Sept 13, 2011

Here we are in the middle of Sept. The other day marked the annivesary for September 11, the day that changed many people's lives. It's been 11 years since that fateful day. We all take for granted that our loved ones will always be here. Never thinking that something as tragic as that could happen to us. That's what I always used to think. All my babies would be healthy. I never thought that anything such as a CHD could happen to us. But the day of Haley's birth was a day that changed our lives. I really do look at life differently now. I hug my babies more, treasure the smallest moments with them, and love being with them. Each milestone, smile, giggle is a huge thing in the life of Haley. She had quite the year. We could have lost her at any time. I have been reading of so many CHD babies losing their lives to this horrible thing. Haley endured 4 open heart surgeries, 4 heart caths, a g tube surgery, a mini stroke, seizures, and many intubations. She has been such an amazing happy girl throughout it all. She has taught us so much. She is behind developmentally, but with her being sedated most of her life, in the hospital what can you expect????!!! She is home now and thriving. Growing is slow, but she is making progress. We still have tubes and a lot of progress to make, but she is here, at home with us. I am beyond thankful that she made it home to get to know her siblings, and find out what life outside the hospital is like. I think we all have those moments that change our lives, things that we never forget. I know that CHD awareness is so important to me now, because I dont want anybody to lose their child because they didnt it could happen to them, it can. I feel like Im rambling on now, so I better go.

Been awhile

I know it's been awhile since I last posted, and I cant even begin to remember where we left off.  Our life has changed once again but in a good way.  Haley had her life changing heart surgery on May 3.  It was a very scary surgery.  It was a grueling 11 hours of not being able to see her.  She came back to the room NOT on ecmo, and she was awful looking.  She had an open chest for 5 days and during that time we had ECMO nurses just in case.  She really flew through that surgery like a rockstar.  The toughest part was getting her off her breathing tube due to the fact that she had been intubated for over a month.  She finally was succesfully extubated around the first part of June.  We celebrated Haley's first birthday in the PICU and it was very special because all of her nurses came and celebrated her life with us.  It is  HUGE milestone to make it to your first birthday if you are a heart baby.  July 1 we were able to move to the 4th floor (the regular cardiac floor) and on July 19th Haley was able to come home after being in the hospital for the last six months straight.  Jeremy likes to say we were in the hospital pretty much the whole year because we basically were.  haley only had been home a week here, 2 days here, a week there.  We made it  6 whole weeks of being at home and we have enjoyed it.  We had a minor setback last week (she ended up in the hospital due to puffiness and a virus cold).  Thankfully she was only in there for 4 days and we are back home.  Now Jeremy and i are trying to really pray about what it is we are suppose to do.  We were financially blessed this last year and were able to stay with Haley the whole time.  Now that reality is back we need to find some income.  The church only gives us a limited income and we need more money to pay bills and just live.  We are not excessive spenders, but food, gas and basic bills are very costly.  We both feel that we can not get a full time job due to the fact we have to travel to KC every 2 weeks for appointments, and haley is still fragile enough to be put back in the hospital at any time.  we need jobs that we can do from home.  I am feeling the stress from it.  our bills are starting to pile up and I dont want to beg for money.  UGH we both are unsure of what the future holds for us here in Kingman, for the Church, for Haley in general and what we are supposed to be doing.  I wish God would give us a life plan for us to follow, but He doesnt.  The scripture that has been our theme is "be still and Know that I am God.  So that's what I must do.