Life after NICU – out & about

The firsts

Before Charlotte left the neonatal unit she had to do a car seat challenge. This was to make sure she could tolerate being in the car seat for the journey home, without her breathing being affected. For the first few months we didn’t travel over forty minutes. Our first long distance journey (an hour and a half) wasn’t until January when we travelled to Derby for my besties thirtieth. At this point she weighed over ten pounds and we were no longer nervous about travelling with her. She loved the car and spent most of her car journeys asleep. This time, however, we were nervous that she hadn’t opened her bowels in ten days and we really didn’t want her to do it mid journey. Luckily, she did it the morning of our day out, just before we set off. It was a full outfit change and a bath job, but we didn’t mind. We couldn’t have been more relieved that we hadn’t set off.

I was really looking forward to taking Charlotte out of the house for the first time; pushing her in the pram, taking the dogs out and going for a walk in  the village to see Esme. I was looking forward to having my girls together again. En route to the graveyard, I think I must have stopped every couple of steps to check she was still breathing and not over heating. As we arrived and I wheeled Charlotte to Esme’s cross I just stood in silence. I couldn’t talk. I looked at Esme’s cross and then at Charlotte asleep in her pram. I wasn’t sure how I had thought that this would ever have been a good or a nice idea. I struggled to breathe and was struck hard by the heart wrenching realisation that Esme had died, that I had only one baby to raise and that Esme was never going to come back. I felt nothing but sadness for myself, and for Connor, Charlotte and Esme. Things just didn’t seem right or fair. Connor gave me a big hug while I stood and cried. It wasn’t long before Charlotte started to stir, ready for her next feed. It was time to go home, I had a job to do.

Our first family outing in the car was a trip into Wetherby where we treated ourselves to morning tea and cake. Going on that trip is one of my favourite memories, just the three of us. It was wonderful to feel like a family. I loved watching Connor proudly push the buggy. It was the first time we had been out in public with Charlotte and I was surprised when we lifted her out of her pram and the cafe fell quiet. I overheard comments about how small she was and a lady sitting by the door spoke to Connor about her daughter coming home on oxygen and encouragingly told him “Life does get easier, good luck.” We were extremely proud parents and had waited three months for this moment. We didn’t let any of the looks or comments get to us. When my scone arrived, I found it quite amusing that Charlotte was only just bigger than it. We have been back many times since and Charlotte is always treated like royalty. It’s a very lovely, heartwarming feeling.

The first time Charlotte and I went out in the car on our own was to a local garden centre to meet my aquanatal mummies and their girls for lunch. We decided on a short drive and a place where there was a big car park. I chatted rubbish to Charlotte the whole way there and did my best to look where I was driving and to not look at Charlotte in the mirror. Although it was a tad scary, it also felt incredible to be successfully out of the house, on time and on the road, just the two of us. A sense of joy and  freedom.  I turned the music up and much to Charlotte’s delight, I had a jolly good singsong.

Out and about

After exclaiming at how tiny she was, the most common question was, “how old is she?” Now this I also found quite tricky to answer because I felt I always had to justify her age. She didn’t exactly look like a three month old when she weighed five or six pounds. I found I justified her age until she became her corrected age of one. Friends suggested saying her corrected age but then I didn’t feel like I was doing Charlotte justice for those three months she spent fighting for her life.  When she turned the corrected age of one on the 10th October, it felt great to just say “she’s one” instead of having to explain “well she’s actually six months old but she was born three months early…”

Another thing I felt the need to tell everyone I met was “she had a twin sister but sadly she isn’t here anymore.” A lot of people weren’t sure what to say then and often their eyes welled up. Many people said how sorry they were and turned the conversation back to how well Charlotte was doing. I never wanted people to feel sad, but I also felt I couldn’t just pretend to everyone I met Esme was never here. It took many months and a few counselling sessions before I felt comfortable saying Charlotte was a surviving twin as I initially experienced guilt and felt the phrase ‘surviving twin’ did not acknowledge Esme. Now I am in a stronger place and frequently say Charlotte is a ‘surviving twin’, conversation flows much more easily.

Whenever I wasn’t with Connor, I did find the stares from others and the sympathetic looks and smiles harder to deal with. I wanted to just declare, “yes I know she’s small, yes I know she’s on home oxygen but in actual fact she’s is doing bloody amazing and is actually massive now compared to when she was born so you can now all kindly return to your cake and coffee.” Of course, I am far too polite to say any of that and mood dependent, I ignored them or smiled back and answered any nosy questions they had.

As I mentioned in my blog post about bringing Charlotte home on oxygen, one thing that did frighten me whenever we were out in public was the sound of anyone coughing, spluttering or sneezing. I would either cross the street, leave the shop or go and look at something at the other side of the shop. I was petrified of Charlotte catching anything. I carried and used hand gel everywhere I went and at home we had tubes everywhere. It was a few months before I stopped asking anyone who stepped inside our front door to go and wash and gel their hands. It felt a relief for life to become more normal and less sterile.

