The Bells of Christmas

Christmas Eve – this time two years ago the rest of the family moved in to our new house. All six of us slept together under the one roof for the first time in six months. I went to bed feeling so happy, so content, so ‘full’.

Within four days the bells of Christmas had been replaced by the ‘bells’ of the monitors to which Leah was attached in the Intensive Care Unit where she had been admitted as a result of respiratory failure.

Every time Leah’s blood oxygen levels dipped, the monitors chimed and my heartbreak intensified. For the first five nights I slept in a chair beside Leah. During one of these nights there was a medical crisis and the monitors alarmed almost continuously. In the morning the staff looked at me in amazement and asked me how I had slept through the whole commotion. I shrugged my shoulders and gave a vague answer. In actual fact, I had been well aware of what was happening but I had kept my eyes closed and had held my daughter’s hand (whenever I wasn’t in the way) while praying silently. I was worried that if the staff knew that I was awake that they would put me out of the room and then I wouldn’t be there to comfort Leah.

Many days as I sat quietly holding Leah’s hand, with her favourite music playing softly in the background, the chimes of the monitors would intrude unpleasantly on our thoughts – reminding us of what we didn’t want to be reminded about – that Leah’s life hung in the balance.

Finally on the 16th January 2014, when Leah had been transferred to the Children’s Hospice for her end of life care, a monitor started to sound an alarm as the life seeped slowly from Leah’s body – swiftly and silently the doctor pressed the mute button on all of the alarms. We didn’t need them now, as sadly for us, the time had come to let Leah go peacefully into the waiting arms of her loving Heavenly Father.

Now I live and ‘celebrate’ Christmas in a dichotomy – one part of me is overwhelmed with the sadness of Leah not being here, yet the other part of me celebrates the birth of the Christ Child and the many blessings with which God has enriched my life.

Each one of our four children is a blessing in my life. My friends and my family who surround me with love and comfort are a blessing. Having a job that I love and work colleagues whose company I enjoy is a great blessing. I have a beautiful house which is a blessing.

Let the words of Chris De Burgh be my Christmas greetings to you, my faithful readers:

The Bells Of Christmas

If you know someone who is lonely this Christmas,
Reach out a hand and open the door,
Bring them inside in the spirit of Christmas
And show what lies in store;

If you know someone who’s forgotten that Christmas,
Will always shine in the eyes of a child,
Open their hearts to the memories of Christmas
And take them back in time;

So have a very Merry Christmas everyone,
Celebrate the coming of the newborn son,
Everywhere this happy day we have begun,
To ring the bells of Christmas;

Let the light that shines with the wonders of Christmas,
Fill every heart all over the world,
Let us believe in the spirit of Christmas
And dream of peace on earth;

So have a very Merry Christmas everyone,
Celebrate the coming of the newborn son,
Everywhere this happy day we have begun,
To ring the bells of Christmas;

Have a very Merry Christmas everyone,
(Ring the bells)
Celebrate the coming of the newborn son,
(Merry Christmas)
Everywhere this happy day we have begun,
(Ring the bells)
To ring the bells of Christmas,
(Merry Christmas)
Ring the bells, ring the bells!

 

The Polly Pineapple Ice-pop

Polly Pineapple ice pops will always remind me of Leah’s last days when she was on the ventilator.

 

Thursday 2nd January 2014 was a very difficult day – Leah’s oxygen saturation levels had fallen lower than I had ever seen them go before. The doctor putting her on the ventilator had informed me that she may not survive the process of being ventilated. He had upset me further by telling me that I couldn’t hold my child’s hand until he administered the anaesthetic that would put her to sleep, as I would be in his way while he set up his equipment. He’d said that Leah might be fully anaesthetised for two or three days before they would gradually wake her up.

The ICU was managed by a team of consultant anaesthetists in rotation, so every day a different doctor was in charge – I met eight in total. They were all fantastic medically speaking and did everything humanly possible to save Leah’s life.

However, some of them had better ‘people skills’ than others. As the mother of a dying child I craved compassion and understanding, but sadly some of the doctors did not always show sensitivity in their dealings with me. Those who got it right were amazing and to them I will be forever grateful. Those who got it wrong I have now forgiven.

It was a hard road at times – the average age of the patients in ICU in BCH was 70 – the staff really weren’t used to dealing with a mother and child. Some of the doctors had children around Leah’s age. That seemed to have a positive effect on some doctors, making them more compassionate towards us, but for others it seemed to have a negative effect on their interactions with us.

In retrospect I can understand that different staff have different ways of dealing with difficult situations and the difficult emotions that these can produce. Since Leah died I have had conversations with some of the ICU staff, that have helped with my emotional healing.

At the time that Leah was ill and dying though I just felt incredibly vulnerable, sometimes it felt as if my heart was being dangled by a thread over a river of hungry crocodiles. When my favourite staff were on duty I felt protected and safe, but when it was staff that I wasn’t sure of, it felt very difficult.

