Our NICU baby, Leo Gianni.

As some of you will know from Instagram, my beautiful boy Leo was born at 34 weeks gestation due to severe Interuterine Growth Restriction (IUGR) and therefore was a Neonatal Intensive Care Unit (NICU) baby.

That’s a lot of big words and initialisms, what do they mean??? IUGR basically means that there is something preventing the baby from reaching his or her growth potential and the pregnancy needs to be monitored closely, with most IUGR babies being delivered early.

I had a terrible pregnancy I was incredibly sick with hyperemesis gravidarum (HG – extreme morning sickness) and somehow managed to get hyperthyroidism (Graves’ disease) as well, but that story is a very long one and you can read al about it on my previous blog.

Due to the HG and Graves’ Disease I was high risk, and was closely monitored to make sure that my pregnancy continued. Up until 30 weeks, Leo was measuring average  which oddly enough was around the same time my vomiting from the HG started to reduce and my thyroid levels started to normalize. As I was under the care of a private obstetrician I was scanned regularly, and at the 30-week scan Leo’s size was slightly smaller than he should have been so I was sent to have an in-depth growth scan. It was at this point where I decided to change obstetricians because I felt as though the Doctor we were seeing was not on the same page as us as to how we were going to manage the situation. That is when we found Dr Bryan Kenny and he was an absolute godsend!! He was caring, compassionate and most of all, he wanted the same thing we wanted and that was to keep our baby in as long as we could. Dr Kenny took his time dealing with us and he explained everything in detail to make sure we understood what we were facing. We made every decision together and as we were first time parents navigating our way through a pregnancy that was completely unpredictable this meant so much to my husband and I.

The full growth scan showed that Leo was small but still happy and everything was ok, at this point we and Dr Kenny were crossing our fingers that Leo was just genetically small and that everything was still ok in there. Even with all the technology available these days there is only so much they can know about what is actually happening in the womb. It was recommended that the scan be repeated in another two weeks to see if there was any more growth, it was a long two weeks but I remained hopeful and waited for every kick to know that he was ok. By 34 weeks (excuse my French)  shit well and truly hit the fan!! Leo’s growth was limited and nowhere near where it should be but more importantly his stomach measurement had started to shrink!! This was a major cause for concern because when a baby’s stomach shrinks it means they are in the final stages of starvation, it seems he was getting no nutrients even though all placenta and cord scans were normal. When a baby cannot absorb nutrients from the placenta it starts to take from his own liver stores and therefore the stomach shrinks. Dr Kenny wanted to deliver him right there and then. I remember sitting there with my hand in Steven’s and looking into Dr Kenny’s eyes, I could see how sorry they were and how truly upset he was to have to deliver this news to us. He more than anyone was rooting for a better outcome for our pregnancy. He told us as gently as he could but our tears started flooding. My ears felt hot and I could feel the sweat on my forehead. I heard Steven say “does it have to be today? Right now???” I begged Dr Kenny for longer, I pleaded for another way as I desperately wanted to keep my son inside for longer. All I could think was he isn’t ready, he hasn’t had enough time to grow, what will this mean for his future health. Dr Kenny placed his hand on top of mine and said, “we need to do this Dianne he needs to be born but I’ll be with you every step of the way” and he really was.  Leo was delivered by emergency caesarean within 24 hours at 1.9kgs (or 4.1 lbs) tiny!

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When Leo entered the world, he let out a mighty roar and was so brave even from those early moments. We spent 3 weeks in NICU/ special care and it was a rollercoaster of emotions I wouldn’t wish upon anyone.

What’s it like to have an IUGR premmie baby?

I’ve never had a healthy full term baby but I do have a lot of nephews and nieces and from what I understand it’s completely different. For the first few weeks Leo didn’t feel like he was mine, there was very few things I could actually do for him and as a new mum it broke my heart. After my c-section I was only able to hold him for a short moment before he was whisked away to NICU for immediate attention. It was almost 24 hours before I could hold him again and to me it felt like eternity. Leo was put on Continuous Positive Airway Pressure (CPAP) breathing support because his little lungs were struggling with so much fluid on them. He just wasn’t ready to be born so breathing was such a challenge for him. It’s amazing how we take something so basic as breathing for granted, when you see your tiny baby struggling for each breath it’s puts everything into perspective.

Leo was in an ISOLET humidity crib for 8 days, he had so many needles and pain inflicted in those first few days even remembering it brings tears to my eyes. It’s just gut wrenching when you hear  your tiny premmie baby cry and there is nothing you can do. I wasn’t even able to hold him to comfort his cries as we couldn’t touch him often because too much stimulation would hinder his development. Leo was severely jaundice and spent days under UV lights trying to improve his liver function, those were particularly hard days because we were not allowed to touch him at all. There were many medical challenges and setbacks Leo faced and Steven and I learned so much along the way, most of it went over our heads but we did our best to try and understand and ask questions if we didn’t. There wasn’t much else we could do but every day we would do skin to skin kangaroo cuddles for an hour and it was the best part of my day,  although that hour would always go so fast. It was such a beautiful day when he finally graduated to an open cot and we could touch him freely, we were so proud of his progress and felt like we were one more step closer to coming home.

