Endurance and Serenity...No place like home

It has only been a week since we had been at St. Joe's, but it seems so much longer, and yet so short. Hospital stays seem to move at a faster pace, to where 12 hours only seems like 3, and 1 weeks seems like 2 days. (This is only while you are actually at the hospital. When you are at home time moves by as it normally does.) Yet, as you watch day by day, you see the recovery process and it is such a slow one. Ours was a bit faster then normal, or should I say Lily's was. She has lost roughly a pound since check in, though you look at her and you could never tell. She doesn't look like she had surgery 7 short days ago. She is a trooper, she endures all that is thrown her way and still smiles: sort of, (Abby, Alicia, Jamie, you all share the experience of Lily in not such a happy mood) You can't help but love her, she gives you faith, hope and courage. She gives me strength and courage as I face the new part of our lives. I am up for the challenges, as she has never made things easy in the past when trying to over come hurdles.

As we got ready to head home all the normal fears ran through my mind. Is she ready to go home? Have I learned everything I have needed to about her at home care? Is this truly the last time we will embark on a surgical journey? Will we never have to sit the long hours in the waiting room ever again? Will I never have to deal with the long weeks before surgery again, and the sleepless nights leading up to it? It all seems surreal, like I have dreamt it all, that Chris will come in and shake my shoulder and tell me it is time to get ready to head to the hospital for surgery.

I have a sense of serenity as I look ahead. I see nothing but blue skies and steady sailing. I am in no way saying there are not going to be bumps or some rough seas to over come, but nothing of the extent of the last 2 years. I look towards tomorrow with a grin on my face, I can actually see myself with Lily dancing in our Field of dreams. With our matching sundresses and hats.

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Since my pregnancy, I have not dared dream that dream, but yet I feel it within my grasp. Who's up for helping me find a field to go dancing through? Who wants to join us for it? My heart is light as I type all of this, tears burning behind my eyes because of the happiness I feel. As I listened to the beeping of monitors and the alarms of others, it hit me in full force that we will most likely never be on the end of those again. They will be nothing but a memory to me, to her, to all of us. I should never have to tell the boys again that their sister has to go in to have her heart fixed. I will never have to watch them cry their tears of fear and confusion and hear "Why is sissy's heart broken?" "How long will she be gone?" "Is sissy coming home?" "Mommy, can't the doctors just make it better?" The innocence of children.

As I look at this picture of Lily on the toy, I can't help but think of the many miles I walked around the unit just to get her to settle down from her restlessness. I also see an NG tube, something we hopefully never have to deal with again. Although, after being home not even 24 hours, her puking up 3 meds kind of has me rethinking that previous statement.

She captured the hearts of many up on the floor, she gave others hope that there can be a future. She did to others, what others use to do to me. I remember when she was a baby, I would see older babies, toddlers, and children on the floor, and I would think to myself, "There is hope of tomorrow." Even when the doctors try to reassure you, sometimes you just can't grasp that reality, but seeing other children helps give you that hope. Lilyana has always given me hope, but I am truly glad when she gives others that same hope.

We are home , I still can't say that enough. We have to get adjusted to the 2 times a week blood draw until we can get a home INR Meter. After talking with a friend we are going to try to set up an auction to help pay for the meter which cost $2,000-3,000. It is extremely pricey but this is something that will be used for the rest of her life. It will stop us from having to go into the lab and having a tube of blood pulled. INR test meters are like checking your sugars, a little poke on the finger and you are done. Many wonder why we don't have our insurance pick up on it, well here is the thing. Blue cross blue shield does, but it will take them months to approve it, then trying to find a supplier who is networked with our insurance, lets just say near impossible. But if you pay for it out of pocket, once the insurance approves it, you can submit your receipt and then they will reimburse you. Yet they will not pay for the supplies and testing strips and such so it is all out of pocket costs.

All very frustrating things, yet I will take the frustration. We will get things settled down and put in place, we just need a few days of being home to get things under our belt.

This was while we were still at the hospital, there is nothing better then Daddy's arms. She is a daddy's girl through and through. She would scream and cry when he left, he never could stay long enough for her liking, and when he left he didn't take her. It broke both of our hearts, so it was beautiful joy to watch the two of them tonight when we got home. Daddy loved on his girl and she gave that love right back.

This photo I am going to have framed, it made me teary when I took it, and it makes me teary looking at it. He use to say he didn't want a girl because they are to much trouble, well she may be trouble, but she is beautiful trouble. And trouble has daddy wrapped around her little finger.

Well this wraps up this blog, my little princess is sleeping away in her playpen in my room, so I think it is time for me to head that way also. Tomorrow is going to be a long day of shots, blood draws, and forced meds, yet even with that awful line up, all I can think is, "We're home."

My heart could not swell any bigger tonight then it is right now, I am so proud of my little girl and all that she has endured over the last 2 years. As I look at this last picture all I can think is, She truly is a Princess Warrior, who deserved nothing less then a ride in her wagon chariot!

Goodnight everyone! Thank you sincerely from the bottom of my heart for everything. To all my heart mom friends who stopped by; Heidi, Molly, Melodie, Erin, Bridgette, it was great to see you all! Then to the new heart moms I met, Abby, Jamie, Alicia, it was wonderful talking to all of you, meeting your little ones. You kept me company during the fast long days. As we all know, sometimes company up there on the 7th floor is usually what keeps us grounded.

Ending this blog I am going to ask everyone for their prayers tonight, not only for Lily, but for a special heart friend of Lily's. Baby William, (Abby's little boy), is having a bit of a rough go lately. They were supposed to go home today also, but with some recent finding in an echo, they were detained. I was kind of hoping we would all be sprung on the same day, but dear little William seems to be eating up the attention he is getting up there. May his next echo on Thursday prove better then the first, so he can then be released and go home and spend time with his family!

Love, Hugs and many Blessings

Jenna