Friday, January 29, 2010

Help Jakey Blankies

The below post is taken from a fellow heart mom's page. She is asking for donation's in helping make more of these fabulously soft blankets for the heart unit Lily was just at. These blankets are incredible, they are so soft, I want a big one made just for me it is so soft. But getting to the point. As you will read below, they are a huge hit on the floor with all of the babies and parents, and more are needed again this year. Any little bit of a donation helps towards this. As heart parents we always want to try to give back, but as a heart parent with an Angel, we always want to help the legacy and memory of the baby live on in others also. So please, any little bit helps, see Lily loves her Jakey Blankie(we received ours during our last stay). To help donate you can follow the directions below, and to get to Jake's page, just click HERE. We are all quick to donate to Cancer Foundations and Relief Funds, but lets take in account all these little ones who endure so much. Heart babies don't get the media attention needed, so in the mean time lets help make them as comfortable as possible.
Sincerely Jenna

Hi Everyone,

This is a HUGE plea to anyone that is listening!! I am doing a jakey's blankies donation drive over the next week and 1/2. I want to try to earn as much money as possible to make blankies for the heart unit that Jake was in. I know it won't be nearly as much as we earned last year, (We were able to make 120 blankies!!)

but even 50 blankies would be a miracle. The heart unit has had a HUGE response to these, both by the parents and the children. The parents snuggle with these blankies while the children are in surgery, and the kids snuggle with them the rest of the time. I LOVE it!
So, here is my plea:
I know times are tough, but if you are able to spare even $5, please donate to Jakey's blankies. You can donate on my paypal link (just to the right-it takes credit or debit cards or paypal payments).
Or you can mail a donation to:
Jakey's blankies
c/o Bishop Anderson-Summerfield Ward2791 E Los Alamos CtGilbert, AZ 85295
Please Make checks payable to: Summerfield Ward

Also, if you are able to copy and paste this post into your own blog, or put a note on your blog about the donations, I would really appreciate it. I want to get as many donations by Feb 9th (Jake's Angel day)-but I will never turn donations down! :)
Thank you all for the donations so far. I want to do as much as I can for Jake, and this is one of the last things I can do that will keep his memory alive at the hospital.
If you have any questions, please e-mail me at:

Wednesday, January 27, 2010

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.

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

Tuesday, January 26, 2010

These slippers were made for walking.....

And that's just what they'll do, one of these days these slippers are gonna walk right on past you.

Our out look on like is so much different, but for now it is time to say good-bye to the hospital and head on home.
I will post again later.
Love Hugs and Blessings
Thank you to everyone again for all their thoughts and prayers.

Saturday, January 23, 2010

I laugh in the face of a Popsicle

There are few days I would actually like to skip over when they pertain to Lily. The day before her second surgery, I would like to skip that day, her second surgery, that would be another not so pleasant day to skip. Today, would be a marvelous day to skip too.

The good from today, Lily's IRN is up to 1.9, .1 away from where they would like her to be. I would think we would go home Monday but I have a feeling that isn't going to happen because she won't take any of her medicine orally except for her Coumadin which is her anticoagulant. So I guess out of all of them, that is the best one for her to keep down.

On top of her good IRN level, we took out her ART line,which was in her foot. Her CVP line also what I refer to as the IJ on my Facebook statuses, is still in the side of her neck. We have to keep that until later tonight. They are trying to put a new IV line in but that has been crazy heck. As to the reason I would like to strike this day out..skip over it. Lily has bad veins, or ones that like to play Marco and never yell polo. After 4 or 5 tries it was called quits, this was after they brought in the vein finder (don't ask me the real name for the thing, we will go with my non-medical term, sounds good) Poor Scott and Josie held her down while Laurel and I tried to calm her by talking to her and bribing her with anything from Popsicles to a new Barbie from Andrea's Closet. Needless to say, nothing worked, she screamed, she poured sweat, and she was overly worked to the point of where she was coughing and gagging. We all said enough was enough, and went to work cleaning her up.

