I watched you sleep a little while
Comforted by your motion,
To know you lay beside me
Was a reassuring notion.
Watching your pain and struggle
Was the hardest thing to do,
I could never leave your side
Or not watch over you.
Although this road has not been straight
You’re braver than you know,
For in your eyes I see such strength
My one and only Glo!
“The day you changed everything” - Megan Dobbs 2016
This day holds so much meaning, first and foremost it’s my beautiful daughters birthday! Glorious Gloria! It is, along with the birth of my son the best day of my life. It’s also the worst. Bare with me. To hold my daughter in my arms for the very first time was more than I can put in to words. I had waited nine long months, and then some, to meet this beautiful little being. Elation. I could not have been happier. Seriously. I had it sussed, I had breastfed my son, I would do the same and I couldn’t wait! I had gone back to work when he was five months but I would take at least nine months off with my daughter, ensuring I made the most of every second, because I could. Timings had worked out perfectly and I intended to start my teaching career in September 2016 after using up all of my maternity leave, like every last little bit! (I graduated pregnant in July 2015 and worked up until my due date.) I am forever grateful to my wonderful partner who supports me, I don’t mean financially, although he does too. I couldn’t be prouder to say he’s a doctor and a damn good one at that. He is caring, extremely intelligent and the best father to our children.
My son came in to meet his beloved sister after school and just three hours after she was born. To see the joy in his face and watch his happy tears flow filled me with an overload of love and happiness; I had my little family and I felt like the luckiest person alive. We left the hospital that night with Gloria wrapped up warmly and sleeping in her car seat, we put our son to bed, and set about changing little Gloria and preparing for the long night of establishing feeding- I was more than happy to stay up all night with my precious bundle.
It was around eleven o’clock when it happened; my daughter started struggling to breathe and then stopped. I have never experience such fear, dread and panic. The moments that followed were the hardest of my life and when the paramedics arrived I had never been so grateful. We were rushed into hospital which is where we stayed for a week. During this stay more of these episodes occurred where I watched my baby struggling, the hardest moments. I vigilantly stood at her cot watching her lungs rise and fall with each breath. I cried. A lot. I didn’t sleep. At all. I heard the nurses hand over and tell new staff quietly; “mum is very worried and anxious, she doesn’t sleep, try and go in and reassure her when you can” over and over. I watched as they put a tube up my newborn baby’s nose, x-rayed her, administered suction and watched the sats monitor alarm go off time and time again. I was helpless. I thought I had it sussed, I had not planned for this. She couldn’t latch on to breastfeed due to the fact she was severely tonged tied, they snipped the tie but she still couldn’t latch on. I tried and tried and tried. All of my plans were going to waste. I was so helpless. Thank you to the wonderful nurses that brought me an expressing machine and told me I could rent a hospital grade pump from Medela. This meant the world to me, feeding my baby was something I had been looking forward to so much, they kept that wish alive: I expressed for eight months and fed my daughter, this was the only way I could help her, my very own medicine.
A week passed and they finally said we could take our baby home! Before they let us leave they scanned her heart, they found a few abnormalities, she had holes in her heart, not your usual baby ones but holes called VSD’s. They reassured us that it was still ok for us to go home and to just keep a watchful eye for changes in colour (turning blue) and tone (becoming floppy). We went home, another hard part. I felt safe in hospital, I knew there were doctors and nurses around, medicine and a whole team of people that could help save my baby. At home there was me and my partner. Then my partner had to go back to work after a week which brought with it yet another hard part; just me. I felt extremely alone, scared and responsible.
In the next three weeks we called for an ambulance a couple of times again after more episodes of the same, we didn’t stay long. When Glo was four weeks old her breathing started to sound different, my gut told me to take her to hospital. I did just that, there they told me she likely had bronchiolitis and it was quite common, nasty but we could go home. I stood my ground and said I wasn’t happy to go home, I needed to stay where people could help her should she need it. Thank god I did. We were admitted and the doctor started to investigate the episodes she was having, why was she having them. I remember when I realised the bigger picture, the doctor came in with her team and said…. “I don’t think its fair that people are talking about this and not telling you, it has been noted on several occasions that Gloria has characterful features, now babies often do however along with these episodes I think we should investigate this further”… something along these lines; I had to sit down at some point. While this was extremely hard to hear I certainly didn’t want to be kept in the dark and I am grateful to her for that.
