It’s doubly challenging having twin prems. Mum Amy shares her story of her 30 week twins Ollie and Riley and how they got through serious complications, surgeries and separation.
At just 6 weeks pregnant I went for my dating scan little beknown to me the shock I was in for, TWINS! We had joked about having twins after the rough start to pregnancy I had already experienced but I guess we weren’t so wrong. The day I found out I was ecstatic, the next day I cried in bed and binged anything on Netflix that involved pregnancy or babies, I was truly convinced that this was not for me, I couldn’t look after twins, could I? I suffered from severe morning sickness, fatigue and body aches right up until about 20 weeks, then I went back to work on office duties, but by 22-23 weeks I still wasn’t right and the sickness returned. I wasn’t coping with anything more than getting out of bed so I decided that my body was trying to tell me something and finished up at work. I had my baby shower the day I hit 26 weeks pregnant, it was so surreal suddenly that I was having two babies! We were blessed and surrounded with love.
At 28 weeks I had been feeling extra unwell one day and then as I was getting into the shower I felt a gush of fluid, I immediately panicked that my waters had broken but convinced myself that I must have wet myself instead and thought I was just overthinking it. A week later after a few days of cramping, dizziness and discharge (more than likely my mucus plug) I was being rushed to Monash Medical Centre in active labour. We managed to stop the labour and I didn’t progress further than 1cm dilated. They found infections in the boys placentas. For a week I suffered from what we called ‘fits’ where I would become severely hot, sweaty, shaky, nauseous and then suddenly become freezing cold and restless before then falling asleep. Sunday came around and we had made it to 30 weeks which had been my goal! I had another fit, worse than the rest and they decided it was time. Both babies were healthy inside and they didn’t want to risk complicating their condition as I became increasingly unwell so we were taken for an emergency caesarean. The caesarean experience itself was actually very calm and as joyful as a scary premature birth could be! The team were great, the room was filled with at least 20 people with a team for me, and each of the babies.
At 7:39pm our sweet Oliver was born at 1308g, shortly followed by his sweet little brother Riley weighing 1263g born three minutes later at 7:41pm. Ollie had a slight struggle with his breathing and was put straight onto C-PAP but Riley was self-venting so the nurse from NICU whisked him from the cot and let me hold him for a few seconds. Then off went dad and babies straight to the NICU. I’ll never forget the strange experience, we were texting each other giving updates. I was talking to him about my recovery and he was sending me a photo of my babies?! It was the strangest feeling! The nurses had told me they would wheel my bed to NICU so I could meet my babies but unfortunately decided they were too busy, I was so exhausted and drained and deep down angry. I just wanted to hold my babies. We started making phone calls and telling our families the boys had been born, I lasted until about 12:30am before I snapped and yelled at Tyler (my partner) to take his phone call outside (in fairness he was just chit chatting by this point with no baby related talk) and the intense pain hit me. I was not prepared for the severity of the post caesarean shakes and pain I would feel, luckily I was blessed with the night nurse from heaven and she came and woke me every time I was able to have a new pain medication so I could keep a good schedule, I had her for the next two nights and she was pure bliss. I’ll never forget the incredible treatment I received.
The next day I met my babies in one the most unnatural ways, but it was beautiful nonetheless. I got to hold Ollie for the first time skin to skin and the complete overwhelming love and feeling that hit me when he was placed on my chest will never leave me. I held him for 3 wholesome hours until I had to go back to maternity for my next round of IV antibiotics. Later that night I returned to NICU and got to hold Riley. It felt like my world had been completed. For the next few weeks, Ollie had a very uneventful journey. He gained weight, tolerated good volumes of milk, self-vented a few times but also returned to C-PAP many of those times to take some pressure off his little body. He spent 4 weeks in NICU followed by 2 weeks in SCN which was honestly a miracle, and by 6 weeks old weighing just 2kg our first baby boy came home. On discharge we did come to learn that he had suffered from a brain bleed at birth and blood sugar issues which had thankfully both resolved themselves, he does have congenital hypothyroidism which for will be managed through medication for the rest of his life but feel blessed that we have so far walked away with so little complications.
