tbt- 7.6.12- thankful for the little things...

Today was another unexpected trip to the ER for Hayden- he had some issues with his incision and needed to make sure it was not infected. Luckily, we were surprised to be sent home for the first time, not to CHOP-

So tonight I am thankful that my entire family is under the same roof. It seems like something silly to be thankful for, but when you spend part of your day packing everyone up for an unknown amount of time in a hospital, then happily unpacking a few hours later, I am once again reminded to be thankful for the little things in life...

I am so sad that our family has to go through so much day after day...I share the major events on facebook and this blog- but there are daily struggles that only we know about. Like every three hours I have to walk, rock and sing as I try to feed Hayden some of his bottle. The entire time I find myself internally praying, pleading- Hayden please drink your bottle- please just suck for a little bit...please...only to have him take 10ml...

And then there's that damn NG tube that I love and hate- with it Hayden's reflux is at its highest and he tries every day to rip it out- without it Hayden would starve. I have daily anxiety about that damn tube and him pulling it out. I get ill every time I have to put that tube down his tiny nostril all the way to his tiny stomach. Can you tell how much I HATE it?!

Every time I allow my eyes to close at night and find some sleep, I wake often throughout the night either to a beep sounding a feed is complete, or to Hayden coughing, gagging, choking- and every single morning of Hayden's precious little life I have woken up and the first thing I do is check to make sure he is breathing- that he is alive and we are blessed to have another day together. Because as I have said before- every day with Hayden is a blessing. I have only been a heart mom for 9 months and I have already known far far too many heart warriors who are as healthy, or unhealthy (however you choose to look at it) as Hayden who have lost their battle far too soon.

I could go on and on about our daily struggles- but you get the point. Hayden has taught me more than I could ever dream to teach him- most importantly to be thankful for the little things in life. I truly hope that Hayden has taught you that priceless lesson too...so, what are you thankful for tonight?