October 2018 appointment

This time 5 years ago we were waiting for the date for Martha's second and what we assumed would be her last open heart surgery. We knew it would be "technically demanding" but reasoned that we much much bigger and stronger than she had been when she had her first operation at 5 days old. But the "what-ifs" were always there. Her recovery was the most complicated and worrying time of our lives and I still don't know how any of us made it through.

Fast forward to today and we are in a place that we never dared dream of. Since April 2017 we have been having 6 months between Martha's outpatients' appointment at the Cardiology Clinic at Great Ormond Street. While it lovely being able to plan our lives 6 months at a time rather than the three months that we are used to, I find that I'm much more nervous before our appointments now because I know that so much could have changed since she was last seen.

Walking past the theatre lifts at the entrance to Walrus ward and I feel my heart pounding, it brings back all the memories of bringing Martha into the ward for her operations. But the ECG and Pacemaker test are usually uneventful, putting the ECG dots and taking them off again usually takes way longer than the test itself. But yesterday that was not the case. I could see the EP looking confused at the screen, he tore off the print-out and continued to study it and I knew something was amiss so I just asked him straight out "What's wrong? What can you see?" As it turned out, her pacing wires were sensing her ventricle rather than her atrium and making her ventricle contract at the wrong time. There were two possible explanations, either a) the thresholds were too high or b) the leads had become misplaced. I sat there while Keiron interrogated Martha's pacemaker and silently prayed that it wasn't the latter.

At set intervals, Martha's pacemaker will run a test and change her settings based on the results. But it was changing the settings to be too high. This might also explain why her diaphragm twitches. The best analogy for this is "using a sledgehammer to crack a nut" there's just too much power going through the leads to make her heart contract. He worked out the lowest voltage she needs and set a 100% safety margin. He also switched off the adaptive mode, so it would still run its test but it won't be able to change Martha's settings automatically. This concerns me slightly because if one of her leads were to become damaged, the pacemaker won't be able to adapt to compensate for this. Keiron said he'd call Dr. Starling to let him know what was going on, but we'd have to come back to Walrus if Dr. Starling wanted to change anything.

Next, it was back up to Cheetah outpatients. She was weighed (15.5 kg) and had her height measured (108cm) and soon we were called in for her ECHO. My stomach was in knots again as I had Martha's hand and Mark's with the other. A few minutes in and there was a knock at the door, I just knew it would be Dr. Georgi. We've known him since the beginning almost, and it's become a running joke between myself, my mam and Mark that he's never let Dr. Starling give us the good news - he's always wanted to jump in first, even if that means telling us in the corridor. He chatted away to Martha but kept one eye on the monitor and watched the technician do the ECHO. He starts getting all excited and said "This is excellent, it has not grown back, it is beautiful, we have had lots of re-do but I think it has finally worked. You will have very happy Christmas!" I was so happy that I could have cried.

A little while later Dr. Starling popped his head through the door asking if Georgi had seen us, so he must have known that Georgi was keen to see Martha for himself. I love that...Georgi has been the one to tell us twice that the Left Ventricular Outflow Tract Obstruction has returned and that she needs further surgery. It means so much that he wants to be the one that gets to give us the good news. With how excitable he gets, I know he is genuinely happy for us.

Once the ECHO was done it wasn't long before we were called in to see Dr. Starling. He asked how Martha had been and seemed thrilled when we told him we'd been on holiday and that she'd coped really well with the flight and the outside pool. He explained that the ECHO looked really well and confirmed that the LVOTO hasn't returned. She does still have Aortic Valve Regurgitation which we need to continue monitoring but it's not at the stage where it needs to be managed with drugs just yet.

He wanted to change some of the pacemaker settings to see if we can stop it from twitching her diaphragm, this might also stop her draining her battery so quickly -  there's roughly a longevity of about 7 years remaining. She has grown 4cm since she had her chest X-Ray in April so it will need to be done again at her next appointment. There isn't much room growth left in her pacing leads and he isn't certain of their integrity. He predicts that rather than just replacing the leads he'll probably decide to change the entire system and the next one will sit just below her Clavicle bone rather than it's current home above her left Kidney. Martha doesn't know this yet but I'm on the look-out for bricks to put on her head to stop her from growing.

After a flying visit back down to Walrus to make the necessary changes to the Pacemaker, we made our way back to the train station. We didn't take a pushchair for Martha yesterday for the first time ever; she walked all the way from Euston Station and back again, it took almost half an hour instead of the usual 15 minutes. Once we were at the station we ordered drinks from the cafe and wrote our update texts for family and friends as we knew they would be anxiously waiting for news at home.

It was way after 10pm before Martha got to bed last night so I've kept her home from school today. She's sat next to me on the sofa in her PJ's and dressing gown. We've watched the Gavin & Stacey Christmas Special because as you know, once we get our good news from London - Christmas can officially begin in our house.

Without a doubt, the best decision we've ever made in our lives was to transfer my antenatal care to UCLH and have our baby daughter looked after by Great Ormond Street Hospital. I'm grateful every day that our family was in a position where we could facilitate that move.

Now, we have to get dressed because little Miss Martha has another appointment in a couple of hours, this time it's the eye clinic. It's all go here.

Thank you all for your messages of support yesterday, we read them all and are so humbled to have you all behind us.


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