engage in gentle sensory play. Your healthcare team will guide you through each stage.

Will my baby need special vaccinations or treatments?

Premature babies may follow a slightly adjusted vaccination schedule and may receive extra protection against infections like RSV (respiratory syncytial virus). Always consult your doctor.

How can I cope emotionally with a premature birth?

It’s completely normal to feel anxious, overwhelmed, or sad. Talk to your healthcare team, seek support from family or counselling services, and connect with other NICU parents if you can.

Disclaimer: This information is for general guidance only and should not replace medical advice. Always consult your neonatal care team, GP, or paediatrician for personalised support and information about your premature baby’s health and development.

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Baby Yum Yum - “If you take both your babies home, it will be a miracle” – a mom’s experience of the NICU
BabiesBaby Health

A Mother’s NICU Journey: Holding onto Hope for Her Twins

by BabyYumYum September 25, 2019
written by BabyYumYum

"If you take both your babies home, it will be a miracle." Those were the words no mother ever wants to hear. For one mom, the NICU became her second home, a place filled with beeping machines, tiny incubators, and a rollercoaster of emotions she never could have prepared for. The fear of losing her babies was overwhelming, yet she held onto hope, fighting alongside them every step of the way. The journey through the Neonatal Intensive Care Unit (NICU) is one of resilience, love, and unwavering faith. In this deeply personal story, a mother shares her experience of watching her fragile newborns fight for their lives, the heartbreaking setbacks, and the small victories that gave her strength. This is a story of survival, hope, and the power of a mother’s love. Read on for Siske's NICU journey.

As soon as you find out that you’re going to have a child (or in my case, children) in NICU, both doctors and nurses will start preparing you. They will tell you that it will be a rollercoaster ride but, in all honesty, nothing can prepare you for the daunting road you are now forced to travel. This is my story of some of the highs and lows I have experienced thus far as a NICU mommy.

Our story begins long before the unexpectedly early birth, at my 12-week scan. This experience and the emotions we felt within this 40-minute appointment could be the summary of our story as a whole – both an extreme high and an extreme low.

Two things were as clear as day for the doctor who administered the ultrasound, the first being that there were twins. We should have been the happiest parents in the world, but before this had time to sink in, Dr Steyn told us there was a problem.

Baby A (Samuel) had PUVs (posterior urethral valves). In a nutshell, he was unable to drain urine from his bladder due to membranes causing blockages in his urethra. This also meant that he was unable to produce his own amniotic fluid, which in turn would mean his lungs wouldn’t be able to full develop. The doctor’s words still ring in my ears: “If you take two babies home, it will be a miracle”. She then advised us to go to a perinatologist, an obstetrician specialising in managing high-risk pregnancies.

Ultrasound of baby with full bladder in mothers womb

Samuel, his bladder filled as a result of PUVs. Image: Supplied

Dr Pistorius, the perinatologist, confirmed Samuel’s condition. This was also how we found out that our precious twins were boys as because PUV is not known to occur in females. I missed out on the opportunity to have a gender reveal, but this was the last thing I was thinking about at that time.

We had three choices: to terminate the pregnancy; to let nature take its course (meaning that if it didn’t correct itself my son would only live for a few hours after birth), or to drain Samuel’s bladder. This would be done artificially by inserting a syringe through my womb into his bladder and testing the urine to see if his kidneys were working. If so, the doctor would go in and insert a stent to drain the bladder.

“At my 24-week check-up, I mentioned to my doctor that I thought I was leaking urine. This turned out to be amniotic fluid, and just like that my check-up turned into a check-in.”

We were given a weekend to discuss our options, but it didn’t take long for us to decide. I instantly knew that I wasn’t giving up on either of my boys and as we got into the car, Marnitz my fiancé also said: “I am not ready to give up on them” – so we chose the third option.

At our following appointment with Dr Pistorius, we asked him to test our baby’s urine to determine if they would be able to insert the stent. I had to see him three times so that he could void Samuel’s bladder by inserting a needle into my uterus and into Samuel’s bladder. Each time the needle was inserted, there was the risk of spontaneous miscarriage. After the third appointment, we were told that the test results were favourable and that they would be able to insert the stent.

Ultrasound of babies almost holding hands

Samuel and Benjamin after the stent was inserted. It almost looks like they are holding hands. Image: Supplied

We were thrilled! All my troubles melted away in that moment and we had all the hope in the world. We knew that there would be risks involved (there always are), but we had faith in God and the medical team that everything would turn out for the best. The procedure went well and both the gynae and specialist told us our next goal would be to reach week 25 of pregnancy. And just like that, my relief was traded for the haunting feeling that not all was well yet.

At my 24-week check-up, I mentioned to my doctor that I thought I was leaking urine. This turned out to be amniotic fluid, and just like that my check-up turned into a check-in. My gynae escorted me to the maternity ward and I could tell from his body language that it could be something serious. As I got onto the hospital bed, I knew this would be my nest until Samuel and Benjamin made their arrival.

My gynae Dr Du Buisson tasked my husband with going home and packing a hospital bag for me and I cancelled my plans to visit family and friends in Johannesburg – I was due to have my baby shower that weekend. There was no beating around the bush, and my usual cheerful and positive self was lost in the severity of the moment. I had to calm down and be grateful that they picked up the problem before I had left for Johannesburg and that there was still time to save both Samuel and Benjamin.

Premature baby in neonatal intensive care unit

Benjamin’s first photo: 870g and 32cm. Image: Supplied

That bed felt like a prison that, in hindsight, I would’ve loved to spend more time in, even if it was just one more day. In our 26th week, Samuel went into distress, most likely due to an infection that had made its way to my uterus. I remember the doctor staring at the printout of the doppler almost hoping it would show different results, but it didn’t. We needed to go in, so that they could save the boys.

I asked the nurse to explain exactly what would happen during the C-section, as we were only due to discuss this part of birth preparation with Dr Du Buisson that weekend. We were also planning a tour to see the NICU because it was clear at that stage that we’d inevitably end up there; however, none of us thought it would be this soon. But some things you cannot choose or control, and you have to play the hand you’ve been dealt.

Premature twin in neonatal intensive care unit

Samuel’s first photo: 790g and 30.5cm. Image: Supplied

Our difficult journey didn’t end with the birth. After three months in NICU (94 days) I had only changed three nappies between my two boys and only held them both once for about five minutes each (if it was that long). This might seem insignificant, but these were huge milestones for me.

There was something wrong with both boys’ lungs and their blood tests were sent overseas, but we’re still waiting on the results. Pulmonologist Prof. Goussard suggested they go ahead and do a biopsy on Samuel’s lung – he was chosen because his lungs seemed to be the healthier of our two boys.

Sick premature baby in hospital NICUTheir new set of doctors, Dr Van Eck and Dr O’Ryan, as well as Prof. Goussard explained that Samuel and Benjamin have a rare lung disease called pulmonary interstitial glycogenosis (P.I.G.). At this stage, all we can do is wait – wait for the results of the genetic tests and wait for our boys to get better. They’re being treated by means of ventilation, steroids and other medication in cycles or pulses, each lasting three months. The first pulse has been done; the next two will take place in NICU, so we still have a long way to go.

At this moment, our faith and patience are being tested to the extreme but even after all the lows I still have faith. I still have hope and I’m still waiting for that ultimate high of bringing my boys home, even if it means bringing them home with oxygen tanks or, even worse, machines to assist them with breathing.

I am holding out for my ultimate high!

Written by Siske van Niekerk.

MUST READ: Prematurity Awareness Month: A Mother Shares How to Support NICU Moms

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