5 Month Hospital Stay

Where do I begin in talking about having your child spend the first 5 months of their life in the hospital?

We were originally told that Kaylee would only be in the hospital for a few weeks back when we didn't know that her heart defect was worse than we thought and before she came way earlier than she was supposed too. So imagine our frustration when time kepting going by.

Now when I look back on it I think about how fast time really did fly by. We spent everyday there with her (with the exception of one ice day). Time flew by because we were always waiting for a date, whether it be a surgery or growth mark.

We hung onto every word the doctor said as if it was our last. We had our good days where the doctors and nurses would say we were making great progress, but then the days would always follow with days of bigger setbacks than strides. You have no idea what your phone ringing with the hospital number at night can do to your heart. We had it happen on different occassions from her being put back on the ventillator because she is not breathing well, or she had an episode, or they need to put a new central line IV somewhere. It felt like a never ending mental battle.

You know its tough on your child with all the tubes, wires, IVs, and beeping machines. The worst feeling in the world is feeling helpless for your child. All you want to do is pick them up and say everything is ok, but the doctor says its too dangerous to pick them up at that point. You know there is no way that that beautiful little baby girl has any idea as to why this is happening to her and why I was letting it happen.

I went into many depression moments, with some lasting longer than others, but somehow I survived. I had many of days where I felt it was all going to get the best of me and I would just crumble away. I cannot even describe to you the emotional rollercoster that parents of children longterm in the hospital go through. Its a battle never meant to be won.

I can sit and complain and dwell on the 5 months we spent in the CHSU, but then I think of all the children who have been and will be in there much longer than us. I send uplifting thoughts for them everyday.