• Born too soon: The uncertainties and ultimately surviving the NICU Journey

    On World Premature Day

    Giving hope to new NICU parents

    born soon uncertainties ultimately surviving NICU journey

    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.

    born soon uncertainties ultimately surviving NICU journey

    born soon uncertainties ultimately surviving NICU journey

     

     

     

     

     

    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.

     

    born soon uncertainties ultimately surviving NICU journey

    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.

    born soon uncertainties ultimately surviving NICU journey

    born soon uncertainties ultimately surviving NICU journey

    born soon uncertainties ultimately surviving NICU journey

    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.

    Take care,

    A fellow NICU parent

    *Sponsored Post

    39 Comments

    1. November 15, 2017 / 2:25 pm

      Eisj, sorry about your experience. Thank you for sharing your experiences.

      • Noleen Miller
        Author
        November 15, 2017 / 3:08 pm

        It was very traumatic but it is all in the past now – we survived it and my daughter is healthy. Thanks for reading my post.

    2. November 16, 2017 / 3:24 pm

      Reading this brought tears to my eyes. I’ve been in the NICU many times but not as a parent as a midwife taking new parents to meet their little ones, they should have had their first cuddles straight after birth and yet due to prematurity/abnormality/birth trauma they have to wait for that all important, incredibly special meeting. NICU is a place like no other, so many emotions all in one confined space. Glad to hear your daughter is a happy healthy 11 year old x
      Thanks for joining #stayclassymama

      • Noleen Miller
        Author
        November 16, 2017 / 6:19 pm

        Having a premature baby in NICU is indeed a traumatising experience something that I wish on no parent. However in saying that the care babies receive in that unit is the best and the fatality rates are very low and most babies survive and thrive. Thank you for reading my post and that it touched you in that way.#StayClassyMama

    3. November 16, 2017 / 8:09 pm

      #stayclassymama
      I am so sorry you had to go through this but every member of your family is stronger for it. Congratulations on staying strong!

      • Noleen Miller
        Author
        November 17, 2017 / 8:32 am

        Thank you for reading my post. Yes it was a traumatic experience and I wish it on no parent. But we survived and overcome it – our faith and hope kept us going back then.#StayClassyMama

    4. November 17, 2017 / 4:09 pm

      I had a traumatic labour leading to Ben needing a NICU stay, I swear thats mostly what caused my PND. Even now thinking about it 18 months on I get choked up. Now we’re expecting twins Im prepared for another NICU stay, but i’m kind of grieving for the fact that I cant do a “usual” birth where within 24 hours we’re back home cosy and getting settled in.
      Fingers crossed it wont be as bad as i’m expecting it to be again! #fortheloveofBLOG

      • Noleen Miller
        Author
        November 18, 2017 / 7:46 pm

        Wishing you all the best for the birth and even if you have personal experience of the NICU – living through it again brings back new emotions. Hope all works out well with the twins and that you will at least be able to carry to 37 weeks.#fortheliveofblog

    5. November 17, 2017 / 7:36 pm

      Kudos to you for taking the time and emotional energy to revisit such a difficult time in your families life to make other parents in the same boat feel less alone. You are proof that even though the journey is long and hard, premature babies do survive AND thrive. Amazing that your daughter is 11-years-old but you can still recall it all so vividly. Thank you so much for sharing, I’m so grateful that I had two uneventful pregnancies and births. It’s probably the one time in your life you’re over the moon to be described as normal! #BlogCrush

      • Noleen Miller
        Author
        November 18, 2017 / 7:54 pm

        Although it’s 11 years ona – I still remember it as if it was yesterday and every year when we celebrate my daughters birthday I am reminded how blessed we are. I know what it’s like feeling alone during a time like this and therefore I felt it would be good to share my story to give hope to new NICU parents and letting them know all will be ok and that they are not alone. Thanks for reading my post.#Blogcrush

    6. November 18, 2017 / 1:56 am

      #blogcrush Such an incredible story. Hugs from a fellow two times over NICU Mum x

      • Noleen Miller
        Author
        November 18, 2017 / 7:57 pm

        Thanks for reading my post – fellow NICU mom.#Blogcrush

    7. November 21, 2017 / 8:46 am

      Glad your daughter made it thru, and good on Pampers for the donation. #TwinklyTuesday

      • Noleen Miller
        Author
        November 21, 2017 / 8:58 am

        Thank you – yes Pampers have been excellent in donating towards such a good cause.#TwinklyTuesday

    8. November 21, 2017 / 11:10 am

      So glad to read the happy ending of you now healthy little girl! It must have been a terrifying experience for you and one I’m sure others will appreciate reading about #twinklytuesdays

      • Noleen Miller
        Author
        November 21, 2017 / 11:13 am

        Thank you for reading my post – she is indeed a little fighter and all grown and healthy. The whole idea of my post was to create awareness and to give support to those who are currently going through the traumatic experience of the NICU. And I’m hoping that my words of encouragement will help them.#Twinklytuesday

    9. November 21, 2017 / 1:26 pm

      Thank you for sharing this, I’m sure a lot of mums can relate. It’s hard and emotional, it’s easy for NICU parents to feel alone. I hope this post touches a heart of a NICU mother to let her know she’s not alone #TwinklyTuesday

      • Noleen Miller
        Author
        November 21, 2017 / 2:13 pm

        I’m so glad that I wrote this post as there was a preemie born on World Preemie Day and the mom read the post. The whole idea was to give encouragement and hope. Thanks for reading my post.#TwinklyTuesday

    10. November 21, 2017 / 1:53 pm

      Having had two prem babies I can totally relate to this post and have written a few posts about our story. I’m so glad your little girl made it! #twinklytuesday

