Tuesday, December 30, 2008

Lily is sick

Oh joy, oh joy....took a trip to the Pedi this morning, her lungs are crackly, and she has snot from her nose for days, she is coughing like she has been a smoker...it is awful. BUT....the good news...her o2 saturations are holding strong at 97, so we can't complain to much. We cancled her Cardi apt today only to be rescheduled at 3, then come to find out Chris couldnt get off of work so we had to call, RE-cancle it, and then reschedule it again for tomorrow at 1. We have to get to the hospital for a chest x-ray, we have already done a RSV swab, so we are checking for pneomina.
All will be found out tomorrow, hopefully it is just a really bad cold that we will suffer through....but with Lily....expect the worst and hope for the best!
I will update tomorrow after everything is said and done!

Saturday, December 27, 2008

No Looking Back....Ringing in the New Year!



Another Christmas has come and gone again in the McLaughlin household. We Celebrated the birth of our savior along with Lily's First Christmas, which was a big milestone for us, she will be 10 months in 2 days. 10 months ago our life was no more then a vision of hope of what could be. 10 months ago, I cherished every kick from her as if I would never hold her. How far we have come in 10 months; 3 open heart surgeries, 5 hospital stays, 1 heart cath, 5 ER trips, and over 2 dozen doctor appointments later, I would not change it for the world.
People look at me like I am crazy when I say that out loud. But the way I see it, if this wouldn't have happened to us, it would have happened to someone else instead, and no one should have to walk this life. It is the Path Less Traveled, as I like to call it. It is a path the Lord gives to the strong and the brave. If you don't think you are, then the Lord shall prove otherwise to you.
I once thought that God was crazy for giving me this burden...yes...I thought it was a burden. I thought my own daughter was a burden. I wish I could strike myself down for that thought, but this is not easy. It will never be easy...and in a moment of weakness and no faith, I screamed at God asking him why...the million whys...Why ME...Why US....Why My DAUGHTER...Why NOW, Why when I have so much on my plate already,WHY! I was tired, I had an Autistic child, I had a child with chronic breathing problems, I just didn't get it. How did he feel I was strong enough for this. Did he know he would take me to the brink of insanity watching my daughter hold on to life with nothing more HIS will holding her there. Did he know that I would crumble at his feet beseeching him not my daughter, not this day? Did he know I would never fully turn my back?
Yes he did, he has known all of this from the start. He knew all the curves Lily would throw us and he knew my reactions even before I had them. He knew I would yell and scream, he knew I would cry and crumble, but he took my anger, and gave me calmness and peace. He took my tears and gave me courage and strength. He has held me steadfast over these past 10 months, he has never left my side and never will. Through Lily he teaches me about Life, the life I once took for granted before this beautiful and innocent child graced my life. Through her he taught me trust, faith, and hope. We live for today and HOPE for tomorrow, be thankful for what you have because a blink of an eye is all it takes for it to be gone.
Lily is my guardian angel, sent to me, and she has saved me, how could I not be blessed to be living with an angel and miracle?
Here is my Austi boy, Christmas Morning, he is almost 3 and I have no idea where the time went. I love this look, the look in his eyes. The eyes of wonder and innocence. I love the way he looks at the world, when he sees things for the first time. It is true beauty watching him, he is my baby boy always and forever. Him and mama have been through a lot. 2 scorpion bites, 2 huge cuts, and 3 trips to the ER for breathing problems alone, I could not ask for more when it comes to my Austi boy. He is my coloring buddy, my snuggle buddy on a rainy day, and mama's little helper. I wish my precious boy would stay this size forever, but one day I will have to share him....but for now....sharing him with daddy is my main concern...because day by day, he is becoming a daddy's boy......