My 23 month old daughter looks like she has either been beaten or tried to shoot up a few times. I know both of those sound horrible, but she has bruises every where. All over her thighs, her wrists, her arms, feet, it is awful. Then on top of all of this, she had an allergic reaction to the tape that was covering the dressings on her chest along with the tape around her IJ. It's awful, you see her scratch it, and as much as you try to stop her you can't help but want to let her itch it because you know if it were you, you would be cursing up and down at the madness of it all. So after a bath, we changed her bedding then got her some benadryl, now she sleeps so precious, so sound, so comfortable. I am at my wits end, I just want to scoop her up and run out of here, want to take her away from all the pokes, from all the pain, just take her home and let her sleep in her own bed. As we all know, that can't happen, this is all for her own good, and no amount of my protection is going to make this magically go away and be fixed. It all takes time, she has to heal, it is a slow process, and as much as it hurts me to watch her go through this, she has to in order to recover to come home. Just a little bit long, that is what I keep telling myself. Just a little bit longer, then we will be in our car, waving good-bye at the hospital and watching it get smaller in the rear-view mirror while heading home. She looks great, just a few tweaks need to occur, then I think her and I are both ready to hit the road.....just a few more days....just a little bit longer....

I think I am with Lily, Mommy needs a nap also, I think my brain is on overload. I will take some pictures today, I have been seriously behind.

Love, Hugs and Blessings

Friday, January 22, 2010

In the shadow of my heart

Ok, after my dose of caffeine, I am ready to sit down and blog about the trouble monster, who is pretending to look like Lily. Today has been joyous fun, and if you didn't catch my sarcasm then you don't know me. If I didn't like my hair so much I might just pull it out. Lily has made me look like a big ole' liar after everything I say. Example:

Does Lily take medicine well?- ME: She does incredible at home, doesn't bat an eyelash and takes it willingly.

Reality here: You bring Lily's meds anywhere near her and one would almost think you were pulling her toenails out. This is before you even make it to the bed to hold her down to try to give her something you know she is going to gag on. Yesterday was gagging, no puking. Today is gag, gag again, gag again and scream at you, then gag and puke. Great mental image right? Great..moving on

Then, lets talk about her shots in the leg, I jest you not, you have to have one person hold her arms and hands, while another holds her her shoulders down, and then someone holding her leg while giving this blasted shot. She hates them and she is that strong, what she doesn't realize, you fight against them, it hurts more, and you are going to have a bigger bruise because of it. Now she in on blood thinners, she bruises like an apple when dropped (Not that Lily is an apple but you get the point). But in this case, a small little poke makes about nickel size bruises. I was told that she can't ice skate, roller skate, roller blade, skate board, no contact sports, if she wants to be on cheer, she can be, but can't be a flyer. Humm...what does this leave? I asked if I could put her in dance and was told that would be safe, but no gymnastics. So I am thinking I need a piano and guitar at home, lots of books and stuff that encourages no playing, just learning. Excuse me Bubble Man, can I borrow your bubble so I can place my daughter into it.

This surgery has changed things drastically for us. There are so many pros and yet so many cons. Pros: May never have to have another surgery again. (BIGGEST pro of all) which in turn, no more surgeries, Mommy doesn't have to stress like a crazy person about them. This ends the pro list, granted it may be small, it is significantly HUGE.

Con list, oh good golly where do i even start? I am trying my darnedest to not even dwell on them for long, but it is a shadow in my heart. I know that no matter how big the con list is, I have to keep my focus on the pros. Once again I am chanting, "no more surgery, no more surgery!" But yet I can't help but throw myself a mini pity party over here. Lily has always been a tomboy in the household. She loves nothing more then being tossed onto the bed with her brothers just to bounce, she loves to climb on things, and she falls, she has fallen off the kitchen chair way to many times because every time I turn around there she is, yet again standing tall giggling trying to get up onto the table. She is a risk taker and a dare devil, and now here I am worried of my mind if she falls and hits her head. She falls and scrapes a knee, before, we would make a big deal over the owwie, give tons of kisses, pick out a band aid, snuggle, and then send her on her way. Now, if she falls, it's, hold pressure, make sure you can get it to stop bleeding under 10 mins. Then if it doesn't head to the ER, if it does then watch and keep an eye on her and the bruising will take place shortly after. I know...these all seem like minor things compared to surgery every 3-5 years, but like I said above, life as I know it has changed. We will cope, we will make the transition into the new normality with as much as ease as we can muster and pull off. I know it could be worse, it always can be worse, there are parents who would take what we are about to go through in a heart beat just if it meant they got their little ones back.

