Sophie Cooke - Lydia and Edith

Lydia

In April 2014 I found out I was expecting my second child. After a previous complicated pregnancy with my eldest I knew that it wouldn't be a smooth ride, but nothing could prepare me for what lay ahead.

I was 22 weeks gone when I started having contractions. But thankfully after a short hospital stay and some close monitoring and some steroids, they eventually stopped. These contractions would come and go over the next few weeks and I spent a fair amount of time in the GWH.

At 30 weeks I was diagnosed with Obstetric Choleastasis. A condition that had affected me in my previous pregnancy.  Unfortunately though, this time it was a lot worse. I was in hospital every other day having tests and being monitored.

It was the 2nd of December and 6 weeks before my due date. I had been having tightenings again, so I decided to take a bath in hope it would ease them. As I got out of the bath there was a small gush of fluid. Worried, I went for a lay down and text my husband. Feeling better, I got out of bed and as I did so, there was a second gush of fluid. I called my husband and he came home from work to take me to hospital.

When we reached the hospital, test confirmed that my waters had broken, but by then the contractions had stopped. I was admitted over night and the following morning I was induced due to the risk of infection.

On the 3rd of december at 10:58pm, after only 4hrs and 58mins of labour Lydia Grace Juliette Cooke was born weighing 5lbs 4oz. As soon as she was delivered, the room quickly filled with doctors and nurses, and they soon took her away to SCBU. I lay there shocked and scared. It took 4 hours and lots of persuasion before I felt brave enough to go and see her.

My husband wheeled me round to SCBU at 3am. It was complete sensory overload. I didn't know where to look first. The lights were off on the ward but it was lit up with the blue lights of photo-therapy, numbers flickered on monitors in green and red. There was a steady beeping of the monitors, that to this day lives with me. I shall never forget it. Sometimes all it takes is the beep of a supermarket scanner to send me straight back to that first night.  Next thing I remember is a nurse directing me to an incubator. Inside this little plastic box, was a tiny baby covered in a mountain of wires and tubes. I couldn't bare the sight of it. I asked to leave, and I wouldn't see her again until the morning.

After some much needed rest, I was visited by a nurse and I was encouraged to express some milk for my baby. She sat with me for about an hour, collecting tiny droplets of liquid gold. As soon as we had enough, I went back round to SCBU. Feeling more confident this time, I gingerly placed my hand inside the incubator and touched my daughter. She felt so warm from the heated incubator, and her back was all hairy like an old mans.

We were informed that she had repository distress syndrome and pneumonia. She was barely breathing for herself, and had required CPAP and was now on high levels of oxygen and optiflow. She was receiving antibiotics for the pneumonia, and they showed us a chest x-ray that she had had. You could barely make out her lungs. The antibiotics had to be administered intravenously. 

She was also jaundiced and required photo therapy several times. Babies look so strange under that bright blue light, wearing their funny little googles. Almost like they are getting a tan.

I particularly remember one kind nurse, I think her name was Lucia. On our first day on SCBU, she handed us a little bundle of books and a DVD. They were from the charity Bliss. My husband and I devoured the information in those books. It felt like we had been given small source of power. We all of a sudden understood some of the medical terms that the doctors were using, we felt more in the loop. It gave us the confidence to actually ask what was going on and why. Whereas before we were simply too in shock to question anything. I am glad we got that confidence, because the nurses were only too willing to take the time to explain everything to us. They even helped explain things to our then 4 year old when we couldn't explain ourselves why her baby sister was hooked up to machines. One nurse even gave her an activity pack to keep her from getting bored, something we still have to this day.

On days that she was well enough, the nurses were keen to get get us involved in her care, never have I ever used so much antibacterial hand gel! Sometimes I think I can still smell it on my hands! The nurses even taught us how to syringe feed her. It really helped us bond with her despite having a perspex wall between us.

It was heartbreaking leaving her behind every day. It felt like we would never leave the hospital with our baby. The nights were so hard, as I was still having to wake up to pump, yet there was no baby to feed. I felt like part of me had been torn away and left at the hospital, and in a way it kind of had. I am so grateful to the nurses for always being there at the end of the phone, always happy to answer at 2 am when I was awake pumping. It felt good to know how she was getting on when I wasn't there.

I will never forget the day when I walked into SCBU and Lydia's incubator had vanished! In its place was a little cot and inside it my tiny baby was wearing clothes. Such a simple thing that is normally taken for granted but Lydia had been wearing only a nappy for 2 weeks and it seemed like such a step forward.  Things moved quickly after that and she was soon in the low dependency unit.

