WARNING: Some images in this story may be traumatic for those currently going through their NICU journey.
How does one really describe a place like NICU? Until you have walked this journey you will never quite understand. I didn’t. I knew nothing about it before ending up in there. I didn’t even know babies could survive at 28 weeks let alone earlier. My previous births were full-term babies (37 weeks) who came home with me. Babies I got to hold after I birthed them. This for me, was foreign.
Having twins on board, there was an expectation that they would be early and could end up in NICU. Despite knowing this, you simply cannot prepare for it. Our boys were born by emergency C-section at 28 weeks and 2 days when my smallest twin Charlie stuck his foot in to my cervix. Thankfully we were already in hospital due to previous complications from PPROM (which I have wrote about here) and we were able to be taken away immediately to deliver. Within an hour both the boys were born and whisked away by neonatal staff for resuscitation procedures and oxygen. I remember one of the Neonatal staff showing me a plastic bag as I was getting cut in to and explaining this is what they would put my babies in to keep them warm like little roast chickens. The trauma of that image and that sentence has stuck with me.
They were then brought past me on the theatre table in their incubators so I could briefly meet them before they were rushed off to NICU. Neonatal staff told me they were both doing well. Charlie had struggled quite a bit at the beginning with an Apgar score of 2 and was quite bruised from the delivery but overall the staff were happy with their progress.
I was in recovery after my C-section for about an hour before I was wheeled down to NICU on my hospital bed to see them again. To be honest, that first night was a blur as I was very unwell from coming off the anaesthesia and I was only able to sit with them briefly before I was taken to the maternity ward where I spent most of the night vomiting.
The next day as soon as I woke up I wanted to be by their side. I was taken down by wheelchair and at the front door there is a handwashing procedure before entering to protect them from germs. We were in Room 1 which was the highest intensive care unit for super premature or sick babies. I remember it being very loud the first time I entered the room. Alarms were going off in every direction as nurses scurried around different incubators and it was really overwhelming. Seeing my babies covered in different lines, oxygen masks and blue lights was also incredibly terrifying. Their tiny fragile bodies looked too small to handle everything they were given.
A nurse came to my side and introduced herself and spoke about how they were going. They seemed to be doing well so far after their rough start to life. I was even able to hold Charlie that day and I still remember how scared I was holding his tiny body but also how I just felt so in love with them already without barely seeing their faces. I was shown how to do their cares and this would be something I would continue to do for the rest of their journey. This included changing their nappies, checking their temperature and giving their faces a little sponge bath as they did a mask change.
I met with doctors who described their different lines and what fluids they were on and the first full day seemed to be relatively ok. That night I went back to my room around 8pm to try and get some sleep. I was woken around 2am with a knock at my door.
“Are you baby Charlie’s mum” a voice asked. My stomach dropped and my heart started pounding.
“What’s happened?” I jumped up in bed in absolute fear. I remember feeling so dazed from being woken from a deep sleep but also like I was living a nightmare.
It was a neonatal paediatrician who firstly explained that he was ok but that I needed to sign forms for blood transfusions as he had suffered a pulmonary haemorrhage on his lungs which basically meant he had bleeding from his lungs. I was beside myself. Words were being thrown around that I didn’t understand and I just needed to be by his side so she took me down to see him. I wept uncontrollably when I first saw him, and I cry now as I rewrite this experience. Dried blood lined his mouth and he had been put on to a ventilator to help him breathe which was a big oxygen tube down his throat and it looked horrifying. His entire tiny chest was pumping rapidly from this machine and I think I cried inconsolably for about half an hour until I was unable to keep my eyes open anymore and asked to go back to bed. I had asked all the questions I could think of and knew he was stable for now.
The next morning I was a bit more coherent and found out more information. I was told that a pulmonary haemorrhage wasn’t something they saw often in NICU (but they had seen it before) and it did have a high mortality rate (thanks for telling me that docs-that great medical beside manner). They had ordered an x-ray for his lungs to see if he had a PDA as that was often the cause and started him on morphine & paracetamol for the pain and to help close it. He also had a giant IV line in his skull which looked awful but that was where his best vein was apparently and he was under blue light for jaundice. I wasn’t able to hold him of course as he was just too fragile (and it ended up being six days before I could). Instead I held Freddie as I sat and talked to Charlie through the little holes in his incubator.
