When Laura contacted us about writing a guest post about her daughter, Millie, we jumped at the chance to share her story. Millie was born just before 29 weeks and this is Laura’s account of her life so far. We are in awe of both Millie’s tenacity, her parents’ strength, and the skill and dedication of our NHS.
‘At 28 weeks, I was diagnosed with severe pre-eclampsia. I was bed-bound in hospital, on a strict fluid and food intake. With a cannula in each hand for various drips, a catheter monitoring my fluid output vs input, strapped up to a heart monitor for baby. Definitely not what I was expecting from my third trimester.
I lost count of the number of times my blood was taken. So much had been taken out of my arms, they started to take from the back of my hands and feet. After a few days of being a human pin cushion, I could actually feel when my blood pressure was too high. I would get awful headaches, start to feel sick and my eyes would go blurry. This was the point at which the doctors explained to us that Millie would have to be delivered soon, otherwise both of us could die.
Every hour I could keep her inside of me was precious. I was determined to make it to 29 weeks. However, the following morning I couldn’t keep any medication down and there was no other way of keeping my blood pressure stable. I was rushed off for an emergency C section. I had become the priority over our little girl, and was at a high risk of having a seizure.
Millie, was born at 9:42am on the 10th December, at a gestation of 28+5 weeks. She cried on delivery which was a huge relief, but we only saw her briefly before she was rushed off to intensive care, 78 days before her due date.
Seeing our daughter for the first time after the birth was one of the most exciting but daunting moments of my life. She looked so tiny, a bag of bones, with see-through skin. I have no idea how we got through the next few days. Things got really tough, really quickly. Millie had a large pulmonary hemorrhage and was bleeding internally on her lungs. She was now in a critical condition. I became extremely emotional and clingy to my husband – not letting him leave my side. I remember bursting into tears in the middle of the hospital cafeteria. Neither of us had ever felt this unbearable pain and suffering before – we were completely helpless.
Our poor little girl was dangerously ill and there was nothing we could do to help. All we could do was sit at her incubator side day and night, willing her to get better. At this point, I was so determined to be by Millie’s side I had made leaps and bounds in my C-section recovery and was ready to be discharged. However, I couldn’t be discharged from high intensity, where I had been for these first few nights. I had to be moved to the maternity ward.
I found the maternity ward an incredibly difficult place to be, surrounded by other women with healthy, full-term babies, ready to go home and start living their life as a family. Just in time for Christmas. It tipped me over the edge. I broke down into tears, unable to cope with the thought of seeing another mother cuddle their baby when I wasn’t even allowed to touch mine. I managed to get a side room, and set up camp in there until I was allowed to be discharged. The discharge took days, doctors kept missing me as I was spending all of my time in NICU. Millie’s nurses had also noticed we weren’t looking after ourselves. They would bring us biscuits to Millie’s bedside, just so that they could see we were eating something. Eventually, we listened to the nurses’ pleas to go home and get some rest – I was discharged to our new, empty house. The house we bought to bring our daughter up in. And she was stuck in hospital, unable to get off ventilator support, which was slowly making her sicker.
The next few days were critical for Millie. I am grateful that at the time, we didn’t actually realise just how sick she really was. I don’t think I would have be able to keep up our positivity, had I realised how close she was to no longer being with us. She was deteriorating rapidly on the ventilator. Running out of medical options to keep her alive, Millie was moved onto an oscillator. Again, we didn’t realise until much later in her life that this really is a last resort. One of the NICU nurses, when she found out Millie had been on an oscillator, said something that really stuck with me… “sometimes little miracles just happen”
Our little girl is a miracle. She has taught us so much about life. How precious every day is. How all you need to thrive in live is love, and how lucky we are to have found unconditional love as a family – which will last a lifetime.
After a few days on the oscillator we were told Millie had suffered another pulmonary haemorrhage. There wasn’t much more the hospital could do for her, she had to be transferred to a higher intensity hospital. It was honestly the hardest thing I have ever had to do in my life. She had been sedated for a few days to help preserve her energy. As we watched the transportation team move her lifeless, limp body into the travel incubator I tried to remain positive. I kept Millie a diary of her time on NICU, and I wrote to her every day. Before she left the hospital, I made a quick entry. All I kept thinking was, we still hadn’t held our little baby in our arms…and if she didn’t get through this, we would never be able to. So I set her a target, to be well enough to give us a cuddle on Christmas day.
Millie was amazing, the transfer went very smoothly for her (a bit more emotional for us!) and we had made it to Christmas eve. Having cancelled all of our Christmas plans, we were going to spend it as a family of 3. However, our Christmas was going to be different. We were going to spend our Christmas in hospital. Eating festive sandwiches from M&S for our Christmas dinner and opening presents under the incubator, instead of the tree.
To be honest, it was the best Christmas we have ever had, not only did we get to open Millie’s presents from home, family and friends. But Father Christmas visited her at the hospital – she had 2 stockings hanging on the end of her incubator, full of gifts which ex-NICU parents had donated. It reminded me that we were not alone on this journey, 1 in every 13 babies in the UK are born premature and each of them have the strongest parents, who have not forgotten their roots.
However, I didn’t get that first cuddle on Christmas day. I got it on Christmas Eve.
And it was the best cuddle ever!
Millie continued to go from strength to strength, with one blip when she caught a cold and had to go back on the ventilator for a few days. She spent a total of 80 days in NICU and was administered a total of 40 different drugs during her time on the unit. Millie is now home, despite being on oxygen support, and is doing well. We also recently found out that Millie is severely to profoundly deaf. Most likely a result of the drugs she was on while on the unit. As we embark on the 2nd part of Millie’s journey, we want to spread her story in order to help other families going through the same.’
Laura, writing for The Mother Side x