Becoming a NICU parent
I spoke to mum of two Daniella about her experience with her second son, who needed NICU care from birth. I asked Daniella to share her experience so that any parents who find themselves in the NICU have an idea of what to expect as well as some tips of things to take and do whilst your baby is in being looked after by the wonderful NICU nurses. Thank you so much for sharing your story Daniella.
Before I share our story I want to share some facts about the Neonatal ward that aren't spoken enough about... did you know that:
- One in ten newborn babies will visit the NICU
- 62% of Neonatal admissions are actually full term babies, so your baby doesn’t have to be premature to be admitted
- Babies can be admitted for something as minor as low blood sugar, minor infection and jaundice (60% of all babies are born with jaundice)
- There are usually four or more wards in the Neonatal unit ranging from intensive care down to basic care and you may be in all of them during your stay
- The average length of stay in the neonatal ward ranges from 13-46 days however even if your baby is admitted for one day or one hundred days you have now entered a community of families that will stand with you.
I'm Daniella, mum to two boys aged two and one - my eldest was nine months old when we found out we were expecting our second and we were over the moon! We had such a lovely experience with our first born that we couldn’t wait for a younger sibling for him.
At my 20 weeks scan we were told we were having another boy and we were thrilled and so excited that we didn’t expect the sonographer to continue to tell us they noticed some abnormalities on our babies brain, we were then urgently referred to fetal medicine at a different hospital.
After meeting with them and having multiple ultrasounds, extensive blood testing and an amniocentesis, we were given the news that our baby had been having multiple brains bleeds due to a very rare platelet condition (Fetal Neonatal Alloimmune thrombocytopenia). He had a buildup of spinal fluid in his brain (Ventriculomegaly) and we were then told we would need a MRI scan to determine his brain activity.
After weeks of waiting, our MRI Results came back with a Grade 1 bleed and whilst the doctors were hopeful they could not give us a full prognosis. We started treatment immediately to shut down my immune system to help his blood clot so that we could keep him in utero as long as possible to give him a fighting chance. After weeks of treatment, regular MRI scans and weekly ultrasound scans, my body had started to shut down at 34 weeks gestation and he was no longer the safest environment so we were told that we would need to deliver within the next hour as he was being starved of oxygen. We were prepared and ready for the day that he would be delivered early and knew he would spend that start of his life in the Neonatal Ward, as this had been discussed multiple times with us. All along they’d actually said that it was unlikely I would make it past 30 weeks gestation, so we did pretty well considering!
Our son was born 15th August 2020 via general anesthetic Cesarean section. He was born not breathing so was put on high flow and rushed to the intensive care unit in the Neonatal ward. We would then have to wait six hours till we were allowed to see him. During this time we were given very limited information of his condition but we believed that no news is always good news, and we knew the doctors were working hard to keep him alive.
The first time I walked into the Neonatal Unit is a day I will never forget. I was pushed in via a wheel chair and my partner took me to our baby's incubator, which was covered in blankets with monitors all around. As I squeezed into the corner in my wheel chair I had the overwhelming feeling not of an instant love or bond but of worry, which is completely normal under the circumstances. I sat there for a few minutes trying to absorb my surroundings and the noises of the room, which would become a comforting sound to me in time.
Looking at my son laying in his incubator I was terrified at the thought of holding him, as I didn’t know how to hold such a small baby with wires everywhere, but as much as this feeling was overwhelming my motherly instincts to hold him were far stronger. It felt unnatural having to ask a complete stranger who I had only just met if I was ‘allowed’ to hold my baby, but the nurses in the Neonatal wards are so very kind and reassuring and they actively encourage you to hold your baby, but are also on hand to help as it is difficult to navigate your way around the wires. The first time I held him was without a doubt one of my favorite snuggles I’ve ever had and I learnt to never feel scared to ask for the NICU nurses help as they truly are angels on earth. I will never forget the names and faces of all the lovely staff that helped in our darkest hour.
