Hey Guys, this is gonna be a tough one both to read and write but I think I am finally ready to tell people about the crazy and pretty intense journey we went on when Leo finally came into the world.
Leo was born on 26.03.20 at 8:33AM. I went into the hospital at around 11:30 the night before. Things were going well, I wasn't exactly enjoying myself but my labour was going fairly smoothly. Things progressed through the night and finally by about 8AM he was getting ready to arrive. Due to the issues I had with my first labour and my placenta getting stuck, there were a few extra precautions taken to try and prevent or to at least support me if it happened again. I had the monitors on my belly measuring Leo's heart rate and things seemed fine. As my contractions got stronger and I was pushing, the midwife noticed his heart rare dropping at the time the contractions were happening. There were no signs as to why but there wasn't anything to do but keep pushing. The birth all happened very quickly. I even pushing out the membrane (waters) before they had burst so they had to be popped and then of course came our bubba.
When babies are born, they are placed onto the mothers chest as quickly as possible. The midwife held him over me and was wiping him off but not putting him on me. She then asked Charli to press the alarm on the wall and the room began filling with doctors and other nurses. All the adrenaline left my body instantly and I realised that Leo was purple, not crying and not moving. The quick birth had put him into shock and caused his heart to stop. Charli and I then had to watch as they tried to do CPR. I kept asking if he was okay knowing full well that he wasn't. The midwife was holding one hand and Charli holding the other. They carried on doing the CPR but no one had said anything to us, they didn't tell us what they were doing or why. We could clearly see what was going on but of course you don't want to believe it. About 10 minutes had passed and they were still doing CPR with no progress. They had started trying something else but we didn't know what at the time. At 11 minutes old Leo received a blood transfusion, this finally made a difference. they continued with the CPR until finally at 18 minutes old they were able to detect his heart rate. It was the longest and most traumatic 18 minutes of our lives.
These two photos were the first ever of Leo. Taken not by Myself or Charli but by a midwife who stopped the doctors who were wheeling him out of the room and asked if we would like a photo as it was going to be a good few hours until we were able to even see him. At this point we still had no explanation, no idea of Leo's condition at all, we knew that he was breathing, that was enough in that moment. It was all we needed to know. We saw them wheel him out the room
and then we just had to wait for the doctor to come back and explain everything that was going on once they got Leo to where he needed to be. I remember so clearly the first sentence he said to us. 'Your son will need to be transferred to John Radcliffe and undergo a treatment for three days to minimise any brain damage that has been caused and hopefully prevent anything further.' Honestly what are you supposed to say? How are you supposed to feel? He explained the treatment (which I will get into shortly) and explained that although they can start the treatment in Milton Keynes, it could not be funded there and so he had to be transferred. We couldn't see him for a few hours until he had started the treatment and due to Covid-19 only one of us would be allowed to stay in Oxford with him. All of this was honestly such a blur and the hours we spent waiting to be told we could see him were agonising. Everything was up in the air. We didn't really know the full effect on Leo yet, we knew hardly anything about the treatment and how he would respond and we still didn't know the cause of all this happening.
The treatment he needed to have was called therapeutic hyperthermia, this involved cooling down his core body temperature from 37 to 33 degrees and this would bring the brain down to a reduced function. When the brain is starved of oxygen it causes damage to the brain. At it's normal rate the brain would try to produce toxins and repair any damage but this could actually make things worse in this case and so its best to try and stop it from happening. There is no way of knowing what brain damage has been caused until the treatment is finished. The full extent of damage from HIE (Hypoxic-Ischemic Encephalopathy) is typically not apparent immediately after birth, for two major reasons: the first is because the brain is constantly developing and we needed the treatment to stop anything becoming more damaged. Secondly the full extent of the damage might not become clear until a baby isn't able to meet their milestones for example crawling and walking. So at the moment that was our conclusion. Leo could be very seriously poorly and there was no way to know. The general condition when there has been a lack of blood of oxygen to the brain is called HIE. It can cause a range of different conditions from cerebral palsy, cognitive disabilities and hearing and vision impairments. HIE has no cure but there are treatments available depending on the affect. So, we had no idea if he was really okay. The fact he was breathing now was the positive we had to focus on until we knew more about things.
We were able to go down to intensive care about 6 hours after he was born and visit him. He was covered in wires and surrounded by machines. He had a ventilator which was breathing for him, a feeding tube, a drip for antibiotics, another drip for morphine so he could stand to be so cold and he had 4 receptors which went under the skin on his head to monitor his brain activity constantly. He then had a heart rate and blood pressure monitor, catheter and rectal thermometer. He wasn’t allowed
to be in a baby grow or anything other than a nappy because he was wrapped in this little body suit which was used to keep him cool. He couldn't be held but the incubator was open so we could touch him. It was so odd that he felt so cold. Of course that is what needed to happen but when you hold a newborn they are usually warm. Even his tiny hands were chilly to hold. We sat with him as much as we could before he was transferred because I wasn’t allowed to travel in the ambulance with him to Oxford (again because of Covid). We walked back and forward from the labour ward to NICU because I was of course still being checked over post birth and I needed to keep moving and make sure I was as healthy as I could be although it wasn't my priority I am glad Charli was there to make sure I was looking after myself.
