The home straight

At the end of September the outreach nurse came to see me and said that we would now be looking at the next stages of preparing Charlotte to go home. I never thought I would ever hear anyone say that. It was a distant dream. The neonatal ward had become my life. I sat down and burst into tears. I couldn’t imagine bringing my baby home and living life as a Mummy out of hospital. It was too good to be true.

Charlotte would be going home on the low flow oxygen that she was on currently. The low flow oxygen gave Charlotte the tiniest puff of air up her nose. We were told she would likely stay on this until the following spring or early summer. They did an oxygen trace and Charlotte required 0.05 litres of oxygen. The outreach team organised for home oxygen to be installed into our home at some point over the next few weeks. It was all beginning to feel very real.

It was time to start buying things that Charlotte would need when she was home. I no longer had to deny myself making lists and buying everything as it was actually happening. She was actually coming home.

We bought a Bugaboo Buffalo buggy in black. I couldn’t wait for it to arrive. As I watched my family excitedly assemble it at my parents’ house, my feelings of excitement faded and I was filled with sadness and emptiness. I couldn’t help but feel this wasn’t how it was supposed to be. I put on a brave face and pushed it around the house. I was filled with confusion. I couldn’t wait to push Charlotte around in it and take her out. I was overcome by the realisation I would get the chance to do all of this and it wasn’t just a figment of my imagination. Yet, at the same time, everything felt wrong. I would be pushing the buggy, looking at just one of my babies. I would have to struggle with getting only one baby out of the house, into the car and then into the buggy.

The next time I saw the neonatal counsellor, we discussed the feelings I had experienced towards the buggy. She reassured me it was perfectly normal to feel like that and reminded me it wasn’t my choice. The counsellor asked, “What would have been your choice?” I replied, “Pushing both girls around in a Bugaboo Donkey.” This choice had been taken away from me. This statement filled me with great comfort and still does to this day

Week beginning 26th September

As I was walking through the maternity suite en route to get lunch, I had to walk through the transitional care unit. I saw the friend I always sat with at lunch. She invited me over to her bed and explained she would hopefully be going home soon.

After hearing my news from the outreach nurse and having seen my friend (with her hospital bag and son next to her bed) I was so excited for her. She told me about how in just a few nights of her staying overnight, she had managed to get rid of the nasal gastric feeding tube and had fully established breastfeeding her baby. This started planting seeds in my mind. Whenever I was there during the day, Charlotte was breastfeeding at just about every feed.

After my lunch I walked with a spring in my step back to the neonatal ward to find out if Charlotte was ready for me to stay overnight.

I was determined to get Charlotte fully established with her breastfeeding and secretly hoped to get rid of the NG feeding tube, to be free of one less wire although deep down I knew this wouldn’t happen.

The outreach nurse was great and full of encouragement for me to stay. She also made me aware that there was no rush and only to move forward when I felt ready. Although nervous that everything was getting real and I actually was going to take my baby home in the near future, I couldn’t wait to give it a go. I excitedly phoned Connor. I think at first he was quite shocked about how things had suddenly progressed but was all for it. He was still commuting from Wetherby to Newcastle and then to Leeds and was unable to take anymore time off. He wanted to make sure that I was ok staying at the hospital by myself. I didn’t mind, I had Charlotte.

I was so excited to go home and finally pack my hospital bag.

That night as I was packing, my boobs began to feel sore. I had had a lot of trouble trying to reduce my milk supply so it suited Charlotte’s demand instead of half of Yorkshire’s. I had been given a mixture of advice which had left me quite confused about which to follow.

In the morning, after Connor had left for work, I began to feel incredibly feverish and nauseous. My boobs were on fire and hard in places. I went to express and have never felt pain like it. My Mum came over and I managed to get an emergency doctor’s appointment early that afternoon. I can’t remember the last time I felt so ill. I phoned the hospital to explain I had developed mastitis.

I was so gutted and upset. My hospital bag was finally packed yet I couldn’t even see my daughter or even move from the sofa, I was crippled by horrific pain and being sick. Why did this have to happen?

