Life after NICU – Homelife

Bringing Charlotte home was one of the most exciting yet daunting events of my life.  

My first weeks at home with Charlotte were spent lost in a confused array of emotions. I was filled with love, joy and worry for Charlotte alongside pain, heartache and grief for Esme.

Homelife

There hasn’t been a day that has passed when I don’t feel like the luckiest person to be able to take my baby home. I felt incredibly blessed to be able to do everything I had dreamt of doing as a Mummy. I took nothing for granted. I didn’t care that my days and nights rolled into one. I was grateful for everything I had been previously denied: feeding, dressing, changing her nappy and washing the copious amounts of clothes of a newborn. I was scared that my time as a Mummy would run out and that the next day, I would have both my babies taken away from me.

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For this reason, I was probably too harsh on myself. I never wanted to admit that it was hard work or I was knackered or I wished that Charlotte would stop crying or that she wouldn’t want to be fed every two minutes. I had wanted and waited for this to happen for so long. I felt if I acknowledged any of these points I would be being ungrateful.

Despite being up for most of the night feeding Charlotte while crying for Esme, I would wake up the next morning, take a shower, get dressed and put my makeup on, ready to face the day ahead.

I wanted to show everyone and prove to myself that I was coping. I wanted Esme to be proud of me. I was getting the chance to be the Mummy I had longed to be. I spent my days giving all my love to Charlotte and my nights and early hours of the morning grieving for Esme. I didn’t want Charlotte to grow up with a sad Mum who she only recognised by her tear-stained face. It was also hard to be sad around Charlotte. She has brought me nothing but joy and happiness.

Charlotte became my warrior and she and Connor (and my dogs) continue to carry me through each day.

When we brought Charlotte home, Connor was with us for the first week before having to return to work. It was great when he was at home and having him around softened my grief and of course made life easier looking after Charlotte. It was bliss to feel like a family in our home.

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I found it daunting at first being in the house alone with Charlotte. The responsibility felt enormous. I was kept busy most days by walking the dogs or friends visiting but I was always relieved when the dogs started going nuts because they’d heard Connor’s car pull up.

A close friend came one weekend and taught me how to knit. As well as watching Gossip Girl I felt I needed something to do to keep my mind focused and prevent me disappearing into the dark tunnel of grief. I started my winter projects of knitting hats, a snood for my sister and a baby blanket for a friend who was expecting her baby boy in February. Knitting became my new hobby and helped alleviate some of the pain of losing Esme. I soon mastered knitting with Charlotte asleep across my tummy after feeding. I think she got a knitting needle to the head only a couple of times. Learning how to knit also came in very useful in keeping me busy when Charlotte was in hospital with bronchiolitis in the February.

Piling on the pounds

Despite wishing that Charlotte would be fully breastfeeding when she came out of hospital, there were times during our last week there when she got too tired to feed, so she came home with her nasogastric tube in. At home, Connor and I had to tube feed her only once and when the outreach nurse visited the following week, she removed it.  It felt amazing to say goodbye to it and see her face with one less tube.

The outreach nurse from the neonatal unit visited us once a week. I looked forward to it as she knew me and Charlotte well from St. James’s and always had a way of comforting me, making me laugh and feel I was doing a good job. I used to love it when she would tell me how well Charlotte looked and how big she was getting, comments that were music to my ears.

I used to hold my breath every time she weighed Charlotte in hope that she had put on weight. During the first couple of weeks, Charlotte did put weight on but not as much as the nurse would have liked. The nurse explained that although Charlotte didn’t feel cold, she was putting too much energy into keeping warm rather than into growing bigger and fatter. She advised making a few changes, which seemed pretty minor but did the job:

  1. Not to change Charlotte’s nappy on the floor as there were draughts
  2. Always check her chest and make sure she was warm
  3. It was all about the layers as she was unable to regulate her own body temperature
  4. To bath her once or twice a week but not for long and to get her changed quickly
  5. To give her Carabel (a thickening powder, mixed with a little expressed breast milk) before each feed to help with her reflux.
  6. To give her her Abidec (multivitamin) and Sytron (iron supplement) with a little expressed milk and Carabel either in a bottle or syringe.  
  7. For her to sleep on a tilted mattress to help her reflux (she looked like she was sleeping on a slide)

