A Family's Perspective: Niah's NICU Journey
Niah was born spontaneously at 24 weeks plus 2 days and weighed 735g.
“After 113 days in hospital we were finally allowed to take our baby girl home. It was a day I’ll never forget.” - Freyja (Niah’s mum)
Freyja (Mummy) shares:
We were blue lighted to St Peter’s Hospital prior to delivery and spent the first 6 weeks there. Niah initially was breathing on her own but on day 3 she was intubated. It was then discovered that the duct in her heart did not close during delivery, so she was treated on a course of paracetamol and ibuprofen. The duct eventually closed.
From the beginning we were encouraged to help with her cares, which definitely helped with bonding. Although sometimes it did make me sad that I couldn’t ‘mother’ her like I wanted and lots of females were handling her so I was worried she wouldn’t know I was her mum.
Niah managed to get onto CPAP (Continuous Positive Airway Pressure machine) and then NIPPV (Nasal Intermittent Positive Pressure Ventilation). We were thrilled she might be out of the woods. After 6 weeks we were transferred to The Oliver Fisher Neonatal Unit. When we arrived on the unit, all of Niah’s observations were done and X-rays were taken so doctors had a baseline of her. Sadly, it identified that her lungs were struggling so she was put back onto CPAP and then within a few days back to being intubated. I was heartbroken.
“It was a rollercoaster of her making progress and then taking steps backwards- it was hard to see the light at the end of the tunnel. ”
After 12 weeks she finally moved from ICU into high dependency- this was a huge milestone for us. We were finally able to start breastfeeding (alongside tube feeding) and she could wear clothes! She passed the sats study and we were moved into special care.
After 113 days in hospital we were finally allowed to take our baby girl home. It was a day I’ll never forget.
We are incredibly grateful to all the staff that saved her and made this extremely difficult journey much more manageable. You’re all superheroes!
Gregg (Daddy) shares:
The unexpected arrival of our daughter was one filled with mixed emotions. The medical staff explained what was happening and what was going to happen very well, even if some of the content was difficult to hear. For Freyja and I it was entering into the unknown and for me it was a case of me entering into being there to support Freyja no matter what the outcome.
The moment Niah was born things happened exactly as they were explained to us. We were both able to have a short hold of Niah before she was whipped away. There was an element of not knowing what was going on from the moment Niah left the room….where has she gone, is she ok, what’s going to happen, what next….just a few of the questions rattling around my head. What I can say is that the midwife who was with us was exceptional, her manor, her reassurance and her empathy was second to none.
“Onto the NICU ward…walking into that room I generally had no idea what I was going to be facing. Mentally I was remaining positive for Freyja, seeing Niah, our little girl in that incubator for the first time just laying there with multiple tubes, wires and various machines surrounding her is an image that will never be forgotten. ”
Not being a particularly emotional person, over the next few weeks would be somewhat of an emotional roller-coaster. The staff on the ward were again exceptional. Their calm approach and the way they explained things was excellent. However, seeing staff work on Niah, seeing the emergency button get hit and multiple people entering the room was daunting and each time it happened it was difficult not to think the worse…but each time Niah fought back.
My focus, my priority, Niah, Freyja, Xanthe and Athena supporting them all making sure I was there for them all, supporting them reassuring them. What would follow for the next 16 weeks, 10 of which were at the Oliver Fisher would be auto pilot mode. I would stay as much as I could at the hospital with Freyja and Niah sleeping on an airbed on the floor. Head home to look after Niah’s sisters Xanthe and Athena, ensuring that they had time to come up to see Niah and Freyja to spend time with them as well as try to keep things as normal as possible for them.
Seeing Niah’s sisters have the opportunity to read to her and comfort her was a joy, knowing full well no matter what happened Niah was fully part of our family unit and the love the girls already had for Niah could clearly be seen. This made it all the more challenging talking to them when things were not going so well with Niah….with that being said ‘I WAS DAD I NEEDED TO STAY POSITIVE I NEEDED TO BE THERE FOR ALL’ Fair to say I was probably in robot mode to an extent but as long as my tribe of girls were OK then that was fine.