So this is the last time I will complain of it. I have had my pity me session. The only way to go is forward from here. We will deal with the curves as they are thrown at us. We will be thankful for the good, the bad and the ugly like we always have been. I will not be blinded by fear, I will somehow find courage to bring home this fragile little girl. I am not ready right now....LOL...Deja-vu...I was not ready to bring her in, and right now I am not ready to bring her home. As much as I want my family back together, I don't want to take her home until she is of course ready, but hello...mommy needs to gather her wits before the change goes on.

I love my Lily-loo, no matter what we have to do, we would move heaven and earth if needed to do what ever we have to, to take care of her. I would rather deal with tons of meds and strict rules then not have her in my life at all. Good, bad and ugly...thank you for it all.

Love Life, Live Life, be thankful for Life. Question it not, try not to understand why things happen other wise you will waste your time trying to figure it out and not living life to its fullest.

Now, as I look over, Lily is passed out sideways in bed, and as I look at the clock on my computer it is telling me 1:20am...(I started this blog at 12:30pm) I think now it is bed time.

Lily is now on IV Lasix, Motrin and previcd have been stopped. Her blood thinner has to be given by mouth, hopefully we can get it down her without her puking...she is still being given her shots in her legs. Her INR is up to 1.4, we are working towards 2. That is why she needs that med so badly.

I will update with more stories soon...For those of you new to this blogspot, welcome to Lily's actually page. In order to leave comments you must create an account to do so. Thank you for your understandings about the Caring Bridge site. Once again, I thank you all for all of your well wishes and prayers. I read them all and they touched my heart.

To everyone else, thank you also for your prayers and well wishes, your support and faith keeps me strong and in comfort. I couldn't get through this without them.

Sending out my Love, Hugs and Blessings like always.
Sincerely Jenna

Thursday, January 21, 2010

Busy Bee

How do I put into words how relieved I am since surgery. Yet we still have a long road ahead of us, a lot of new learning to do as to medical care, the burden of stress, weighing down my shoulders has been lifted. Many want to know how things are going and I would like to ask your understanding and forgiveness as I have not blogged since the day of surgery. Not that I haven't wanted to, and it hasn't even been because I have been super busy with Lily, it has been more of the problem of, I have been so mentally exhausted that I can't form thought processes and all I have wanted to do is sleep.

As many of you know I have insomnia but at the hospital is one of the few places I am actually tired enough I can sleep. My mind is so mentally and emotionally worn out, that my body physically doesn't have to be tired in order to sleep. So seeing I have caught up on it I figured I should get on our blog and put out an update.

Lily is down to one pump left being on. Today they want her up and out of bed and moving around. She has a bit of fluid in the right side of her chest. They are hoping with moving around the fluid will go away on its own without having to put a tube in to drain it. She is still a bit junkie in her chest but nothing horrible. Her O2 saturation's are still in the low 90's with oxygen help, not to sure I am happy with that, but I am thinking it has to do with the fluid in her chest. If it doesn't come up once the fluid is gone I will inquire more about it then.

All in all, the only things keeping us here is the fluid in the chest and needing to regulate her blood thinner. We need to make sure we find the specific dose we need. From everything I have been told, this new med we will go home on is no joke. It isn't like the beta blocker we have been on, where if we miss giving it at the designated time, you still have an hour cushion. Not with this med, it is not a force to be reckoned with. Basically fatal if not given right or on time...So what did we learn from this little blurb..blood thinner..super important, don't mess with it, killer important, yes pun was intended.

(this was yesterday before they pulled the chest tubes)

Lily is a super star, once again showing why we call her our Princess Warrior. She faces each battle she comes up against head on. She is truly a trooper, through pain and everything else that comes along with after surgery care. She voices her opinions (by screaming of course) and smiles when she is happy with what they are doing. Which is mostly when their backs are turned walking out the door. Lily just likes to be left alone, she wants to recover on her own, without the constant prodding of others, and I truly don't blame her.