My big boy. Lucas is now 5 years old and he is daddy's mini-me. Here he is Christmas morning sitting at his new table, waiting oh so patiently to unwrap presents. He is so full of energy, that it takes rocket speed to keep up with him. Something neither Chris or I have and we feel that we neglect his need to run and be free. He is such an independent yet dependant child. If that makes ANY sense. He wants you to play with him but not to help him. He will talk your ear off if you let him. He didn't talk until he was almost 4, so I think he is making up for the lost time. As you can tell by his PJ's he LOVES anything that has to do with CARS. He has always been my biggest challenge. I shed many tears of frustration over him, we had many long nights, and long days. He would scream all day and all night. I use to think he would never be a normal child. I use to think that he was as much as I could take. Once again the Lord proved me wrong. .
The year is coming to an end. In 4 days we will be ringing in the New Year. I would like to hope that last years bumps will be mountians compaired to this year. I would like to only climb hills, but I will take whatever the Lord gives me and be thankful for all of it. Under all of this, there is a lesson, and what my life's lesson is, I have yet to uncover and understand. But when the time is right, I believe the Lord will open my eyes and show me, so I can understand it and write about it. Because I want nothing more then to share this story with you, Our Story, Lily's story!
God Bless.
~Me~

Thursday, December 18, 2008

Hush Little baby don't you cry!


Being home brings its own set of problems. You no longer have the monitors around to confirm suspicions when things aren't seeming to look right. You have to trust your instincts and try not to over react at every little thing. Lily seems to be fine but then out of no where she will let out cries of pain. She won't let you touch her and you cant seem to calm her down. She will cry it out until she works up a sweat and then it is over. It happens through out the day at least a dozen times a day. She hasn't been sleeping like she use to, I know we have to work her back into her old schedule but she no longer will lay down and fall asleep like she use to. Now she screams, I think she is remembering the hospital, where we would have to leave her in the crib and not be able to pick her up due to the lines and wires. She would SCREAM at the hospital, and it broke my heart but there was no way to calm her down, now unfortunately it seems to have come home with us. I wish I could stand there and rock her and sing to her for as long as I possibly could but with 2 other kids, a husband, and house work, there just never seems to be enough time for the little things all the time.

Its all about finding your groove. Lily usually falls back into it after her surgeries and hospital stays, but I think since she is older and now remembers a little bit more, it is seeming to be harder for her this time. Once again, I wish none of this was happening to her, I wish she had her innocence of the world, that she didn't know hurt or pain, but once again, this is her life and we all have to come to except it, Lily has to except it...but not now.....not at 9 months old. For right now we will look at the Christmas tree in awww, and be adorable and innocent and snooty, I mean that in the best way possible. She has such an attitude to her, she is a spit fire, she has to be....she reminds me of me....except in a small package. if she is a pistol now, watch out, she will be a shotgun later...then we are in trouble. I hope everyone has a Merry Christmas if I do not blog before then. Hopefully we have an uneventfull Christmas, with nothing but Joy and Love. God bless you all!

SincerelyJenna

Wednesday, December 17, 2008

Home is where our heart is!

Walking in the front door of our apartment with our precious little girl in tow, was such a sense of relief. We prepared ourselves for the long haul, I was ready to stay for weeks, thinking we would be spending Christmas in the hospital as a family, instead of the comfort of our home. I thought I wasn't going to be able to wake up Christmas morning without a sense of guilt. Guilt of having to pick who I was going to leave alone partially that day. A choice no parent should have to make, all of our kids should be with us at Christmas time, unless they are older and chose to be else where. Lily didn't chose this, we did not chose this, it chose us, God chose us. So we have excepted this all and try to make the best of it as we can.

Today had its ups and downs, the boys were beyond excited to be home, but I don't think as excited as we were, or in that case, as Lily was. Lily fell asleep on the way home, then was wide awake the moment we walked through the front door. She grinned the whole way up the stairs, while we were pulling her from the car seat, and while the boys sat on the floor and adored her. Chris and I decided that ALL the kids needed naps, and that we needed one too. Unfortunately there was so much to do around the house, a nap wasn't an option for me. Lily was laid down in bed after her prayers and she fell asleep a few moments later like she had never left home. She is such a trooper, you would never think by looking at her she had surgery 5 days ago. Unless you pull her top off and the evidence is clearly there. A stronger little lady then I could ever be.