As we grew in confidence with caring for Niah the hospital staff grew in confidence of letting us take more of a leading role in looking after her daily needs, nappy changes, washing, feeding, medication…for 16 long weeks our lives were turned upside down….yes it was a roller-coaster, no it was not easy and unless you have been through it you are just never going to get it. Each and every parent at the hospital go through a different journey. They are not all the same and it has its ups and downs. Feels like more downs than ups when you are in it. What I can say is the staff saved our little girls life. From seeing staff carry out CPR on our tiny little baby to walking out of the hospital with a healthy little girl is an unbelievable feeling and one that we often wondered if would ever happen
…At last Dad was home with his tribe of girls, would like to say I could relax…but no chance!
Niah’s sisters Xanthe (aged 14) and Athena (aged 11) shared:
How did you feel when Niah was born?
A: when Niah was born I was excited. But I was scared that she might not survive.
X: When she was born I was a bit scared as I was aware of the situation. I was confused as to why it happened and how it happened so quickly. But I was excited to meet her.
How did you feel visiting Niah?
A: I felt uncomfortable visiting Niah because of all the noises and there were lots of sick babies in there. I thought she would be there for a long time as she was born so young. I was worried we wouldn’t bond and sometimes I felt like she couldn’t hear me because she was in the incubator.
X: I would have rather her been at home. There was a lot of stuff there. The noises could be scary but the nurses tried to keep it very calm.
What did you like to do when you visited Niah?
A: I liked singing to her and telling her numbers and the alphabet.
X: I really liked holding her and reading books to her. I liked holding her hand through the incubator doors.
How did you feel when you knew she was coming home?
A: HAPPY. I could hold her and no one could tell me off. I knew I needed to be careful but I wanted to hold her all the time.
X: surprised. But I was so excited wondering when she was coming home. I was asking every day when she was coming home. It felt normal when she was home as she didn’t need oxygen.
If you had to give another child advice about this experience what would it be?
A: talk to your friends or tell a close family member how you’re feeling.
X: it’s more normal than you expect it to be. It was a bit strange when we first went into the ward but you get used to it. It’s more chill than you might expect. There will be ups and downs. But it becomes more normal when you see other people going through it you can relate to. Try not to let it worry you, if you can’t hold them while they’re in hospital. Once they’re back home you can hold them as much as you want.
How are Niah and her family doing now?
Freyja & Gregg:
Niah has now been home for over a year, and she is absolutely thriving. While time seemed to stand still during our stay in the NICU, the past 12 months have flown by.
Seeing Niah happy, healthy, and reaching all of her milestones has been the greatest relief and joy. She is surrounded by so much love, especially from her two big sisters, who are always encouraging her and cheering her on as she reaches each new milestone.
We will always be incredibly grateful to the amazing staff at St Peter's Hospital and The Oliver Fisher Unit. Their skill, dedication, and compassion gave our daughter the chance to be here today, and we can never thank them enough for the lifesaving care they provided.
While we were in the NICU, it was hard to imagine a day when Niah would be home, doing all the ordinary things that other babies do. Looking back now, those days feel so far away.
To any parents who are still on their NICU journey, hold on to hope. It may take time, and there will be difficult days, but one day your baby will be home, and those long days in hospital will feel like a distant memory.
Xanthe:
It’s just like having a ‘normal’ baby. It feels like we haven’t been in hospital now she’s home.
Athena:
Great that Niah is home! The fact I can hold her for longer and hold her without being connected to wires. Being able to see and help her crawl and walk. Being able to pick her up from nursery and see the smile on her face. Love hearing Niah say her first words like ‘Mama’ and watching her taking her first steps. For other parents and families, don’t let it overwhelm you. Stay positive because if you stay positive, positive things will happen. I always stayed positive about Niah and look at her now. Parents need to stay strong and try not to think about the bad things.
If you are currently in the NICU or have recently arrived home, please visit our information and resources page for support. If Niah’s story has inspired you to raise money for the charity, we’d love to hear from you.