From that night on I was unable to sleep properly. I lived in fear of the same thing happening where I would be woken from my sleep to some traumatic news and that’s where my NICU PTSD started. I feared the private number coming up on my phone to the point where I asked nurses not to call unless it was an emergency over night. I told them I would always call myself when I woke up to pump around 2-3am to check in and get an update.
Freddie’s start to life was better than Charlie’s. He seemed to just be cruising along without any issue although I later found out that his umbilical line had haemorrhaged and they found him bleeding on his first night in. I didn’t find this out until he was discharged. He did amazingly with his breathing and was trialled off CPAP at 16 days old and lasted around 36 hours before he went back on high flow.
On day four I was discharged from hospital to return home. It is the most UNNATURAL feeling in the world to go home from the hospital without your babies. I felt numb and this was the way I would feel for the majority of the 10 weeks. I was too afraid to feel much but at the same time I felt absolutely everything. I was running on auto-pilot which was so hard with my two older boys at home because I really had to put on a brave face to avoid passing any trauma on to them. They had already struggled through me being in and out of hospital with the pregnancy during Covid so I was really conscious of how much they needed me at that moment.
However, this wasn’t easy and so many nights I would cry at the dinner table. They would hug me and ask what was wrong and I smiled through those tears and told them I just wished their brothers were home sitting with us at dinner time. The big boys got to meet their brothers two weeks in to their stay because of Covid and it actually worked out best because I was afraid it would be too much for them at the beginning where Charlie wasn’t well and just how tiny they were. They were so excited to meet them and it was such an emotional experience. They would only end up visiting two more times during their 10 week stay due to Covid restrictions and I know that was really hard for them.
Every day became much like groundhog day where I would wake up, drop the kids off to school and preschool and head to the hospital. I would grab my coffee on the way up and head to their side where I wouldn’t leave until roughly 4pm when I would head back to pick up the kids and home to make dinner. Most days consisted off kangaroo cuddles for roughly 2 hours at a time with both babies together or 1.5 hours individually if one of them was struggling a bit more than the other. In between the cuddles we would do their cares, a quick lunch break and lots of singing and telling stories.
One of the hardest parts of NICU is letting go of the control. Having to ask someone else to hold my babies was excruciating. I knew inside that obviously the nurses and staff knew best with regards to premature babies but it still hurt and when a nurse told me to stop talking to Freddie when he was sick so he could rest at one stage I was so so upset. I understood but it didn’t make it any easier not being able to comfort them whenever I wanted too.
I soon became familiar with all of the alarms and could differentiate between which ones were serious and which ones weren’t. There were actually nights I would be at home cooking dinner and the sound of those alarms would be ringing in my ear. They are constant and loud. In the beginning whilst the twins were still so premature they definitely had a lot of desaturations in their oxygen levels, mainly Charlie due to his lungs.
For those who don’t know there are different types of oxygen that a premature baby graduates from usually. Most babies will start on CPAP, however if they are really struggling or become sick this is where they are intubated (put on a ventilator) like Charlie was with the haemorrhage (and I later found out he was also intubated 6 hours after he was born but was extubated before I arrived down the following morning). The doctors don’t like to keep a baby intubated for long because often it can do internal damage so they trial them on CPAP as soon as they believe it is ok to do so and when the baby is on the mend. After CPAP, they usually go to high-flow which is a nasal mask and then low-flow and then off completely. Sometimes they skip the flows and trial them straight off CPAP. It’s really a trial and error situation and every baby handles it differently.
Charlie continued to improve after the haemorrhage and thankfully never went backwards. The dried blood from his lungs did continue to come up his tubes and I was always frightened that it was going to happen again but thankfully the paracetamol had worked. He did have to have a blood transfusion when it happened but blood transfusions I learned were something extremely common in these premature babies and our boys ended up having between 2-3 each. They actually improved a lot after them and you could tell they were happier with how alert they were.
