We stayed in PICU for 9 days and it was the strangest time of my life. Times goes slow and fast at the same time and one minute your living hour by hour then the next nothing changes for days and some days no change is good news and other days no news is awful. It’s numbness and pain all at the same time. Everything is magnified and the highs are amazing, but the lows are the worst feeling in the world.
Looking back now, the time in PICU seems very hazy. There was a lot of just sitting and staring, vacant and withdrawn from the whole situation. I was just surviving.
We’d decided that I would be the one who went into the hospital with Freddie and Jack would wait outside. I seemed to cope with the environment better and it would help me to be near him for expressing and also feeding him once I was able to. This seems ridiculous but those were the rules. We’d message each other constantly and I’d send him photos and videos of Freddie and I’d keep popping out during the day to see him just to get out of the hospital for a bit. Things might have been so much easier if Jack could have been on there with me. Parents in PICU don’t tend to talk to one another. It’s just the slight nod as you pass one another in the corridor. It’s strange as they are probably the only other person who can comprehend what your going through at that time but also the last person you want to speak to. You don’t want to burden them with your story just as you don’t want to hear theirs.
In PICU there is a panic alarm at each bed. I’ll never forget the first time I heard it sound and the gut wrenching feeling I got as I was walking back into PICU, praying that the alarm wasn’t for Freddie. Thankfully it wasn’t, but I remember being completely amazed by how the whole team just knew exactly what to do, almost like it was so well rehearsed. There is usually one bedside nurse to each patient but when the alarm sounds, they just calmly move to one nurse per 2 patients, get the equipment they need and make their way to the bay that needs them. It was so smooth and reassuring. All the doctors and nurses in PICU were outstanding and they really made an effort to keep me informed and involved with Freddie’s care. Even to the point of changing nappies when he had a catheter fitted, which seems completely pointless to most people but when your baby is 3 days old and you still haven’t changed a nappy, it feels amazing just to do something.
Then day three hit. If you’ve had a baby before you’ll know all about ‘Day 3’. It’s the one the midwives worn you about! When your hormones seem to peak, and your milk starts coming in. Even with Georgie’s straightforward birth, day 3 was a hard one but this time around it was one of the hardest days I’ve ever had to drag my self through. I was utterly exhausted as I’d hardly slept since before Freddie was born. Then when I did sleep, I was having to wake up every couple of hours to hand express. My breasts were sore, engorged and my nipples were cracked and bleeding from using the wrong size flange on the hospital pump. My mum and Jacks parents came back up to visit us that day and I remember breaking down to mum. I was so worn out and felt like I had no more fight in me. I wanted more than anything to hold my baby but knew I couldn’t, and I was missing Georgie so much. Freddie still hadn’t fully woken up from the sedation which was starting to make me very nervous. They said that because he was swollen and retaining fluid, he therefore wasn’t passing much urine meaning the sedation drug wasn’t working its way out of his system as quickly as they’d like. The doctors said they would give him the rest of the day to see what happened and if there was still very little movement by the end of the day, they would intervene. Thankfully by the end of the day he started to wriggle his toes when I tickled his feet and by the next morning, he was starting to do slightly more movements. I remember sending Jack a video of Freddie just poking the very tip of his tongue out and we were both so excited! It was so hard with Jack not being allowed into the hospital. All I could do was send him photos and videos to try and make him feel like he was there too, but I really don’t know how he coped with just waiting around for my updates. It would have driven me mad.
I still have a photo on my phone from day 3. It was 7pm, I was in the pumping room and I felt absolutely drained. I was physically and emotionally exhausted and just wanted everything to stop. Now whenever I’m having a bad day because I’m feeling tired or frustrated, I look at that photo and just remind myself of how I felt at that moment. No amount of tiredness or frustration will ever compare to that moment and if I got though that day, I can get through any day.
Thankfully day 4 came along and the big, dark cloud from the previous day started to lift. We were moved into some more permanent accommodation and we found that we could start finding our own little routine. We’d wake up and walk round to the hospital together, Jack would wait outside or go for a walk while I went in to get the update on how the night went. The doctors then did their morning ward rounds about 9am and during this time you’re not allowed to be on the ward so Jack and I would go for breakfast. Luckily some of the lockdown restrictions were starting to be lifted so a few restaurants were open for takeaways so we’d grab breakfast and sit on our bench wondering what the day would bring. We’d then head back to the hospital, every time Jack would walk me round and have to leave me at the door. I’d go up to PICU and get the update from the nurse. By this point Freddie was starting to stabilise. His heart was starting to cope better with the blood supply demand, and he was starting to try to breathe for himself. The doctors started discussions about taking him off the ventilator which filled me with hope. They explained that once he was off the ventilator and stable, we could be moved to the dermatology ward, then once he started doing normal baby things like feeding for himself and gaining weight, we might be able to go home. This was music to my ears and I finally felt some relief. It felt like there was finally some light at the end of the tunnel. It might be a way off but at least I knew it was there and it sounded so promising.
Later that day I finally got to hold Freddie. This was the first time I had been able to hold him since just after he was born and it was the most amazing feeling. It’s all I’d wanted for days and even though he was still connected to the ventilator, it was the best and most meaningful cuddle I’ve ever had. I was overwhelmed with emotions and began to cry. I finally felt like I had my baby back and it filled me with the determination and drive that I’d started to lose. It also made my milk production ramp up a gear. It’s definitely true that oxytocin does wonders for your milk! I sat there for well over and hour just staring at this baby in my arms. I couldn’t believe that I was finally cuddling him.