Leo was being prepared by the transportation team at about 6pm that evening to be taken to John Radcliffe to finish his treatment. Once he had been picked up, we made the decision I would go home for a bath and make sure I had the extra bits I would need. Honestly this was the worst decision I think I could have made. Charli's dad (Phil) picked us up from the hospital and dropped us off at home, I walked through the door and I burst into tears instantly. I had just gone into hospital to have my baby and then come home without him. It was a pain I have never felt before. I was so thankful that Charli was there every step because I didn't know how I was going to pull together and except the fact that we didn't know when our son would actually be able to come home. I had my bath, packed up some more clothes and snacks which I knew full well I probably wouldn't want to eat. Phil came back to pick us up (he was honestly a superhero for us) and drove us 40 miles to the hospital. We managed to arrive before Leo which meant that Charli could see us into the hospital before he had to leave. I feel like I was constantly holding back tears the entire time. I said goodbye to Charli and followed them into the hospital as they pushed Leo through in his incubator. I was then told I couldn't go into the intensive care unit as they needed to get Leo set up to all the machines and wires. I was shown to my room on the 7th floor of the Women's ward where it was confirmed I was only guaranteed a bed for one night. We knew Leo would be in for 4 days minimum so you can imagine how stressful that was. Usually they have accommodation for parents but that was closed due to Covid, and so were all the
hotels in the area. My only option was to wait and see every morning if the bed was still free. If another patient came in that needed the bed, I would have to go home and travel back to see Leo. NICU called to tell me I could go down and see him about 9pm and I stayed with him until the nurse looking after him that night told me to go and get some sleep. Charli drove home with his dad and at about 10pm collected a very upset and homesick little girl. Lyra went to my sisters the night I went into hospital. she was woken up in the middle of the night to go and it didn't have a good affect on her. She needed her daddy to be there and of course he did everything he could to be there for her and be the support and comfort she needed when she didn't know what was going on.
Therapeutic hyperthermia is carried out for three days and then babies are warmed back up to their normal temperature and this is done super slowly. I wont go through each and every day but basically all I could do was sit and look at my son through his incubator. On the Saturday they were finally able to tell us what had caused all this. Leo had a foetal maternal haemorrhage. Basically that means he had an internal bleed and all the blood went back into the placenta and because he was born quickly that then put him into shock and stopped his heart. There isn't an explanation as to why that happened but at least we had some answers. Whilst he was in his cooling suit he wasn't allowed to be held and even once he came out of it I couldn't hold him because of the virus. I could occasionally open the little holes and hold his hand and the nurses would get me to help change his nappy too (I cannot explain how tough this was with both a catheter and rectal thermometer). On the second day I got to 'hold him' not for a cuddle or even out of the incubator but I lifted him whilst they changed his bedding and I cried haha! the nurse would change at 8am and 8pm so it was always someone different but I had one lady for two days in a row and she could see me welling up. She reassured me that she would cry if it was the first time she got to hold her baby too and after that I couldn't keep it in. Other than watching and listening to all the technical things the doctors were saying I was expressing my breast milk so it was ready for him when he could finally start milk and face timing Charli and Lyra as much as I could.
Leo was stable the entire time he was being cooled which was incredible news. They couldn't see anything abnormal in his brain activity and on the morning of the second day, they were able to take out the ventilator so he could breathe on his own but with support of a CPAP (the little tube thats in both nostrils). His antibiotics were finished by the third day and things were going okay. I wont say going well because given the circumstances still anything could happen. In the middle of all this going on, I was having to pack my bags every morning just incase they needed me to vacate my room and let someone else use it. I got so lucky that I was able to stay for as long as I did. This brings me to the Saturday afternoon and they
were able to start the very slow process of warming him back up. A lot more things can begin to show the harder his brain is expected to work,. It is very common for babies to have abnormal brain activity and seizures. If any seizures happen, then the baby needs to be taken back to 33 degrees and start the warming process again. Thankfully Leo had no abnormal signs and was warmed up steadily overnight. By the morning he was finally warm to the touch. He had his eyes open so much more and we were waiting to see if there might be a bed available in MK for him.
I could not wait for him to be back in MK for a few reasons. Of course it meant he was more stable and that was the most important thing, but it also meant I could see Lyra. I know 5 days doesn't sound like a long time but it was devastating. It isn't how I pictured her first few days after her little brother arrived. She shouldn't have seen him for the first time on a video call. She shouldn't have had to be without me for 5 days without being able to appreciate why. She would tell me that I needed to look after Leo because he had a poorly head but in the next breath be asking me to come home. Coming home and cuddling her was just what I needed. I can't imagine how Charli must be feeling having not even seen Leo since the day he was born but I am so grateful he was able to give Lyra a little sense of normal. Leo was in MK by Monday evening and I spent some time with him before going home to my own bed and some very much needed cuddles. Once again Phil was amazing and was driving me to and from the hospital a few times every day. I was allowed to visit anytime but tried to time my visits with feeding time. Monday night he got settled in and then finally on Tuesday morning I was allowed to cuddle him!!! He only had a CPAP, heart rate and blood pressure monitor by this time and as soon as they said I was allowed, I didn't want to put him down. I cried my eyes out the entire time.