The boys seem to be on a rebellious streak because they have been nothing short of little monsters. I say that with as much love as a mother can with a headache the size of the continental U.S. They wanted ALL of our attention today, not part of it, and when we redirected ourselves towards Lily they both would have melt downs and screaming fits that we didn't love them and how they wanted to go back to grandpa and grandma's. How special that made us feel, we tried over and over to explain to them that we would and will play with them, but mommy and daddy just needed to keep an extra special eye on Lily because she still has big boo boos on her chest. That if she fell or if she crawled, she could end up back in the hospital because of it None of this mattered, we were horrible parents and we were seeming to neglect them if both of us weren't playing with them at the same time. So what did we do???? We packed them all up and ran a quick errand to Walmart. They had a blast....leave it to my children to enjoy Walmart. When we got home they seemed to be in a better mood, they ate dinner then went to bed.

It is nice to be back on a familiar routine, or something that resembles it. It was nice to sit on my couch with Lily in my arms, with no lines. It was nice to lay her down in her bed tonight, it was nice to cook dinner in my kitchen, and it will be nice when I get to go to sleep in my bed,(As soon as I finish this). There is no other way to explain it, it is GREAT TO BE HOME....we all received an early Christmas present!

Thank you all for your prayers, Lily is a fighter, but you all helped with her fight. You all helped with our early Christmas present. God bless you ALL!

Sincerely
Jenna

Friday, December 12, 2008

A new day has begun, how blessed we are!

Well, I have slept for the past 6 or so hours, BUT, daddy was up with our Princess girl and from the updated report I received before he drifted back off to dreamland, she has had a rough go. She has a lot of junk in her chest and she doesn't want to cough it up (then again who would blame her seeing she just have open heart surgery). So they did an easy-pap, this is where the took pressurized air and shot it up her nose so it would open her air way and fill her lungs to make her cough. They didn't give her a choice because if that stuff continues to stay there we could have other problems. My poor ME-ME-moo's, she was TICKED, screaming, had to have 3 people hold her down, work my grandma up, etc, and mommy slept right through it. Can we say TIRED! Good news though, it did seem to help her cough and break up a little bit of the junk, but she still sounds gross, They just took a x-ray so to make sure everything is breaking up in the chest and also to make sure her heart isn't enlarged. I wont hear the results of those for a little while but if it is anything of great consequence I will post about it.

She isn't resting easy that is for sure. She is very cranky, and she does nothing but toss and turn her head and whimper. There is nothing more we can do to make her comfortable without, what the nurses call, snowing her under, or in the rest of the worlds understandings, without making her lethargic, and suppress her breathing. So, it is a catch 22, a very thin line, danged if you do and danged if you don't. So she is having to be a tough cookie, and it is breaking our hearts, no baby deserves to have to deal with this type of pain, she is only 9 months old, she shouldn't know pain, except of the normal kind of falling down. But she knows more then half of the world does when comes to pain. She has fought and will continue to have to fight this fight. I looked at Chris tonight as she laid there whimpering and he told me it broke his heart to see her like this, which I agreed that it made my heart sad also, BUT(I seem to use this word a lot, I think I need to find a new word to use) this is her life, she will be having open heart surgeries every 3-5 years, and there is nothing we can do to stop them except for absolute healing.

What am I going to tell her when she is 5 and looks at me and tells me,"Mommy make the pain go away." That will absolutely break my heart, not that her whimpering doesn't, it just will be harder when she can voice things. It will be harder when she will have to be pulled out of school to have to come back to the hospital for another open heart surgery. Not anything we cant handle, just something that she shouldn't....once again....we are back at my Utopian society.
I ask for the Lords wisdom to help show me the right way to explain her special heart to her, the courage to stand next to hear side without crying while she is in pain and I cant help, and the strength to do this continually for the rest of her life.

Climb tomorrows mountains tomorrow, and walk the path less traveled, life's choices are never easy, we do not have an easy life ahead of us, but life at that. And I have learned, never take it for granted, to cherish every breath of air that fills my lung, every sound of the monitors beeping, because even though they go off for alarming purposes, it means my child is alive, that she is here, fighting the hard fight. That she still has the strength in her to do it. And if the time ever comes that, that strength is no longer there, then may the Lord bring me comfort and hold me steadfast as he does his will and makes my child at ease in his arms, in his home, the Kingdom of Heaven. We all pray that day never comes, but as a heart parent, you know that these chances are there every day you awake and walk to your little one's crib. I have never cherished life more then I do now, since Lily came screaming into my life. She has taught me, with the Lord help of course, that even though living life one day at a time isn't the ideal for everyone, it shows you that you are more blessed with each day, because tomorrow may never come. I use to live life knowing that tomorrow will always be there, I have to say, I took life for granted, I am still here and so is the rest of my family, but I never appreciated life for what it truly was. It is really hard to explain it to others.