      • Noleen Miller
        Author
        November 21, 2017 / 2:24 pm

        Thank you for reading my post – I am so sorry that you lost your baby which must’ve been the hardest ever. No parent should have to go through that. Yes I’m grateful that my daughter survived it and thank God as she is such a blessing in our lives#Twinklytuesday

    11. November 21, 2017 / 2:21 pm

      Aww im sorry you had to go through this. i feel so fortunate when i think about my son because i went 5 days over on him but never would i have thought about going early 🙁 xxx #TwinklyTuesday

      • Noleen Miller
        Author
        November 21, 2017 / 2:28 pm

        Thanks for reading my post. I never really thought that I would have an emergency c-section with my first child and that complications would creep in. I think going into early labour is the furthest from our minds when we pregnant. Just grateful that we were able to get through that ordeal and now she is a healthy 11 year old.#TwinklyTuesday

    12. November 21, 2017 / 3:32 pm

      What a wonderful supportive post that will be such a huge help to so many. I am so glad that your daughter is a fabulously healthy 11 year old and I can’t imagine the realities of a NICU stay. Thanks for linking up with #TwinklyTuesday

      • Noleen Miller
        Author
        November 22, 2017 / 9:40 am

        Thank you for reading my post – I wanted to write something to give support to those finding themselves in NICU – not just tell my story.#TwinklyTuesday

    13. November 21, 2017 / 3:41 pm

      Thankyou for sharing this, what an emotional journey but im so glad your daughter is the thriving 11 year old she is today. And thank goodness for your 34 week scan to notice something was wrong!

      • Noleen Miller
        Author
        November 22, 2017 / 9:44 am

        Thanks for reading my post – yes I’m lucky that they picked up that my placenta was calcified otherwise it could’ve been so different.

    14. November 21, 2017 / 10:32 pm

      Such a fantastic post to share. Thanks for linking up to #fortheloveofBLOG

      • Noleen Miller
        Author
        November 22, 2017 / 9:44 am

        Thanks for reading it.#fortheloveofBLOG

    15. November 23, 2017 / 4:06 pm

      Oh gosh I am in tears. My niece was born at 26 weeks and I remember the hourly updates, as everything seems to change so quickly when they are so small. I remember going to visit and making my way through the beeping machines and web of wires. Little did I know, 4 years later, my own baby would be hooked up to these life-saving machines. She wasn’t born early but had complications and a 9 hour surgery, aged just 3 months. Again, we couldn’t hold her, and we had to trust the medical professionals with her life, trust that her screaming through the procedures was the best course of action even though everything within us wanted to push the doctors away and stop them hurting her.

      Both girls are now healthy and growing, ages 10 and 6. We are forever indebted to those wonderful people who cared for them both. And I am so glad that you also have a happy end to your tale. Thank you for sharing this story and giving people a window into what this awful experience is like. #blogcrush

      • Noleen Miller
        Author
        November 23, 2017 / 7:50 pm

        I’m sorry that this post made you cry but I was so emotional myself when I wrote it. I think when women are pregnant that is the last thing they expect for their babies to be born prematurely or that they carry till full term and their babies have health issues. We all dream of the perfect birth and the happy ever after but it doesn’t always work out like that and it is a very traumatic experience that I wish on no parent. And although the survival rate is much higher than fatalities – I just can’t imagine what those who lose their babies go through. I’m just glad your niece and daughter survived and are healthy little girls. Thanks for reading my post.#Blogcrush

    16. November 24, 2017 / 10:12 am

      This had me in tears reading it. I can imagine how difficult it must be having your newborn baby in NICU. I think your blog post will provide so many women (and men) with the comfort and support they need during such a difficult time- thankyou for sharing. #blogcrush

      • Noleen Miller
        Author
        November 24, 2017 / 10:23 am

        Thank you for reading my post – I am glad that it is already giving support to a few as I’ve received messages of mom’s who are currently finding themselves in NICU.#Blogcrush

    17. November 26, 2017 / 6:29 pm

      Oh wow, what a beautiful, emotional read… I can’t imagine what that experience must’ve been like for you, but it’s clearly still so raw in your mind-I can’t imagine that you it wouldn’t be. I’m sure any parent experiencing the same thing, would feel very comforting eyed by reading this, and I’m so glad your girl is now a healthy bouncing 11 year old!!
      #bigpinklink

      • Noleen Miller
        Author
        November 26, 2017 / 7:27 pm

        Thanks for reading my post. To be honest, I don’t think it will ever leave my mind – yes the memories will fade slightly but that experience will always be remembered. I am not looking at it in a negative light as when I see how my daughter is developing and growing, I am blessed that we went through that experience. Looking back and telling my story is about giving hope and that along with the trauma of the NICU, there are also joy.#bigpinklink

    18. November 26, 2017 / 9:47 pm

      Wow what a moving and honest account of your experience. My mum was a NICU nurse for years before she retired and I know she loves to hear success stories like yours. And I’m sure it will offer comfort to anyone in that situation #bigpinklink

      • Noleen Miller
        Author
        November 27, 2017 / 8:49 am

        Thank for reading my post. I have the utmost respect for the nurses in the NICU – they are the ones who are there night and day to care for these babies. And although I do for other nurses working in other units as well, those working in the NICU just have something special. These babies are so tiny and they can’t say where it is hurting. They are the guardian angels who are there taking care of the babies and encouraging the parents. Hats off to your mom for doing a brilliant job before she retired.#bigpinklink

    19. November 29, 2017 / 11:33 pm

      What a powerful story, I can’t even imagine how it must feel to be in that situation. It must jar with all your natural mothering instincts. Thank you for sharing and raising awareness. #BlogCrush

    20. November 30, 2017 / 4:13 pm

      Thank you for sharing your story so that others know they are not alone. #BlogCrush

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