Gaining perspective

It's amazing what it takes to truly gain perspective on what's important in life. Sitting here, writing this in Claire's hospital room I feel blessed.

I was at a tipping point. I honestly felt like the littlest breeze is all it would take for me to lose it. Flat out lose it. It had been more than a year since I'd had a full nights sleep free of worry. It had been seven months since I hadn't worried hourly about the well being of Claire and whether today would be the day that we need to take her to the hospital for not eating. It had been longer than I could remember since jake and I had felt a relationship other than the constant strain of parents In desperation to get their child to eat. And poor Owen was feeling the brunt of it, despite his chill,happy-go-lucky nature it was apparent that he felt the tension. And I couldn't take it any more... I needed a break from it all.

And then I heard the news. On the day that I had planned to go out for a 'girls night out' to escape from the downward spiral I was feeling I got the news that my co-workers baby (who had the exact same in-utero diagnosis as Claire) had passed away. At 23 weeks pregnant her little baby who had braved the same prognosis as Claire was gone. My heart sank and all of the fear and desperation and agony that I faced for so many months came rushing back to me. So easily this could have been Claire. I had been told time and time again that this fate could have been ours. Only god knows why Claire made it and her baby didn't. I wish I had these answers but I do know that all of a sudden I wasn't so ready to lose it. Claire's feeding problems didn't seem quite so bad now.

She is here. And that's all that matters.

She is always going to be our challenge. That I know. But these are challenges that we can live with.

So as I sit here, now with little miss Claire in my arms I know that we're blessed. Getting a feeding tube is just one more step along this journey of our lives. And this little fighter is going to continue to show us all just how strong she is.

6 months and 10 pounds later...

I am actually being presumptive saying 10 pounds because Claire hasn't officially hit the 10 lb mark -yet- but she should any moment. She has reached the 6 month milestone though... A half a year old already! It is really quite amazing to see how far our little peanut has come in these past few months, never ceasing to show us what a fighter she is and how the world pretty much does revolve around her.  This post is a celebration of how far we've all come over these past months but it's also my way of getting out some fears and frustrations because despite how far we've come, the journey will never be over.

 I honestly thought that life would be easier at this point... Easier than the multiple daily visits to the NICU, easier than the worried months of pregnancy or the first days home without 24/7 support.

But it isn't.

 Each day is still really hard in its own little way, but amazing as well. Our daily (hourly??) struggle at this point revolves around eating and weight gain. Despite never having made it onto the growth charts, either in utero or after birth, Claire has maintained her own growth curve for the most part. Since we have a scale at home and are weighing her weekly (sometimes more frequently depending on our level of concern/paranoia) we know that she averages a growth rate of 4 ounces a week. For a couple weeks last month and now just the past week she has only put on an ounce a week... Which is concerning to us and her pediatrician (who up to this point has been fairly lax, sitting back to see what she does).

The aspect that makes things super hard for me is that there is absolutely no consistency or any real answer as to why. Why she doesn't get hungry like most babies, why she eats so little when we can get her to eat, why she eats so much better for her dad (sometimes), and whether there is something else going on that we just don't know about. I guess that is what I really fear is that there really is something else going on that just hasn't been found yet. 

We have seen a nutritionist and occupational therapist and are scheduled to see an inter-disciplinary team at Primary Children's hospital in December about Claire's feeding and weight issues. It seems like most weeks have turned into the game of 'two steps forward, one step back', but I guess as long as we continue to move forward... 

****this post took a couple weeks to finish- as of today Claire is 10 lbs 4 oz***