I had a difficult start to my pregnancy with four weeks of constant bleeding and as a result a perpetual fear of having another miscarriage. My 12-week scan was normal and I was hoping I could finally relax and enjoy the rest of my pregnancy. Instead, we left the scan and headed straight to the emergency department.
This is Jennifer’s story:
On the way to emergency and while waiting to be seen, I was Googling like mad – what did it mean to have a short cervix? I found out that a short, weak, or incompetent cervix is one of the leading causes of late-term miscarriage. I felt sick and terrified. I simply couldn’t face losing a healthy baby at 20 weeks just because my cervix was too short. I was admitted to the hospital and given my options. We went ahead with a cervical cerclage and progesterone. Ever since the cerclage (stitch) was placed in I never felt comfortable. I felt constant pressure especially if I was standing. Instead of feeling 20 weeks pregnant, I felt like I was in the late stages of pregnancy.
As much as I tried to resist and people told me not to, I couldn’t help but consult ‘Mr Google’. Sometimes what I read made me feel so anxious and sick I just didn’t know how I would get through the day and other times I read things that inspired me and gave me hope.
One of the things that I read that gave me the most hope was these parent stories on the ‘Life’s Little Treasures’ page. I feel like I read every single one!
For the next three weeks, I anxiously visited the Pre-term Labour Clinic at the hospital so they could measure the cervix and monitor the stitch. Each time the stitch was holding, the cervix was closed and the length shortened only slightly. Each time I came home feeling optimistic that I had moved one week closer to viability. When I reached 24 weeks I felt some relief but this didn’t last long.
At 24 +4, I had some tightening pain much like Braxton Hicks which I had with my first pregnancy. After 6 hours it was clear they were not Braxton Hicks and they were now very painful and regular. At 2 am we made the first of many late-night trips to the emergency department. I was admitted to the birth suite and was given medication which luckily stopped the tightening and pain. I stayed a few days in the hospital before returning home again. One week later the exactly the same thing happened again. I was told by the doctors that in addition to the incompetent cervix I also have an ‘irritable uterus’ and I can expect these episodes to continue and potentially get worse. And that they did.
Another week later on the 27th December at 26 weeks the pains started again. I went to bed that night feeling mild pain but as the night progressed it got worse, more painful than the previous two episodes. I got up to get some pain relief and go to the bathroom and it was then I noticed a large bleed. I woke my husband, we grabbed our bags, the two-year-old and once again made our way to the emergency department. The doctors were fabulous in reassuring me and were able to deliver some good news that my cervix was still closed. But a bleed is never good news so I needed to stay in hospital for much longer this time. I got settled into what would be my home for the next 27 days and waited anxiously for the visit from the Paediatric doctor. I don’t remember a lot of what she told us that day but I do remember I was crying the whole time. I know she went through survival statistics and health outcomes and prepared us for the worst. She left us with a pamphlet on what to expect when your baby is born at 26 weeks which I think I read 20 times over.
The next day was my 39th birthday. I had not seen my son much over the past few days so it was really special to have him there. He didn’t know or care what was going on; he got to see mummy, eat cake, blow out candles, play with the blue surgical gloves, and help open presents. After my son had been taken home my husband and I were taken on a tour of the NICU to prepare us for what we were likely to face. A birthday tour I will never forget. I still vividly remember being taken down in my wheelchair and through those NICU doors for the first time. Again, I don’t remember much of the information I was given. What I remember was seeing, for the first time in real life, a tiny baby covered in wires, laying in his isolette with mum sitting in the big red recliner next to him. I remember that mum giving me a little smile. I think it was a smile of reassurance. Something like “this is hard but you will get through it”.
Although the tour was completely overwhelming and emotional it was so important for me to be able to see and visualise what my baby’s first weeks of life would look like. Unlike some other mums who have Premie babies unexpectedly, I could prepare myself. It was heartbreaking to know that it was likely I would not be able to hold my baby straight away, to breastfeed my baby straight away, or take him home after a few nights but at least I had time to prepare. I eventually got to a point where those things seemed unimportant. All that was important was that my baby would be alive and that he would be receiving the best care possible.