I felt horrendous at the doctor’s surgery. I couldn’t even sit on the chair because of the pain. I had to settle for the waiting room floor and half heartedly hugged my knees. I was prescribed some antibiotics.

I was unable to see Charlotte for two days and had a course of antibiotics for ten days. Despite the agonising pain, I continued expressing and feeding Charlotte. I had only just mastered feeding her and was determined to not give up.

As much as I wanted to stay at the hospital, the mastitis took a while to go away and had wiped me out. I was advised to only stay over when I felt I had fully recovered as I would need my strength, especially when Charlotte came home.

On Saturday, 1st October, I couldn’t wait any longer. I felt like I was holding Charlotte back from going home and prolonging our stay in hospital. The nurse went to find out if any of the bedrooms on the neonatal ward were free and put my name down for the one with the bathroom.

That night, Connor and I went for our last meal together at the village pub before Charlotte came home. It all felt quite surreal and I think we were both living on cloud nine and waiting in excited anticipation of walking through our front door with our baby.

Sunday 2nd October

On Sunday morning I left the house with my hospital bag in high hopes that when I returned I would have Charlotte in tow.

The room where I was staying had the phrase “Life isn’t about waiting for the storm to pass. It’s about learning to dance in the rain.” I liked this. I believed it was important that I learnt to do this. It was hard as for much of the day I felt heartbroken and just wanted to grieve for Esme but when I was with Charlotte it was hard to do so. Charlotte brought me so much joy and I didn’t want to miss treasured moments with her by feeling lost in grief for Esme. This feeling of being torn between the two extremes, of grief for my loss and joy for my survivor, stayed with me for many months after bringing Charlotte home.

When Connor kissed me goodnight and left to go home, it was a strange, exciting feeling that it was just me and Charlotte. It didn’t feel like all those nights he had kissed me and left me in the antenatal suite. I had my girl with me.

I stayed with Charlotte until I felt very sleepy and then went to bed. Charlotte’s nurse was going to knock on my door during the night when Charlotte woke up wanting to be fed. If Charlotte didn’t wake up because she was too tired then the nurse was going to tube feed her. I desperately hoped she woke up.

I didn’t sleep very well, waiting for the knock on my door in anticipation

At about 2am Charlotte did wake up. I was so excited to get the opportunity to feed her. This was the start of it. This was the beginning of what it felt like to be up all night feeding your newborn. I loved that I was now doing things in which I would have done if Charlotte was at home. I didn’t care I was up during the night, I had waited a long time for it.

I loved going in to see my little girl, seeing that she was awake and looking for her Mummy to get some food. It was the best feeling ever.

Week beginning 3rd October

Connor was back at work so it was just Charlotte and me during the day. We looked forward to him visiting in the evenings. I kept in touch with him throughout the day via messages and Facetime.

I spent the next two nights waiting for a knock on my bedroom door. There was only one occasion during the middle of the night when Charlotte was too tired and needed to be tube fed. This time it was a mixture of emotions as I was secretly pleased at having a bit more sleep, but also found this a little frustrating as all I wanted to do was to feed her and not rely on any tubes. The outreach nurse reassured me that Charlotte would get there and I should try not be in a hurry to get rid of the NG tube.

One of the nurses who had looked after Charlotte a couple of times and who I got on well with, recommended a book called Sam and Finn. I googled the book to find it was a personalised Child Loss Book and a story of hope. I read the story with tears rolling down my face. Even though it was meant for Charlotte when she grew up, I found it very comforting. I also found the author inspirational in that, although she had sadly lost a twin, she had found ways to navigate her way through life. I ordered a copy for Charlotte (and me).

I often muse over the idea that one day I will write a children’s book about Charlotte and how she remembers her twin sister, Esme. I’m going to let Charlotte guide me on that though.

Wednesday 5th October

During the nurse ward round on Wednesday, 5th October, the ward sister asked about how Charlotte was doing with her breastfeeding and after hearing how successful she was, said, “Is there any reason why Charlotte isn’t staying in your room at night?” My heart nearly leapt out of my mouth. The answer was a simple, “No.” There was no reason. Apart from sh*ting myself, I was very excited and apprehensive that Charlotte would be staying in my room that night.

