One year ago....Happy Easter!

As I sit and reflect the last year, I am nothing but grateful. We are approaching the date quickly for when we found out about Lily's heart being so sick. The day my worst fears were confirmed. April 15Th marks the day our world was changed. The day when everyone started listening to me instead of just rolling their eyes when I told them something wasn't right with Lily. I remember shaking so badly while driving home. I called my dad knowing he would try to bring me comfort but alas, nothing anyone said could calm my fears. I heard over and over, "It probably isn't as bad as they are making it seem."

Although I could understand what they were saying, seeing Lily was suppose to be born with different heart problems then she was. I just couldn't shake the feeling that our lives were about to change significantly.

April 17Th Lily girl and I made the trip to St.Joe's early that morning. She hadn't eaten in 6 hours and didn't give a hoot. She just slept, she slept through her IV, she slept through her blood draws, she slept through it all. Only opening her eyes to make sure I was still there. The only time she cried was when I walked away when it was time for her to go to the OR. That was the only time I allowed a tear to fall. She had fought so hard as it was to be here with us, certainly God couldn't be that mean and take my baby away from me. Surely not! The doctors assured me it would be a fast procedure, that she would recover down stairs and as long as all went well, we would be home in a couple hours.

Words to good to be true. As i sat alone in the waiting room, with dozens of other strangers, I tried to occupy my mind. TV was useless, the books I brought, I only skimmed over, never grabbing my interest. My stomach grumbled, the receptionist at the waiting room desk suggested I go and get something to eat while I waited, that they would page me when she was done. I just shook my head not wanting to go anywhere until I heard the news she was ok. An hour later my pager went off and I was told the doctors were coming to talk to me. I collected my stuff so I could be ready to jump and see her as soon as they told me I could.

Dr.Rhee and Dr.Cleavland walked into the room with such solom looks on their faces. My heart dropped and for the first time I wish they weren't coming to talk to me. I had no one to hold on to, I had no one to cry on, it was just me. They sat next to me and in as quiet of voices as they could use, they looked at me and said the words I had known were true the moment I had set foot into the hospital. "Jenna, her heart is very sick. She is in heart failure. They are preparing a room upstairs. She will need to have surgery tomorrow." They told me we would discuss everything further once we were upstairs, but for now I could go see her. I just nodded, not trusting my voice. The room was silent...nosey people drive me insane. The doctors left and the receptionist grabbed me by my elbow to steady me. I followed her through the haze. All I wanted was to see her, to make sure she was still here with me. I needed to touch her, to feel her hair, her warm skin, to hear her cry.

I walked into monitors beeping and the team around her, getting her situated. It hit me, how was this happening. We left 2 weeks ago, her heart was fine. They looked at it before we left, making sure the function was well. How could they not see this? Or had they and just not told me? Thinking they had time before anything happened with it.

She woke up crying and looking for me. They had pulled her NG so I could not feed her. I asked the nurse for one, but she told me she didn't know how to put it in. I just asked her for one again. She found me the right size and then handed me her stereoscope. They called the Peds floor for a pump. The doctors hadn't NPO'd her so she was ok to have food.While we waited for the pump, I rocked her. The nurse had brought me a rocking chair, so we sat and rocked, and I sang.

Her IV blew, so they paged a nurse from the PTICU. Amy, the nurse manager came down to start one, how nice it was to see a familiar face. She rubbed my arm and said she was sorry, they were working on her room right now. Once again just nodding, not trusting my voice other then to sing with. The nurse brought me lunch, she knew that I was hungry but refused to leave.

Finally when I was less shaky, I finally picked the phone up and started placing phone calls. Not going into very many details seeing we were in the open floor of recovery. About an hour later we were moved up stairs to our lucky room. I saw everyone we had just left, it was nice to see them but not under these circumstances. The day was uneventful, I had packed myself a little bag, for a "Just in case". I guess you could say I knew that we were going to stay. People say I jinxed myself, I say it was mothers intuition. Call it what you want, I was prepared either way.

That night was a long night, she was so cranky but yet so out of it. Her O2Sats were hanging in the 70's all night. They gave her oxygen but it only brought it up to the high 70's low 80's. By morning, she was gray, sweaty, and cold to touch. I was holding her, singing. Singing and rocking. She began tugging when she was breathing, she was working to hard. Sally was our nurse that morning, and she picked up her phone to page Dr.Choi. I held onto her not wanting to let go, Not knowing when the next time I would hold her. They finally came and took her from me. She didn't cry until they laid her down on the bed, it was the faintest cry for the briefest second and then she was under. I could not see her, the team standing around her was so large. The curtain wasn't closed so everyone looked as they walked by, all the while, I just sat and rocked as my tears flowed freely. When the room cleared out I saw her again. Looking so helpless, so listless, so pale. My daughter was very sick and if she didn't get into OR soon we would lose her. They started prepping her for the OR. They were planning on taking her in right after Addison came out. But they didn't come back until 2pm. The doctors didn't feel comfortable going in that night. They assessed her and decided that she could make it to morning but no later....

I finally called Chris, sobbing and trying to talk through my tears. He probably didn't understand most of what I said, but he finally knew it was serious enough to come down. I called my best friend next, she stopped by after school that day. Knowing it was bad, she held me and let me cry. The night flew by in a blur but that day didn't even compared to the next.....

I will right about the 19Th when it comes....I am not ready to relive that day in my mind yet. I want to reflect upon that day when the time is here. I am thankful for it all, but when that day comes I can officially say its been a year since Lily received a miracle from her father in Heaven. Since that day I have never doubted his presences by our side. He is holding our hand in our travels. He holds our hands and guides out steps on our path less traveled!

Off to the right you will see Lily's Second OHS, it is a video montage of last April and what we went through. Also there is Imagine, Life of a CHD parent that explains a lot of what our life is like. What it is like to be a CHD parent.

Happy Easter to you all. I hope you all enjoy your time with your family as we all remember what we are celebrating. Our father died for our sins, and rose again to show everyone that he was willing to do this for all of us. I am happy to call myself a child of God. One of his daughters.

Love and Blessings
Jenna