The following night I woke about 4 am to more tightening and pain. I got up to go to the bathroom and as I stood up I felt an awful gush. My first thought was that my waters had broken and I felt a huge rush of adrenaline surge through my body. “This can’t be it,” I thought, I am really not ready yet. I pushed the emergency button and rushed to the bathroom to discover it was not my waters but a huge gush of blood. I wasn’t sure this was any better. Contractions started coming fast and strong. Between the contractions, my body was shaking so violently from the fear I felt like I was going to vomit. I was rushed to the birth suite and given more drugs. To my absolute disbelief when the doctors checked my cervix it was still closed. Over the next few hours the drugs kicked in and miraculously the contractions stopped. The bleeding continued and I knew then that I would be in the hospital for some time.
Hospital life was sad and lonely. I had way too much time to think and lots of sleepless nights but I felt safe. The worst part was, without a doubt, not seeing my son every day. Facetime each night is what kept going. I was lucky to have a room with a view and I spent most of my days looking out the window over Flemington Rd and across the Docklands while I listened to Podcasts. I also read a lot, kept a journal, and did lots of mindfulness colouring, things I never have time to do in real life and anything that would stop my mind from the ‘doom and gloom’ thoughts. I had lots of visits from my wonderful friends. Those that couldn’t visit sent me messages and some checked in daily to make sure I was ok. They organised food drops and meals for my husband Fabio who was on his own still trying to work full time, look after the household duties, care for our son Henrique and visit me every second day. I still don’t know how he held it all together so well, he really was my rock. While in hospital I was medicated daily to manage the contractions and eventually the bleeding subsided. After 27 days and reaching the magical 30 weeks I was able to go home.
It was Australia day and I had been home for four days when I started to feel the dreaded pains. Although it felt much like it did on so many other days, I felt today was different. At 3am things ramped up and yet again we were faced with another visit to emergency. We had no time to find someone to look after Henrique so yet again he was pulled out of bed and dragged to the hospital. Once again, off to birth suite for drugs and hooked up to the ECG for what felt like the hundredth time. I was so surprised to find that the cervix was still closed, I was so sure this was it.
My husband took my son home and I was taken to the ward. As I laid down in my bed I felt a sharp excruciating pain. I pressed the emergency button and within moments was surrounded by midwives. I got up to go to the bathroom and again a huge gush of blood. This time, before the doctors had even examined me they told me straight away that the stitch had to come out. There was too much bleeding and it was likely that the cervix was trying to open. I was crushed. I was right on 31 weeks and although I had come so far it was still way too soon for me.
Shortly after and before my husband had time to get back to the hospital the painful stitch removal was underway. As they started the process the first doctor noticed that the cervix was open and I was now 3cm dilated. She could not get all of the stitch out and even with the assistance of the gas, I felt agonising pain. It took another two attempts and more specialists to remove the stitch. My husband arrived just as they were finally able to extract the last part. I felt enormous physical relief. The pain and pressure I had been feeling daily since 20 weeks were now gone only to be replaced by more painful contractions that were getting closer and closer together. No drugs were stopping it this time. The doctor told me I would have my baby before sunset that night and he was right.
I never thought I would feel any happiness while going into labour at 31 weeks. Every other time I thought he was coming I was petrified, this time I was still very scared but I knew it was going to happen and when thinking about how I would get to meet my baby boy soon and I felt the smallest ounce of joy overriding the fear. It all happened so quickly after that. My waters broke and 3 contractions later I was pushing. Within 30 seconds about ten people came rushing into the room preparing for the delivery. I don’t know if it was a doctor or a midwife but I just remember someone saying “focus, come on push – he is not being monitored anymore”. I detected the faintest bit of panic in her voice. The fear started to escalate but I did it, I focused, and with one final push and he was out. I heard a good scream, saw a full head of thick dark hair and he was gone. Santino had finally arrived at 8 pm on 27th January 2020 weighing 1.7kg.
