Day 2

Well we are going to be here for at least 72 hours. Usually it’s 48 but it’s clear things are worse than normal.

They can’t work out if she has a hub of infection inside her body that won’t go away or just a very bad viral infection after a previous viral infection or both or something else.

Her bloods levels are declining. They need to be careful.

When I arrived her yesterday she looked as though she was going into rigour again. It was freezing outside and snowing. I parked up (feeling lucky that I got a space immediately) and just jumped out scooped her up and ran. I held her tightly against my body and firmly around her head and neck. I ran. I was exhausted and couldn’t have anything happen right there at the entrance.

As I was going towards the ward I thought to myself ‘get a grip do we have to react like this and suddenly realised yes we do. This is how we have been told to respond and her temperature was already 39.2. I had to remind myself that we aren’t normal. She isn’t normal and we must rush. As soon as I got into the ward this time they were on things immediately. My nurse was even shouting st the doctor to hurry up and prescribe.

She’s been unsettled and irritable. I sit in the cot with her and cuddle or read books. She tries to sit on me. She does everything she can to keep me pinned down. She’s down. She was happy when her daddy turned up. They are very naughty together. Always up to mischief these two. I now realise how straight my four year old is.

It horrible being stuck here. Today we watched the snow and I took her for a brief ten minute walk outside in the sun to watch the snow falling. I don’t know if she’ll be here to see it next year. She been spiking temperatures again so things aren’t good. They are concerned here. Tomorrow’s bloods should bring some more news. We should have been starting chemo this week. It will have to be delayed.

I miss JJ. She was cute today on FaceTime. Big sister was dancing. She was sent home early from school due to the snow. She made snow angels and played on a new sledge.

Booboo has been given her own marked up packet of saline solution to play with and they have nick named her Dr Daya.

Her face is swollen. Her temperature keeps peaking. Her tummy hurts. She feels to weak to stand and walk. I get her to stand and play in her cot for a few minutes at a time.

Last night I had 3 hours sleep broken across the night. I have no idea how I got through this day.

I’ll have to cut this short as sleep is now a possibility for a few hours hopefully. It’s going to be another stormy night.

It’s tough living at the hospital. You can’t leave. She’s not old enough to interact and play stimulating games. We read books, do some art, cuddle and walk around the room.

It’s hard being here day after day – living here but struggling as you are enclosed and at the mercy of the infections.

She looks weak. I feel tired.

Emergency

And this time I was stuck in traffic!

We are back in with a temperature of 39.2 and then 38.5 and then 38.7 and 38.4 and….

Anyway we are back in and it’s not great.

A picture of when she wasn’t crying.

This time feels very different. It’s not clear to me why she is so inconsolable. And she has been this was for a few days.

I hope to get some sleep. The nurses will be coming in throughout the night so it will be another night of disturbed sleep. And I’ve pulled a muscle in my back jumping in and out of her cot.

Jasmine had a medical appointment today for a helmet fitting. Unfortunately I had to leave as soon as it started as Daya was spiking her temperature.

I miss JJ and big sis. What a fractured family we are at this stage. I look forward to the day I can bring it back together one day. We had two days over the weekend just now.

I feel there is some bad news to come. I can’t explain it. Something is brewing. Let’s see what the bloods and blood gases show up tomorrow.

Earlier this morning I packed the Hospital bag preparing for a trip to our main hospital for chemo. That didn’t come to pass as her neutrophils fell back down. Was disappointing in some ways but I’m thankful in others. I feel her body hasn’t recovered and that she needs a rest. I feel the same about mine and she’s the one that’s has all the horrible chemo.

One hour I don’t know if I’m coming or going and the next minute I’m rushing to the hospital.

Time to get a short nap. Goodnight.

Birthday, anniversary, whatever

Nope, no I didn’t have a good birthday.

The weekend just gone, which should have been a fun and joyous event for the kids, was nothing more than a painful reminder of how far removed our reality is from joy.

My birthday was really about an excited four year old wanting to blow out a candle and celebrate and eat cake.

I bought my own birthday cake, took her to toys r us and Nani fortunately turned up unexpectedly. This kicked off a mission between Nani and her grandchild to secretly find a candle and put it on the cake. It was special. It was a candle on a cake and Big Sister got to help me blow it out. I should have realised earlier on in the day the importance of my birthday to her.

Anyway, otherwise it was a painful day and I couldn’t wait for it to end. It simply acted to magnify the joy we don’t have. There was a lot to deal with over the weekend in terms of the health of both babies.

We are tired. Booboo has had many long restless nights filled with crying and intermittent sleep. We were distracted with lots of tasks and are thankful it’s over. Last year I was in Hospital and a friend dropped off a wonderful home made cake and that was our birthday cake.

Hopefully by 40 I’ll be in a position to have three girls all standing up and walking around. I’ll make it into something special. For now I just want to tackle a day at a time without any additional pressure.