Our main goal now, is getting her eating and up and around. She ate a few bites of a Banana and a handful of bites of yogurt. She needs to eat more, but she just doesn't seem interested in any of it. I might have to see if daddy will bring her some of her mini raviolis when he comes to visit. She doesn't want her juice or milk either. Not sure what to do with her, but we will figure it out.

So that is about it, nothing else is new. I just have a cranky 23 month old on hand, but nothing I can't handle. She is a bit fragile at the moment but still has the gumption to let us know when something is wrong. She is a tough/smart cookie.

Love, Hugs and Blessings

Wednesday, January 20, 2010

Pictures from Pre-op to Post-op

Holidng strong

As of 8ish last night, I finally knocked out, until about 4am. Lily woke me up crying, and Larry informed me she really hasn't been to fussy all night long. The times she has stirred he was able to talk her back to sleep and has only had to give her 2 doses of morphine through his shift. She has had a slight fever, so she has wash clothes back on her. She is not liking her nasal cannula, so if she gets her arms lose from her restraints at all, the first thing she reaches for are the prongs. She was ticked off to high heaven when I held her arm down until we could tighten restraints. Big bad mean ole' mommy. She is hating the No-No boards. For those of you who don't know these, think of it as soft cast that wraps around your whole arm so you can't bend them.....yeah, you can see why she is not fond of them. Other then all this, her lungs sound clear, her blood gases are great, so verdict is she is doing wonderful. Nothing to much to update at this time, once we have rounds in the morning I will post again.

I wish I could thank everyone individually for all of your prayers. Every one of them, no matter how big, nor small, counted. Lily is doing so well not only because of her will to fight, but also because of His will to help her fight. We still have a while to go for recovery, but right now we are headed in the right direction and prayer is leading us that way.

Please continue to keep my little miss in your prayers. She truly is a warrior, she fights every battle she comes up against with everything she's got. How can she not make any mommy proud.

Love Hugs and Blessings

Tuesday, January 19, 2010


She woke up when they brought her up, she tried to grab her vent tubes, they got her hands in time and restrained her. Gave her more la-la meds (yeah I know heart moms, those are not proper terms, but right now after going 27 hours without seems like as good of a word as any.)

She has a temp of 101* right now, we have wet wash clothes on her, they also gave her Tylenol. She is still fidgety every after another round of Fentanyl, because she keeps arching her back in pain. We have got a lot of junk from her chest, Kristi and I were quite grossed out at the loogie(yeah yeah yeah, not a medical term) she got out during a suction. It was good to get it out but gross to see.

To all heart moms or anyone else trying to call in to check how she is doing, I have put a stop on all calls to the room. with her being so fidgety any and all noise has seemed to disturb her. I will remove the call block tomorrow, but as of tonight if you need to get me, you can catch me over on Yahoo IM.

The number to the floor for those who want to know is 602-406-5273 Room 20.

We are hoping for a very uneventful night. Her blood gasses look great for now and there seem to be no complaints from the doctors.

I will update later with some pictures.


UPDATE 4~ edited

*****Ok Just kidding, no bleeding, she is closed, she should be up in 20-30 mins...*****

She is off the pump, which I am assuming that means Bypass. We should be getting a call in 30 mins saying if she is coming up stairs or if she is still bleeding a bit. If they say she is coming upstairs that means she should be up here in about 45mins to an hour, and we will see her in about an hour and a half if not sooner.



Still working on the blog..I am slow going, I am still processing everything. Quick cap- Not using Pulmonary valve, putting a prosthetic valve on Aortic side and then being put on bloodthinners for..well a long long time..BUT, if all goes as planned, we will get 14 years till next surgery

Nothing new going on in the OR, so far so good. Just wanted to give you all an idea of what is going on.



Lily went on Bypass at 9:43, so far everything is running smoothly...working on a blog to explain things.



Lily was taken back at 7:50 ish, got all her lines started, the surgery started at 8:40. I will update with a real blog after I eat. I am starving!

Big changes, good and bad news...Promise I will update within the hour!