After a few days we were invited to stay in overnight in the parents room with Lydia. I wheeled her cot into the room and shut the door. A room with just me and her in it was pure bliss, and yet terrifying at the same time. It was reassuring to know that help was just outside should we need it. Thankfully we didn't and I spent the night breastfeeding and staring in wonder at my little girl. The next morning we were told Lydia come come home. Despite waiting weeks to hear those words, all of a sudden I felt scared. Not because of what lay ahead but because I was scared they might change their minds. Lydia under went some final checks and a car seat test, I held my breathe through everyone anticipating that she might fail at the last hurdle. But soon enough they said we could leave! I have never power walked so fast, eager to actually take in the fresh air with my baby in tow.

Alas, It wasn't to last and a week later we were back. Lydia was very sleepy, and I couldn't rouse her to feed. She was jaundiced and we spent 23rd of December in hospital. I sobbed, and sobbed at he prospect of spending Christmas in hospital. Thankfully her levels weren't high enough to be treated and we were allowed home. For good this time.

Lydia's not had the easiest journey since that day, and has suffered with speech delay and anaemia as well as a host of other illnesses, and she is due an operation. But despite this she is thriving. She turned 3 and she amazes us with her funny personality. She doesn't miss a trick and she is always being cheeky. We are just so grateful for the doctors and nurses in SCBU, because without them she wouldn't be here with us now. Its the greatest gift anyone has ever given us.

Edith 

In January 2016 we found out we were expecting again. A prospect that made us nervous. Having already gone through SCBU once, we were keen to avoid it again. However it would seem fate had a different idea, and already patterns started to repeat themselves. Again I was in and out of hospital with contractions early on, and at 35 weeks I was diagnosed with obstetric choleastasis again. I was so close to reaching full term that I felt sure we were out of the woods.

At 37 weeks my liver consultant instructed my induction as he felt it was unsafe for me to reach my due date. We were happy with this decision as we are aware that after 37 weeks choleastasis patients have a higher risk of still birth. We felt confident that having reached this “full term” checkpoint that it would be smooth sailing from here on out.

After 1 hour and 54 mins Edith-Jean Lauren Fiona Cooke was born weighing 6lb 8oz. This time no doctors flooded in in anticipation of an early arrival. It was very calm and we held our baby, and took in her features. She was here and she was safe. I felt gush of love towards her. It was then in that moment of sheer happiness that the midwife brought us down to earth with a bump. She told us that she wasn't happy with her breathing, as she was grunting.

Then a doctor came in, and then another and another. It felt like deja vu. Soon she was rushed off to SCBU and we were left alone again. This time it was my husband who broke down, when he had been so strong before. This time it was I who had to do the persuading. When we went round to SCBU it was dark again, just like before. Immediately the smells and sounds hit me, taking me back to our stay with Lydia. How were we back again?

This time though we knew it all, we were greeted by the nurses like old friends. Every single one of them remembered us from before. It made it far more bearable, as we felt more comfortable. Edith was diagnosed with TTN (transient tachypnea of the newborn) and required oxygen and optiflow. She was also jaundiced and required some photo-therapy. Although not as many sessions as Lydia.

This time around the biggest difference in our stay was that I got to stay with Edith from day one. Not having to leave my baby, well there are no words. I could go to her in the night and feed her. There was no pumping required! The nurses reminded us of what to do when we needed it, but mostly when it came to her cares we already knew what to do, so they let us get on with it. They didn't interfere unless it was necessary which meant so much to us. It gave us a bit of normality.  

Edith really struggled with weight gain, so the nurses really encouraged us to feed feed feed! Their support really helped when it felt like all we had done was feed and she'd still lost weight. Despite being born at 6lb 8oz, when she was finally discharged, Edith only weight 5lb. It took a lot to get her up after the initial loss, but I knew we'd get there, the nurses cheering us on.

Edith is still under the care of the paediatricians, as she still struggles with weight gain. But other than that she is doing well. She is cheeky just like her big sister!

Having 2 children have to stay in SCBU is without a doubt the hardest most painful thing I have ever had to endure. Give me labour any day! I still cant walk past the door to SCBU without my breath catching in my throat. I recently took a donation into the hospital and it felt like my legs had turned to lead and the corridors stretched on forever. 

Words can not express how grateful we are to everyone in SCBU, for looking after our daughters when we couldnt. We will forever be in your debt.