After a few weeks of these changes, Charlotte soon began to pile on the pounds. Throughout the day, she had so many layers on, she looked border line ridiculous. Tights were worn under leggings, sleepsuits were worn under dungarees and she had a short sleeved vest top, then a long sleeved vest top, then a top and then a knitted cardigan. The poor girl frequently looked like the Michelin man.  At night times, I bought her a Gro-snug (swaddle and newborn sleeping bag in one) as she was too small for the 0-6 months sleeping bag. This worked really well but she still required a long sleeved vest top, a sleepsuit and two blankets. It was ridiculous how many layers she needed to stay warm. Connor and I woke up regularly throughout the night to check she wasn’t overheating but she never was.

Charlotte was a great breast feeder and other than reflux, we had no problems. I initially gave her Carabel thickening powder mixed with expressed breast milk syringed into her mouth prior to every breast feed. This was a big effort and I often wished I didn’t have to and could just stick her straight on. However, when I did chance it, it wasn’t long before we were both covered in projectile vomit. We later went onto Infacol to help Charlotte to keep her milk down. Infacol was easier as it didn’t need mixing with breastmilk but it was still a bit of a hassle as Charlotte hated it. It took her a while to combat her reflux.

As we had a freezer full of all my expressed breast milk from hospital, Connor used to give Charlotte a bottle around 9pm when I went to bed. Every night I hoped to get a few hours’ sleep between 9-11pm, as this was when I was most exhausted, but it wasn’t long before I heard Connor creep up the stairs and nervously knock on the door, “Amy, she’s still hungry”, or “Amy, she needs you”. “Wahhhhh!” I used to think. I accidentally fell asleep a few times while feeding her lying down as I was unable to keep my eyes open. The thought of crushing her scared the living daylights out of me.

I struggled to get comfy when feeding and my back and shoulders were in agony. I wasn’t sure if it was because she was so tiny so I had to hold her up or if we just have the most uncomfortable chairs and sofas in our house. I managed to persuade Connor to buy a stupidly expensive nursing chair for our bedroom and I must have used it only a handful of times before embarrassingly admitting it was just as uncomfy as the sofa. It is now in a collapsed, dismantled heap in our loft. I don’t think Connor could bear getting rid of it straight away.

The hard work of feeding Charlotte and giving her the Carabel before each feed always paid off when she was weighed and the scales went up.

As well as the outreach nurse visiting once a week, so did the health visitor. I hadn’t heard many good things about health visitors, so I was pleasantly surprised that I got on really well with her and she only had my and Charlotte’s best interests at heart. At first, she came weekly and then every other week up until Christmas. She didn’t really know much about premature babies so mainly came for my mental well-being. We got on well and she was always full of encouragement about how well I was coping and how well I looked.

Waiting for Charlotte to grow

Waiting for Charlotte to grow certainly improved my patience and when she hit the following milestones I experienced the greatest feelings of love and triumph.

When Charlotte came home she weighed 5lbs 1oz. She had come a long way from her birth weight of 2lbs 1oz. As she was too small for the Cocoonababy that my friend had kindly lent to us, I had to make a nest for her in her cot, similar to the one she had had in the neonatal unit. I rolled a towel up, made it into a ‘U’ shape and then placed a blanket over it. She looked like a little dot in her pram, so I made another nest as well as stuffing a blanket in the bottom half of the bassinet to stop her from sliding down.

Charlotte had to be 7lbs before I could go for walks carrying her in the Ergobaby 360 baby carrier. Up until then, I went out everyday with her in the pram. It took a while to get out of the house, what with timing her feeds, getting her oxygen cylinder safely in the pram and then bumping our way down the steps at the back of our house with my two Labradors in tow. Despite feeling I was sleep walking on my dog walks, it was important for me to get out of the house. It gave me the chance to either have a good cry or or just feel the cold and fresh wind sting my cheeks and appreciate everything that I still had. My dogs always have their own ways of cheering me up.

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The dog walks probably took twice as long to get around as I kept stopping to check her temperature or make sure she was still breathing. However, when she woke up and started crying for her next feed, I soon upped my pace and hurried home.