Friday morning 3rd January I was sitting waiting to go into ICU when a very pleasant consultant I hadn’t met before came to speak to me. He said that Leah was coping well with the ventilator and that her oxygen saturation levels had improved. Not only that, but he said that Leah was now awake and that I could buy an ice- pop in the hospital shop for her to suck on.

I hated when Leah was fully anaesthetised and I loved when she was awake and could respond to me. While in ICU Leah communicated by typing on her iPad. This wasn’t quite as easy as it sounds though, because Leah’s medication affected her vision and made it blurry, so a lot of what Leah typed was unintelligible.

Leah tried to use the BSL (British Sign Language) finger alphabet to communicate with me, but it’s been ages since I’ve used BSL and the combination of emotional trauma and lack of sleep meant that my concentration was very poor and I just couldn’t remember what the different signs meant.

I asked the staff if they had some form of alternative/augmentative communication that Leah could use – they said that they used to have something but someone had dropped it and it was broken. So we just persevered with the iPad.

This is one of Leah’s more jumbled communications – the really jumbled ones I would have deleted at the time. Sometimes I used to feel really exhausted trying to decipher her communication and I would have been relieved when she fell asleep again for a while.

 

 

Other times Leah must have been less sedated and could write more clearly like here. Emma was the nurse looking after us that day. All of the nurses heard about Molly and Mikey and Charlie and were shown photos of them. They were two children and a teenager who had been in the transplant unit in Bristol at the same time as Leah and me and whose families we had become very close to.

Leah was on diuretics to dry out her body and remove fluid from her lungs. Having the ventilator tube in her mouth meant that she couldn’t close her mouth so her tongue became very dry. Leah told me that she didn’t mind being on a ventilator, the only thing that bothered her was the most awful thirst. She longed for a coke float or one of our joint favourite Marks & Spencer White Chocolate & Vanilla milkshakes.

Polly Pineapple ice pops were a major concession and this was apparently the first time that a ventilated patient in Belfast City Hospital had ever been allowed to suck an ice-pop. The only problem was that new permission for the ice-pop had to be sought every time the consultant on duty changed.

The consultant on duty usually changed around 8am & 5pm. One evening we waited so long for permission to be granted for Leah to have an ice-pop that the hospital shop was closed by the time that the necessary permission was granted.

Leah was told that she could have it first thing in the morning instead, but when the shop opened in the morning a different consultant was on duty so we had to wait for the necessary permission all over again. Once permission was finally granted I was away to the hospital shop like a hare to get the coveted ice pop before circumstances could possibly change again!

Never was an ice-pop so appreciated by anyone as those Polly Pineapple ice pops were appreciated by Leah. I used to hold the ice-pop for her. Sometimes Leah would doze off and wake up again and the ice-pop would have started melting and running down my fingers and my hands would get all sticky.

Sometimes when Leah was very tired I would let the ice pop melt in a paper cup. Then I would dip an oral hygiene sponge into the melted ice pop and let Leah suck the sponge – where there’s a will there’s a way!

Those were precious mother daughter moments – one of the little comforts that I could provide for her.

The Importance of Nail Varnish

I still haven’t unpacked all the bags of Leah’s personal possessions that came back from Belfast City Hospital after she died – it’s just too painful. I glanced in one of them this morning and saw this and burst into tears.

Each of Leah’s emergency hospital admissions here in Ireland resulted in the nurses having to find a bottle of acetone so that she could remove her nail varnish. Leah loved having her nails looking well.

On our first night in the Cancer Centre on Friday 27th December 2013 the nurses were reluctant to make her remove her beautiful nail varnish. However Leah’s oxygen saturation levels were worryingly low and the staff speculated whether they were really that low or whether the finger probe just wasn’t reading right because of her nail varnish.

Obviously this was all very stressful so I asked the staff for acetone to remove the nail varnish from one finger nail to end the ambiguity.

On Saturday 28th December Leah was transferred to Intensive Care and had to wear a finger probe all the time, so with Leah’s agreement, I also removed the nail varnish from one finger nail on her other hand.

After a few days, she really needed a choice of fingers so I removed the nail varnish from a second finger nail on each hand. Eventually, after several days, and with Leah’s permission, I removed all of her nail varnish.

I think it was really good that the staff didn’t insist on all of Leah’s nail varnish being removed before we were emotionally ready to do so!

As soon as Leah was admitted to ICU the doctor told me that Leah may not survive and I then discussed this with Leah.

We were hoping and praying for a miracle of healing until we eventually knew in our hearts that this wasn’t going to happen.

In a funny kind of way, keeping Leah’s nail varnish on for as long as possible was part of a desperate attempt to cling to normality in the face of overwhelming evidence to the contrary.