Good Days and Bad Days

An interesting weekend to say the least! The thing about being in here is that some days are good, and some days suck. Today is that sucky day. And although the good days generally outweigh the bad, the bad hit hard.
Each day is different and I never know what to expect.

Oliver went into heart failure at 10 days old and ever since he has proven so strong and tough to come this far without surgery.
My poor darling is exhausted, he has been working hard with breathing and having desaturations since Friday, he went back onto Hiflow as he was just so exhausted. Its given him a break and he is finally resting after a very restless day.
His surgery is creeping up on us and although the thought of my baby having open heart surgery terrifies me, i cant wait for this to be over and him not have to fight so hard anymore.

I dont normally write posts like this, I like to share the good things and not the bad, there have been so many hurdles and struggles along the way.
I like to be positive and prefer not to scare people with what goes on in the NICU  but in reality it is a very hard place to be, especially when its your child stuck here.

Please be grateful for what you have in life, dont whinge about the little unimportant things, and dont take things for granted because there is always someone worse off.
And in saying that Oliver is a sick little boy but I know it could be worse and im grateful he is stable. Im grateful he is alive.

But today is hard, and although I would do absolutely anything for my son, im exhausted.
Im isolated, bound to Olivers bed side. Usually for 12 hours a day. Some days more.
I take a break to get lunch and another to get coffee and thats about it.
I go back to the accomodation to sleep, and come straight back first thing in the morning to be with my boy. So he knows Im here and that I love him.

I know our journery will come to an end soon and the joy of taking my baby home keeps me going because I know that my heart will be full and it will all be ok, eventually.
But today its not ok, and being here ive learnt that its ok, for it not to be ok. In the end I know ill close my eyes and tomorrow will be a new day. Xx



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