Freddie continued to mainly just feed and grow until around four weeks old when he got sick and my entire world fell to pieces again. Because infection can be rampant in a place like NICU, the nurses test for infection markers every few days. Freddie’s markers had come back slightly higher on this particular day but he presented absolutely fine, very alert and happy and I had been holding him for hours with no concern. Overnight the nurses called me and said his temperature was rising and they wanted to put him on a course of antibiotics as a preventative. Of course I panicked. Every possibility ran through my head and I couldn’t sleep.
The next day I went in and he had IV’s in his tiny arm. He still looked like he was fine and it just goes to show how dramatically things can change in NICU. That night I was woken again by one of our regular nurses to say he was deteriorating quickly and his infection markers had sky rocketed. His was constantly having de-stats (drops in oxygen) and they needed to intubate him. I was hyperventilating at this stage and I couldn’t even get out the words to tell my husband what was going on. It felt like my world was closing in just as it had the night I woke to Charlie’s haemorrhage.
The next morning my husband took off work to come in to the hospital with me. I was so fearful of what I was about to find with Freddie. He was so puffy from fluid and he was on four type of antibiotics to combat a multitude of different types of infections as they tried to locate what it was. One of the swabs came back confirmed as staph which is a common infection that usually stems from somewhere but they could not locate where it was coming from.
His stomach was rock hard and very round so they suspected N.E.C. At the beginning of our NICU journey I joined lots of NICU Facebook pages and read multiple articles and one word that was thrown around a lot was NEC and it sounded terrifying. You can imagine as soon as I heard that word, I broke down again. I just kept thinking to myself, how did this happen? he was doing so well. I then started blaming myself thinking he had caught it from my skin from lying on me (as many of us carry it on our skin without knowing) but I soon snapped out of that and told myself there was nothing I could have done differently to prevent it. The surgeons came up and took a look over him and ruled out NEC which was reassuring. They ceased all of his food to give his stomach a break and he started responding to his antibiotics. They ruled it as late onset sepsis (blood infection) which is horrendously terrifying as an offset of the staph infection. After two days he started to make a great improve and they were able to extubate him and put him back on C-PAP. I didn’t hold him for five days as he recovered and it was so hard not to comfort him but I knew he needed to rest.
After Freddie had recovered from his infection, the boys were ready to move in to a cot finally at five weeks old (33 weeks). I was so excited to have them out of their incubators and be able to see them more freely and pick them up when I wanted instead of constantly asking someone else if I could hold my own baby. They were still so teeny at around 2kg and even their prematre clothes were too big for them. It was also around the time we gave them their first bath and they loved it.
About a week after them being in their cots they were also able to move in to the next room. We had been in Room 1 intensive care for 6 weeks and it was bloody tough. Even though we could have moved out a lot earlier, our NICU was overcrowded so there was no space for us to move. We were also down the end where the sick and very premature babies would come in to and it was heart-breaking watching families live through the traumas of what we had endured those weeks earlier. I really wanted to give them a hug and tell them I understood. It was just all a bit much in there.
When we moved in to room two, it felt like we were starting to progress towards home. The boys were now 34 weeks and I had been introducing them to the breast a little every day to see how they would go. Freddie latched on straight away and it was such a special moment although he didn’t suck for long but it was so good to see he had interest. Charlie was still on and off CPAP but he also latched on amazingly well. It was so exciting to have them both showing an interest in feeding as babies don’t tend to learn how to breastfeed until the 36 week mark. At this stage I also stayed overnight to try breastfeeding for a full night and they did well. Just after the boys turned 36 weeks we got to move in to Room Six, the final room before discharge as both babies were no longer on oxygen and it felt like home was within arms reach.
I remembered people warning me at the start of our journey that it was one step forward, five steps back and it truly felt like that for us. Soon after moving in to Room 6 the twins both started sniffling. At first we thought it was just from the feeding tubes in their nose but it soon grew in to coughing and sneezing. They had to be put back in incubators and be tested again to see what virus it was. My heart broke. We were getting closer to going home each day and this was just another step backwards.