Riley’s journey was a little more intense. His first week of life was full of many complications, the first on day 2 when he was struggling to breathe, his chest regression was severe and his work of breathing was high. The neonatologist gave us two options; he could either be intubated or we could try a new therapy which would inject a solution into his lungs to help keep them inflated, it was fairly experimental still but we decided to try it and it worked perfectly. This was the first procedure of many we didn’t know were coming, it felt scary and I was so intensely worried about my babies, but it wasn’t the worse of what was to come. Over the next few days Riley was fluctuating and doctors queried a bowel malrotation (twisting in his bowels) but when they performed their contrast study tests there was nothing to be seen. On day 7 of his life I spent my first few hours away from the boys, we went to Centrelink to sort out our payments and my car was also getting serviced. At about 4pm we were headed into the hospital, we made a quick stop at the shops and Tyler ran inside. When he came back to the car I was on a heart stopping phone call, he could see the look in my eyes and I think he knew immediately it was about the boys. If I was standing I would have fallen to my feet, they told me that Riley had crashed and was being taken immediately to surgery. They had done another contrast study but this time they were able to see visible twisting (apparently it can twist and untwist). I cried the whole way into the hospital, I was inconsolable and so frightened. Writing this now I have tears running down my face and I can feel that awful sick feeling in my stomach. I basically ran from the car into NICU and tried to be as strong as I could when I walked in, I didn’t want to bring any negative energy into the room. He hadn’t been taken for surgery yet so I asked if I could quickly hold him and as the nurse started arranging this suddenly his team arrived to take him to theatre and my heart sunk. I kept thinking what if my baby dies and I never got to hold him alive one last time. I tried to be brave as I held his hand, stroked his small body and told him we loved him and it would be okay. He was lifeless, limp, discoloured and not himself at all, he was struggling. We were able to follow him down to pre-op where I told him again I loved him and took him all in just in case.
I recently found a video on my phone that we had recorded telling him we loved him and videoing him because we thought that was going to be it. They told us surgery would take around 3 hours so I sucked in my tears and dragged myself to the café to get some dinner, we tried to act normal and just pretend it wasn’t real. After dinner we walked back up to NICU so I could pop back onto the breast pump and sit and wait. As we walked into his room I couldn’t even look at Ollie, I couldn’t understand how we could have such a thriving bub and one who was possibly dying. I was so angry and overwhelmed with emotion. Only a few minutes later the nurse got a call saying his surgery was over and that he was stable, I cried. My baby was alive and okay. A few more minutes later his surgeon walked in to give us a run down on what happened, he said they were lucky that he caught it when they did because otherwise he wouldn’t have made it. He lost over 30cms of his bowels because it had completely died off and were unable to remove the dead bowel completely because it was getting too close to the end of his bowels. The surgeon said he had joined it together but he was 90% sure it wouldn’t take because of the dead bowel where he joined it. He said the next 72 hours were crucial and that whilst Riley was stable, nothing was certain. Without going into too much detail, with scary drops in his condition we made it through the 72 hours with no severe complications and were beyond blessed that the surgery had been successful. Dr Ram from Monash Children’s Hospital is my hero.
Our second hero was a nurse named Ali from Angliss Special Care Nursery, she saved Riley’s life at 6 weeks old after he had been transferred for feeding and growing in a smaller hospital. She came in one morning and noticed he wasn’t looking himself, she persisted with doctors and he was found to have a bowel obstruction which had been caused by the fortifier that was put into his breastmilk. He was rushed back to Monash Children’s Hospital and intubated for 4 days whilst having constant bowel wash outs, antibiotics and all sorts of treatment.
By this stage Ollie had come home so we tried to find a new normal but I found myself withdrawing from visits to NICU because I couldn’t bear to look at Riley, he was puffy and sick and it killed me sitting there with Ollie trying to be joyous and positive when I couldn’t help but compare their condition. Riley came through and showed his strength miraculously, he was home only 10 days later. Since coming home we have had approximately 7 ambulance rides, 4 hospital admissions (bronchitis x once each, apnoea episodes and severe vomiting with purple skin which is still unexplained) and between the physio, dietician, MCHN, speech pathology, endocrine team, surgical team (I’m sure there’s more that I’m forgetting) we are at Angliss Hospital or Monash Children’s at least once a fortnight, sometimes once a week. The journey of a premature baby can be long but it’s so rewarding when you get to cuddle these sweet babies and hold them each day and watch how far they’ve come. During the hardest parts and our NICU stay I would say we found most of our support within the nurses and I was blessed to make a lifelong friend with another NICU mama. My advice to anyone would be to reach out for help when you need it, Life’s Little Treasures Foundation has endless amounts of resources and I can’t recommend them enough. Go to their parents morning tea in NICU, pick up one of their NICU handbooks, order your beautiful precious prem pack and just absorb all of the support and information you can! We were also blessed with being cared for by the most incredible nurse in special care at Monash, she helped me through moments I didn’t think I could overcome and without her I wouldn’t have been able to breastfeed two babies at once and I don’t think I’d have my sanity, to this day she helps us through everything and is a rock for us.
I know you will read this and you know who you are, all I can say is thank you. For us, I would say things have relatively settled down now and we are starting to get into a good routine and normalise things much more. I am still very protective of our boys and have very strict visiting, touching and hand cleaning rules but I will do whatever it takes to keep them safe from harm. There is a lot more to our journey than this, but this is just a very short overview of the last 7 months of our lives! I’m so glad I was given the opportunity to share our story, please don’t hesitate to get into contact with us @thewaltwins on Instagram or ‘Walton Twinnies’ on Facebook. Would love to hear from you, hear your stories, answer any of your questions and I hope to start blogging some of this journey in more detail! Thank you for reading 🙂