Life in PICU continued and finally on the 30th May, day 8, Freddie’s ventilator was removed. This felt like such a momentous day and I finally felt like we were starting to make some progress on the road to home. The ventilator was removed, and a nasal cannula fitted just to help Freddie adjust, after all he’d been on the ventilator for the majority of his life so far. He quickly adjusted and the oxygen was weaned as the day went on as he started doing more of the work himself. By the afternoon I was able to have another cuddle with him and they started talking about being moved out of PICU. Just as before the cuddle was amazing and it really started to feel like I was getting my baby back and gradually more and more of his face was being revealed where different bits of equipment were being removed. There were also starting to be less wires and cables which gave me some comfort to know that he needed less help. He seemed more aware of me and far more comfortable without the breathing tube. It was also much easier for the nurse to get Freddie in and out of the bed without being connected to the ventilator, so this meant more cuddles!
The following day my mum and Jack’s mum came to see us, and we decided that I would try another day outside of the hospital and Jack would be with Freddie. I hoped that having mum and Kim there to occupy me for a few hours I would cope better than the awful day I had before. Luckily the weather was nice, and we could sit in the park. It was much better with their company and it came as a welcomed distraction to talk about things other than just Freddie.
It also helped that we finally got the best news we could have hoped for. Freddie’s nasal cannula had been removed so he was breathing completely by himself and was being moved off PICU and onto the dermatology ward! I’m struggling to describe quite how this made me feel. I was obviously happy, but it was so much more than that. I was relieved, elated, excited, overwhelmed but also scared. The doctors and nurses in PICU knew him so well now and knew what was normal for him. They knew me and knew how our routine worked. What would the new doctors and nurses be like? Would they know what they were doing? Would they be as attentive as the PICU staff? Is there a pumping room on that ward? Would they store my milk?
In hindsight these were all completely over the top questions, but I was just in such a bubble that this change made me feel like my head was going to explode. I just tried to concentrate on the positive of him being moved to the specialist ward and try not to overthink the rest.
Later that day Mum and Kim left, and Freddie had been moved. Jack and I decided that I would go in to see Freddie that evening so I could see him on the new ward. It was then that I realised that he hadn’t actually been moved to the dermatology ward but instead was on a surgical ward which looks after children pre and post-surgery. I was confused by this and it only added to my anxiety further about the care they could provide for Freddie’s hemangioma. I asked why he was on this ward and not dermatology and just got the response that they are more comfortable with looking after newborns on this ward than the dermatology team and the nurses would look after him along with the other babies in the bay but he would be under the care of dermatology who would visit to discuss his treatment and recovery. I didn’t feel overly happy with this situation, but I felt as though I just had to trust that they knew best and go along with their plan.
During the first few days in the Chameleon Ward Freddie was in a bay with 3 other babies and there was 1 nurse to every 2 babies. We settled into this new regime quickly and the nurses were just as brilliant as the ones in PICU. Freddie also started a feeding plan to reintroduce milk and see how his body coped with it. It was called a high-risk Infant Feeding Plan and meant starting on 2 millilitres of milk every 2 hours then slowly increasing it until he finally reached the recommended amount for his weight. It was amazing to know that he was getting my milk again, but I still felt frustrated that I couldn’t feed him myself. He tolerated the milk well and within a few days he was up to full feeds through the feeding tube.
The new ward came with new challenges as well as new wins. With fewer cables it meant that we could start doing some more ‘normal’ baby things. I could change his nappy when I thought it needed doing, not when some one told me. I could put some clothes on him, albeit they were far too big, and he had his hand in a splint to stop him from trying to pull out the IV cannula in his hand. I could also get him out for a cuddle whenever I wanted to, and I found myself just sat cuddling him for most of the day.
It was nice to have the company of the nurses and with the slower pace than PICU they seemed to have more time to chat to me. They were also happy to take Freddie from me when I wanted to go out to see Jack and I never felt like I was leaving Freddie alone. Plenty of times I would come back in and find an empty bed where Freddie would be off with one of the nurses wandering around the ward.
By the 3rd day on the ward I was finally able to start trying to breastfeed Freddie and this was the news I’d been waiting for. My milk had come in well and I was pumping good amounts, but it just wasn’t the same. Feeling him latch on for the first time since the day he was born felt so right and he knew exactly what to do. I felt so proud of both of us. Him for instantly knowing what he needed to do and me for believing and trusting in my body to do this. It had been far from easy and had been the reason for many tears but knowing that I persisted and stayed strong made me feel like Wonder Woman!
Later that day I gave Freddie his first bath which was something I’d imagined we’d be doing at home as a family not on a hospital ward with a nurse helping me but I was still grateful to be able to do these normal life things.
The following day we were moved out of the bay and into a private room. This was because Freddie no longer needed constant observation from the nurses and to help prepare us for life at home. As I wanted to exclusively breastfeed Freddie, I needed to move into the room with him so I could be there anytime to feed him. We decided that this would be a good time for Jack to go home and be with Georgie. Freddie was stable and I felt emotionally strong enough to stay there without him. We also didn’t know how long we would be able to keep the flat for given that I was no longer staying there. We also didn’t want to take it up unnecessary when there was probably another family in desperate need of it. I felt happy that Jack was going to be with Georgie and that she’d start to get some kind of normality back in her life. I was missing her like crazy but knew we were on our way to getting back to her and she’d finally get to meet her baby brother.
Being in the private room bought its own challenges for us, one of these was extreme loneliness. I couldn’t just go out for a walk with Freddie as they wouldn’t allow him off the ward and I had no one to watch him for me while I popped out to get some food or even have a shower. I constantly felt as though I needed to wait until he was asleep to leave him. This was until one of the nurses started her night shift and offered to take Freddie while I went to get some dinner and have a shower. This small gesture meant so much to me and gave me the boost I needed to get me through the final few days.
Where Freddie has been zero by mouth for so long and just on the glucose solution, he had lost a lot of weight and this ended up being 20% of his birth weight. I was feeding him as much as much as I could, but he still struggled to gain weigh as fast as the doctors wanted. They decided to keep us in for a few more days, just until his weight loss was at a more acceptable level for a newborn which is between 7-10%. We finally hit the magic numbers and could go home on the 8th June.
I’ll never forget making the call to Jack telling him to come and get us. We were both so excited and couldn’t wait to get back home as a family.
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