On World Premature Day
Giving hope to new NICU parents
To the new NICU mom and dad, it is undoubtedly not your desire to become one. Whatever the reason for your baby being born too soon; it was a situation that you had no control over. You did not envisage this to be part of your birthing plan. Even more so that your tiny little human will be lying in an incubator hooked to beeping machines, struggling to breath and fighting for his/her life.
As you sit in the chair staring at your tiny baby, you look tired and worried. The minutes turn to hours but it feels like a lifetime. You experience multiple emotions at once – joy, love, fear, sadness, anger and frustration. Feeling helpless and alone and thinking that nobody understand your heartache. A feeling of uncertainty about what the future holds is not strange.
My message to you is; take comfort in the fact that you are not alone and that there is hope. Yes you may feel hopeless and alone at this very stressful moment but you are not. I say this as my husband and I were NICU parents 11 years ago. We felt the exact feelings that you are experiencing at the moment.
At 13 weeks pregnant, my obstetrician noticed that I have a low lying placenta. Not being very concerned by its position. My doctor indicated that it was still early and that my placenta could move up. Advising me to refrain from extreme exercise, sexual intercourse and lifting heavy objects. Other than the low lying placenta; my pregnancy was pretty normal with no complications and bleeding.
At my 34 week check up, alarm bells went off. My placenta was so calcified that it was just a haze and baby was not growing and getting enough oxygen. I had to undergo an emergency c-section as my baby’s life was in danger. This tiny little human was born weighing only 2.1 kg and all I could remember was just glancing at her and noticing all her hair.
Babies born before 37 weeks are classified as premature. Born at 34 weeks might be nothing compared to a baby born at 26 weeks but the experience is still traumatic. Babies born too soon, have undeveloped organs and reflexes.
This is an experience that I wish on no parent. As you, I too felt guilty that my body failed my baby. Fretting about the what ifs, could’ve s and should’ve s was playing havoc on my mind. Resenting myself that I did not do more to protect my baby and that I was perhaps negligent during my pregnancy. But let me tell you, none of this is your fault. Don’t beat yourself up about it and stop feeling guilty.
Mourning the fact that I could not carry my baby to full term, that I did not experience the normal birth that I hoped for, that I did not experience any labour pains and that my baby was not born healthy.
Like you, I envied other mothers who had the opportunity to hold their babies immediately after birth. I was jealous that they could bond and breastfeed their newborn babies. Getting a lump in my throat and tears streaming down my cheeks every time I witnessed how new moms interacted with their newborns in the recovery ward.
Like your baby, they rushed mine to the NICU unit immediately after birth. My husband following our daughter to NICU making sure that she was ok. This was even more traumatic and scary for him as he had to watch what they did to our baby. However it was necessary. Vital as she had undeveloped lungs. Hooked up to monitors to check her heartbeat and vital signs, as well as IV tubes and a nasogastric feeding tube inserted.
Although all of this was a necessity, it didn’t make it any easier for him to stand and watch. Despite his trauma, he was the one who supported me. He was the one to whom I could voice my concerns and share my feelings. Therefore my advice to you is, do not suffer in silence, speak up – find that someone you can talk to.
Longing to hold your baby and getting to know them seems like an eternity. The only contact you have is that of the Pediatrician, NICU nurses and your husband or partner who visits your bedside and giving you feedback on your baby’s progress or setbacks. Not understanding the medical jargon and feeling overwhelmed and confused with all this information – is normal. Trusting the NICU nurses and Paediatrician to make the right decisions and giving them the permission to go ahead with certain procedures, is not easy.
I know the feeling of anxiety mixed with excitement when you finally get to visit your baby in the NICU section. Walking into the NICU for the first time, two days after giving birth to my baby, is an experience I will never forget.
The NICU is a sterile environment. Strict access control measures are in place. Granting access to NICU nurses, doctors, visiting parents and grandparents only. Reminded to scrub your hands with hand sanitzer upon entering this unit and doing this as often when you are in the unit. This is vital as premature babies are prone to picking up germs and infections. The sound of beeping machines and alarm bells becomes your new normal. I know the feeling of your stomach being in knots once you’ve been accompanied to your baby’s incubator.
I know the difficulty of seeing your baby for the first time and told you can’t hold him/her. The only form of contact is to gently touch your baby and to talk softly to him/her. You feel numb and powerless, not knowing what to do and all you can do is cry. You feel vulnerable staring at their tiny hands and feet, wrinkly skin, hardly any eyebrows, lying all curled up in the incubator. But yet, he/she is so perfect no matter how small. You instantly fall in love with this tiny miracle.
