PICU

At 1.30am on Saturday 23rd May, the NEST team arrived to take Freddie off to Great Ormand Street. He was moved into the travel incubator and had a cannula attached to his nose to help him breathe. As I stroked his little face through the hole in the side of the incubator, I felt so helpless. There was absolutely nothing I could do to help him and to make it worse I knew I couldn’t go with him. As I was only 10 hours post caesarean, they wouldn’t discharge me, and Jack would have to drive himself from home to London to meet the NEST team there. This meant that Freddie had to do the three and a half hour trip on his own. We weren’t even too sure at this point if Jack would be allowed in the hospital with him, as all hospitals at that time would only allow one parent in with a child. As they wheeled him away I felt so sad. This is not how it was meant to go. I wanted my baby back in my arms more than anything and I still didn’t really know what was going on. It started to cross my mind if I would see my baby again. What if he got worse and I couldn’t get there in time? I sat in the NICU and balled my eyes out. It was the type of hysterical crying that was totally uncontrollable. The nurses could have said anything to me at that point, but I couldn’t hear them. I just had these awful dark thoughts going round and round in my head.

The nurse helped me back up to the ward and thankfully moved me into a private room. The thought of having to return to my bed, surrounded by other new mums who still had their happy, healthy babies with them filled me with dread. Once I was settled in the room the nurse discussed a plan with me to get me discharged as quickly as possible and on my way to Freddie. She told me that I needed to make sure that I had passed urine within 6 hours of my catheter being removed and she would arrange for me to have a point of contact in London for my after care. She’d also arrange for my pain relief medication to be ready and for a doctor to discharge me first thing in the morning. This helped me start to feel a tiny bit better. Knowing that someone was on my side and helping me to get to Freddie. She understood the pain I was feeling being away from him but also had a responsibility to ensure I was medically able to be discharged. In hindsight I am grateful for this as it was the least of my priorities at that point. Even though my mum was telling me not to go anywhere until I felt ready, all I wanted to do was get out of that hospital and get to my baby. She also talked to me about hand expressing my colostrum which we could save to give to Freddie and would help my milk come in. I was so desperate to breastfeed but now that was the last thing on my mind and I really didn’t know if I could emotionally go through with that. Not knowing when I would actually be able to feed my baby. Nevertheless, I gave it a go and managed to fill a couple of syringes.

I managed to sleep on and off for about 2 hours, which I think was out of sheer exhaustion both emotionally and physically. Then at 4am I received a text message from the NEST team to say that they have arrived at GOSH safe and sound and my baby had handled the journey well. Shortly after Jack called me to say he had arrived. He sounded strange. I could tell he was panicking but also trying to stay calm for my sake. We spoke for a few minutes then he let his guard down and told me he was scared. I hated the thought of him being scared and I couldn’t be there to hold his hand or help him at all. We couldn’t face this thing together as a family, I just had to try and help him by talking him through everything that had happened whilst Freddie was still with me in Bath and what little I knew to expect from GOSH.

Jack then went into the hospital and kept me updated on everything that was happening. Freddie was initially taken into a rapid testing unit where he needed to be tested for Covid. He would not be allowed on any ward or received any treatment until they knew this result. After a few more hours the test had come back negative and they could be moved on the Paediatric Intensive Care Unit (PICU). Freddie was assessed and they advised that he was in high output heart failure due to the hemangioma. The heart failure also caused swelling and his lung efficiency deteriorate. They decided to sedate him and intubate him with a ventilator. He was then assessed by the dermatology team who decided to dress the hemangioma in a pressure dressing to try to alleviate the blood flow which would then in turn ease the pressure on his heart and help them to control the heart failure. He was connected to an ECG and they had concerns over his blood pressure being very low and his heart rate very high.

Trying to take all of this in whilst being 115 miles away was torture. I literally could not do anything. I couldn’t hold my baby’s hand as they inserted the breathing tube or hug Jack when they told him his baby had heart failure. I felt utterly fucking useless. My family needed me now more than ever and I couldn’t be with them.

Despite the nurse’s best efforts last night, it was still 1pm before I was actually discharged. They wanted to make sure that I had enough care in place with remote midwives so that if I felt unwell, I would have a point of contact. As much as I appreciated this, I knew that no matter how unwell I felt I would not be leaving my babies side once I arrived at that hospital.

My mum arrived at Bath hospital to take me to London and I have never been so relieved to see her. Sometimes all you need is a hug from your mum and as we stood there hugging in the car park, our first hug in months with Covid enforcing social distancing, I felt some of my anger, frustration and hurt melt away. Almost like Mum took some of it from me. As helpless as I felt with my baby, Mum must have felt that too with me. I was hurting and she couldn’t make it better.

We arrived at GOSH around 4pm and Jack met us outside. I jumped out of the car and hugged him the tightest I have ever hugged anyone. Then another panic attack started. I couldn’t breathe and the tears wouldn’t stop. I felt so overwhelmed by the whole situation and all I’d wanted for the past 12 hours was to be there with them but now I wanted to be anywhere but there. I knew now I was there I had to face what was happening and see my baby in that environment.