We were unable to go to the transitional care unit as they didn’t have staff trained for babies who were on oxygen. I was a little gutted that we were never able to do any of the ‘normal’ things that every other mummy seemed to do but it also felt quite a luxury having my own room and bathroom.

There was the family room and television in transitional care where I often had my lunches, if Charlotte didn’t need feeding. I’d seen another couple bring their baby in so wondered if I could do the same with Charlotte as The Great British Bake Off was on that evening. I asked Charlotte’s nurse if we could wheel her around to transitional care on her portable oxygen. She didn’t see why not but went to double check before giving us the go ahead. I’m not sure many parents had done this as the staff found it quite amusing watching Connor and me wheel Charlotte in her cot around to transitional care.

There was always another couple in the parents’ room who I had met during my lunchtimes and quite liked. However, I soon learnt whoever was there first got to choose what was on the TV. By the end of my stay in the neonatal ward, I was often second in and had nearly became an addict to The Vault and Coronation Street. Luckily, they didn’t watch Bake Off, so left us to watch it.

Unfortunately, Connor had to work in the morning so was unable to stay. I don’t think I’ve ever been more scared than I was that night, after Connor had kissed us both goodnight. I couldn’t work out why I was so nervous, I’d waited so long for this, I was Charlotte’s mother, why was I feeling so terrified by the idea of it being just the two of us. I was petrified of her apnea alarm sounding and having to scream for help. What if I fell asleep and woke up to see she had stopped breathing? What if her face started to go blue? What if she pulled the oxygen prongs out from her nose and I didn’t realise. It all got a little overwhelming so I rang Connor. He listened and understood and then simply said “Just enjoy it.” “All right for him to say that.” I thought but I tried my hardest.

I scooped Charlotte out of her cot and enjoyed cuddling her, just the two of us. No screens, no other parents, no staff, no other babies, just the two of us. It felt incredible. I had waited almost three months to do this. I fed her, put her back in her cot and then drifted into a strange sleep. I kept waking up and checking her face for signs of any blue areas, listening that she was still breathing and making sure she hadn’t pulled the oxygen prongs out. Each time I checked, she was just fine.

Thursday 6th October

This was a big day for Charlotte. She had to pass her car seat challenge. This did make me laugh when I heard she had to do a car seat challenge but it also made a lot of sense. It filled us with reassurance that she would be fine in the car journey home. Charlotte basically had to sit in her car seat for the length of time it took to get home plus a little bit extra incase there were any hold ups without having any oxygen desaturations. The test would last forty minutes for Charlotte.

It was very exciting bringing the car seat into the hospital. I had watched so many parents do this during my time in the maternity suite and had wished it was me. Well, three months later, it was my turn. As I sat Charlotte in her carseat and tightened the straps, she looked so tiny. She soon fell asleep and passed the test with flying colours. Yay!!

That afternoon the outreach nurse came to see me to give me a first aid course. I found it very useful and was appreciative of her time.

That day was also the last time I saw the neonatal counsellor. I spoke with her for over an hour. It was great to talk to her and I was grateful to her. She helped me come to terms with all my mixed emotions about bringing only one of my babies home and above all gave me the reassurance that all of my anxieties and how I was feeling were completely normal.

That night, I wasn’t as nervous and managed to relax a little more and get some sleep in between feeding Charlotte.

Friday 7th October

I went home for a couple of hours to make sure everything was just right. It felt strange being at home knowing the next time I walked through the front door I would be carrying my baby girl. It was very similar to a Christmas Day morning feeling.

I travelled back to the hospital with Connor so that we only had one car there. I was excited that Connor was staying.

That night it was his turn to sit up and check Charlotte was ok. I loved it being just the three of us. It felt very special and also a bit like a sleepover.

Saturday 8th October

In the morning Charlotte passed her second car seat challenge. This meant she was free to go home on Monday. What a trooper. I think this girl was ready for home.

