Survival guide for a NICU Parent

Being a NICU parent requires determination, emotional control, positivism and lot more. You will have plenty of challenges and to overcome them you need to bring out the most intent and sturdy person within you. To quote it simple you can say, ” I am a NICU parent. What is your super power?”. That is what you will need – a SUPER POWER.

In this post, I will present to you a complete survival guide for a NICU Parent. Of course, surviving a NICU stay is not that easy.

Survival guide for a NICU Parent

Behind the glass, at the NICU there is a heart beating fast, caring for the one who could not be seen.
– This is how the life of a NICU parent will be.

This is a guide to help your survival as a NICU parent. I didn’t have any such information handy when I had my twins in the NICU. The days were pretty challenging. New environment with our babies in an unreachable distance, not sure what to expect every moment, with everything uncertain made our life pathetic.

Challenges faced by a NICU parent

As a NICU parent you should have the courage to face a good deal of challenges. Every side you turn will look like an end. But you are not alone.

There are so many NICU parents who have started a difficult journey, struggled in each stage, faced every hurdle strongly and went back home happily with their bundle of joys. Here with my experience and all that I gathered from fellow NICU parents I have listed a few challenges which might possibly be daring at you right now. I have also given few tips to handle those stumbling blocks.

#1 Managing Mixed Emotions

The moment the doctor announces that your twins have to stay in the NICU for a while, you will feel a mixture of emotions bouncing within. They will be uncontrollable and you cannot avoid it.

• First, you would be terrified to know that your babies have some health conditions which need a medical supervision.
• Second, watching your little twins suffer and surrounded by all the equipment will crush your heart.
• Third, the fear how are we going to save and get our infants out of the NICU would be haunting you.
• Fourth, the fact that you have to stay away from the tiny ones in their frightful condition would be indigestible.
• Fifth, the big question hanging in front of you every second – Will we succeed in this formidable journey and get back our little ones safe and healthy?

Handling the Emotions

Face all these emotions and if you couldn’t control cry yourself out. Take your time, an hour or a day and try to move out of all these depressing thoughts. Realize whatever is happening is for the wellness of your babies.

Bring in some positive energy. Tell yourself everything is going to be fine. Come back to the real world. Understand the circumstance and find out what is expected from you. Be ready to fight with your tiny warriors. Be their hero and support them with your unconditional love and care.

#2 Coping with your Twins Growth and Progress

Throughout the NICU phase, your sole concentration will be only on your twins betterment. Either it be outgrowing a breathing problem or gaining weight or recovering from a congenital heart or brain disorder you will tend to notice their development every day, every hour and every second. But the advancement may not always please you.

• The progress may not be as fast as you expect it to be.
• At times you may not see any progress and all that you witness will be a fall in their health condition.
• You may have to hear about any new condition which has developed with your twins when you were possibly thinking everything was going fine.
• They may have to undergo surgeries or small procedures or blood transfusions which might panic you.
• One of your twins may be growing better and the other might have a possible setback.

The Ups and Downs

These ups and downs in your twins health are very common. As a NICU parent, this is when you have to keep yourself composed. Patience is what all you will need. You may have to wait, wait and wait to see your babies reach a small stepping stone. Be thankful for it and stay optimistic for them to get better. You will be upset when their health deteriorates rather than showing a progress. Console yourself, think positively and support your twins. Miracles often happen in a NICU.

Always be attentive and manage your emotions when you discuss with their doctor about their health condition. Comprehend the details and know what is happening with your little ones. They may ask you to make some major decisions in your twins life.

Energize each other with some positive thoughts like

‘With NICU a miracle can happen any second, our babies are going to be better soon’,
‘NICU is a step process and can have many forward and backward moments’,
Our babies are warriors they will fight and succeed’.

HOPE – Sometimes it is all that you have when you have nothing else. But if you have it, you have everything.

Recommended : Common health conditions treated at NICU

#3 Making the Right Decisions

All these NICU stuff will give you more strain and pain. You will feel bit relived if you have someone to lean on. This is when your friends and relatives will pitch in and create a supportive environment. But as their number grow so will their opinions and suggestions. Here is where you should open your ears for all those recommendations and advice but keep the decision making in your court. Their intentions will be good, but too many views might confuse you.

Here is what you should follow in such scenarios.

