Reasons to be Cheerful...

I'm a day late joining with Mich's Reason's to be Cheerful, but I'm jumping in late on the bandwagon nonetheless...

I have so many reasons to be cheerful this week...

Having my little family together again...

Lovely flowers from our Church housegroup on Heidi's release from hospital...

NOT making the finalists list on the BIBs... I can genuinely say the 6 finalists are truly inspiring... I am so pleased for all of them and they truly deserve to be there!

A lovely evening painting my nails and watching "Sense and Sensibility"... nothing quite like a good Jane Austen movie...

This little lady who brings me 100 giggles every day

A happy face from this little one who was so sad when she was ill; it warms my heart every time she smiles!

 

A God who is good and totally in control, even when life feels out of control

Please pray for us today... we are going back to hospital for another blood test with Heidi. I'm hoping this will be the end of the whole ordeal!

Round two...?

Yesterday we had a scare. I thought the whole ordeal with Heidi's illness was over when I waltzed into hospital yesterday morning for her to receive her last dose of antibiotics. I could see as the nurse carried out Heidi's obs that she wasn't happy. My heart sank at the thought we might be taking a backwards step. Heidi's temperature was up. Again. For the first time since Sunday.

We doubted ourselves. Perhaps it was because I was feeding her and she was all hot and stuffy under the cover. We waited til she finished and tried again. 38.4 degrees. I couldn't believe it. I wanted to burst into tears.

The nurse left us alone and I just started praying. "God, I believe you can heal. Would you do a miracle?" I grabbed my phone and text a handful of our friends, asking them to get praying. I was desperate. Jesus healed lame people, he made blind people see... Surely he could do something little like bring a temperature down??

About 15 minutes later, the nurse returned. She wanted to see how Heidi's temperature was doing. I waited with bated breath... 37.2. Normal.

Wow. The nurse did a double take.

"I'll check it again in a bit, just to make sure"

The Doctor checked Heidi over. He said she looked perfectly well, her CRP levels were continuing to come down, but this spike had thrown him. He wanted the nurse to take Heidi's temperature again. I could read the communication in their eyes. If it was up, we were going to be readmitted.

37.2.

You could see they were confused. The Doc said he wanted to speak to his boss... He wasn't sure what the best course of action to take was... How could her temperature have dropped so considerably in such a short space of time?

I know how.

Thank you so much for all of your prayers. God is good and he hears our prayers. Sometimes his answer is yes. Sometimes wait. Sometimes no. On this occassion, God mercifully answered in a very immediate, practical way. We are home and I have been checking Heidi's temperature all afternoon.

Normal.

Please continue to pray for our Bubba. She's been left pretty weak by this nasty thing and looks like a little pin cushion from all the blood tests, cannulas and antibiotic jabs. I just long for her to have some respite now.

We are going under for a few days.

Lots of sleep. Lots of milk and lots of cuddles.

What I've learnt this week...

That it is possible to eat yoghurt with a fork

That there is always someone whose situation is worse than yours

That I have watched 74 of the “501 Must-See Films” (not all this week!)

That NHS tea-bags are ridiculously weak.

That a mother’s instincts can be trusted

That the NHS staff are some of the most dedicated, caring professionals I have ever met.

That even tiny babies are little fighters.

That seeing your children hurt hurts a hundred times worse than hurting yourself

That suffering people band together for encouragement.

That “pyrexial” means you have a temperature.

That the body seems to hold an endless supply of tears.

That God has blessed me with an incredible circle of friends and church family.

That my immediate family are the most sacrificial and supportive family I could ask for.

That Ava has the power to charm a room full of nurses.

That God provides you with strength to bear whatever it is you need to.

That hospital food is actually pretty good.

That even in the darkest moments, God gives comfort like no-one else can.

That three nurses talking in my room will not wake me up, but one snuffle from my baby will.

That hospital showers are cold in the afternoon.

That my husband has an incredible capacity to give and be strong.

That hospital fold-out beds are not bad for comfort.

That there is nothing a sick baby wants more than to be cuddled.

That prayer works.

That God is faithful, trustworthy, sovereign and good. I can wholeheartedly entrust even the things I hold dearest to his care.

So glad to have my little family together again!

We're going home!

I have waited with bated breath over every thermometer reading the last 24 hours… there have been too many times I have rejoiced too early at a low reading, only for her little temperature to creep back up. Heidi hasn’t had a temperature since Sunday evening now, and it is SUCH a relief to have my little munchkin back. She is not as perky as normal; I think she’s definitely been left weaker by this illness, but she is well. And that is all that matters.

I packed up my things last night. I had waited all day, not wanting more disappointment, but when her temperature read low again, I gave myself the luxury of assuming we were only going to be in for one more night. As I packed up our things, I realised that, much as I cannot WAIT to go home, this little room will always hold special significance for me. I have cried more tears here probably than anywhere else… it is here that I asked God some pretty honest questions, and its here that he answered in a very real way. I have felt his presence here. He was in it with us.

Our precious little girl is over the worst of it, and while I cannot stop myself smiling, I choke up at the realisation that this is not how the story ends for everyone. I have seen too many little shaved heads this week, seen too many parents shedding tears. We are so blessed and I am so grateful.

Our baby girl is coming home at last.

