• Audrey

Three Premature Babies…

Hi, my name is Bianca and we have had 3 premmies…

Having had 3 premature babies, people say we are quite experienced. So I am going to try and tell our story…. All our babies were born early because I developed the dangerous pregnancy condition called ICP, (Intrahepatic cholestasis of pregnancy), the dreaded itching…

Our first baby, Cyra, now 7 years old, was born at 33 weeks and weighed 4lb 12oz, second came Rylan, now 4, born at 33+4 weeks and weighed 5lb and then the smallest Kaylan at 31+4 weeks and weighed 3lb who has just turned 1.

With my first pregnancy I had no idea how much our lives were going to change. Not only was I diagnosed with the dangerous condition called ICP, but that our baby girl was going to be thrust into this world before she was ready because her mum was very ill.

Having a baby is an emotional event and very special to all who are involved and the intense love you feel for your baby when he/she is born just can’t be explained. But when your bundle of joy is born too soon and they are whisked away before you can get a good look at them is one of the worst feelings you will ever experience. Knowing that your baby is being cared for by doctors and nurses, knowing that they are in good hands, still doesn’t make it any easier watching your bundle being wheeled away…

After an exhausting induced 3 day labour and almost being forced to have a c-section, Cyra was born with the assistance of forceps. I was lucky enough to be able to hold her for a minute… she was the most beautiful, precious angel I had ever laid my eyes on.

But just as I was enjoying the moment the medical team whisked her away, to help her cope with the simple and most important challenge in life, breathing…

I sent hubby with her to make sure that she would be ok and report back to me while I was left behind to be stitched and cleaned up. At the time I was so over whelmed with emotions that it all felt like a dream, good and bad… I was lucky enough to get a private room, but it didn’t make things easier knowing that I didn’t have my baby with me, when all I could see and hear were new mums and their babies…

Going to the NICU for the first time later that morning and not knowing what to expect was quite daunting and exciting at the same time. I was bombarded with the strict routine of washing and sterilising of hands, no excess jewellery, quiet time between certain hours, strict visitor policy etc but the scary part was walking down the corridor passing all the other babies connected to various machines. The alarms going off and beeping. I just remember thinking my baby is going to be fine, she doesn’t need anything like this until I saw her for the first time… She was in this plastic box…looking so small and vulnerable. A tube in her nose, her tiny little hand strapped to a splint with the tiniest canular, a glowing light attached to her foot and a bruised eye.

Then the feeling of dread, helplessness and failure hit. How could I help this little being? What were all these things for?

I remember that all I wanted to do was to hold her, love her and take her home, but not being able to do any of those things were heartbreaking.  And to add to the trauma of everything, within an hour of me seeing her she was transferred to a hospital an hour away from us as the NICU we were in were full to bursting.

So I travelled an hour every day to get to the NICU to be by her side. Learning what each machine and cable was for helped me understand and in turn made things less scary. Kevin would come to the NICU every evening so that he could spend an hour or two with us.

Cyra was relatively strong and healthy for her age and size. She had an IV for antibiotics because she swallowed maconium, she started off with Cpap but only needed it for a few hours and then progressed to the nasal prong for oxygen for 2 days. On day 3 she was strong enough to breathe on her own so progressed to just the apnea monitor. She also had the standard feeding tube which all prem babies have which she managed to pull out a fair few times. But she developed jaundice and was under the light for a couple of days.

I expressed breastmilk every 3 to 4 hours to make sure she had the best nutrition I could give her. I also tried to do as much as I could, by learning to change her nappy and clean her mouth and face. Changing a nappy on a newborn is tricky and scary for the first time, but learning to do your first nappy ever on a premie, well it’s even more intense. Every morning getting her update and hearing her progress was so elating that it was hard not to get emotional. But with most positives there are always negatives no matter how small, which makes your emotions come crashing down.

The day she graduated to an open cot was almost as if she was beginning to be my baby… I was able to hold her now and almost feel “normal”. After a 3 week stay in the NICU Cyra was strong enough to go home.