When I finally left the birthing suite two of the doctors who had seen me on my numerous visits over the past 10 weeks stopped to congratulate me. One of them said that each time she saw me come back she was so happy because it meant the baby still had not been born and that they never expected me to get so far. I remember walking back to my room thinking about how strange it was to be thankful for giving birth at 31 weeks. For that moment I was happy and content that my baby was alive and earthside.
Five hours after he was born and at 1 am in the morning I made it to the NICU. I’ll never forget the first time I saw Santino. Covered head to toe with wires, CPAP machine, and a feeding tube. It didn’t feel real and he didn’t feel like he was mine. The next morning after a few hours of sleep I got my first cuddle. I was so amazed that despite the number of wires and cables you can still hold and cuddle your baby. Those first kangaroo cuddles were emotional but so beautiful.
Santino spend 46 days in hospital. I visited everyday and sometimes it almost felt like going to work. I would get up get early to get my son ready for childcare then prepare my bag, milk and lunch for the day and head off to the hospital. I would rush home at the end off the day to cook dinner and see my 2-year old son before he went to bed. My husband would go to work and then most nights go to the hospital for his visits after work. The days in NICU were long, emotional and sometimes very lonely.
The majority of both our families live overseas and interstate and Fabio had to work so I was on my own almost every day. I was, however, lucky to make connections with a few of the other long-term mums, in particular, one mum whose baby was born at a similar gestation to me. We had many long chats about things I don’t think anyone else but a NICU mum would understand. On the really hard days, I would often try to remind myself that I was one of the lucky ones as there are many parents who never get to take their babies home. Every day my boy was growing bigger and stronger and I cherished the hours and hours of Kangaroo cuddles we had.
One of the most unexpectedly difficult aspects of having a Premie baby was breastfeeding. I breastfed my first son until 15 months and it was such a beautiful and positive experience. I never imagined how difficult it would be with a Premie baby. Exclusive pumping in those early days just didn’t work well for me. I had extremely painful chronic Mastitis that left me hospitalised and a number of other issues that made pumping so painful that I was on a constant rotation of 3 different pain killers to get me through each day and each pumping session.
On many occasions I just finished pumping and immediately felt physically sick about having to go through the pain again in another 2.5 hours. Even when I was not pumping I was in constant pain and could not hold my 2-year old and had to sleep upright for 6 weeks! The NICU staff were amazing not only with bubs but with me too.
On one of my worst days, one of the NICU nurses personally took me to the emergency department and waited with me until I was seen because she knew I couldn’t do it on my own. I vividly remember one of the doctors saying to me “you know you can stop”, but I couldn’t, I desperately wanted to do what was best for my baby and have the same positive experience I had with my first son. After 6 weeks of pumping every 3 hours religiously (even overnight), I fed my son for the first time. I can’t even describe how wonderful this was, certainly one of the fondest memories of my journey.
Finally, it was time to go home. Santino weighed 2.8kg and to me, he seemed huge! I was planning a big celebration with all my friends who had been the most fabulous and wonderful support team I could have asked for. They knew we had so little family and they supported us in every way they could. But sadly, after 4 months of uncertainty, sleepless nights, and anxiety our celebration was never meant to be. Within days we were forced into the first of Melbourne’s lockdowns due to the Covid -19 pandemic and we were faced with another 8 long months of uncertainty, sleepless nights, stress, and anxiety. The first 10 months of Santino’s life have been lived in a hospital or in lockdown. We have just emerged from the second and very difficult lockdown and I am getting to experience some normality for the first time in over a year. It feels good.
In a few short months, Santino will be one year old. He is super cute, cheeky, and strangely, just how I pictured him to be all those nights we spent laying alone but together in my hospital bed. Translated his name means ‘Little Saint’ and to us, that is what he will always be; Santino, our little Saint.
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