As a NICU parent not only did I learn how to tend to my babies' basic needs I also learned how to medically care for a child, things you would never learn in any antenatal class such as how to tube feed, checking stomach PH Levels, how to check that your babies NG tube isn't too far down into their stomach, what all the numbers on the monitors mean and what to do when babies pull out their cannula’s and NG tubes (get used to this as it becomes a daily battle or a fun game for them depending how you look at it). But with all of the above you take it in your stride and If I’m being honest changing my babies nappy was the hardest part of it all.. it is impossible to change a nappy when your baby is in an incubator.
When I became a NICU parent I found an amazing community of fellow NICU Families online that helped me and also gave me some amazing advice that they recommended during our stay.
I hope you don't need these tips any time soon, but these really helped us whilst we were in the neonatal unit.
Portable pump – this will hands down be one of your best purchases if you are wanting to express milk! I remember driving in the car to see my son and would be pumping on the way there so that I would always have as much supply to take with me as possible! I would also highly recommend a pumping bra to use whilst in the NICU so that you can be hands free to hold your baby and not be using precious time plugged to a wall.
Bonding squares – when I was first gifted these I didn’t feel that this would help me bond with my child.... I was so wrong! They eventually became my life line and wwe’re something that helped me with the separation from my baby every day. I would always place one square in my bra and have one next to his face in his incubator then I would switch them around every time I would visit him. Not only did it help with our bonding it also greatly helped with my milk supply, definitely a perfect gift for a family in the NICU!
Note Pad – this is something you can fill out to keep a track of your daily results and NICU milestones or you can ask the nurses to write a little something so when you come in to the NICU in the morning you can read all the things your baby has been upto whilst you weren’t with them. I found this very comforting and also something to look forward to reading.
Phone/Camera - it seems a strange thing to suggest but we took so many pictures of our son in NICU and I’m so glad we did. It wasn’t the ideal first few weeks of his life but it was our new normal and I’m ppleased we documented every moment of that because they only stay small for a short while and we can share this with him when he’s older.
Talking– being in the NICU can be a very isolating place and it can be hard for family and friends to understand your new normal, but there are plenty of support groups and charities such as Bliss, Spoons and Sands that are on hand to help if needed and the outreach team and health visitors are always on hand. It wasn’t till after the NICU that I found comfort in talking to other parents who I could relate to.
Take a break – when I was in the wards I wanted to spend all of my time with my son to the point that I would skip meals, I wasn’t hydrating myself enough and I was becoming weak! Remember you need to take a moment for yourself. Most neonatal wards have a parent’s kitchen or at least have coffee shops within the hospital, so make sure you take a minute for yourself because the wards can become all consuming and you need to keep your strength up. Someone once said to me that if I were at home with my baby I wouldn’t sit all day at his bassinet I would make cups of tea for myself and I would make myself lunch so this shouldn’t be any different and that changed my mindset.
Calling the ward – All wards in the Neonatal have a direct number you can call. Whenever I wasn’t at the hospital I would always call to check in, I would call first thing in the morning then call just before bed and then every 2-3 hours during the night whilst I was pumping. This is an amazing service and the staff are excellent at giving updates! Some hospitals even have an App called Vcreate where they upload pics and videos of your little one 24/7 so if you can't be with them or can't visit you can still see your baby.
Nothing can or will ever prepare you fully for becoming a NICU parent but I hope this insight into our journey has shed some light about the NICU. The first day of your journey is the first day you’re your babies biggest advocate! Keep going even though the days are long, hard & testing, as each day your bond will grow stronger and you will start hitting neonatal milestones. Soon that first day will feel like a distant but unforgettable memory that will show your strength as a parent, partner and individual. You will be part of the NICU family and it is a family of caring, uplifting and compassionate people who have walked your path and know your pain so you will never be alone in your journey, I hope you remember that.
The Whyte Family