Unyielding Faith

I lay in bed as I write this, sleep is evading me once again. Yet I knew sleep would not be my friend on this night. As it goes the night before any surgery, I lay in bed awake as the house sleeps peaceful around me and I play back the last couple of weeks. I remember them with beautiful clarity and I wonder if we have done all we should have in the last couple weeks as a family. Did we spend enough time together? Did we say I love you enough? Did we play enough? The last two weeks before surgery, through all the chaotic hecticness, we make sure we live life to the fullest. I know it is not humanly possible to cram everything I want to do into two weeks but we try to do the manageable things.

I have Lily's laugh stored within my heart, her smile in my mind, and her smell stored in my memory. Because for 8 hours tomorrow she will not be with me. I can not rush and get her as if she were at a sitters. For 8 long hours no matter how bad I want to see her, touch her or smell her, there is no possibility of it. So I have got as much of a fix tonight as I could We played with her on the bed after her bath. I drank in her giggles, I cuddled with her and smelled her hair, and watched her smile as her daddy talked with her. I have sat besides her bed, I watched the rise and fall of her chest and heard the ever so soft snore that comes with her deep sleep. I put my hand through the bars far enough to place my finger into her hand, which she held ever so tightly. She sleeps peaceful, not knowing what tomorrow holds.....what today holds....

As it goes with the day of surgery I always feel a profound sense of peace, a sense of comfort and strength. I know what is happening in 7 hours is completely necessary, and without it we would lose her. You have to take risks to make gains. She is in good hands, no, she is in Wonderful hands. Because not only do I have complete faith in Dr.C and the surgical staff, I know the Lord will be guiding their hand also. He will be there with her as she undergoes this surgery, no matter how long it takes, no matter how long it takes to recover. No matter how it ends, in my arms or in his, she will always have His strength, His comfort, and His peace, as will I.
You are never ready for surgery, you are never ready for the stress and anxiety of it, until he makes you ready. I am ready! Ready to make the drive to the hospital, walk the long hallways to the operating room, ready to hand her over.

Fear not, for I am with you;
be not dismayed, for I am your God;
I will strengthen you, I will help you,
I will uphold you with my righteous right hand.
Isaiah 41:10

Thank you all for your prayers, for your love and your unyielding faith!

Love, Hugs and Many Blessings

Saturday, January 16, 2010


As I sit here, I scroll through my MP3 player trying to find a song to fit my mood. Which has been very hard to do lately seeing my moods change quicker then the changing of the wind. But try as I may, my stupid little Sansa Clip remains unyielding to me and my music requirements; all 544 songs that is held on it. I have everything on it from Hillary Duff, to Andrea Bocelli, to Bullet for My Valentine. I am a country lover, a hard rocker, emo, punk rock, metal, rap, hip hop, pop, classical and opera lover. Yet nothing appeals to me, nothing suits my mood, nothing moves me, nothing talks to me. I find no comfort in the one thing I always have. My one few solace's brings me no relief to the wandering and plaguing thoughts that curse my poor little head. I just want to clear my mind and have no way of doing so because when I write I always blog to music. How do I blog when I nothing to help channel my emotions and thought process. Yes, that is how I blog, and without it, I am totally one hundred percent lost. So what am I trying to get at here? Well this blog is going to be raw, with no channel, with no barriers. I will be frank and blunt and you will see my unfiltered side.

I told another lie today. I smiled when people looked at me and asked how I was holding up. I was screaming inside the whole time I politely said, "I am as ready as I ever will be." or "I am fine, we knew this had to happen." but do you want to know what I was truly saying?

NO I am not alright, how do you think I would be alright? My daughter, my 22 month old daughter, is going in for her 4th Open Heart Surgery. It may not be as risky as her second one, but it is a lot worse then her first or third. Am I scared? Yes I am, truly terrified. Sick to my stomach to the point food doesn't taste right or settle right on it. Sleep is comes in fragments and is no better then being awake.

I hate when I go to Walmart and people see me stocking up on stuff like travel containers and disposable baby wash clothes, and they go, "Looks like you are going on a vacation." I laugh ever so slightly and reply something as followed, "I wish it was a vacation, but that is what we are aiming for after this next surgery." in turn, "Oh surgery for yourself?" "No, unfortunately not, it is for my 2 year old daughter. She is going in for a heart surgery." "Oh wow, nothing serious I hope."

Ok lets put this on hold for a moment........