During the time in PICU, the doctors found that Freddie’s stomach was struggling to absorb my milk. They took the decision to hold off giving him milk and just keep him on a glucose solution and give him some antibiotics to see if there was a stomach infection. After a couple of days they tried him with a couple of millimetres and he seemed to absorb it much better but with the decision looming to remove the ventilator, he needed to be nil by mouth ready for that. It was so hard pumping all this milk that I couldn’t give him.
After spending most of the day in the hospital, we’d then leave to get some dinner, pump some more milk and call our families. Then around 9pm we’d walk back round to the hospital to spend a bit longer with Freddie before heading back to bed. Around day 4 the swelling in my legs and feet peaked and became so sore. After spending the whole day on my feet, I would be incredibly swollen by the evening and I only had a little pair of daps with me. My feet felt as though they were on fire as we walked back round to the hospital each evening and between that and my caesarean wound, I was a complete mess but nothing was stopping me from kissing my baby goodnight.
During the next few days Freddie continued to get stronger but as he wasn’t getting any milk and the swelling was going down, he seemed to be shrinking. His heart was still stable as they continued to decrease the medication and they continued to monitor his breathing for the removal of the ventilator. Everyday they would say if he has a good 24 hours they could remove it the next day but every time he’d have a small episode during the night which would mean he needed to have another good 24 hours before they could try again. This was such a roller coaster and it just kept repeating over and over again. I know I just needed to be patient and it was better to wait until he was completely ready to avoid coming across issues and him needing to have the ventilator put back in which would mean sedating him again. But I’d ran out of patience. I felt so desperate to get off PICU and start the road to home that I didn’t want to wait. This only made the lows so much harder to cope with and by day 6 I couldn’t do it anymore. We decided that Jack would spend the day in with Freddie for day 7 and I would have a break.
This seemed like a great idea at the time and I knew I needed to rest. My body had been through so much in the last week and I’d not given myself time to acknowledge that. The day started quite well and Jack’s excitement and enthusiasm to see Freddie made my heart want to burst. He hadn’t seen Freddie since he was bought up to GOSH a week ago.
During the day Jack did an amazing job of keeping me updated and I tried my best to rest and catch up with family but then my brain seemed to go into overdrive and realise that this was the first time I’d really been left alone and everything hit me like a bus. All the traumatic emotions that I’d not allowed myself to acknowledge from the past week came flooding in and I crumbled. Then for the rest of the day I went further and further into a dark pit recalling everything from the day of his birth.
2pm, this time last week we were getting ready to go into theatre and Jack had just come in from the car park. We were so excited and ready to meet our baby. 2.35pm, this time last week he was born! 4pm, this time last week was when Jack had to leave us. 4.30pm, this time last week was the first and last time I was able to breastfeed him. 6pm, this time last week Freddie was taken away from me.
I spent the afternoon trying to avoid talking to Jack as I didn’t want my downer to ruin his precious time with Freddie. I wrote this note on my phone that afternoon and still find it harrowing to read now.
It hurts.
It really fucking hurts.
I feel like my heart has been ripped out of my chest and now there's just nothing.
I want to hold him. Kiss him. Smell that baby smell from his head and just breathe it all in. Feel his skin on mine and hold him so close to me.
I have never felt pain like this. I feel helpless, lost and lonely.
A mother should be there for her baby, tending to his every need but there's fuck all I can do to make him better or make any of this go away.
I'm fed up with being told I need to be patient and things will happen in time. I don't have time, I want my baby now. I have already missed out on his whole first week and I'll never get those days back. They were stolen from us and it’s not fair.
Why my baby?! What the fuck did I do to deserve this?
I should be with him, not scary strange people in face masks and gloves. It should be me changing his nappy and feeding him.
Every bottle of milk expressed makes me feel sadder and sadder knowing that he can't drink it at the moment, and it will just sit in the freezer. How can I expect my body to keep making milk when I have no baby to feed?
I want to hold him, look into his eyes, and tell him everything will be OK, but I can't promise that it will.
I want to wake up in the night and see him asleep next to me in his moses basket not wake up and see a breast pump that has replaced my baby.
I want him to cry out in the night and for me to know that I am the only person he needs at that moment.
To say that this day was hard would be a huge understatement. I felt like I was losing my mind. That I was living someone else’s life and not my own. This kind of stuff doesn’t happen to normal people so why was I experiencing it?
My amazing friends had arranged for us to all have a video call that evening to try and take my mind off things but I ended up cancelling as the last thing I wanted to do was talk to anyone and found even the thought of holding it together for an hour or so too much to try and cope with at that moment. Instead I went to the shop and bought myself a few cans of gin and tonic and a big tub of chocolate and waiting for Jack to get back. I’ve always been great at drinking and eating my feelings.
The following day I was back in with Freddie and I felt so much better. I was back where I belonged and could be there for him. I still felt bad that Jack couldn’t be in there, but I really couldn’t have coped with another day outside of the hospital. PICU had become my own little comfort blanket and even though I couldn’t do anything to help Freddie, just being there was helping me to be able to survive this trauma.
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