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Meet Evelyn

Let us introduce you to Evelyn , who attends our Coventry Hospice

                                                                                                   

After their 20-week scan, James and Rachel were referred to the Foetal Medicine department due to their unborn baby, Evelyn, being smaller than expected. They were brought back into the hospital a few weeks later and as Rachel was only 24 weeks pregnant thought this would just be precautionary. It all happened so fast but were told that they would be giving birth as soon as possible. 

Hugging a pillow in a very cold room was when it actually hit home that this was happening for them– at 25 weeks pregnant Rachel was going to give birth. She thinks she must have been in denial up until that point, but at one in the morning on November 19th, Rachel and James beautiful daughter, Evelyn, was born. To their surprise and relief, she let out a little cry like you expect a full-term baby to do (just quieter) and she was quickly shown to them before going off to the side room where she was immediately ventilated.

 Weighed less than one pound.

After a number of hours, James and Rachel were taken through to the recovery room to see “this tiny little, red, skeletal baby… our baby”. Evelyn had a cannula, a ventilator, and a feeding tube all in a baby the size of an adult male hand. It was frightening, worrying, and bewildering for them. 

When she was a few days old, Evelyn contracted sepsis and she faced her first (of many) real threats to her life. Every hour was nerve-racking as she was just so delicate and fragile. 

After two weeks, Rachel and James were devastated to hear she had suffered kidney failure and to visit Evelyn. They were encouraged to do this then as we didn’t expect her to make it and the hospital staff told them to get the family to join us to say goodbye. Up until now it was only James and Rachel had been allowed to touch her, but during the Christening, when everyone was visiting, their families could finally touch her in the incubator, hold her hand and stroke her head. The christening was the most wonderful thing, she had a very tiny white gown to wear and the family gathered around her incubator. 

That evening, Rachel went back to see her and saw her space was surrounded by nurses, doctors and the consultants, with what had happened so far, she naturally panicked, but then she saw her nurse had a beaming smile – she had filled her nappy and wet the bed!

                                                            They were so relieved.

Christmas 2019 and Evelyn was four weeks old when Rachel should have been 29 weeks pregnant, enjoying the day with her family saying “it’ll be the last one that it’s all about us”. This was not part of the plan. We managed to make Christmas as special as it could have been considering the circumstances, but it was a Christmas they will never ever forget. 

Right the way through their time in hospital James and Rachel were utterly terrified. They were never told that everything is going to be ok and you’ll get to leave with your baby. They had been cooped up in the hospital for ten plus weeks before finally one consultant said he’d be very surprised if she didn’t make it now. The level of elation they both felt at this moment was unreal; our precious baby was going to make it! The sheer panic of every second of every day wondering if Evelyn was simply going to live was totally exhausting. 

They both felt such a mix of love and fear and for other members of the family it was the unknown, trying to relay as much information as possible but they couldn’t grasp everything that was going on; nobody could. 

Finally they got home from the hospital after 173 days and whilst they were delighted to start our life as a family, things have remained very difficult. Evelyn wakes around 5am if she hasn’t been up in the night and has quite a strict feeding schedule due to her small size and persistent vomiting. It has been a real battle to find an amount that Evelyn can tolerate whilst being able to gain weight and grow. She needs medications three times a day and because she has an oral aversion everything goes down her nasogastric tube. 

It is difficult to go out and about because they don’t know when or when she’s going to throw up, she can end up going through multiple outfits in a day. Generally speaking, every two hours she needs attending to via her feeding tube which means that James or Rachel need to be on hand as nobody else in the family is trained or feels comfortable doing it.

Evelyn wakes around 5am if she hasn’t been up in the night and has quite a strict feeding schedule due to her small size and persistent vomiting. It has been a real battle for her parents to find an amount that Evelyn can tolerate whilst being able to gain weight and grow. She needs medications three times a day and because she has an oral aversion everything goes down her NG tube. It is difficult to go out and about partially down to her schedule – I don’t like to cart round her many medications, syringes, feeds and necessary equipment – and because we don’t know why or when she’s going to throw up, she can end up going through multiple outfits in a day. Generally speaking, every two hours she needs attending to via her feeding tube which means that James or Rachel need to be on hand as nobody else in the family is trained. 

Their community nurse saw how much they were struggling and recommended Zoe’s Place. She could see the constant physical and mental drain, the lack of sleep and the desperate need they had for a break. 

 

                                                             Zoe’s is a lifeline.

 

To watch Evelyn’s Story please click here.

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