When you think of the heart, tell me do you think it is something of value in your body? Is it something you might need? Do you think surgery on it is nothing serious? I mean I guess it isn't like brain surgery, she can't end up brain dead if something goes wrong, she can just end up dead instead. Yeah, so nothing serious.

The, Everything will turn out for the best, or She will be just fine....I have to say those 2 make me want to scream. At the lack of education and the lack of understanding of it all. I mean I know some people just don't know what to say, but seriously, "She'll be just fine" I had your optimism. Not that I don't think she won't pull out of this surgery, because I have full faith she will, but can you be so sure? You don't even know her or her condition's....
Off track....

"This surgery will be a bit harder but she is a tough one." "Will this be the only one?" "No, she has had 3 others, this is her 4th. She will then undergo surgery every 3-5 years until she is 21, then every 20 years after that." the look of shock on their face is always priceless. I tell them "Congenital Heart Defects effect 1 in every 85 births, and that CHD's are the number 1 childhood killer." I know doing this, even though it sucks a little bit out of me having the whole conversation about Lily's heart, I am spreading awareness. Not sure if you are one of those few who remember random things and share them over meals. But I am, I will over hear things while I am out, and somehow even they seemed useless at the time, they make for interesting conversation later. I wonder how many conversations I have been brought in, as "A Lady" at walmart, or the supermarket, shared interesting facts with me today. I wonder if I have done some of my duty in spreading awareness.

At the end of these sharing sessions I always hear the same thing. "Well I wish you and your family the best." or "Your family and your daughter will be in my prayers." sometimes it is strange knowing so many people I don't know are praying for my daughter. Not strange as in I want it to stop, just strange that so many people know about my little Lilyana.....
My Lee-Lou, my gibber jabber jaws, belly giggling, Bar-EE(Barbie) lover, precious little princess. My little girl who detests the homemade tutu I made for her, but dances around the living room in her diaper. That sings while spinning a circle just to make her self dizzy to fall over and giggle on the floor. My piggy-potamous, the little girl that can finish off a whole can of mini raviolis, 2 oranges, and a cup of grape juice in one sitting. Who knows how to throw a tantrum so well, I wonder if a professional coach got a hold of her and taught her all she knows. My 6lbs 9 oz little bundle of a miracle who came screaming into this world at the ungodly hour of 2:27am. Who now weighs 31lbs and stands at 34inches. She is mine, my pride and joy, just like her brothers. I can not picture my life without her, and no matter how much I try to tell myself not to worry about what could happen I can't help how I feel.

I am terrified that walking out of this door with her she may never come back across it. She may never lay in her crib again. I may never hear her laughter while chasing her down the hall trying to get a diaper on her naked bum as she runs away from her diaper change. I fear not being able to watch her sleep. I fear not being able to look back in the rear view mirror and her not be there. I am afraid of no more pictures. I am just plain afraid.... all the old fears, no matter how much I try to push them from me after every surgery, they still loom. They are always here. How much is to much for her heart? I just want her, I want a normal life with my daughter, and as much as I am ok with her heart and I still can't help but be angry. Not even at anyone, just angry. I just wanted a healthy little girl, one that I could go shopping with, do nails with, and help plan a wedding with. And I can't even look months into the future without getting my hopes up and worry that I am dooming myself to failed dreams and crushed hopes.

To many I seem so strong, I am a pillar of strength. I am one who has it all together, who has a leveled head on her shoulders. Who holds it together during times of stress or pressure. I don't fall apart, I don't break at the seams. I am Jenna, Super Mom, "I wish I was like You Jenna. You're so strong." "I wish I was like you Jenna, I don't know how you stay so calm." What many don't know, I am breaking within, but I don't break on the outside. I hold in place my perfect facade, I let you see what I want you to see, I tell you I am fine because in all actuality, the real explanation would take more time then you really have. I tell you I am fine because I don't want sympathy or pity, it is not I who has to endure the pain of surgery, it is Lily. She is the one who goes through the pain, and one day she will go through the fear. Having to explain to her when she is far to young the meaning of death, and that she faces it daily. Her heart beats strong, but doesn't beat whole or full functioning. I am afraid I am not going to be strong enough for her, that I will let her down in her medical decision makings. I know her, better then I know myself it seems sometimes. It is scary and intimidating to know, I hold her life in my hands. To be on guard constantly, to know that when she says ouch that it may not just be growing pains. If she is short of breath wondering if she has over done herself.