So when we fell pregnant with Rylan we were aware that he would be born early too due to my pregnancy condition ICP, it was just a matter of how early he would be, and after all we experienced when Cyra was in NICU we had an idea of what to expect so we would be a little more prepared. My pregnancy was a difficult one, and with all the extra monitoring the target was to get to 34 weeks, which we almost made.

Rylan was born screaming at 33+4 weeks via C-Section as not only was my blood work bad but he was breech as well and turning him would not have helped as he would just flip back to breech before delivery.

He was strong enough for me to be able to meet him for 2 minutes and to get a photo or two, but again just like with Cyra, he was whisked off to the NICU, and again I sent Kevin with to make sure he was ok and to get some photos to show me later.

After surgery the midwives were kind enough to wheel me down to the NICU in my bed to see my gorgeous little man, of which I was very grateful for. Seeing my little man in the incubator with a Cpap mask on which he only had for a few hours and a canular for antibiotics as he too had swallowed maconium, he also had the standard pulse oximeter and feeding tube, it didn’t seem too scary this time as we kind of knew what to expect.

The next morning, Rylan was still in an incubator but already off the Cpap and just on the nasal prongs with a small amount of oxygen and almost straight away I was offered skin to skin and it was amazing to experience. The warmth of his little body against mine and just as I have seen on tv and had read, he wriggled himself down my chest and tried to latch on to my breast. Of course he was still a little small, but he seemed determined to feed. I was so filled with emotion, as I didn’t get to experience this at all with Cyra I burst into tears…

Rylan’s stay in the NICU was pretty plain sailing, not only were we used to the machines and procedures, but he progressed every day. What made it stressful and different this time round was that we had little Cyra who was 4yrs old at the time who needed us too. She was so confused as to why mummy or her new baby couldn’t come home. We couldn’t lean on family to help care for Cyra while Kevin and I cared for Rylan, as they are all abroad.  So hubby concentrated on caring for Cyra and I spent my days in the NICU caring for Rylan. Again I expressed every 3 to 4 hours, to make sure he had enough milk and I went into the NICU every day.

I’m not sure but maybe because of the more difficult and confused times we had with Cyra, Rylan’s journey seemed not easy but definitely different. At the time we had different stresses; I was torn between my 2 gorgeous children. I felt my duty was to be with my baby in the NICU, but seeing my little girl crying for my attention and dying to help with the care of her new baby brother was really hard. We were lucky that Cyra didn’t seem to be too fazed by the machines making all their noises and she was never scared to visit Rylan with my hubby.

So when Rylan was strong enough to go home after just 10 days it was a real relief. Cyra couldn’t wait to get her first cuddle when we got home.

Kaylan’s story however was very different…

Again we knew that our baby boy was going to be born early and again it was just a matter of how early he was going to be. We were aiming for 37 weeks at least.

If I thought being pregnant with Rylan was tough, being pregnant this time round was a whole different ball game, I had severe hyperemisis gravidiam (severe vomiting), so was hospitalised 4 times for dehydration and for the first 4 and a half months of the pregnancy I was on bed rest and to top it off I also developed gestational diabetes during the pregnancy. So I had loads of monitoring. Kevin would make the kids lunch and dinner before dropping Cyra at school and we relied heavily on our friends to collect and drop the kids off. The kids didn’t like it that mommy was so sick, but we were lucky enough that they were absolute stars during this period.

We made arrangements with my mum who would be coming from Australia to help out when baby arrived and seeing as she missed the last 2 of her grand children’s births she was determined to get here for Kaylan, until…

The day the consultants decided to deliver came as a complete shock to everyone.

After seeing the consultant for one of my routine appointments he suggested that we get the steroid injection for baby’s lungs just incase baby decided to come early and because I had the gestational diabetes. I had to stay in hospital for the night to be monitored. The steroids hadn’t been in my system for 12 hours when the consultants insisted that we deliver baby as soon as possible as my vital organs were starting to show signs of shutting down. I remember thinking I was only 31 weeks pregnant, that it was 3 weeks earlier than we were planning but that things can’t be too bad, as Kaylan would only be 2 weeks earlier than my other two who were born at 33 weeks, how much more complicated could things be? Oh how naive I had been…

We now had 2 other kiddies at home to think about, hubby couldn’t look after them as I needed him with me and we don’t have family close by so we had to call on a close friend to look after them for us while we went through a roller coaster of a delivery.