Life is a gift, a gift from God, something that should be treasured, because tomorrow, your world could change, your universe could slip out from underneath you, then what would you do?

Thursday, December 11, 2008

Another Update....Happy Medium

So, lets start with the good news, Lily is now breathing on her own, well ok, with a LITTLE bit of help, shes got the little prongs in her nose, right now the medical term has slipped from my mind...which I am ashamed to say...but anywho...she is thrilled that it is out. She looks wonderful, her feet and hands are warm, finally. She is resting easy for the moment, which is saying a lot seeing she was so cranky before it came out. Ok cranky is an understatement, more like she was thrashing around, she almost pulled her CVP line out of her neck, there was blood all under the tape....but....that is Lily, our high maintenance gal, nothing that is shocking for us.

Now, about the bad news, the warm hands and feet could be a result of her fever, which doesn't seem to be coming down with Tylenol. She has cold clothes on her forehead and ice packs under her armpits. It isn't extremely high but not what we want it to be. She is having PVC's or in short, irregular beats, or skipped beats basically. The doctors are keeping their eyes on it, she has been known to have them, nothing to out of the norm for her after surgery but still not something they like her having.

So...I never did say what the surgeon said....here it goes
They decided to make a call in the OR about keeping her Aortic valve instead of discarding it and replacing it with the Pulmonary like we had originally discussed. He found that the narrowing that wasn't able to be ballooned wasn't as bad as he thought from the echo's and ct-scan, and the heart cath. BUT her aorta is defected and will HAVE to be replaced no matter what. BUT he wants to keep HER valve for as LONG as he can. Of course that is the smart move and everyone agrees with him, he just questions if he made the right call, he even said to us, "I'm not a prophet, we will hope that this will last 3-5 years, like the replacement valve would have, but it could also last only 6 months, and that is when we would realize we didn't make the right judgement call."

So all in all, we are back to square one, but we bought our self more time with HER valve....but inevitably, she will have to have the Ross procedure, just not today. So....it is the Happy Medium, you have to take the bad and make good out of it. Take life's lemons, and make lemonade. That's all you can do. Thank the Lord for another day, for the breath in your lungs, the beautiful visions before your eyes, and the precious sounds that fill your ears. You could not ask for more....or at least I cant. One day at a time, we will climb tomorrows mountains...TOMORROW...

God Bless you all, for staying by our side in spirit, thank you for your unwavering kindness, love, support and prayers. We have no words to tell you all how much you mean to us. Even though many of us don't know each other in person. You are all my extended family. Sending you all our love and unyielding thanks.

Jenna

OFF OF BYPASS & GREAT NEWS!!

She is off of BYPASS....yes you read that right...she is off of bypass, she will be upstairs in a hour. ok...now hold on to your seats....THEY SAVED BOTH VALVES...they just repaired her aortic valve.....they left the pulmonary one intact. I am so estatic, I am completly thrilled...I cant believe it. I dont know where this will leave us for surgeries but you can bet your rear end that I will be asking the surgeon when I see him.I cant even begin to tell you how happy I am right now. This is the best news in a long time for us. She did wonderful, spectacular even, she came off bypass with flying colors. I want to dance around the room and sing happy songs. Our prayers were answered in 10 fold. God bless you all.

UPDATE-Bypass

Lily went on bypass an hour ago, or at 10am I should say. So far she is fairing well, no news is good news. From what they said, she was a tough stick for an IV and knowing I had told them NO HEAD IV's, they knew they had to try every possible route before that one. I couldnt bare the idea of my little girls head being shaved in a spot for an IV. Granted I would have gotten over it but I wouldnt have been happy about it. Anywho....we are just sitting and waiting. We are up in the room. If anyone wants to call the number is 602-406-5273, room 15 or Lilyana McLaughlin's room.Thank you for the continuous thoughts and prayers. I will update again soon.

