Helping Babies – One challenge at a time!

So being that I love to keep myself moderately busy – ok ridiculously busy. I decided earlier in the year that I wanted to raise money for Bliss and SSNAP (the John Radcliffe baby unit) & came up with the silly idea of doing a triathlon.  But being that I like to do things a little differently (or because I’m insane if you ask the people that know me well!) I thought that just a triathlon wasn’t hard enough so we’d make it a 179 mile triathlon along Offa’s Dyke which has a ridiculous number of hills involved. Oh & we’re only giving ourselves 6 days to do it. And we’ll be camping (because having a good nights sleep in-between would just make it too easy!).  I’m hoping that if I can show a fraction of Gwendolyn’s determination we’ll complete it all on time, without breaking ourselves (I’m slightly dubious about this one) and raise a lot of money for both charities to help support other parents that are going through what we went through & to help provide much needed equipment for the baby unit.

Jon & Gwendolyn will be support team (I think a lot of the funny updates will mainly be about Jon coping with moving the tent, looking after Gwendolyn & both dogs) and my brother, Robert, has been roped in to run it with me! I’ve spent the last 4 months training whenever I can, running with Gwendolyn (who thinks watching me push her uphill is hilarious) Gwen laughing - trg

So please if you have 2 minutes, have a look at our fundraising page and if you can spare just a few pennies it will go a long way to helping parents and poorly babies alike. In the meantime I will try & provide entertainment in the form of trying to complete 179 miles in one piece!!! http://uk.virginmoneygiving.com/SomeoneSpecial/GwendolynsChallenge

Jon & Gwendles Uniform

My very smart looking support team (pre challenge of course)!

Gwendolyn giving me a hand with my training

Gwendolyn giving me a hand with my training

How do you say Goodbye?

First of all sorry in the delay in the story continuation.. life just seemed to get in the way. But then given the title of this part of our story that’s an incredibly good thing.

When we left off Gwendolyn had just had an ‘exciting’ ambulance ride back to the JR after being in Southampton for her surgery. We’d gone home for a couple of hours that night to mainly shower, change our clothes & try & take a deep breath. The next day her blood pressure had improved but her lungs were inflamed from surgery & she was struggling with her oxygenation even whilst ventilated.  Over the next 2 days she got worse & worse & we found ourselves spending every waking minute at the hospital. The poor doggies only saw us to sleep, although I think they got spoilt rotten by our local friends!

Morning of Sunday 3rd August she was on 100% of any machine she could be hooked up to to try & help her get enough oxygen.  The Doctors & Nurses were constantly trying to think of anything at all they could do to help her or make her more comfortable. I actually felt guilty as I could see how much they were investing in her physically & emotionally& were doing everything they could think of to try & give her time to recover from the surgery.  With nothing else left to try the decision was made to start her on a course of steroids & more diuretics but we were told to prepare ourselves. Watching her saturation levels on the monitors gradually dropping lower & the levels we were willing to accept dropping lower & lower, I think we’d begun to think to ourselves that maybe we need to start preparing ourselves. Having seen so many other parents leaving the ward to call family & friends to ask them to come & say goodbye, I was now the one putting on a brave face on for the other parents on the Unit as I headed out to make some phonecalls.

Within a couple of hours of the phone-call our closest friends had rushed to be by our sides. Now all of a sudden here we were being the parents with the screens around the incubator. Every kind of emotion goes through you by I actually felt guilty. Part of me hadn’t & wouldn’t accept that we were saying goodbye so I felt unfair. Unfair on the nurses looking after us as Gwendolyn’s needs increased. Unfair on the other parents who were trying to be optimistic about their own babies. And most of all guilty about having to ask people that we were so close to to come & say goodbye, knowing that they would never be able to forget being in that ICU to see such a helpless tiny baby.

That night (day 29) Gwendolyn had her first pneumothorax.  The team sprang into action around her, inserted a chest drain & managed to stabilise her as best we could.

Day 30. 4th August.

Our parents arrived that morning to see her & we took it in turns to take them in. We both seemed to go into practical mode, being factual & trying to keep our parents calm in that situation.  It was when I took my brother in last, that it happened. Everyone else was sat outside the ward in the family room waiting to go to coffee.  Rob & I had been stood there for maybe 1 minute before I saw her sats drop significantly. Her nurse, Emma, was immediately doing suction to try and help her.  I could see from the looks on their faces that this wasn’t the same as the other periods of suction over the past couple of days.  I turned to Rob & calmly told him that we should leave them to it as it would take a while. As I ushered him out the door she crashed.  I have no idea how I stayed so calm. I asked Jon to get everyone together & point them in the direction of the coffee shop but that I was going to stay there & he should come back once the family were off the ward.  Even with the crash alarm sounding & our consultant Anna running down the corridor, Jon & our families had no idea it was for Gwendolyn. I think I stayed calm because I’d kept saying to myself that if Gwendolyn felt me panic, she’d panic. She was hardly aware of what was going on around her because she was on so much pain relief & sedated, but I felt like the only thing I could do to reassure her was to stay calm for her.

Jon came back and we waited in the family room for news, supplied with biscuits & tea from Rachel’s stash. After a short while one of the girls came out & told us that they had her back but they were in the process of inserting another chest drain as she’d had another pneumothorax. Eventually, our Anna & Emma came & joined us.  It was the second time that day they’d had to tell us that she wasn’t good but this time this conversation was the one that no parent wants to hear.  Her saturation levels could be raised above the low 70’s at this point & there was nothing else to do. Any parent that has ever had to agree to a do not resuscitate will know how it suddenly hits you that there might not be a way out of this. This might actually be it. Anna & Emma were amazing.  I wanted to hug them as I could see how this was affecting them. But now we had to decide how to say goodbye.  How do you say goodbye? How can a parent ever prepare themselves to do that. After talking at length to Emma & Anna we decided to have her blessed that afternoon. We thought that it would be to do it rather than regret not doing it.

The ICU chaplain was with us within the hour.  He was very gentle with us & talked to us & Gwendolyn.  One difficult question was whether to take photos. Emma took photos & I’m so glad she did as looking back now it was a moment that needed to be marked.

Her whole time in the ICU up to this point Gwendolyn had been a pickle & this was definitely not any different. In true Gwendolyn form about half way through the blessing she made sure she had everyones attention. Her sats dropped & dropped & I could see the nurses poised to rush in. But it seems that once she had the attention she was happy as her numbers improved ever so slightly as the chaplain finished talking.  Well that or she had her own opinion on blessings!!

blessing

 

I spent the rest of the afternoon holding her on a pillow on my lap or holding onto her hand.  She made it to the evening.  The staff must have known that we’d never leave that night as they made up 2 beds in a room next to the ward rather than us crossing over the road to the welfare house. I think at about 0230am they convinced us to try & sleep. I lasted until about 6am before I sneaked back onto the ward. She’d done it.  She’d made it through the night.