Guys I am so sorry for not blogging in like FOREVER!!! We have been so busy settling back in home that its been really hard to find time to steal mummy’s phone and enter into my blog world where I keep you all up to date.
So on Tuesday we all headed back to the big smoke to meet up with the nice people of Crumlin who made my heart all better. They told daddy and mummy that there was still a bit of fluid around my heart and that they still had to keep a close eye on my leaky AV Valve – oh man! what a pain in the nappy. They said I need to go back up again next Monday so they can check to see how I am doing.
Guys I think I am doing great! In fact so great I really don’t think there is any need for me to go back to Crumlin ever.
I say this because I just can’t seem to kick the nightmares at all so I secretly hope that in my next appointment they will see how great I am and tell me I don’t have to come back EVER! Do you think that I might get lucky and not have to?
Every night I go to bed and all I do is toss and turn and wake up every 20 minutes are so in a complete bog of sweat, bawling my eyes out and crying like a baby. This is kind of embarrassing as I am nearly a big girl now! And I really shouldn’t be crying like a baby any more as I am nearly a Lady. In fact my birthday is only 15 days away.
You see every-time I close my eyes all I can see is the people with green coats coming at me with a mask that covers my face, I start struggling and that’s usually when I wake up to see mummy and daddy standing over me ready to give me a cuddle. I have moved back into their room for a while because I hate being on my own now. Ever since Crumlin I have major trust issues. I guess you can understand where I am coming from, so if I see you and start crying please don’t take it personally especially if you are wearing green or blue 🙂 it’s only because you remind me of a few things I wish I could forget.
I know I am so lucky to have my OHS over with. My friends Abbey and Jay have their MRI’s in the coming weeks which means their Fontan surgery is coming up real soon. Obviously my mummy is in a complete tissey over them and is spending loads of time on the phone to their mummy’s and speaking to daddy about them.
I wish she would get over herself. I have already spoken to Abbey and Jay when we all stole our mummy’s phones and had a conference call about the Fontan and we all agreed that it was a walk in the park and we are all going to do super. It’s the doctors and the parents we have to worry about. Man our lives would be so much easier if we didn’t have to spend all our time calming them down and letting them see how well we are doing. I had to literally wake up directly after my OHS and pull myself up in the bed and try to turn over before the doctors realised that I won’t let a little six hour open heart surgery keep me down.
So there you have it guys, I am home, I am doing well and I plan to continue to do so. Now that my surgery is over my goal like always is to continue to help others. Statistically there is another heterotaxy baby due to be born in this country sometime this year. I hope that their family finds our very small group of families living with Heterotaxy. I hope my mummy and daddy can support, help and provide the same strength to this new family as Jacqui, Natasha, Anita and Mark has to mine.
I had a wonderful idea during the week. This year for my birthday I am asking you all to donate to OurLlady’s Hospital in Crumlin instead of buying me a present. Crumlin gave me the best present ever with my repaired heart. All I want is to help them in some little way to make it easier on all the heart babies like me who are to follow. If you would like to help me all you have to do is click on http://www.cmrf.org/sponsorshipPage/show/871 and give something small, anything at all to help us babies !!!
So that’s it guys, I really need to head now because my baby Brooke is coming over for a sleep over tomorrow night and I need to go and make up super fun games for us to play. I would be completely totally mortified if she was bored. I am the queen of parties you know. I was thinking we could make a card to congratulate my cousin Claire on her engagement. I just can’t wait to see her in her princess dress. Better sleep on it and come up with some really cool designs for her card. Love ye all loads guys, your Baby B x x