To my Beautiful Baby Girl,
By now we should be more than 2 weeks post-op. We should be well on our way in your recovery. Your operation should have taken place two weeks ago but it was cancelled. Not because you didn't need it - but because another family we're having a really tough time as their Heart Warrior was struggling, we were lucky that you are well enough that you could wait a little bit longer for your operation. But since then we have been given another date and we're going back to London on Wednesday.
I don't want this letter to be like last months letter, so I'm going to focus on what you've been up to in September.
The main thing of course is how incredibly brave you were when you had your CT Scan. You behaved so well on the train journey to London which is amazing considering you were fasting. Mammi and Daddy were prepared and had brought our ipad ready for your ECHO and after watching a few Taylor Swift videos you
fell asleep and let the technician get great images of your Heart, even Dr Jan Marek commented that they were "beautiful photo's" - he even brought his students (clinical fellows) in to see...your anatomy is so unique and that's kind of worrying if I'm honest.
We were a little worried about you needing General Anesthetic to have the CT Scan, especially because of the pressure the left side of your heart is already under there was no saying how you would react to anesthetic. They gave you Midazolam to calm you down before taking you the labs, it was so funny to see you behave like a little drunk person. Even though I was scared I was relieved that you were oblivious to what was going on and seeing you stumble and slur your words really took the edge off my nerves. We barely had time for a panad before they phoned Daddy to come and get you, it was strange to have you come back so soon. Daddy says that when we arrived in the recovery room you were having cuddles with a nurse and you were crying. Boy were you cranky when you came back, we could hear you crying as you arrived on the ward. You didn't know what you wanted and didn't know what to do with yourself. You had a bit of a snooze and then I went with Nainy and Taidy to buy you a lemon drizzle cake from the lagoon - I know you so well, that really cheered you up and you demolished it. So the nice nurses or "Laydee" as you called them let you go home.
We've just started going to Clwb Ti a Fi (a mother and toddler group) on Friday afternoons and I've loved taking you. I've loved being able to do something fun - just me and you. I've loved watching you make everyone a "cuppa tea" and play with the other children. I've loved watching you sit around the table eating a biscuit, drinking juice with the other kids. For a little while I get to pretend that you're just like them, you're a typical 2 year old. I can't wait to get you back home so that we can go back there, because in February you'll be going to Ysgol Feithrin (playschool) with those friends you're making now - and because you'll be one of the youngest in the class I really want you to get used to being in that environment. All I can do is hope and pray that we get to go back there soon.
My Baby Girl, let's go back to London and kick CHD's Ass!!!
xxx
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