They had blood tests to check strains of the cold virus and on day two Charlie started struggling with his breathing a little so he had to go back on CPAP which meant he also had to go in to a different room because they didn’t have the machinery for that in Room 6. I honestly felt like I kept getting punched in the gut. You know that feeling where you feel sick to your stomach? Now both my babies were separated and I had to run between two different rooms to be with them. I was truly being pulled in two different directions. No results ended up coming back from their blood tests so they just put it down to a common cold but they had to stay in the incubators until they were symptom free and that ended up being an entire week, however Charlie came back off oxygen after two days so he was able to be reunited with Fred. That was really tough because I wasn’t able to hold them to avoid spreading germs nor was I able to breastfeed which really halted things for us.
When they finally got out of their incubators at 37 weeks, I really wanted to focus on feeding as this was really the last thing we needed to achieve before we could go home. I roomed in again overnight to see if we could do a full 24 hours of feeding. It was a tough night. The twins woke every 1.5 hours for a feed and I felt like I was going to pass out from exhaustion. They were still tiring after their feeds but it was good to get more practice.
It was also that week that we started introducing a bottle. I had told staff that I wanted them used to both bottle and breast as with twins we would be feeding them this way at home. I would encourage any mum if they are wanting to bottle feed to ensure that your night nurses use it. Often I hear of families being held up from going home because feeding hasn’t been fully established. You can ask your night nurses to do bottles for you to get your baby used to it, if that it what you choose.
What I learnt along this journey aside from everything else was that things can change in an instant and decisions can be made quickly. All of a sudden we had a date for discharge and the next few days were to be filled with signing the twins off from all their exams and ultrasounds, having their car seat tests and finally Chance and I rooming in for the night to ensure they were fully feeding before taking them home.
On August 22nd, 10 weeks, 72 days after the twins were born we got to take them home. It felt surreal. That place had become a piece of me. Even though I so desperately wanted them home, I would miss the place. Staff had become like family and they loved our boys like their own. We were told by many of the nurses and staff that they had not seen 28 weeker’s leave before their due date in a long time and this just reiterated how strong these two little boys were after all the had been through, to fight and come out the other end as they were, was nothing short of amazing.
During their stay they had a total of 3 blood transfusions each, multiple head ultrasounds, multiple long lines, IV lines, chest x-rays, eye exams, too many antibiotics to name, morphine, paracetamol, blood tests, Lumbar puncture (Freddie), caffeine, fluids, were both intubated (Charlie twice), CPAP, hi-flow, lo-flow and a tonne of things my brain wouldn’t even be able to remember.
They were discharged on caffeine up until 42 weeks and aside from that only iron and vitamin D until 12 months of age. They are now 8 months (5 months old corrected) and are actual living miracles. They are the healthiest, happiest little bubbas with no developmental issues so far (in fact they are ahead of their milestones) and they have wowed their NICU consultant at every check up.
NICU is the hardest thing I have ever been through. There’s no possible way to explain the feeling of watching your baby/babies literally fight for their lives in front of you. Every time I relive it, just as I have writing this, I end up sobbing. The pain and trauma is incomprehensible. And we were the lucky ones. If you had of told me back then that we would be here now with these boys as they are now, I wouldn’t have believed it.
I am sharing this journey in hope that it will help other NICU mamas out there searching for hope. Searching for success stories. Searching for miracles. The same mama’s that I was when I too scoured the internet for those same stories to get me through.
My biggest advice to any families riding this journey right now is be your babies biggest advocate. The staff may know more about prematurity and all that goes with it but you know your baby. ALWAYS ask questions. Make sure you understand what is going on, get them to talk to you in layman’s terms, not medical jargon. Secondly, get involved as much as you can! It is incredibly overwhelming and they are so fragile but having even some control will help you in this journey. Tell the nurses what time you will be in and to wait for their cares to be done until you get there so you can do them yourself. They are happy to do this for you! Lastly, take it easy on yourself (better said than done). One hour at a time, literally. Things can change in an instant. It is better to not look too far forward and just focus on the now. We are the definition of a NICU rollercoaster. Lots of steps back and forward. This may not be your journey but it’s so important to take it little by little.
Here they are now! Freddie (right) and Charlie, born at 1135 & 1355 grams. Now both over 7kg and thriving. Sending love to all the parents out their riding the NICU rollercoaster. I hope this helps just one little bit and please find us on Instagram and send us a DM if you have any questions or need some extra support.
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