Jack, Mum and I went into the hospital and up to the PICU, I didn’t even think about the one parent rule and I don’t think anyone dared try to stop me. We were taken straight into a room with the PICU lead consultant, surgeons, doctors and the dermatology consultant. They explained everything to me about the heart failure, lungs, blood pressure and heart rate just as Jack had already relayed to me. They then advised that they wanted to take Freddie for an MRI to check for any other hemangiomas and to see where the blood feed to the main one was coming from. They then went on to explain the risks involved with this. They advised that because of the limited size of the MRI scanner and the whole process, some of the machines that he was currently connected to, the machines that were helping to stabilise him, wouldn’t be able to be connected for the scan. Also due to the radiation, the doctors wouldn’t be able to be in the room to monitor Freddie so they would be reliant on the limited equipment to alert them of any issues whilst Freddie was in the scanner. Then if there were any issues, they would need to stop the scanner before they could enter the room so they would not be able to respond as quickly as if he wasn’t in the scanner. I was then passed a consent form that I was asked to sign. The form basically said that they had discussed all the risks with me, and I was happy to proceed. These risks also included death. I didn’t imagine 24 hours after having my baby, I would be signing a form accepting that my baby could die.

I know I had every right to refuse the MRI and avoid this risk but then we wouldn’t know if there were any other hidden hemangiomas. They also wouldn’t be able to plan any further treatment for Freddie without the MRI which could also lead to death so either way we had to do something. Totally stuck between a rock and a hard place. I signed the form and told the doctors that I was giving my consent for them to do whatever they needed to do to help him.

I was then taken round to see Freddie. If I thought seeing him in NICU at Bath was hard, this was a whole different ball game. My baby had a massive bandage all around his head which covered both eyes, 3 tubes in his mouth all being held in place by a huge piece of fabric plaster which covered his cheeks and chin, the tubes just went in through a tiny hole in the plaster. ECG cables on his tummy and cannula’s in his belly button and groin. He was totally motionless from the sedation. I didn’t know where to look. Where was my precious little baby? All I could see was his tiny little button nose poking out the bottom of the bandage. I felt so happy to see him but also felt so sorry for him. He didn’t ask for any of this and what kind of a start in life is this? As much as I know I didn’t do anything to cause the hemangioma or heart failure, I can’t help but feeling responsible. I’m the one that carried him for nine months, I’m the one who grew him inside of me. I just wish I could make it go away and make all this stop for him.

Shortly after us arriving they took Freddie off for his MRI and by this point Jack’s parents had arrived to check on us. As they weren’t allowed in the hospital, we all sat outside on a park bench. They were making small talk, but I couldn’t concentrate on anything other than thinking about Freddie. Was he okay? What would the scan show? Would he make it through the scan? What if I had to come back down to everyone and break the news that he died?

Two hours passed and we went back up to PICU. Freddie was back! I was so happy and relieved that he managed it. They told us that they would need to wait for the MRI results to come back then decide on weather to do surgery or not. The surgery they had mentioned was called embolism, which is where they block some of the blood vessels to the hemangioma which then in turn slows down the blood flow. They said they would give us a call later to let us know.

Jack and I decided we’d go and get some much-needed rest at this point so said goodbye to our parents and went to our accommodation.

We were both so grateful that GOSH has provided us with some temporary accommodation for while Freddie was in PICU. The thought of having to go home and being that far away from Freddie filled me with dread. The accommodation was nothing special, but it was a bed and a shower and that’s all we needed. I suddenly realised that I’d not expressed for nearly 24 hours. Shit! Those first few days are meant to be the most important for getting your milk to come in and establish breastfeeding. I thought I’d absolutely blown my chances now. Completely torn between weather to try and make it work and then face the upset of my milk not coming in or just to give up I decided that I would give it a try. There was fuck all else I could do for Freddie at this point, but I could make sure that when he does wake up, he has my milk ready for him and that would help him to get strong enough to get out of this place. I sat on the bed hand expressing colostrum more determined than I have ever felt.

Luckily, I was still pretty numb from the caesarean and couldn’t feel my incision too much. I kept popping the painkillers religiously as the last thing I wanted was to start being slowed down by that. I knew I’d totally overdone it that day and I definitely don’t recommend walking 12,000 steps the day after having a caesarean but at the time I really wasn’t bothered about my body. All I cared about was Freddie and it didn’t matter that I had just been sliced open and stitched back up.

At 11pm they called to say they had the result back from the MRI and they had decided that they wouldn’t do the surgery now and would re assess on Tuesday. I felt slight relief that it obviously wasn’t critical enough to need immediate surgery but also slightly in shock. It was then that I realised we might be here for quite a while if they wanted to wait another 3 days before just reassessing. My mind then went to Georgie. We’d only arranged for her to stay with my sister for a couple of nights, she only had 2 pairs of pants! I felt awful, I just wanted a cuddle from my baby girl but also knew that I couldn’t leave Freddie at the moment. I just hoped that she would be having such a good time with my sister and her cousins that she wouldn’t really notice the time and all I could do was to keep speaking to her on the phone and make sure we were back together as a family as soon as I could.