Too many what if’s

I’m actually suppose to be trying to go to sleep but my brain is once again over thinking everything. I’m totally knackered and I need to sleep I just can’t find the off switch there are too many “what if’s” going on in my head. 

What if the valve is leaking?

What if the heart is enlarged again?

What if the oxygen sats are down? 

What if the patch is leaking?

What if his heart rhythm is too fast or too slow?

What if the meds were stopped too soon? 

Or none of those things could happen and  they are very unlikely and I should be thinking what if everything is fine? 

I need to find the off switch and get some sleep 

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Heart Parent Bingo


I’ve heard several of these and some more recent then others. The most common being “is he crawling or walking yet” really bloody irritates me when people ask why my youngest isn’t crawling or walking at a year old. Well I’m sure if their babies went through what mine did they might not be walking or crawling yet either. I hear other people at groups making their lives sound more dramatic then they actually are. That also annoys me because going back when my baby was first born or going through his op I’d have killed for a drama free life. They sit there silently judging me because I was very over protective of him after the op and he’s not crawling at his age. They don’t know what he’s been through and they don’t know what I’ve had to live through for the past year. I hate the comparisons even between family members what their baby can do well my baby survived open heart surgery at 5 months old so that pees all over what everyone else’s baby can do. My boy will walk or crawl when he is string enough and ready to do it until then I just appreciate all the other firsts he accomplishes.

Where there’s darkness there’s light 


After such dark lonely period of my life I’m searching for the positives in everyday. I try not to look on the negatives although sometimes it’s hard not to. Still thinking about the hospital visit on Thursday but trying not to panic too much. I’m keeping myself busy and  enjoying things with my boys. A few months ago I wouldn’t have been able to be in positive frame of mind so I’m glad I’m feeling stronger to cope with things better.

We are missing someone who comes to see us, doesn’t seem right not seeing her. I hope she knows we haven’t forgotten her or that we have replaced her. 

Dipping

Well the time is getting closer to my youngest having to go for a check up with the cardiologist and paediatrician on Thursday. My mood has been really good up until today I feel like I’m dipping down through not wanting to go on Thursday. I’ve been a little tearful today in honesty but I’m trying very hard not to get too down as I’ve been doing so incredibly well lately. 

I know somewhere deep inside my mind that the little one is doing just fine and it’s just a routine check up but there’s just that horrible doubt in me that something could be wrong and I haven’t noticed like the time he was admitted to hospital and ended up having his op. He looked fine to me and everyone else who saw him. I need a distraction and I’m struggling to find one. I don’t want to go to the appointment alone but I’m going to have to. I’m actually pretty nervous and scared about going. I really want to be excited for Friday because its the little ones first birthday and it’s going to be a wonderful day for him and for us. Right now I can’t be excited because I can’t see past the check up. It’s been so long and I’ve loved not having any appointments to go to for 5 months it’s been bliss the longest time I’ve had since he was born with no check ups to go to. It’s like he was like all the children for that short time. 

I’m not ready to have a 1 year old because off all the stress and anxiety and everything I’ve had to deal with since the baby was a day old I couldn’t enjoy his newborn days I feel like I’ve completely missed out on enjoying having a new baby. There was just so much to think about and worry about and sort out. In my mind he’s only 5 months old because that’s the only time Ive been able to enjoy having another baby. What’s happened with him has completely put me off ever having any more children so I’ve missed out on so much of his life and I’ll never get that chance with another baby again. This is the life I’ve been given so I guess no point dwelling on what have been and just enjoy the next steps in his life. So many things to look forward to and I can’t wait til the day I see that little boy of mine walk or crawl I’ll probably cry tears of joy. 

I’m hoping and praying Thursday goes well and I can once again forget about hospitals for another few months again and go back to feeling stronger like I was before. I haven’t dipped majorly which is good I just feel a little down and very anxious about it. I need everyone to keep their fingers crossed cause I really need good news. 

On a high

My friend and I got together today and I did her hair for her. When I was 16 I trained for 3 years to be a hairdresser I loved every second of it. It’s definitely my thing. So she said she wanted her hair colouring and I jumped straight in and said I’d do it for her. I loved it, I enjoyed it so much it was like being 16 again before any of the bad things happened. She has such long hair it’s like right down her back and she wanted 2 colours so first I applied the brown colour to the top section then pre lightened the underneath and applied a purple Live colour. Then after washing it I cut it for her too. I had so much fun and she really loved the end result. Her smile was amazing I’ve not seen her smile like that for a long time and I did that. Me! I made her smile so beautifully and happy. That’s made my day just doing her hair just made me feel so high. I just wish I could do that every day i’d never feel down or low again. 

My husband looked after my boys which I’m very grateful for so I could get on with what I wanted to do. Because I’ve been feeling so good we’ve been getting on so much better. We don’t do lovey dovey (well I don’t) we jokingly insult each other it’s our thing. Things have been so great in all areas of my life it’s hard to believe I was ever in such a bad place. I know things won’t be this easy forever or every day but I’m loving all the good days I’m having. Makes up for all the crap down days I’ve had. 

My littlest boys birthday is a week tomorrow I’m so excited for it but at the same time I’m not ready. I missed his newborn days/months because I couldn’t enjoy him as a tiny baby because of all the fear that consumed me. Him turning one brings an end to the extremely hard year I’ve had and brings forward the next chapter in our lives. I have so many more “firsts” to look forward to. First Birthday, First steps, first day at nursery, first girlfriend and more. I’m looking forward to celebrating his birthday and bringing to end the year of hell.