And yet, through all this worry, I am truly blessed that I have this worry. I am blessed to look at my crazy teenage girl-like reflection from all this stress and know even though I look like I just hit puberty again, that this stress will pass. I know that as I worry, others grieve. Stress and Worry is a lot easier to handle then the pain of tragedy and grief. I never forget my daily blessings. I know to count each day anew, to wake up and take a deep clearing breath and say thank you to my heavenly Father for the glorious breath that filled my lungs. And then to breath a sign of relief and feel blessed again, when I walk into the kids room and see all my children made it safely through the nights. Blessings do not go unsighted in this household...
We all just can't help feeling the nerves that run through our body 3 days before surgery. It is all the same, it will always be the same. This will always happen, it will never get easier, and every 3-5 years, you can expect a blog like this one. Raw and unfiltered emotions, the only thing on is my profanity sensor. Because for some reason, during times of high stress for me, I can't help but let swear words go when my children are not around. Even though they say swear words are used by those who are intellectually challenged and can't form the thought process to say what they really feel. To me, sometimes there is nothing better then swearing like a sailor even though it does me no good, makes no sense. I would rather have a punching bag so I can put on my boxing gloves and tear the heck out of the bag....I am an aggressive person...if you haven't picked that up by now.....

As much as I will Tuesday to get her, I beg for the time to slow down and suspend itself from moving forward. These next 3 days, I get to spend time with my family. The 5 of us, Football, Austin's 4th Birthday, more football, pot roast, and packing. Double checking check lists and making sure the house is in order. Because once I leave, I will not be back through these doors until Lily's comes home, God willing.

So, in closure, I ask for your thoughts, your prayers and any words of wisdom you may be able to provide as comfort during this time. As most of you know how surgery procedure goes, I will get my Wi-fi pass when we get to the hospital, I will post a quick blog once she is taken back. We go and have breakfast, then make our way to the 7th floor waiting room. Check in on the floor, find out what room she is going back to and check in with her nurse. And I will update as soon as updates are given to me. So keep a look out on the 19th, (Her 2nd Surgery was on April 19th) the date kind of gives me the hee-bee-gee-bees. When I know, you will know.

Love Hugs and my many Blessings to you and Yours

PS: I found a song finally off the Harry Potter and Half-Blood Prince soundtrack called Dumbledore's Farewell. (dreary yet mood appropriate)

Monday, January 4, 2010

Surgery consult....Check...Anger and a million emotions...double and tripple Check!

A hundred thoughts, a thousand emotions, all jumbled, trying to be released, to be made sense of, but the only one I can grasp right now is anger and frustration. Screaming in my pillow seems like a grand thing to do right now but it does not seem very mature. I say screw the maturity at the moment. There were a handful of things I wanted to blog about tonight besides this appointment, such as crazy drivers, people watchers, the obscenities of music on the radio, motorcyclist's etc. Yet here I am, and the only thing I seem to be able to hone in on is the surgery which needs to happen "soon" but yet is so far away. I guess 2 weeks isn't that far, but it is far enough to make me that much more uncomfortable, far enough to make me see red, far enough to make me a mess.

We sat down and saw Dr.C today, he always makes me so calm when I am around him, which I am beyond thankful for. We went over the procedure, he said that this surgery is of course going to be difficult, but not anything near the risks we took with her second surgery. That surgery was huge, still talked about, who would have thought? He said that coming out of this surgery we run the risk of her rejecting her own heart valve, in which we will have created another heart issue with the replacement of her own valve. But as we all know, you can not look at it that way. It is a very small chance, not unheard of it happening, just very rarely. With Lily, we always prepare ourselves for the worst. He also said, depending on how her heart does after we come off of bypass, we may have to have a pacemaker implanted. We are hoping that won't happen, but not written off. Good news...we may be getting rid of Lily's only medication after this surgery, just depending on the arrhythmia of her Mitral valve. *Lily's gradient is some what reliant on her beta blocker/mitral valve. Quick explanation here, her Mitral valve opens and closes to quickly not allowing her Left Atrium to fill completely before distributing the blood into her Left Ventricle. Thus causing the flow and pressure problems of the Aortic Valve.*

