Home, snug as a bug in a rug!

A Quick Trip...or as we like to call it QT
Well here we are sitting in the ER at St.Joes, our home away from home. I guess Lily missed it more than we thought and didn't want to wait until Thursday to be back here. So she made and unexpected decline in her health and scared the ba-gee-bees out of mommy, so here we sit, awaiting a nurse from the PTICU to come down and start an IV on her. Oh yay! I hope you all caught my sarcasm in that OH YAY part, if you didn't, then you don't know me well enough. I wouldn't mind being a nurse except for the needles part, I am a little needle phobic, to say the least. I have gotten better though, over the last 9 almost 10 months, I can handle a lot more then I use to be able to. Anyways, I detoured from why we are here. Lily has been having a difficult time keeping herself warm, at first we thought nothing of it because we knew she was having valve issues, just as long as it didn't leave her hands and feet we were ok. Well the last couple days she hasn't been able to keep her whole body warm. This afternoon when she awoke from her nap she was freezing, and she was in pants and a shirt, with socks. I pulled her clothes off and looked at her body and it was splotchy in color. I called my best friend, I didn't want to over react and call the doctor's office first and it turned out to be nothing. So Miss Heather picked up her phone and I launched into the, what signs do I need to look for and how do I check certain things. As I explained that her whole body was cold except for her chest and she was having difficulties catching her breath, she asked me to push on her tummy with my finger to see how the color came back. When I did what she asked me to do, the color didn't come back, it took about 20 second until it returned and even then you could still see where my finger had been. She told me I needed to call her Cardiologist as soon as I could, so I hung up with her and gave the good ole' Heart and Lung Institute a call. No more than 10 min later I received the phone call back from the doctors, we went over all of her vitals I was able to take at home and then I told her of the situation of the fast breathing and the cold extremities. I was told to take her into the ER to be checked out to make sure that we didn't need to admit her sooner rather than later. So here we are, sitting, and waiting, go figure, she looks great from what the doctor said. Surprise, surprise… I hope you caught that sarcasm, most don't miss it.
So the cardiologist called AND…… they are sending us home, yay a quick pit stop and then back home, only to come back tomorrow again, and then to go home and then come back on Thursday…can you say a game of cat and mouse? Let's chase our tail? Ring around the rosy? That's Lily for you, no shocker there. Her blood pressure is a little low but everything else seemed fine. Her temperature is normal for now, they told us to keep her wrapped up and put her in the bath if it seems to help, which is seemed to. They told us…"See you tomorrow for Pre-testing." Joy oh joy, what a waste of time, granted I am glad that it wasn't anything serious, I hope I haven't come off as I wanted something to be wrong with her, because that is the last thing I want. I don't want her to have to go through any of this, I hate sitting here being able to do nothing except for waiting, watching, and seeing. The feeling of total and utter helplessness, a feeling no parent ever wants to feel. So…. With all that being said, I will call it a wrap and post tomorrow after all the lab work and x-rays have been done. We have to be there at 2pm, and in all honesty I have no idea how long it all will take, but we are SUPPOSE to come home….keep your fingers crossed.
Jenna

RUNNING TO THE ER

Lily cant seem to catch her breath and is rather cold. The only thing on her body that is warm is her chest. She is splotchy and when you press on her tummy or legs it takes a good 15-20 seconds for the color to even start coming back. They might admit her sooner rather then later.
I will try to keep everyone updated!

Jenna

Preparing!

As I sit here I am preparing myself for the emotional roller coaster that we all are about to face. The uncertianties, the unknowns. I am as mentally prepared for this as I can be . I know what this surgery entails, I know the statistics, I know that it isn't nearly as complicated as her last surgery and we were told it should be smooth sailing compaired to last time. Thats what we pray for, we can ask for no more then smooth sailing and a speedy recovery. I am now counting down the days to the unknown. I dread hearing the monitors again, the constant beeping, the alarms that send the doctors and nurses rushing in. The quite whispers of the doctors all discussing the next plan of action. The first 72 hours are the most critical but once they pass it usally calms down......usually. Calm, peace, comfort, guidance, strength, is all that we can ask for....

I will be updating hourly on the 9th, I will let everyone know how everything is going, even when there is nothing to report, you will get a full dose of my emotions. Chris is going and getting me a lap top tomorrow so I should be up and running once we get there. Please continue to keep my dear Lily girl in your prayers, she has strength and courage I have never known and I could only wish I had. I am proud and honored to be called her mother.

Pending Surgery set for December 9th

Such a precious smile for such a precious little girl. A smile of a fighter, a smile of a warrior, a smile of a true miracle. My miracle, my angel, my daughter. I pray that I will be seeing that smile for years to come, maybe with some teeth in it, but I think that will just be more to the cuteness that she already is. I can not and will not imagine my life without her, I dont want to go a day without hearing her giggle, without her looking at me with her wide curious eyes, without hearing her precious babble. The next week will be heck for me as we watch her recover from yet another surgery.

Lily goes in on Tuesday morning at 5 am for her 3rd OHS. They will be doing the vavle replacement we have talked about, nothing new about the surgery, just with Lilys valve preasure. From September it has gone from 60% to now it is at 77-79%, 80% being considered severe. She was scheduled January 13th for her surgery but it was bumped because her Cardi (Dr.Rhee) didn't want us to wait until after the holiday. We don't want a repeat of last time to happen again. Her heart is strong right now, it has GREAT flow and function, so right now seems to be the best time to act. It was a miracle that she recovered from her last surgery, one that we are not sure that would happen again. So, Monday at 2 we will be at St.Joes for all of her pretesting and then we will come home and spend an evening together as a family, enjoy eachothers company, and then Tuesday morning, we will make the all to familiar drive back to St.Joes. We will walk back through the front entrance, to the registering desk, to the second floor, to pre-op, sit and wait there until they take her back. Then we will be given the pager, to let us know when she is done or if something is wrong. As long as all goes well, and it WILL go well, we will go back up to visit our second family on the 7th floor. And hopefully we will get our good luck room, and hopefully she will recover quickly. Hopefully I wont walk into the room with her chest being open, hopefully she won't get to swollen. Hopefully I will be able to hold her soon afterwards. Hopefully she will come home before Christmas....hopefully. This isn't in our hands, this is in our creators, he has known her before she was mine, he knows her outcome, he knows her lifes plans, he knows when she will be called home, so none of this is a suprise to him, I just hope I am ready for whatever is about to be handed to us. I pray I am strong enough for this agian. Im not right now, but when the day comes, I will be strong enough to hand my life over once again to the surgeon, I will trust them with every ounce of my being, and I will have faith that I will not be alone, that I am never alone, that even in the worst outcomes, I will be ok.
But the only question is, will my Lily be?