That afternoon it was great to see my cousin and his wife. It was lovely catching up with them and seeing them cuddle Charlotte. Charlotte seemed to love it too. An added bonus to their visit was they brought us some posh chocolates!

That evening, Connor and I treated ourselves to Marks and Spencer’s microwave meals and then wheeled Charlotte around to transitional care to watch X Factor and eat the posh chocolates and M&S mini rolls. The other couple were there so we shared the chocolates out and sat uncomfortably on the wooden chairs as the couple got the sofa first.

Sunday 9th October

Sunday was spent getting all the paperwork together.

The outreach nurse came to see us and Connor did his first aid training.

That evening, the other couple weren’t in the family room. Maybe they had gone home as whenever I had visited transitional care, they were always there. We watched X Factor, just the three of us, excited that the next time we would be watching it we would hopefully be at home.

Watching the TV, drinking cups of tea, eating biscuits, breastfeeding and watching Charlotte asleep in her cot are some of my favourite memories of the neonatal ward. I felt as if we were a real family.

Monday 10th October

The day I had dreamt of had arrived. We were taking our baby home.

After feeding Charlotte, Connor and I went down to the hospital cafe to get a big breakfast. I could just about stomach it. My nerves and excitement were beginning to play havoc.

Unfortunately, we couldn’t just get dressed and say our goodbyes. To save returning to the hospital in a few days time, we had to wait for Charlotte to get her routine head scan and for the eye doctor to come and assess her ROP (Retinopathy of Prematurity is when the retinal blood vessels do not develop normally in babies that are born prematurely). When she had been assessed previously, she had started to developed stage 1 but we were told only time would tell whether this would get any worse or become resolved. He arrived just before lunch and we were unbelievably relieved to hear it had disappeared.

All that was left was waiting for the head scan and the pharmacist to deliver her medication. The closest feeling I can relate it to is arriving at the airport, ready to go on the holiday of your dreams only to hear your flight had been delayed and they weren’t sure of the time of boarding. Or in Connor’s eyes, you wake up at 5:30am Christmas Day morning and your parents tell you to go back to bed for a couple of hours but the excitement is killing you, knowing that Santa has been.

I think Charlotte was the last baby on the unit to get her head scan. By 14:30 the pharmacist had been and dropped off Charlotte’s medication. She was on Abidec (multivitamin), an iron supplement and carobel (a milk thickener to help with her reflux).

At last we were ready. I was aware that as soon as we put Charlotte in her car seat we knew she would be absolutely fine for about forty minutes.

I was quite sad saying goodbye, a strange feeling that my life in the neonatal unit was about to finish and a new chapter was about to begin. At 15:05 we left the neonatal ward. We joked that our nerves had got the better of us and we should turn around and give Charlotte back.

As Connor and I stood waiting for the lift, we studied Charlotte’s face in great detail, looking for any signs that she had stopped breathing. She looked so different in this light. We were very close to returning to the neonatal ward when we recognised one of the doctors. I called her over and with panic asked “Does she look ok to you? She’s not going blue, is she?” The doctor reassured us she looked absolutely fine. “The bloody light.” I thought.

The lift arrived and it was full. There were two ladies waiting before us with a young girl. I remember the Embrace ambulance lady saying the lifts at St. James’s were a nightmare. At this point, ten minutes had already passed since putting Charlotte in her car seat.

When the next lift arrived it was also full. I’m not sure what came over me. Maybe it was the fact that I’d spent three months waiting for this moment and now it was here and I couldn’t get in a bastard lift! I turned around to Connor and said “We’re getting in this lift. If we don’t get in this one, we’re not getting in any.” I asked if everyone could squeeze back and make room for us. As I walked in with Charlotte, Connor was mortified that I’d pushed in front of the two women and profusely apologised whilst I glared at him to hurry up and get in. I remember him apologising to everyone who was in the lift and packed like sardines, “She’s on oxygen. We’ve got limited time to get home.”

By the time we were in the car, we had twenty minutes to get home, we should just make it. Connor drove and I sat in the back with Charlotte. She was none the wiser and had stayed asleep. Connor kept asking me, “Is she ok? Is she still breathing?” I replied, “Yes and yes.”