Hope and Perspective: my two friends...

Today the situation with baby Heidi remains largely unchanged. Except for one thing. We now have hope. When the Doctor's came round yesterday morning, they finally said the words we had longed to hear...

"We are starting to see some improvement. The spikes are spreading out, and they aren't as dramatic. Her CRP has also started to come down... its still very high, but its going in the right direction."

Hope changes everything. Her temperature spiked yesterday as frequently and to the same level as the day before. In yesterday's mindset, I would have been distraught. But I know now that we are on the way up, even if it doesn't really seem like it.

Hope and perspective. Two of the things that have helped me this week. The perspective came when I went down to the parent's room and got chatting to another Mum. She was in with her little girl. Her little girl had cancer. She was 5 years old and has been in remission, but it seems like the cancer is back. I swallowed back the tears, knowing how emotionally tumultuous this past week has been for us. This lady had been on the rollercoaster for two long years.

There have been no real developments over the past couple of days. Heidi remains much the same... quite cheery until the temperature hits. Even then she is so good. She doesn't complain. We are trying to  stay off the meds now... allowing her temperature to rise so that we can see exactly what her body is doing. It seems to be trying to regulate itself, but it hasn't yet been totally successful.

Heidi and I will be here until her temperature stabilizes. These past 7 days have felt long and emotionally draining. I cannot wait to go home. And yet I know, and trust, that there has been a reason for all of this. God is good. I know that.

Thank you again for all of your support. We have felt so humbled by it.

Truth...

God is good, whatever the circumstances... behind a frowning providence he hides a smiling face.

"I have learnt to be content whatever the circumstances (...) I can do all things through Him who strengthens me" Philippians 4:11, 13

 

Heidi still needs your prayers, but we are hopeful that she is finally on the mend...

Good news at last!

A great night following an encouraging day, and then, at 10am, the temperature struck again. So disappointing. When the Doctors came round just afterwards, they were as perplexed as ever. "She hasn't made any improvement"

I couldn't understand. She had improved. Everything in me said she was getting better - her rash was gone, the temperature spikes were getting further apart, she seemed more herself. My motherly instincts said she was starting to get better, and yet their stats said otherwise; her CRP levels were still increasing, her temperature still spiking. They agreed that the next time her temperature spiked above 38, they would do another blood culture.

I prayed and hoped that her temperature wouldn't spike. I couldn't bear the thought of any more needles being stuck into our baby girl. Her temperature sat, unwaveringly, at 37.9 all morning. I was on total tenderhooks.

After Dave and Ava left, they checked her temperature again. 38.1.

I was devastated.

She had just fallen asleep. After falling asleep and being repeatedly awoken by the pump which kept bleeping "Line occlusion" as her antibiotics were pumped around her little body, she was wrecked. I had had to work hard to get her off to sleep. She was overtired and shattered.

Not only did they want to stick more needles into Heidi. They wanted to do it now. And that meant waking her up.

When the Doctor came into the room, I broke down. Sobbing out some garble about how I didn't understand... that she had improved... that I didn't trust the tempadots (thermometers) they used... that I had just got her off to sleep and how was she supposed to get better when she couldn't rest. The Doctor was very patient with me and went through everything. I didn't like what she was saying... it went against every protective motherly instinct bone in my body. But I knew she was right.

Her bleeper bleeped and she was momentarily called out. I stood over Heidi's cot and stroked her head, crying my apology that I couldn't protect her from this, that I couldn't stop the pain, that I couldn't tell them to leave her alone. It hurt so bad.

I left the room and went down to the parent's room and sat. I called Dave in tears. I just needed someone to distract me. A few moments later my friend Kate arrived, and shortly after, my sister. It was so good just to have someone to talk to. Mercifully, the bloods were done quickly and Heidi was fairly calm.

Over the afternoon I have had a string of visitors. Exactly what I needed. Being on my own leaves me with my thoughts, and God has so used the encouragement of all of you to keep me strong. Heidi's temperature stayed down for the afternoon, but I have learned not to cling to each good thermometer reading with too much hope. It only makes the disappointment greater.

Ava and Dave arrived again around 3pm, we headed down to the playroom while the nurses watched Heidi. It was good to get out. While we were there, I heard the Doctor on the phone outside.

"That's wonderful news!" she said.

I so wished that the Doctor would say that about us. I longed for those words so much!

Within seconds she was by my side... "That was the Royal Brompton with your results..."

At long last, some good news. The CRP count was coming down at last. That meant, at long last, we had some hard and fast evidence that my motherly instinct was right. Heidi was improving. Her little body was no longer having to work hard at fighting off the illness. She told me the temperature should follow.

I asked her if I could hug her.

I have smiled for the rest of the afternoon and evening. The facts say my baby girl is getting better. I don't care how many more nights we have to stay here... as long as she's improving, I don't care. I am so very grateful. There is hope again. The bleak, confusing cloud of the last few days is showing a glimmer of sunshine through it.

As one of my favourite hymns says...

You fearful saints, fresh courage take

The  clouds that you now dread

Are rich with mercy, and will break

With blessings on your head.

So God, we trust in you

So God, we trust in you

When fears are great, and comforts few

We hope in mercies ever new

We trust in you.

Amen.