Still with me here through all the medical mumbo jumbo? Good, here we go. Lily's beta blocker slows her heart rate down, allowing the blood to fill the chamber before dropping into the next chamber, then being pushed up through the valve...**Whew** Alright...moving on

After we discussed this, Dr.C also started to ask me how she has been lately, if she has been acting any different. comes my anger and frustration that many of you were asking me about earlier. Well, I told him that she has been fine for the most part, she does seem to get winded these days while playing. He asked me if she has passed out, which that was thankfully a big fat no. Then he asked if she has been having any chest you see where I am going with this? Some of you might not...for those of you who do, bare with me while I recap the others. **A few weeks ago, might not have even been that long ago, but not the point here, Lily was screaming, blood curdling, make your stomach drop and heart stop, scream. We couldn't get her to calm down, but no sooner did it start, she would calm down. When I asked her what was wrong she pointed to her chest and said, "Oww". This is Lily, my 22month old we are talking about here. I didn't say, "Lily does your chest hurt?" I said, "Lily what hurts? Show mama, tell me what hurts." In turn she points to her chest and says "OWW" So I call the office, at night, and I get the return phone call of one of the doctors who knows Lily's case so I was confident he would in turn tell me that this wasn't my surprise, he did not. I was told to give her Tylenol and Motrin and watch her over night, and if she didn't improve to give the office a call in the morning.** Well needless to say, that didn't settle well with me, but I talked with a doctor and he said it was most likely a growing pain and with her heart condition it wouldn't be causing her pain. Even with the nagging at the back of my mind, I agreed with him and stayed home.

So fast forward to today, Dr. C asked me if Lily has been having chest pains (as mentioned above) and I said, as a matter of fact she has been having them. I explained to him what had been happening, and he was not happy with all that I told him. He told me she should have been taken into the ER to have an echo done, and if it was to happen again before surgery to take her in without calling the office....

point of the matter................

Go with your gut instinct...I am kicking myself right now, beyond ticked off at myself right now. My instincts have never been off, when I have felt something is wrong, something has been wrong, why I didn't acknowledge that then, I have no idea. I think part of me was selfish, I didn't want to take her in, and them keep her through Christmas. Horrible to say out loud, but partially the truth. The other part of the truth it, Dr.D was partially right, her heart condition wouldn't be causing the chest pain, but just because he condition wouldn't be, doesn't mean there isn't something else there that would be.

So what did we all learn? You know your child better then anyone else...when you know something is wrong, don't rely on a doctor to tell you over the phone if something is wrong or not. You are the best judge...Now..I am repeating that to myself, while seeing red and spitting nails.

On we go, Lily's surgery can not take place until the 19th, unless a cadaver valve the size we need is found before then. They have smaller valves, but like Dr.C said, it would be pointless to put in a smaller valve (that would fit right now) when we would just out grow it and need another one sooner, rather then later. He said, if we get the larger one that we are wanting, then we can be looking at 4-5 years rather then the 3-5 he originally thought. He said we might be able to time these surgeries with growth spurts, which would be the best of the best. We would have less surgeries and reach our goal of an artificial valve being put in with less scar tissue. There are a lot of pro's to this surgery and the timing. There are still the con's but we have to try to over look them. This is the best surgery for her problem, a time consuming one, but best none the less.

So as of now, January 19th, at 6:30 am, we will be at St.Joe's for check in, surgery will start at 7:30, and we may expect her back up no sooner then 2pm. We go for pre-op testing on the 18th at 10:45am on the 18th, which just happens to be Austin man's birthday, poor guy, his sister surgery is taking precedence over his birthday, we will have to try to find special him time some where in all this madness and chaos. We have done it before, hopefully we can manage it again.

Thank you all for your love and support and prayers through all of this. We have needed it all. Your kind words go a long way when I am upset and down. If anything changes I of course will update, other wise things should be pretty quiet around here until then. Or should I say, as quiet as one can hope, the weeks leading up to surgery.

Love Hugs and Blessings