Exactly a year ago today, my husband and I made the decision to create another child for our family – ok so it wasn’t quite a decision as a ‘happening’, and it was more unconscious than conscious given the amount of wine I had consumed that afternoon! If you’ve read the posts that gave birth to this blog, you will have some understanding of the journey that I went on through my pregnancy, and you will have shared some of my thoughts and fears along the way. You will also know then, the joy I felt when my daughter was born. I was besotted; I am besotted.
I’ve been absent from my blog for a while. I will forgive my followers for assuming that I just got busy with the new addition, and that having 3 children and a home to look after left me very little time for writing. I wish it were that simple. But we have been on an ‘adventure’, Freya and I. It’s an adventure that began on Sunday 31st May 2015 when Freya was just 7 weeks old. It’s an adventure that I would like to share with you. I hope that through the telling of Freya’s story we are able to raise awareness of a barely known disease, and if our insight and updates can help others to understand this illness, or provide support to those who are living with this devastating condition, then I will have achieved more than I could hope for with my words.
I was unable to blog from the hospital with limited or no internet access, so I kept a hand-written journal. To tell the story, I need to go back in time to when this all began, so I ask that you indulge me as I share the experiences of the last couple of months, as well as keeping you up to date with where we are today.
How it all began
On Sunday 31st May 2015 my daughter awoke at around 5am for her first feed of the day. I had stopped breastfeeding about a week before so she was bottle-fed with formula. She was very snuffly, her nose was all blocked up and she was struggling to feed as a result. She took about an ounce of the 4 ounce bottle and fell asleep in my arms. Assuming she was just tired still and not ready for the milk, and that she had most likely tired herself out trying to feed with a blocked up nose, I thought nothing of it and returned her to her moses basket. She slept until around 9am, again I prepared her formula, and again she managed to drink around an ounce before falling asleep.
After a few hours, I decided I couldn’t leave her sleeping any longer and I needed to try and get her to take a bigger feed. When I approached her in her bouncy chair where she was sleeping, I noticed that her lips looked dry and she had a lot of spit around her mouth. Again I assumed this was because her nose was so blocked up that she was having to breathe through her mouth. When I touched her to pick her up, I noticed that she felt very warm, so I took her temperature with a digital ear thermometer. Her temperature was 38.3 degrees; she had a fever. I went to the medicine cabinet to find some Calpol (paracetamol) but the box said ‘from 2 months’, and with Freya being one week short of that milestone I wasn’t sure whether I should give it to her not. Being a bit of a worrier and a goody-two-shoes, I decided to call the out of hours doctor’s service. By this time, Freya was still sleeping soundly, though I had noticed that her tummy was heaving up and down a lot whilst she was breathing which was unusual. The doctor advised us to take her to the hospital Accident & Emergency unit as a precaution as it is unusual for such a young baby to have a fever.
After the initial examination, the doctors decided to admit Freya to the Children’s Ward for overnight observation. I mentioned that I was Group B Strep positive in my pregnancy; I had this niggling worry that she could be starting to present symptoms of late onset GBS infection. The doctors decided to give her intravenous Amoxycillin as a precaution and we settled into our room for the night. I sat in the reclining chair holding Freya as the IV antibiotics were delivered to her tiny veins. When the IV had finished, I laid with her in my arms until she finally fell asleep. Not wanting to risk losing my hold on her if I fell asleep, I transferred her to the hospital cot and returned to my chair. There was all too familiar smell coming from her nappy, but I decided to leave her to sleep rather than disturb her again. I say I decided to leave her, but after about 2 minutes back in my chair the guilt of leaving her in a dirty nappy took over and I got up to change her. As I lifted her vest, I noticed what looked like a rash on her torso in the dim light. I wasn’t sure though as it was quite dark, so I decided to put the light on. A bit dazed by the light I found it hard to decide whether my eyes were playing tricks on me or not. It was around 5am, and was beginning to get light outside so I opened the curtains to take a closer look at Freya. Her torso was covered in a rash of tiny red spots. I’d read somewhere about meningitis and that the rash was one of the last symptoms that would appear, and also that it would be the type of rash that wouldn’t go away if you pressed it against a glass. I didn’t have a glass so I ran my finger across her skin. The rash seemed to go away. I called the nurse and asked her to take a look. She was unsure whether it was concerning or not, so she called the on-duty doctor. He came within ten minutes. By that time, the rash had spread across Freya’s arms and down her legs.
What happened next is a bit of a blur, as it all seemed to happen so fast. I will never forget the feeling as I watched the doctor and listened to his directions to the nurse. They called a more senior doctor. As soon as he entered the room I felt the atmosphere change. The feeling was oppressive, like an elephant was sitting on my chest. Their calm orders, and deliberate movements betrayed no panic, but there was something about the air that just felt wrong. I watched on as they wheeled her to a high dependency unit (HDU) and started to give her fluid, more antibiotics, take blood samples. She looked like she was sleeping. I didn’t know then that she had gone into septic shock, and her little body was starting to shut down. I learned later that what they were doing in the HDU is called fluid resuscitation and that Freya was very sick indeed.
It was too early to say what was wrong with Freya, but the symptoms suggested bacterial meningitis was the cause, and so the medical staff elected to treat her for that with two antibiotics (Amoxicillin and Cefotaxime), intravenous fluid, and regular paracetamol and ibuprofen to reduce the fevers. Looking back to that day, I remember feeling scared, but also feeling very proud that I had moved quickly enough to get her to hospital before the illness had really taken its hold. Everyone told me she was “in the right place”. I didn’t know that the “right place” would end up being our home for the next 6 weeks, and that Freya would eventually leave the hospital forever changed.