Leo was fed via a nasal gastric tube as he was too little and weak to suck on his own.  I would express breast milk every few hours at his cot side and they would put my milk down his tube. There is something very primitive and healing about being able to feed your baby and it was really hard for me to watch the nurses do it for him rather than for me to be able to breastfeed my own son. Eventually I could do his tube feeds as well and then as he got stronger we were able to try breastfeeding. It was so very difficult for him to latch onto the breast because of his small size and he would get so tired after just a few sucks then fall asleep. I persisted and had a lot of help from a lactation specialist but we really struggled, looking back it was one of the hardest things about that time for us as I struggled with the guilt and pressure I put on myself to breastfeed. When you have a baby that isn’t well and you know breast milk is the best thing for them you feel an intense amount of pressure to do the one thing you can for them at that time but nothing I did was working. The one thing I had going for me was a fantastic milk supply so finally a beautiful nurse named Helen suggested we give him a bottle of expressed milk as he could not go home until he could drink all his feeds himself. Until he could do that, the nasal gastric tube had to stay in but she explained that we could always use a bottle now and work on breastfeeding later as he got stronger. The bottle was so much easier for him and finally I could see the light at the end of the tunnel.

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The hardest part of our NICU stay was that after five days (once I had healed from my surgery) the hospital discharged me and sent me home but our Leo had to stay behind. It broke me and went against every instinct I had to leave my baby. I cried more than I ever had before and struggled to put one foot in front of the other and leave the hospital. My bones felt heavy and I was like a magnet to him. I am blessed with an amazing husband who is an incredible father, he was my rock and was unrelenting the whole time. He had the weight of the world on his shoulders those 3 weeks and he never once wavered. It was with his support that I was able to make myself go home. It wasn’t easy but together we coped and made it through.

For the next 2 weeks we were by Leo’s side as much as we possibly could be. This meant 12-15 hour days at the hospital as we were told the more we were with him the quicker he will go home,  not that I could have beared to be anywhere else anyway. I had amazing support from my wonderful family and incredible friends. The visitors helped because anyone who has ever had a baby knows… they sleep a lot! Premmies sleep three times as much as full term babies, so all you do in NICU is sit and pump, sit some more and pump some more. It’s incredibly exhausting and mentally draining.

I was so grateful for my best friend Rachael she visited almost every day bringing coffee, magazines and some laughter. when she would leave even the nurses would comment how lucky I was to have a friend like her. The truth is I am lucky. She is pretty amazing and she made that time of our lives so much easier. she was the first one other than steven and I to hold Leo and she loves him like he was part of her own family. As soon as he was born Rachael went out and spent a fortune on preemie sized clothing for Leo and delivered a whole bag of clothes to the hospital for us. If it wasn’t for her he would have had nothing to wear (other than hospital donated clothes) Having something to dress him in when he was finally able to wear clothes was a priceless gift. Its not until you face a challenge like NICU that you stop and appreciate just how lucky you are and we are so incredibly  lucky to have Rachael and her family in our lives.

It takes a special kind of person to look after NICU babies and our Nurses were just incredible. There was one nurse in particular named Shelly and she was always so bubbly and bright and making us laugh. She knew exactly what to say and when we needed to hear it. She would call us “star parents” when we could do something new for Leo, but I will never forget how she really took the time to manage our wellbeing too. Shelly would send me out of the nursery for breaks and say ‘go enjoy a coffee in the sunshine, I promise to call if Leo takes his first step or says his first word’, it was nice to hear someone make a joke because everyone around you tiptoes around you in fear that they will break you further. Those small breaks really kept me sane because hearing the same beeping of the monitors and machines for 15 hours straight can drive you crazy.

More days passed and Leo got stronger and grew bigger; I cannot tell you the sense of pride you feel when you see your child have such a fighting spirit from such a young age. No matter the obstacle he pushed back and he showed us how determined he was at every opportunity he could. More milestones were achieved and finally he graduated from NICU… but there was one last test – Rooming In. The hospital gave my husband and I a room and we got to keep Leo with us for 2 nights… no help was offered (only the phone was there in case we needed to ask a question or had an emergency) and I’m am proud to say we never had to ask for help. He finally felt like ours and we knew exactly what he needed.  After those two days we were discharged and I watched my husband carry the capsule to the car as a proud father and I buckled him in tightly like the protective mother I had become the moment I first saw him on the ultrasound screen.

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When we got home I held him for hours and hours and we sat there and stared at him for hours and hours. Those 3 weeks felt like 3 years but it was all finally over now the journey really began.

Our little miracle, our strong little lion. Our missing piece. He made us a family and we couldn’t be happier.

Dianne

XO

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