• The recommendations may be for anything like what hospital you should choose, which pediatrician or specialist to consult, what decision you should make if a surgery or procedure is advised for your babies and so on.
• You cannot stop anyone from giving their opinion or advice. Listen to them. But reserve the decision to yourself.
• Consider the facts you gathered, apply your mind and make the decision which is right for you and your twins.
• It is enough and best if both the father and mother are in complete agreement with what they have decided to be best for their babies.
• If your babies are diagnosed with a health condition, you should be prepared to hear both positive and negative comments from your supporting community.
• Don’t confuse yourself and lose your confidence on hearing all these. You have chosen the right medical adviser, trust them and follow their suggestions.
• If your conscience says you should act otherwise or look for a second opinion or move to a different health care provider don’t just decide on the go. Also don’t let others opinion or your emotions induce your decision. Sit and think twice or thrice, value all the pros and cons and then decide.

The necessity of a strong relationship

It is always good if you care for your babies together as parents. NICU babies need both maternal and paternal support. Also a strong bond between the father and mother is more important as they have to decide on the best for their babies. Lack of connection between them will add to the pressure and tension they are already undergoing. As NICU parents, you should support each other, be strong and together work towards bringing your babies healthy and safe to your sweet home.

#4 Financial Planning

Financial planning is something which might become a challenge for some NICU parent depending on how long their twins have to stay in the NICU. In the midst of delivery and shifting the infants to NICU you might forget about the money matters. But soon you will have to step into it and plan.

Once you get to know that your twins have to be in the NICU, find out how you are going to handle their stay financially.

Do you have an insurance coverage?

If so, you should follow this.

• Go through the insurance plan under which your family is covered.
• Understand the benefits, coverage and the cash limits.
• Get in touch with the insurance provider and add your twins as your beneficiaries.
• Inform the provider about your twins admission to the NICU.
• If the admission is in a network hospital, you can opt for a cashless facility. In that case, collect the supporting documents from the hospital help desk and submit it to your health insurance provider as early as possible. Sooner you do this, you can avoid paying any bills on your own.
• If you are not in a network hospital or prefer to claim post hospitalization, make sure you have sufficient finance to cover the hospital bills. On discharge, collect all the supporting documents from the hospital, submit it to your insurance provider and follow up on the claim.
• If the stay of your twins at the NICU is going to be for a longer period, you may exceed your approved cash limit with the health insurance provider. In such scenarios, you can check for any top-up facilities on your coverage plan. This might not be feasible always. So you should plan ahead and be ready to pay on your own for longer stays.

No Health Insurance

If your family is not covered under any insurance coverage, then you might have to bear all the hospital expenses. In such a case, you should be doing the financial planning well ahead even before the delivery. Few tips on this,

• As you are going to have twins, all the expenses are going to be double. So a perfect financial arrangement is must.
• As twins can have a premature birth, they are more likely to land up in NICU. Be ready for some hospitalization expenses post delivery. Here again double will be the hospital bills.
• The expenses may be huge or less based on their health condition and their duration of stay in the NICU.
• You might also have to consider other expenses like commute, lodging if you are staying away from the hospital and have to visit your infants daily.

Whether it is an insurance coverage or you are paying out of your pocket, financial management will be a great challenge. One side you will be having all the emotional stress. On the other side you will have to arrange for the money needed to support your babies in the NICU. It can be a pressurized drive, so be clear and prepared .

Recommended : Know about NICU, its team and the machines

Your role as a NICU Parent

Apart from all the emotions, stress and financial issues, you will still be wondering what is your role as a NICU parent? What is happening for your twins? Who is going to care for them in your absence? From whom will you know about the daily activities and health condition of your babies? What will your twins need in the NICU? How about their feeding? Can you have interactions with them?

You will have more and more questions about this. Here I have provided few ways by which you can lessen the feel that you are away from your babies and support your twins as much possible.

#1 Communicate with the NICU staff

NICU staff are the people who will be nurturing and caring for your twins all through the day. They are the doctors, nurses and visiting physicians. You should have a good rapport with them to gather all that you want to know about your infants.

Talk with your neonatologist or NICU doctors frequently and get updates about the health condition of your twins. The direct words from them will give you more confidence than what you will hear from nurses or see in a report. You can also clear your doubts straight away from them. There is no need to hesitate as you would feel better once you know that your babies are well cared.

The angels taking care of Tiny Lives

The NICU nurses are the angels who pour their love and take care of many babies at a time. They will be monitoring and reporting every infant’s progress. As a process, they will let you know about all the major details of your twins health condition on a regular basis.

But if you want to do more talking and want to gather more detailed information like how long did they sleep, how much feed did they take, did they have bowel movements, how do they interact with themselves etc., then find the perfect timing. You should have patience and communicate with the nurses at the right time as they might be busy with other tiny patients.

The NICU staff will notify you, if any special physicians or surgeons are visiting your babies. Be sure to be present when they are visiting and interact with them to know about their diagnosis of your twins.

While at home, if you are restless wanting to know how your twins are doing, make a call to the NICU and talk to the staff. Check about their health, feed and all other questions you might have. This will reduce your anxiety and give some good feel.