Kaylan was delivered by emergency c-section, he did cry when he came out which made me think that he was going to be ok. There was a large team of paediatricians and nurses waiting for him, so as soon as he arrived there was a lot of hustle and bustle and he was whisked off before I could even get a good look at him, which made me start to worry. Kevin went with him, mainly to give me an update once I was in recovery and to hopefully get some photos.

Our little man was rushed to the NICU because he was fighting for his life. The steroids did not have the opportunity to fully work, so his lungs were not ready. The doctors tried Cpap, but he still didn’t cope well enough so he was intubated straight away. Kevin didn’t leave his side until he was stabilised.

By the time Kevin came to find me I was in recovery. I requested to go and see little man but my consultant insisted that I stay in bed and rest as I had a lot of scar tissue on my incision and that my body had and was going through a hard time. The NICU was also busy so the midwives couldn’t wheel me down in my bed like they did with Rylan. So reluctantly I agreed to just go down to my ward on condition that I was to get updated regularly. And to the nurses credit I was.

The next day I was very eager to get to little Kaylan, so I pushed myself to get up and go, but the pain was too much. So I had no choice but to wait for Kevin to take me. But things weren’t so easy this time, as he was caring for my other 2 little monsters at home, he couldn’t just come and go as he pleased. We had to plan things now. Luckily my mum was coming but she was only flying in from Australia in 3 weeks. So we just had to cope as well as we could for now, it wasn’t easy but we had no choice. We also planned ahead as my mum was only able to be with us for 2 weeks, and the rule of thumb for prem babies is that they can only go home on or by their due date which in Kaylan’s case was 9 weeks… So we asked Kevin’s parents to come out too and luckily they were able to come for 4 weeks.

By the time I got to see my precious little bundle it was much later that afternoon. Looking at him in his incubator, he was so tiny and looked so vulnerable. He had progressed to Cpap during the day, so he had his Cpap mask on, a canular for antibiotics as he too had swallowed maconium, his feeding tube which went through his mouth, a cardiac monitor which had 4 cables, the standard pulse oximeter cable attached to his foot and 2 names bands. He also had a UV light. I barely knew where to touch; his skin was so pink and looked so delicate. His nappy which was a prem nappy which came up to his chest…

I was so desperate to hold him, but was told that he was having a hard time adjusting to breathing with the Cpap and that we shouldn’t disturb him by picking him up, so unfortunately no cuddles; I was heartbroken.

So I spoke to him through the Perspex and just cupped my hand over his shoulders as he was on his tummy. He was so soft and delicate…

Disappointed and aware that Kevin had to head back to get the older kids, we didn’t stay long…

Kevin wheeled me back to my bed, helped me get cleaned up, said our goodbyes and off he went. I really broke down in tears that night, I felt so helpless, alone and frustrated with being in so much pain and not being able to get around by myself yet. I almost felt like I had been abandoned because Kevin couldn’t stay with me and help me because he had to care for the other 2 kiddies who also couldn’t understand why I had gone into hospital just for a checkup and never came home.. And then get told that their baby brother had been born and they could not meet him yet.  What also added salt to the wound for me, and I know because I had been through it before, was that I was in a general ward and I was the only mum without her baby.

The next day Kevin brought Cyra and Rylan to see me in the morning as it was coming up 2 days since I had last seen them, it was great to see them and it lifted my spirits, even though it was just a short visit as Rylan being so small gets bored quite quickly and trying to be accommodating to the other new mums the kiddies never stayed long.

By day 4 after the surgery I was well enough to go home, even though I didn’t want to leave the hospital as that would mean I was further away from my little bundle. I needed to get home as I was ready to get into a routine and to see and spend time with my other 2 monsters who were so lost as they were not used to not having mommy around, but we had a special treat planned for the kiddies; we were going to introduce them to their new baby brother.