UPDATE

First Incission was made at 8:40am, AZ time, we have yet to hear if she is on the Heart and Lung machine...aka. Bypass. They are thinking the surgery will be 6 hours, so we are looking to see her again at 2 or maybe 3. I dont have much to update for now. It took an hour to get all of her lines (IV's) in but other then that, things have seemed to go smooth for right now. So....... no news is good news!!
Jenna-Lilyana's Mama

ps...I forgot the USB cable at home, so I cant upload any pics today, but first thing tomorrow Chris will going home and getting that for me!

The Dawn is Breaking

It is the morning of surgery, dawn has yet to break, but I am ready. I am ready for my life to shift again, I am ready to do HIS will. I am ready to hand my Lily back over into the arms of the surgeons. I know this has to happen, I know they want to make her heart as healthy and whole as possible. Strength posesses my body today, I woke to Lily babbling in her crib and squealing, such a happy child. Even for all that she has been through, she is a happy, content child. If she can be happy through all of this, if she can be strong through all of this, then she deserves no less then that from me. So, I have a smile on my face, and have found my sense of comfort this morning. I will try not to cry as I hand her over, I will remind myself of this moment, this feeling, and I am sure that our heavanly father will wrap me in his embrace and hold me and my heart close through the hours ahead of us today. I hold my hopes high today, I pray my dreams come true because I once again saw my Lily girl and I dancing in a feild of flowers, a dream I haven't had since I was pregnant, before they gave me the life altering news. So I hope those feilds have some significant meaning, I hope that one day, her and I will be wearing sun dresses and hats, no shoes on, singing and holding hands, dancing in a feild of flowers. A momma can hope....a momma can dream... a momma can reach.....I feel like the little engine that could... but instead of "I think I can" I am going, "I know WE can"
Thank you for all of your prayers..
God bless you all for keeping my Lilybug in your THOUGHTS AND PRAYERS. I know not everyone prays so, thank you to EVERYONE!
Jenna

Wednesday, December 10, 2008

Stregth and Courage



It is the hardest thing to sit and watch our children sick and in pain and nothing we can do about it. It breaks my heart to think of how many sick children are out there and how many might not make it through the night as I lay my head down to sleep. To know that when I wake up that there will be grieving loved ones everywhere and that the process starts all over again. To some they think of it as the circle of life, but when they are children, I don't believe that it is the circle of life, children should be able to grow old, they should be able to play and sing and dance and never should have to know what an IV is or cancer or congenital heart defects are. But that is in my perfect world, in my Utopian society, that is not real life.

People ask me How do I find strength? I have to laugh because I truly don't see myself as a strong person. But I know I can face things when I have to. I just have to ask for the Lord in heaven for strength and courage and put a smile on my face and brace myself for what is to come. If you were to ask me if I am ready for Lily's open heart surgery tomorrow....I would look at you and tell you, I am as mentally prepared for what they need to do, I know that they have to do this surgery, I know what this surgery entails, I know the statistics, I know what the success rate is...BUT...I am not ready to see my daughter hooked up to lines and tubes and monitors. I am not ready to see her sedated again, I am not ready to see her teetering on the brink of death, on the brink of being in the arms of our saviour. But I do know, that when tomorrows dawn breaks, I will be ready, by the grace of the Lord, I will be ready, he will hold me steadfast, he will lend me his courage and strength when it comes time to kiss her goodbye and hand her back over to the surgeons, I will be ready tomorrow, but right now, I am not ready, I am not strong, I am not brave, right now I am a mom, who fears for their child's life, that doesn't want tomorrows dawn to break. Right now, I am small, and all I want to do is run away seaming saying, NOT MY DAUGHTER. But I know it wont change the inevitable, you cant run, this wont go away. So, take today's troubles, and except them for what they are, because tomorrow may never come, AND if it does, it can always be worse

Sunday, December 7, 2008

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

Saturday, December 6, 2008

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

Thursday, December 4, 2008

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.

Tuesday, December 2, 2008

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?