The NICU nurses will train you on all the baby handling techniques before they discharge your twins. Even after discharge, if you have any doubts or questions about caring for your twins, you can call the NICU staff and get their advice. Like if your baby is uncontrollably crying and you are not sure why and what to do they can help you. Or if you have problems feeding your baby or have some other complications you can call for their advice.

#2 Visit NICU daily

There is no need to even say this. Every parent will definitely visit the NICU daily. They cannot control the urge to meet their little ones and know how better they are.

Specially if you are allowed inside the NICU and permitted to interact with your twins, you will even want to stay there for the whole day. But if you are not permitted inside the NICU, you should still keep visiting everyday. This is not only to know about the progress of their health condition, but also to calm and relax your mind which was lost being far away from your twins.

You should also visit to supply the necessities for your babies, mother’s milk and provide kangaroo therapy. I will be discussing about all these in the below sections.

#3 Kangaroo therapy

All the advanced technology and medicines can do wonders in your twins life. But there is one thing which can do miracles more than wonders. It is nothing but a baby feeling it’s mother’s warmth skin to skin.

You would know that a kangaroo carries it’s baby in the pocket all the time. The baby feels safe and grows well with the mother’s constant touch. Kangaroo therapy is all about this.

How to give the therapy?

Your baby will be undressed, kept on your chest skin to skin for an hour or more. You will be asked to repeat this every day for both your twins.

You will enjoy your baby’s touch, feel their smell and embrace them with all your love. The baby will also sense the mother’s smell, warmth, familiarity, intimacy and feel safe as if like he/she was in the mother’s womb.

Talk to your babies, tell they will be getting well soon and come home with mommy, sing for them, caress them, pour all your love while holding them close to your heart. You will slowly get to know what changes this is bringing in you and your babies.

The close touch and your body heat will help your baby to gain weight, strength and sometimes outgrow serious health conditions. This warmth a baby gets from it’s mother will be more effective than what he/she gets from a warmer. Being separated from your babies right from birth would have affected you deeply. This skin to skin session with your babies will help to fade away the loneliness to some extent.

A Father’s therapy and bonding

A father can also provide this therapy to the infants and it is not restricted to the mothers alone. In fact it will be more effective for the father and the babies as they will start to build a intense bonding. A mother carries her baby in the womb, but fathers could never experience the feel of carrying the baby in them. This therapy can more or less give that feeling for the fathers. They would sense their connection with the baby and perceive it to be the most wonderful moment in their life.

This kangaroo therapy is practiced not only in the NICU but also for full term healthy babies. In addition to supporting the growth and development of your babies, it will create a deep bond between the parent and the baby which will be priceless.

#4 Ensure availability of mother’s milk

Most of the babies in the NICU will be preemies and others might have some severe conditions. So it will be very unlikely for the mother to feed the baby directly while in NICU. Mother’s milk will be administered to the babies through feeding tubes, syringes or bottles. For this the mother need to pump the milk and provide it to the NICU staff. They will store it in their refrigerator and use to feed your babies.

As a mother of twins, sometimes the milk you supply will not be sufficient to feed two babies. In such scenarios, in addition to mother’s milk, formula will be fed to the babies.

Recommended : Recipes for feeding moms

Steps to deliver Mother’s milk to the NICU

Some NICUs will have pumping machines available for the visiting NICU Moms. NICU will make sure to sterilize the pumping set often to avoid any infections as all mothers will be using it. However it is advisable to have your own pumping machine at home. By this you can avoid any possible infections, save time and pump/store milk while at home.

So you can follow the below process to ensure mother’s milk is readily available for your twins at NICU throughout the day.

• While at home, pump milk at regular intervals. This will help you to keep a constant milk supply.
• Store in sterilized bottles.
• Label them with your name, date and time when it was pumped.
• Refrigerate the bottles immediately after pumping. (Properly refrigerated mother’s milk can be given to the babies up to two – three days under clean conditions.)
• Next day deliver these bottles, when you visit the NICU .
• They will use this supply for the next 24 hours for your babies.
• In your subsequent visit bring the other set of pumped milk bottles from home and take back the empty bottles.
• Repeat this process.

Mother’s milk is love turned into food.

Time-tested for centuries, mother’s milk has the best nutrient for babies because it is nature’s perfect food. So never make a compromise in feeding your twins with mother’s milk though they may be away from you.

#5 Deliver the needed baby stuff

The NICU staff will let you know if your twins need any baby stuff. It may be something like

• Diapers, Napkins
• Formula tin , Syringes, Sterlized bottles
• Clothes to keep the baby warm, Mittens, Socks, Wrapping towels
• Medicines

Deliver the required things during your visits. You may have to take the soiled clothes for washing and bring new set of clothes every day.