To this day, one of my favourite moments was on the 22nd November 2016. Charlotte had finally reached 7lbs 7oz and I could put her in the sling. The previous week she was 6lbs 15.5oz (the .5 was important to me at the time. Every little counted to her getting bigger and stronger). It was incredible feeling her so close to me, being able to walk across the muddy fields, it was time for new adventures. I loved feeling her asleep on my chest whilst I was out walking for miles with the dogs. I was also surprised to have the beautiful sensation of having my bump back. I felt I had been robbed of having and enjoying a big bump. I loved carrying Charlotte, knowing she was close to me and safe. The oxygen was heavy to cart around and my back and shoulders often suffered but being out and about and carrying Charlotte in the sling outweighed the discomfort.

I can probably count on the fingers of both hands the number of days I haven’t been out of the house to take the dogs for a walk. There is something I love about walking in the countryside, watching Hattie and Mila chase one another and being lost in my own thoughts. Charlotte and I went out in all weathers: rain, snow, sleet, hail (not intentionally) and sunshine. I never let the weather stop me getting out of the house and always feel better after being in the fresh air. Grief and my sadness for losing Esme, never seems as consuming or as overpowering when I’m out with the dogs compared to when I am in the house.

Therapy appointments

Due to Charlotte being premature and having a bleed at birth we see a physiotherapist and occupational therapist every four to six weeks. These appointments are at the Leeds General Infirmary. I had no choice but to go back to the LGI and retrace the steps I took when I walked in and out of the entrance all those times after Charlotte’s waters had gone, or walked the corridors to the neonatal unit or when I left the hospital the night Esme died.  It was during these times where my feelings of fear and love were inseparable. Returning to hospital reminded me of how real and strong those emotions were. On some of the appointments I was fine and I went to them as if I had no dark memories, other times I relived every moment of pain, terror and anxiety.

On the occasions when Connor came with me we sometimes went back to the neonatal unit. This was a brave decision but if I’ve learnt anything since the girls were born and since Esme died, it’s that if there is anything that is bothering me or I feel afraid of, I need to tackle it head on. Going back to the neonatal unit and walking through the ward doors was one of those things I needed to face. I didn’t mind if Connor didn’t want to come in, I understood we had our own ways of facing our fears but he was always right behind me.

Up until Charlotte turned the corrected age (the age she would have been had she not been premature) of one, I was always nervous before each therapy appointment and felt my anxiety grow in the week before. Would Charlotte be ok? Had I done enough physio work with her each day? Would I find out something that I was afraid of hearing? However, Charlotte proved me wrong every time. The therapists were always delighted with her achievements and thrilled at how much she was using her right arm and hand. They congratulated me on my efforts which filled me with pride and hope.

When Charlotte turned the corrected age of one, I stopped getting hung up or worried about Charlotte not doing certain things, like sitting or crawling, and accepted that she would do it in her own time and at her own pace. I couldn’t keep living my life being anxious of Charlotte’s next stage of development. I knew she was going to be behind with her physical development and it would take her until the corrected age of two to catch up, but accepting and living with this was initially a challenge for me.

My anxiety had built up over a year and I have now realised it was my intolerance of the future coming back to bite me. I wanted to know what harm her bleed had done. Was she going to be ok? It started with being anxious that she wasn’t looking to her right, this then led to concern that she didn’t roll from her front onto her back, or sit or roll all the way over. After she successfully achieved each of the milestones, my anxieties moved on to her next stage in her development. It took a while for me to acknowledge that it was my anxiety that had returned on top of all the worries of being a new mum, a mum to a premature baby and a mum who has experienced the loss of a baby.

Connor was and continues to be extremely supportive and has a way of changing how I think and looking at things from a different perspective. He reminds me that I am doing everything I can to help Charlotte and whatever challenges our girl faces she will overcome them in her own time.

I never let my anxieties show in front of Charlotte and worked on everything at her pace. I do physio with Charlotte during play and incorporate it into everything she does. I am grateful for my teaching career in special educational needs and having the privilege of working with such talented physiotherapists and occupational therapists.

When I realised and accepted my anxieties, life became easier for me. It was a relief to just be happy with whatever stage Charlotte was at and get rid of my worried thoughts about what the future held for her. She is one of the most determined little girls I have ever met and I know that she will let nothing stand in her way.

She is my warrior.

2 thoughts on “Life after NICU – Homelife

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