That day and the next we were met with surgeons, radiographers, geneticists, cardiologists and ophthalmologist where a number of investigations were carried out. We were told she would need an operation, that there was a problem with her kidneys, heart, eyes, that she had a small head and that several anomalies together like this don’t usually just randomly happen; there was likely a genetic reason/cause behind this. This was all very hard to digest but quickly put aside due to a rapid deterioration in her acute illness (bronchiolitis).
Gloria was now in a humidified oxygen head box, needing help to breathe and get more oxygen in. Things only got worse and we ended up being transferred up to intensive care where we stayed for nearly two weeks on CPAP (continuous positive airway pressure machine to aid her breathing). Needless to say, I didn’t leave her side. My lowest point was watching my daughter ‘crash’ and be ‘bagged’ (BVM ventilation aka forcing air and oxygen into the lungs) by my partner and the nurse while I called for help from the team. My partner continued to maintain her airway while the team quickly put a plan of action into place. I thought she was dying. I was heartbroken. It transpired that she was retaining fluid which was around her lungs and heart, they gave her medicine (which flushes out fluid but is also highly toxic to her kidneys), it saved her life.
The next day she opened her eyes for the first time in over three weeks, she looked at me and I could see all the fight she had inside of her, her strength, courage and determination to stay in this world. I knew she was a fighter and in that moment I knew she was going to be alright. From that moment on she got better and better, and within a couple of days we were back on the ward and off oxygen. The doctors had never seen such a fast recovery from someone being so sick. We got out just days before Christmas and I am so grateful for that, for our son. I am grateful that I got to take my daughter home, I realise that not everyone gets to and how close we came to losing Glo.
In the 21 months that have followed her birth we’ve had highs and lows; we’ve spent a total of around four months in hospital, had one operation, numerous outpatient’s appointments, a diagnosis of missing information on one of her X chromosomes and we have the most wonderful daughter! She is the happiest baby I know, she is kind, caring and demonstrative. She is my courage and my strength, she has opened my eyes to another world and taught me to be a better person and mother.
Gloria also gave me another gift. My business. When you realise how precious and precarious life is, it gives you the courage to do what you want, to go for it, you lose your fears of mundane things because you’ve faced your worst.
As I sat at home with Gloria asleep, worrying endlessly about her, I scrolled through Instagram looking at my favourite things, jewellery, as a distraction. I didn’t leave the house for fear of her catching something and because I felt safer there. There was also a lot of equipment to go out with! It was all too much for a snatched coffee while my mind did overtime- was she ok? Breathing ok? Had that person washed their hands? Please don’t touch my baby! I was on edge to say the least. Driving myself to distraction I knew I had to find something to do. With so many outpatient’s appointments and at least one trip to the GP and hospital a week teaching was off the cards. Even part time teaching requires full time hours to plan and do your job properly. I didn’t have full time hours. I had hours at random times and changing times and different days. My time was inconsistent to say the least- not an attribute your looking for in a secondary school teacher!
I spent any spare time when Gloria was asleep sketching and hunting down antique and vintage jewellery; something I love doing. As I scrolled through Instagram one evening I thought why not share my finds with everyone and sell a few pieces too!
I created an Instagram account @oldgoldtreasuretrove and the reception there from likeminded people was phenomenal. Let me tell you- this community has some of THE most wonderful, caring people. They don’t know my story but welcomed me with open arms, there was no competition only kindness and generosity. I’d come out of nowhere but there was no question as to who I was or any bitterness whatsoever. It was a lovely feeling and a welcome distraction from my worry. My welcome distraction and outlet fast became my business as it snowballed. I had miraculously turned my passion and love into a business!
I will be forever grateful to my daughter for giving me so much.