I can’t overlook one important thing that keeps playing over and over in my mind. Daddy.

It hit Daddy hard this weekend. He spends long hours at work. He didn’t see Booboo for most of the week. He only saw JJ for a few moments in the morning. I think our return on the weekend , whilst great to be home, was a slap in the face. The reality of our situation slapped him straight in the face. In fact I think it probably gave him a good left hook. It happens.

Those overwhelming feelings of fear and grief when we look at Daya and Jasmine hit us hard. This weekend it was his turn. This weekend it was also against the backdrop of our anniversary and I guess the distance of being at work gave him some time to see the bigger picture of our fuckt up reality. He was sad. He was more than sad. He was carrying around his broken heart and his quiet face all weekend. He’s a father who’s being robbed of all the moments and opportunities for joy and fun that he deserves to have. It’s not fair but we have to live through this not knowing where we are going to end up. And how long can we just keep going?

Daddy’s broken. That’s the hardest part. When you have to see someone else feeling the enormity of the hurt you feel. There’s nothing we can do to fix it for each other; we are doing everything we can. Daddy’s broken and I can’t fix him.

We are still tough. It’s just draining. It’s endless.

1st, 2nd and 3rd.

When I put my babies to bed, like every parent, I would look down at them in my arms and think about them. Have thoughts about how wonderful they are and what I could do for them in the future and places we would go.

With the first child, I looked at her and thought wow you’re amazing.

With the second child, I thought ‘I’m so scared for your future and how the heck will we communicate. Please don’t let things get worse for her’.

With the third child, I look down at your closed eyes and beg ‘please don’t die. Please, please don’t leave me’. And then I cry.

And when I go to sleep at night, now and again, I ask myself ‘how the fuck did all this happen to us?’

A good day & ‘Mummy’

Today was difficult and good. Sickness vs visitors.

Today was busy and tiring.

Today was difficult for her but it was also sprinkled with love and smiles.

First we woke up early, played, cuddled, sat outside with the nurses who tried to make her laugh at 4am and then she went back to sleep.

She woke up to take her meds.

We had three impromptu visitors today.

Aunty Renima turned up with presents, and cuddles and smiles and fun and homemade cupcakes. These are legendary. You can eat the flowers on top.

Booboo hasn’t been smiling for a few days. She hasn’t been her normal self. The nurses have been trying to make her smile. She’s been lethargic and withdrawn. She’s been feeling weak and has had pins and needles in her jaw, arms, legs and hands. Her face has been swollen. She’s been sweating. She’s had fevers and been cold. She’s also felt very grotty on all the different antibiotics. Chemotherapy has really hit her system hard this time.

Therefore, it was wonderful to see her face light up when our friend Renima turned up. And that’s officially Aunty Renima to the security man on the door – visiting hours didn’t start for another four hours …unless you’re family!

B.B. started talking and smiling and having so much fun. It was joyous to see her come alive again. So whilst I munched cupcakes, Booboo played with Aunty R. We went for a brief walk in the freezing cold but it was too cold so we came back. B.B. played with her new toys from Aunty R. Renima came prepared. Not just cupcakes but toys as well! I was nice to not be talking to nurses or about medical things. It was just nice to talk about other things. It was lovely to see B.B. trying to talk to Aunty Renima and to sit and smile at her. A smile. Finally a smile then another and another.

Then rather unexpectedly, Aunty Chrys turned up. Full of beans and bubbles. And most definitely great cuddles.

Bubbles. Lots of bubbles. And lots of energy. Aunty Chrys is a giver of love and energy. Aunty Chrys’ Baby was born at 27 weeks. He’s dancing around now and running up to the tv to make bird signs during Iggle Piggle. She’s an awesome mother and she’s been through hell and come out the other side. She knows what it means to be filled with love and fear all at once.

We haven’t had visitors in many months and suddenly two turn up in one go. Aunty Chrys is always super playful and fun. She made B.B. smile a lot and it gave me a break. It also gave B.B. a break from the monotony of my face, this room and this ward.

I spent part of the day working out a plan with the doctors for the next 14 days and packing up to come home.

Now wait, there is more….

After Aunty Chrys came our favourite hospice worker ‘Lulu’.

Lulu is lovely. She spent around 3 hours playing with Booboo. They are cute together. The do all sorts of naughty things together. Lulu bought croissants to share and Booboo had her first one.

Visitors are like buses. You wait days and weeks and then three came along at once.

I’m sad. I’m sad this is still happening to us. I’m sad deep down inside, to the pit of my stomach. Deep under my skin and underneath all my flesh there is an infiltration of sadness and hurt that moves with me everywhere I go. I have a heavy heart and if I think too much the lump in my throat gets harder and bigger.

Today she said ‘Mummy’ for the first time.

A few weeks ago, in the play pen at home, I said Booboo where are you going? And Nani asked too and she said as clear as day ‘My mum’!

Today she said ‘Mummy’.

It’s love that binds us all. An unquestionable love.