Cyra oo’d and ahh’d over him, I showed her how to clean and sterilise her hands and then she was able to touch him. It always amazed me how she took this all in her stride and was so confident with Kaylan. Rylan on the other hand was happy to just see him thru the “glass”, but little did I know the nurses had a treat for me too, as my little man was stable enough I was allowed to get skin to skin with him; it was the most amazing feeling, and to add to the special occasion Cyra was able to enjoy the moment with me. When we left I was in a warm and fuzzy place and couldn’t wait to get back the next day.

Once I got home I prepared my things for my daily visits to the hospital, my expressed milk, lunch box, camera and coffee mug.

After dropping Cyra off at school every morning, Kevin would drop me off at the hospital, we would all go into the NICU and he would go and see Kaylan for a short while, while I sat with Rylan in the parents lounge. Most of the time Rylan was happy just to see his little brother in his incubator for a minute then was happy to come and sit with me and draw in the parents lounge while we waited for Kevin. As usual the positive updates were great and really made our day however small the development, but then you get hit with… Umm we have found a heart murmur which brings your emotions crashing down. Doing research and talking to his medical staff they all explained that he can out grow the condition and that it was quite common in premmies of his gestation, and that we had to wait and see. So we had to stay positive that the murmur would sort itself. Kaylan was growing and developing well day by day, he still struggled with his oxygen as just as we thought he was coping well breathing on his own or lowering his oxygen his sats would drop and back on the oxygen he would go… It really felt like 2 steps forward and 3 back. Day 8 he progressed from Cpap to the nasal prongs and he had been moved from intensive care to special care, which felt like a big step, but then he developed jaundice again so was put under the phototherapy lights.

By Day 10 he progressed to the nursery and an open cot which was a great day for us, as this meant that Kaylan was getting stronger. It gave us hope that he would be home soon. He still needed some oxygen and his sats were stable, but we were aiming to get him feeding. By now my mom had arrived and it ended up being really good timing as Kevin’s paternity leave was now over. But she was thrust into our daily routine of school drop offs and dinner etc she only spent short amounts of time with me and baby Kaylan.

All was progressing slowly but still day by day, we started bottle and breastfeeding just to give Kaylan the best possible chance of feeding well so that we could bring him home, but things started looking really positive by day 26, as I was asked to stay over so that we could demand feed. I was over the moon as this to me was a sign that he would be coming home in a few days.

But then the next day Kaylan was desatting quite badly, turning blue around the mouth and very sleepy. He also wasn’t wanting to feed, so back to the high dependency unit he went. We were told then told that he needed a blood transfusion which would help as the reason he was ill was because he was anemic.

I felt so bad for our little bundle, I thought that I had broken him somehow by trying to push him too hard to feed. But by the next day he was doing much better so much better that he was transferred back to the nursery. Which was a huge relief.

After coming out of the HDU for a second time, Kaylan got stronger and he started feeding well and keeping his oxygen levels up really nicely. It was now that I was able to see the end of the long and dark tunnel…

My mum’s time with us was now also over, she and I were quite disappointed that Kaylan was not able to come home yet, as she wanted to give him long cuddles but was not able to. And I started to feel really guilty about not spending much time with her but she was awesome. The next day Kevin’s parents arrived to resume the routine at home with my Cyra and Rylan.

By day 32, it was official we were rooming in! My baby boy was almost ready to come home, I can’t explain how happy I was starting to feel. As happy as I was, I was still very cautious as anything could happen at the last moment…

So on day 35 we were able to go home and Cyra and Rylan managed to get their first cuddle. We were home for a short while at least anyway…

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#WorldPrematurityDay2021 celebrations following #COVID19 @Watford General NICU pulled all the stops supported by @Raise: West Hertfordshire Hospitals Charity @Hertsprems @NeoMates @The Kitchen Crox @HertsPrems grateful to @hertsmerebc for allowing us this safe space for our families to thrive, share and heal from the trauma of the neonatal jou