The nurse assigned to your baby explains to you what all the machines are for, gives you an update of your baby’s vital signs and indicates the importance of the incubator. That it is there to help regulate your baby’s body temperature. Watching your baby fight for his/her life is devastating. No parent should go through this. The worst is knowing there is nothing that you can do to help him/her.
Then the day dawns and you wish that it never came. Being discharged from hospital while your baby stays in NICU. It is the worst feeling ever – I know exactly what you are going through as it broke my heart. Going home to a nursery without a baby is an empty feeling. You don’t have to pretend that all is ok when it is not. It is harder than what you letting on.
The daily trips to the hospital and the repeated heart break every time you leave the hospital and say goodbye to your baby. Throughout all this, your patience are tested, you feel physically and mentally exhausted but still diligently pump your breast milk at home to take with to the hospital the next day.
Every morning you make your way to the hospital and hope that your baby’s condition has improved. Just to find out that doctor has made his/her rounds and wasn’t satisfied or that baby has picked up an infection. I know that feeling of disappointment and being upset as every set back is a longer stay in NICU. The phone calls to the NICU at night to check in if baby is ok.
The NICU nurses become your baby’s guardian angels. We learn to trust them with our most valued possession. They take on the intense responsibility to care for your baby when you are there and when you are not there. They become your calm in the chaos and your guidance when days seem bleak.
Then finally you get to hold your baby. Despite the fact that your baby is still so tiny and have tubes attached – it is the best feeling ever. Spending up to 8 hours a day in the NICU can be tiring but you draw strength from your baby. Seeing him/her being a little fighter makes you strong. Doing the kangaroo care is the most satisfying feeling you can get. Feeling your baby’s tiny heart beat against your chest is an indication that there is still so much to live for.
You meet other parents, whose babies are also in NICU and realise your journey is not as difficult as theirs. Some born much earlier than yours and have been in the unit for months. Some of these babies have life threatening health conditions; they had to undergo numerous surgeries. You understand other parents pain and suffering by listening to their stories and realise you are not alone. You become concerned about their babies and hope that they too will continue to fight to survive. Every time a baby would leave the NICU was a victory and hope that one day that will be your baby.
The feeling of joy is indescribable, when your baby has been transferred from an incubator to a crib and the gastronasal tube being removed. This is such a big achievement and a sign that your baby is growing stronger and has developed a sucking reflex. I also know that you feel like a failure when you struggle to breastfeed your baby for the first time and your baby does not latch. The nurse that continuous to give you words of encouragement and telling you it’s ok if you bottle feed. The most important thing is to get baby’s weight up.
A nervous feeling comes over you when you are told to change your baby’s nappy or bath your baby for the first time. At first you feel a bit apprehensive and scared. This is all normal. You think that you will hurt your baby’s tiny little body, but know that help is right there. It is the most rewarding feeling ever, knowing that you could take care of your baby.
Finally, the day when you get to take baby home is a day that you wished for since your baby was born. You are overcome with joy and happiness. It is the best day ever. Then you get to dress your baby in the newborn clothes just to realise that he/she is drowning in it.
Suddenly it hits you, just how tiny he/she is – will you cope without the help of the NICU nurses. You are then again filled with doubt of whether you will be able to take good care of this little person once you leave the safety of the NICU. Rest assured, you will be just fine and that the doctors and medical staff have confidence in you by releasing your baby in your care.
Although your baby leaves the NICU, the road ahead is still long. However take cognisance of every little milestone and know that your baby is thriving.
If you are a new NICU mom, a pregnant mom who were told that her baby would have to be delivered early due to complications, a pregnant mom who is expecting multiples and will have to walk the journey of the NICU. Know that you are not alone; there are support groups out there.
I would therefore like to ask your support to create awareness by wearing purple on 17 November which is World Premature Day and tag @PampersSA and include #purpleforpreemies and #TouchesOfLove to show your support to of all premature babies and their parents. Although the NICU can be intimidating for new parents, it is one of the best units you can find in a hospital and your baby will receive the best care.
For every photo Pampers is tagged in, Pampers will donate 10 nappies to the Groote Schuur Trust. If you are wearing a sticker in your photo, Pampers will donate a further 10 nappies to the trust. Stickers can be bought directly from the New Born Baby Trust.
Never stop hoping and praying, without hope and faith you have nothing.
Today, my little premature baby is a beautiful and healthy 11 year old girl. Every birthday is a celebration of her life. We constantly remind her that she is our little miracle and a fighter. Although, our journey in the NICU is in the past, it will never be forgotten.
A fellow NICU parent