By the time he was in MK the treatment was finished but he still needed oxygen support and so had to stay in. The other reason is because they needed to do a MRI scan to really evaluate what damage was done by the lack of oxygen he suffered at birth. They do this at about a week old. Things were delayed due to Covid so we were just waiting for news of when that might be. Tuesday evening and it was time to try a feed and I was so excited. Another step towards coming home. I had been expressing every 2 hours for the last 4/5ish days so I was so ready for a proper feed for the relief, comfort and mostly to start bonding with Leo more than I had been able to. Things carried on progressing, although they removed his CPAP and decided he was struggling a little more than expected on Tuesday so they out it back on. A little back step but he had shown no other signs of any issues. The wires that were monitoring his brain activity were removed once the treatment finished so we still wouldn't know anything more until he had the MRI. Thursday came and he was of course a week old by this point and I still hadn't been told when the MRI would be. Charli still hadn't seen or held Leo since the day he was born and Covid was just making everything so much more difficult. To think of the emotional trauma we had been through in the last week and I couldn't even cuddle my mum or dad for support. Covid is the reason Charli didn't see Leo at all in Oxford. He could have seen him when he came back to MK but we mad the very tough decision to leave Charli home with Lyra so she had something constant that she could focus on and keep routine with.
Leo stopped his oxygen support on Thursday and was doing brilliantly! When I arrived Friday morning I got the news his MRI would be today, that day (woohooo). We got it all done and as we where wheeling him back up to NNU they told me if the doctor signed off then I could take him home. ( I cried again of course) So that was that and about mid day Phil came to pick us up and I got to take my boy home. 03.04.20, his due date that he still managed to arrive home by. Our super brave boy ready to finally have a cuddle with his daddy and big sister. I felt so much relief in that moment. We weren’t in the clear with Leo by any stretch but I finally got to see the happy tears in Charli getting to hold his Son and the utter joy in Lyra's face meeting her little brother.
Once he was home, we decided to announce that he had be born. We had told the very closest family but there was still a very big chunk that didn't know. We didn't tell everyone he was born for the very horrible but very possible reality that we didn't know if he was going to be okay. It was a very intense, medical and scary thing to try and explain to everyone and we didn't want everyone to be trying to find out how he was every day when it was so unpredictable. The other reason was, I wanted Lyra to
be the first. She had priority and looking back I am so glad we made those decisions. I am not saying it was the best thing or even the right thing, but it worked for us and I could never than our family enough for supporting us through all this and from a distance. At this point we still didn't know the results of his MRI but he was healthy enough to come home and that was all that mattered.
The results of the MRI came back as NORMAL! Absolutely nothing abnormal or of concern. The doctors were as astounded as I was when they told me the news. This is probably the best result we could have hoped for. As I said above this doesn't mean we are in the clear as things can develop over time. As Leo's brain tries to learn new things he may struggle. From leaning difficulties to picking up motor skills it really is a complete unknown for us.
He is now 4, almost 5 months and hitting his milestones as he should. He is rolling over, gripping things, trying to play with toys and best of all there is loads of laughing and smiling. He will need to be reviewed every 6 months until he is 2 and they will evaluate each time how he is doing. Whatever comes along for us we will tackle it as a family in the same way we had to with everything else. We are beyond proud of the strong and brave boy we have and we are equally as proud of his sister for being not only a rock at home looking after Daddy whilst I was in Oxford, but for welcoming her baby brother with open arms and loving him just as much as we do.
HIE is such a rare condition and it affects all babies in totally different ways. In some cases I think about how lucky we have been to see Leo thrive at home with us. Some people wont get that opportunity and the though that we almost didn't get the chance sends shivers down my spine. In some ways I think I wanted to share this for a bit of awareness but honestly I think I needed to share it to be able to work through the emotional rollercoaster. Seeing your baby not breathing is something no parent should see. I tried to block it all out. All the sights, all the sounds from being in that room where he was born. Ignoring it helped me work though each day one by one when the treatment was ongoing and everything was so unpredictable but now, I am so glad I have been able to get this off my shoulders. I don't think I will ever feel like we can move on from what happened, Charli realised that actually thats not what we need to do. We need to accept that we have been through something traumatic and we we need to look back and realise we are not going through that anymore. I am not really sure how to end this blog because I feel like I could talk for hours about the anxiety and the stress. The guilt about leaving Lyra and Charli not getting to see him but I could. The distress and heartbreak of it all but I guess what I want to focus on is the pride and joy I have for my children, the thanks and love I have for the wonderful family we have to support us and the utter respect and devotion I have for Charli and all he does for us as a family.
Partly because of Covid but mostly because of all this Leo didn't get the celebration he deserved when he came into the world, so heres to you. The bravest boy, the best little brother, Our little lion man, Leo.
H x