As the cold and flu season approaches this year, I feel those fears returning and my heart stops when I hear someone close by with a nasty cough or cold. In my head I’m thinking, “just one more year”. One more year of Charlotte becoming bigger and stronger and then maybe next year I’ll relax a little. However, I think it’ll take a while for the fears of the neonatal ward or Charlotte returning to hospital to subside. I’m not sure if that’s a general ‘Mummy worry’ or whether it is just heightened for me because of my journey into motherhood and knowing what it is like to lose a baby.

Meeting other Mummies

Because Charlotte came out of hospital in the height of cold and flu season we were advised to avoid baby classes until the Spring. Initially I did find this frustrating as it seemed another thing on the list that we were denied.

This didn’t stop Charlotte and me from getting out of the house and meeting old school friends, family and other Mummies and babies. Everyone who came to ours or who we visited were amazing and let me know in advance if they or their little one had a cold or a cough. Unfortunately, when this was the case, we did have to cancel our play date as I didn’t want to take any risks of Charlotte catching something that could have been prevented.

I also never let my grief stand in the way of getting out of the house or meeting up with friends. I want Charlotte to have the life she deserves and not to be held back by anything. I learnt that it was ok to cry wherever I was, I learnt it was ok just to ask for a hug and I learnt just to go with the flow of the day and not fight any of the grief or the emotions that came with it.

I got back in touch with the girls I had met at aquanatal whose babies were born in May and June. We became great friends and I loved it when we all met up. Initially they all came to mine as I hadn’t braved the car with Charlotte on my own. They were very supportive and always full of encouragement about how well Charlotte was doing and were amazed at how much we had both overcome. With their little ones being a month or so older than Charlotte, they also gave me tons of advice. Very helpful friends indeed.

I loved meeting up with the friend I had met in St. James’s and her little girl. It was great to talk to someone else who had a premature baby and were familiar with all the joys and worries of bringing a premature baby home on oxygen. She has been a great friend to me and helped to quash any anxieties I had had over Charlotte’s physical development.

It took a long time for me to try not to compare Charlotte with other babies. I knew she would be a bit behind her corrected age but when I saw babies younger than her doing things she had only just mastered or had worked hard with her therapy to achieve, I often found it difficult. I didn’t want some aspects of her life always to be a struggle. Charlotte always proved me wrong and mastered the skills of sitting or rolling, just a few months after what was expected. Many people told me that all babies are so different which I knew but it didn’t stop the anxious thoughts of “will she ever achieve this?”

As I mentioned in my previous blog post, it was not until Charlotte was the corrected age of one (actual age, fifteen months) that I accepted that she would get there in her own time, at her own pace. I just needed to learn to be more patient. I have found that as soon as I have lifted those anxious thoughts of “when she will achieve certain milestones” I am much more relaxed and happier. Because let’s face it, there really is no rushing Charlotte or telling her what she should be doing. I’m pretty certain that, if I tried that approach, I would get her version of sticking two fingers up in my face.

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I also got in touch with two amazing mums who had sadly lost their babies. One of the mums had lost her little girl and the other mum had lost one of her twin boys who were also born at 27 weeks. Meeting these mums helped me with my grief so much. I am forever grateful that they made the time to come and see me. They were there for me when I was at my lowest and managed to pick me up and believe that everything was going to be ok. They gave me answers that I had been searching for, answers that made my painful thoughts normal. They gave me hope. The mum who lost her daughter told me how much counselling had helped her and that I would know when the time was right to ask for help. She was right and it wasn’t until almost six months had passed since Esme had died that I realised I couldn’t lift the sadness by myself anymore and needed help. I still keep in touch with the mum who lost one of her twins and she has helped me through all of my struggles of losing a twin and has been such an inspiration for me.

Baby classes

My first baby class was in November. It was a baby massage class and was organised through the hospital. It lasted for a month with one class per week. I didn’t mind going back to St. James’s as I had only fond memories of the place. The baby massage class was for babies who were born prematurely, or had experienced other problems during pregnancy or delivery. It was a chance to meet the various therapists who attended at least one of the sessions and answered any queries.

For the first class, I felt very proud of myself for arriving on time but then had forgotten to factor in time to feed Charlotte before the class began, so I spent most of the hour breastfeeding and watching what I was supposed to be doing. Never mind, it felt good to be out of the house and I enjoyed meeting the other mums and my cup of tea at the end. The following weeks I set off with at least half an hour to spare as without fail Charlotte would need her nappy changing and to be fed. My time management was improving.

