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Tuesday, May 12, 2009

Take a deep breath

Yesterday was a blur. Today is not much different. But I am more able to talk about it.

The facts are in the post from yesterday, my baby needs a new heart. There is so much involved with the process and so many questions associated with it. I hope to be able to give more insight with this entry and help everyone understand the process, as much as I can.

BabyGirl's heart cannot be repaired. The coronary artery branch is too deep for a successful and permanent repair. 14 doctors here in Arizona agreed this was too big for them, which is why they sent the file to UCLA. They work closely with the doctors there, and I feel comfortably going there and not questioning alternative hospitals. UCLA should be responding soon and everything will start rolling when they do.

I have yet to really learn whats going to happen myself. How long can she wait? How long will it take? When do we have to leave? How long will it take to recover? How long do we have to stay there afterwards before we can come home?

The pressures in BabyGirls heart are not favorable. They are not critical yet, but not that of a healthy heart. We don't know how long before symptoms get serious, which is why the doctors are working at a steady pace to get things rolling. We were told to watch for any complaints of chest pain, and to keep her activity calm. As she grows and changes, her situation will worsen. My prayer is that this is all preventative and we don't ever have to face the 'symptom' that I am so petrified of.

We go Thursday morning to meet with the transplant nurse. She is the liaison between us in Arizona and the doctors in Los Angeles. She will get BabyGirl completely evaluated for the transplant, including compatibility testing and monitoring her status. I don't know how long the evaluation process takes, but once she is completely ready and they put her on the list for a new heart, we will be required to move to LA and wait there. We need to be readily available for the phone call. We will be set up with counsellors and other people to assist us with the preparation and transition. I still don't know who exactly and what they will do, but I will find out soon I'm sure.

Besides the fear of what the future holds for my own daughter, I am 2nd most affected by the thought of the donor's family. The terrible reality that someone else will be loosing their precious little one. The whole concept of organ donation is amazing and truly a miracle. I know and can completely grasp the concept that the heart given to my BabyGirl will be one that would otherwise go to waste if not given a 2nd chance to live. But no matter how much I understand the logistics of it, I will eternally have a prayer in my heart for the family loosing their little one's soul as that heart gives my precious daughter a chance to experience life.


Hubby's work is our survival right now. Not only is our insurance (through his work) working with us already to prepare for the transplant, but he also has the ability to transfer to a location over there and work when we have to relocate. I will need to leave my job, sooner than later. I need to get things prepared. I need to pack up my things for storage, be readily available for appointments, and if nothing else- just be home with my babies enjoying life. When we move to this area that costs twice as much to live at but having half the income we have always had, it will be one of the biggest challenges. Still so many questions and decisions to make, but I won't make a single one until we get a better understanding of timing.

I have often said how much I wanted to live in California. In my heart, I am a California girl who was born in the wrong state. I love everything about it, and feel so at home there. Bestie and I joked often about living 5-6 hours apart because it would be so easy to see her more. I always joked about living by Disneyland since being there with my family is the most amazing feeling in the world to me. I have a co-worker and friend who always tells me to move to Hollywood because BabyGirl was going to be a star. But never in a million years did I imagine it would happen this way though. Nor would I ever cash in those wishes and jokes for it to become a reality in this form.

I had a friend tell me she was going to pray for healing, peace and hope. I don't think I could have requested better prayer points than that. Strength is something everyone keeps telling me Gabriella and I have, and it is a wonderful thing to have, but never in my life have I felt more weak and helpless. For us, our families/ friends, it is about hope in the outcome, faith in our God and peace as we live this. I don't think a single one of us needs to be a warrior, but rather obedient children of God. Strength is for hardships and battles. But this is something different. This is not anything anyone can battle. All we can do is put our reliance on God to control this situation and embrace every single one of us as we travel to the outcome. No amount of strength from armies of people can control this situation, but rather the faith and hope in God. She was God's, she is God's, but He gave her to me. She's mine, too.

But if there is one more prayer request I can ask of you, is for my LittleMan. Regardless of the love and support we have, things are changing for him, too. My attention will no longer be evenly spread over my 2 babies. He is so young and learning about himself and his place in life, and just as he is doing that, he will be forced into this situation just as we are. Hubby and I, being adults, can learn to mold to whatever we are given, but I fear it won't be as easy for LittleMan.