#6 Learn how to care for your babies at home

Slowly your babies will be reaching a stage when they can happily come home with you. Returning to home not only depends on the health of the babies but also on the confidence level of the NICU parent. You should know when you are ready to take them home. You should practice and assure yourself that you will be able to care for your babies independently without any medical supervision.

Certain NICU doesn’t allow the parents inside for sanitary reasons, as the little persons might catch infections easily. But if your NICU allow you to see your twins and interact with them, then you can see how the staffs are caring for your babies. You can learn how to handle your tiny babies, how to feed them, how to change their nappies etc., You can even assist the staffs in these chores for few hours every day, when you visit your twins. This will give you more confident when you are taking your babies home.

Recommended : 7 essential tips for managing twin babies

Even if you are not allowed in the NICU, when your babies are close to their discharge date the NICU nurses will train you with baby handling techniques. They will teach you about everything your babies will need.

Ready-to-Take-Baby-Home Checklist

By the end of the NICU stay, you should be confident on the following points for each of your baby. Remember you have twins and their requirements may be totally different.  (Free printable of this checklist is available at the end of this post)

The Basics

• Assure that you are comfortable in holding and handling the baby, as they may be very tiny.
• Be aware of the baby’s sleeping patterns.
• Understand how to keep the baby warm.
• Learn the techniques to calm down your baby when he is restless or cries.

Health Related

• Know about any health conditions still prevailing with your baby which need to be monitored at home.
• Get familiarized with the medicines which are daily administered to the baby, their quantity and timings.
• Gather advice on what emergency conditions may occur and how to handle them.(First Aid awareness)
• Be aware of any possible common illness which might occur and what medicines need to be given along with the quantity and frequency details.
• Be informed on how to handle colic pain.
• Note down baby’s latest weight details and the weight gain expected per week.

Feeding

• Baby’s feed intake intervals and quantity per feed.
• Learn how to prepare formula feeds.
• Know how the formula or mother’s milk have to be given when and in what frequency.
• Get used to feeding the infant with syringes or bottles.
• Details on when to start direct Mother Feed.
• Make sure how to handle reflux and acquaint with burping and holding or lying positions of the baby after feeds.

Baby Care

• Get trained on how to clean the baby and change nappies.
• Get accustomed with bathing techniques like sponge bath or towel bath or a complete bath.
• Details on when to give a complete full bath for the baby.
• Be familiar with the Kangaroo therapy techniques.

Post NICU Consultations

• Keep track on the next check up date with the neonatologist.
• Find if consultation with any other physicians is needed like an ophthalmologist and note the next consultation date.
• Get the contact information of all the physicians and doctors who attended your baby in the NICU for further consultations.

These are some general requirements in which you should be skilled well before taking the babies home. You may also have to familiarize on few more points based on your baby’s health condition.

Make a note of all the details you have gathered in the NICU separately for each twin. Here by make a note, I mean to literally write in a journal or notebook. Once you start caring for your twins at home you are more likely to mix up their requisites in your initial few days. So it is better to have everything written about each baby.

Also record the milestones your baby has crossed in this daring journey. Later in the future you will wonder how you and your babies sustained this journey so successfully.

The journey of a NICU baby is often one step forward and two steps back. Watch them breathe, watch them sleep and nourish them with liquid gold. When strong enough they will take three leaps forward and never look back!

Wishing you a smooth and jubilant NICU Parenting!

Free Printable

Make sure, whether you are all set to take your babies to your sweet home from the NICU (Neo natal Intensive Care Unit) with this READY-TO-TAKE-BABY-HOME CHECKLIST 

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Image credits : Main image by Stacey Lynn Photography via Flickr / CC BY ; Managing emotions by Alachua County via Source / CC BY ; Coping with your twins growth and progress by  NomadicEntrepreneur via foter / CC BY-NC ; Making the right decisions by vishal.bhakta via Foter.com / CC BY-NC-ND ; Communicate with the NICU staff by Army Medicine via Foter / CC BY ; Visit NICU daily by  echobase_2000 via Foter / CC BY-NC-SA ; Kangaroo therapy by DFID – UK Department for International Development via VisualHunt / CC BY ; A Father’s therapy is more effective by atomicshark via Foter / CC BY-NC-SA ; Pump Mother’s milk by reuvenim via Foter / CC BY-NC-ND ; Refrigerate Mother’s milk by shingleback via Foter / CC BY ; Deliver needed Baby stuff by malglam via Foter / CC BY-NC ; Learn to care for your babies at home by bgreenlee via Foter.com / CC BY ;

Note : Added text to the original images used in this post.