I was excited to speak to a speech and language therapist in the final class to learn that we could start weaning Charlotte. As Charlotte was now five months old she could start having tastes of pureed foods. I think weaning Charlotte was the only thing that went by her actual age rather than her corrected age as her gut had matured and she had been having breast milk since she was born. After the class had finished, I phoned Connor and told him to collect some fruit pouches on his way home.

In December, Charlotte was only 8lbs 4oz when she was started on solid foods. She looked so tiny to be eating. We gave her tastes of pureed fruit and vegetables with her sitting on our knee or putting her in the BabyBjorn bouncer until she was big enough, and also able, to sit in a high chair. That didn’t happen for another few months so we had to hold the bouncer between our knees to stop her bouncing whilst we fed her. Just like her parents, Charlotte loved her food and ate anything we gave her.

As Spring approached and Charlotte had made full recovery from her bronchiolitis, I began to look at baby classes again. I knew that the midwife who ran my aquanatal classes also did a baby massage class so I got back in touch with her. Charlotte and I were booked on to the class beginning in mid March.

In the weeks leading up to the baby massage class, I felt my anxieties rising that there might be twins in the class. The week before the class I went around to my friend’s house for a playdate. She was in the middle of selling her house and apologised that she had a viewing that afternoon, which I didn’t mind at all. However, my friend went white and nearly shut the door in the viewer’s face when she opened it to see she was carrying two car seats with her twins in. Her face was a picture when she walked into the lounge, mouthing “I am so sorry”. So there I was sitting in the lounge, with Charlotte, my friend’s little girl and these twins. I was a bit dumbfounded at first and realised I should probably talk to the twins rather than just stare at them. I thought it was a boy and a girl (they were both dressed in white and grey) which made it easier to deal with the situation I had suddenly found myself stuck in. I thought they were probably around Charlotte’s age although looked bigger and slightly more robust.

The mum and my friend returned after looking around the house and I made polite conversation. I probably definitely shouldn’t have presumed they were a boy and girl and felt rather stupid when I asked her “Are they a boy and girl?” I think it was one of those moments where I didn’t actually know what to say. The mum replied, “No, actually, they are two girls but lots of people think so.” Her comment hit me like a ton of bricks. Before I could stop them or make an excuse to leave the room, I couldn’t continue the conversation and tears started falling down my cheeks. I explained Charlotte was a surviving twin and had a younger twin sister Esme who died at seven weeks. Conversation became quite awkward and everything felt a bit uncomfortable, so it wasn’t long before she had her final look around the house and picked up her babies. I admired her strength as she did so and thought she must be developing some serious arm muscles carting two car seats about. Just before she left I overheard her say, “Right girlies, come on.” That stung like hell and the tears started again.

When my friend returned she was so apologetic and we both couldn’t believe what had just happened. I was in fact grateful that it did and began to see the funny side. You just couldn’t have written it. I was glad I had had my first meeting with twins Charlotte’s age in the safety of my friend’s house. It was nice that I had had that bit of time just to talk to her twins and then look at Charlotte and think “that is just not my story.” My friend and I had a strong cup of tea and a good giggle about what had happened. I was in a good place and so happy she was there to share the situation with me. I think it’s safe to say it’s not one that we will forget in a hurry.

By the time my baby massage class arrived I had had a couple of bereavement counselling sessions. We had discussed how difficult it was to say that Charlotte was a surviving twin and my guilt at not mentioning Esme. The counsellor explained how the phrase immediately told people what had happened. It was then up to me to go into further detail or not. I knew that I would have to introduce Charlotte at the class to others and already felt my anxieties rising about doing this on top of the fear of seeing twins in the class. I wanted to face these fears though, I couldn’t just hide away and always play things safe. That wasn’t what my life was about. I wanted to take Charlotte to classes and meet other Mummies, I just had to get through the door.

Luckily my good friend, also my hairdresser was taking her son to baby massage and I knew the lady who took the classes well. I was grateful that my friend was there, it was a reassuring feeling that she would have my back and knew my story if I was to crumble. I introduced Charlotte to the class with pride. I said, “This is Charlotte and she is eight months old. She is a surviving twin and was born three months early.” After finishing I exchanged a very heartwarming smile with my friend. That was all I needed. After that, I enjoyed the rest of the class and looked forward to all the others. I met a great group of other Mummy friends and we all booked on to our next baby class adventure: baby swimming.

I couldn’t have been more excited than I was to take Charlotte to swimming lessons. Before booking into the classes I had to check with Charlotte’s nurse that she was ok to attend as she was still on her home oxygen at night. They gave us the green light and advised us to buy a wet suit to keep her warm.

Going swimming with my baby was something I had dreamed of for a long time. I was ecstatic the morning of our first class. Taking Charlotte swimming was my favourite time of the week. She loved every second of being in the water and spent the whole time laughing, splashing and smiling.

My girl brings with her nothing but sunshine and doesn’t let anything hold her back. I love her so much for that.

 

4 thoughts on “Life after NICU – out & about

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