How are we doing? I wish it was easy to just say we were doing okay to be an example of courage for everyone. It's just not the reality of it. Our baby, the little girl who MADE us parents, the little girl we have lived our lives for for over 4 years now, is facing something bigger than most people ever will in their life. And no matter what I do I cannot be involved in the outcome aside from making sure she is always at her appointments and being taken care of. No matter how many positive thoughts and faith in God I have, I need to remember that small bit of reality. The reality that we could loose her. It would be foolish and naive to think it isn't possible. So until that day comes when she is running around with a healthy heart and free of complications, I won't be truly okay. I know this feeling that my arms and legs are numbs won't subside. I know this confusion and battle in my brain will continue on. I will survive, and I will be faithful, but I won't find myself again until my "mini-me" is healed and healthy.


Tatiana @ averygoodyear said...

I'm here via SortaCrunchy's blog, and just want to convey my support for your family. What a difficult, gut-wrenching time you all must be going through. I hope we hear good news about a donor soon and a successful transplant.

Corey~living and loving said...

My thoughts are with you. I have had you all added to a few prayer chains.
I am so relieved to hear that hubbies job can remain. that is good news.


Megan@SortaCrunchy said...

thanks for sharing the update, K. That is good news about hubby's job. What a blessing that at least that part of this situation is taken care of . . .

I know you'll update us as you are able. Please know we are always around if you need to talk.

Marla Taviano said...

I came from Megan's blog. I'm praying for you and your sweet little girl. I can't even fathom what you're feeling right now. Praying God wraps you in His arms and gives you comfort like no one else can. Hugs to you from Ohio!

Karen said...

Thanks for the update. What a blessing about Hubby's job! It's the little things, falling into place, the small moments, in which we can best see His hand, sometimes...

And I will definitely keep your LittleMan in my prayers, too.

You are continually in my thoughts and prayers...

Theresa McAuley said...

Kristi, I have just been made aware of the terrible time that you are going threw and I would like to offer two different comments to you. The first is I am truly sorry for you and Paul to have to go thre something like this. I can not understand but I cn tell you i will pray for you and your family and be there if you need me in any way for your daughter. The second is I have a very good friend of many years that works for cota, that is Childrens Organs Transplant Association, she is the Developemtent manager, basically the one who goes to families in need and sets them up to start the correct fundrasing road for there child. They are a non for profit and really are just a wonderful group to work with. They charge no fee and 100% of the money you make goes directly to you. Here is the web address it can lead you threw all the information.
I just felt likr since I had this information I should share it with you and offer any asistance since I am good friends with the lady that you would meet should you go this way.
It has been a long time since you and i have had any communication, but this is important and I do truly wish you well and you are already in my prayers. This cam be between you and I or u and I and the world.I'm comfortable wih either. at this point it is about you and your daughter.
Please take care and if you decide you need anything I am a note or call away.
Take care, Theresa~~

Anonymous said...

It's good news that Hubby can relocate his job, but I am sorry it's going to be such a struggle financially on top of everything else. Can you get any help with the costs?

I came here first thing this morning to see how everything was. You are constantly in my thoughts, and will be through all of this.

I know that numb feeling you talk about- the arms and legs one, but I can't imagine how much worse it must be when it's your child. :(

Much love. ((hugs))

Kara said...

I love you.....

Mary Ellen said...

Came over from Megan's blog. Our prayers are with you Kristi and your entire family. ((hugs))

Mary Ellen
Clayton's Momma - Jan 05

Stephanie said...

Hi. I'll keep this short, because I know you have a lot going on right now! I just wanted to tell you two things:

1. Megan (at SortaCrunchy) asked us to pray, and I wanted to let you know I'm praying - for "healing, peace and hope."

2. I don't know what part of AZ you're in, but I'm in Phoenix (east valley). If there's something else I can do, my email's in my profile.

If you don't have a chance to reply, I understand. You take care of your kiddos and know that Your Father is taking care of everything.

Leeann said...

I am so sorry I am just finding out about all of this. I will keep baby girl and the rest of the fam in my thoughts and prayers.

The Thorne Family said...

I'm here via Ingrid and I've e-mailed you directly-but just wanted to let you know that your family is in our prayers. I am recieved a heart transplant almost 19 years ago-I'm the one Ingrid mentioned in a previous comment-and I'm here if you have ANY questions. You will find my contact info in my e-mail. God Bless you!