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. 

One more week

We have one week until Haley's big day. They scheduled it for May 3rd. It cant come fast enough for us simply for the fact that she is a sedation nightmare. We are very anxious for this surgery because she will be very sick after this just to get to a good recovery point. I know this will help her in the long run. We are relieved that it's time but also very scared. Having to send your child to the biggest surgery of her life is the hardest thing I will have to do.

I have music in my head

If I could write out the notes to the jeopardy song I would because that is the song I have playing in my head. This next week is a waiting game, and it's just a matter of time before we find out the next steps for our daughters life. It's not easy waiting, especially when there is nothing that you can do to change the future. She is truely in God's hands now. I really dont know how to pray but God, she's in YOUR hands! If they deem her ready, then I pray that she's strong, and she can handle this very serious surgery. If she's not ready then we face the trach. The trach is not the end of the world, but it certainly changes ours. I dont even know how long she would have to deal with the trach/vent, but I know the things we would have to know and learn would be even more. I think overall everything we've learned dealing with Haley has been a lot. We've learned to look for changes in her, signs that there is something different/wrong. I am very nervous and anxious as well to get it over with so we know what we're facing. Jeremy and I have been splitting up the nights at the hospital. I really hate being apart, but there are nights that she doesnt behave and it makes us feel better that one of us are here. The problem with that is we dont get the sleep we really need. So we are sleep deprived while also dealing with stress. I sometimes feel that my writing is so scrambly. So as I leave I go with this..... doo doo doo doo doo doo doo, doo doo doo doo doop, be doobedobedoo. (well ok not exactly the right notes but you get my drift ;) )

wowsie

It has been a wild crazy week (like usual). Haley is intubate again, has been since last Monday (the day after Easter). We werent able to get our family picture taken because she was on Cpap and then the breathing tube. They think her pulmonary artery is blocking part of her airway causing her to have trouble breathing. After a CT scan and a bronchogram it really didnt show that she needed a trach, but if she doesnt have her surgery soon she may possibly have one to get her there. Her cath is scheduled for next Friday April 20th. That will determine whether or not she has her surgery. Next Friday is a big day, and a very nervous one for us. As of now it's the same ol same ol. We wait. Jeremy and I have been going out a little big more just to get out. The weather has been beautiful! Next week I have to go home and get Ali to the dentist, and then the next week Joe has one too. I am so ready to be home with all 6 of us as a family!!!

Oh and this morning Haley got to be in a video. One of the night nurses won "rookie of the year" and he chose Haley as his patient for his video award. Then while we were on our walk another person came in and filmed with her too. So honoring that they chose Haley

Haley

This picture was taken last week. I love her blue eyes. She's gonna be such a beautiful gal (add those lashes in the mix and wowzer).

Callie :(

My heart is just broken right now for a family we met about a month ago. Being in the hospital (especially the PICU) you meet many different families from different walks of life. This family had a little girl that is 3 months old. She's a twin. She was born premature (of course). And she was diagnosed with Hypoplastic Left heart Syndrome. (HLHS). She had the hybrid surgery (much like Haley). When we were roommates it was very soon after her 2nd band revision surgery. She came in with the breathing tube and she apparantly hadnt ever been off it. They tried to wean her several times but wouldnt tolerate it. They took her to have a test done on her lungs to see how strong they are and she has bronchamalysia. With that she would need a trach. They were told that she wouldnt be able to receive her next surgery (the glenn) either. The family turned to St. Louis and then to Denver to await word if she would be a candidate for a heart tranplant. The family found out that they said no and there is nothing that can be done. Now they have to let nature takes it course. Without the breathing tube she cant breathe on her own. Im so sad :( That has to be so very hard.
Please Father, take away their sorrow if this baby has to die. Help them to turn to you in their time of pain.