Thursday, April 30, 2009
Thank you so much
Love and Blessings
Wednesday, April 29, 2009
When Aryn flew home, I figured I would never see Bridgette again. But fate would have it "HE" had other plans. I thought of her and Aryn daily, never being far from my thoughts. Every time I picked Lily up, I could only imagine how much she missed him.
Bridgette contacted me through Lily's myspace page. She found me because of one of the support causes I joined, (which happens to be very few). She saw Lily's video and tracked me down. She has told me, she debated on emailing me or not. I am ever so glad she did, because I am glad she is a part of the AHB team. I am happy and honored to call her my partner.
When putting AHB together, the thought that popped into my head, "If I get anyone on this team, I pray it would be Bridgette." The Lord heard my prayers, or he already had this planned, or maybe it was his voice that put the thought into my head, we will never know. So here her and I are, Leaders of a team, wanting nothing more then to put smiles on parents faces. Because we have been there, through the heartache, and the pain of the hospital stays. We both know, it is the small things that put a smile on your face.
So here we are, honoring Aryns memory, one year later, by making baskets for him, and for our Survivor Princess. Showing all, that even though Aryn is with his creator, he still fought, just like Lily continues to do each day.
I am honored to know of Aryn and his story. Please help us to remember him! Keep his family in your prayers, the loss of a loved one is never easy, but the loss of a child is a pain none of us ever want to know.
Please visit Aryns new blog spot. http://rememberingaryn.blogspot.com/
Make video montages at www.OneTrueMedia.com
We love you Aryn, and no one loves you more then your daddy and mommy do.
Hugs, Love and Blessings!
Sunday, April 26, 2009
119 N Power Rd
Wednesday, April 15, 2009
No, I did not get out of bed today in a bad mood. I did not huff and throw the covers off of me and onto Chris, and mumble spitefully at him about not falling asleep until 3:30 this morning. Not me, Nope, I would never do something like that.
I did not roll my eyes at a random stranger today when they said, "Looks like you have your hands full." Nope, I just smiled and nodded my head. I did not think, "yeah ok crazy lady. a 5 year old, a 3 year old, and a 1 year old, screaming is great fun." Nope, that would not be me.
I did not throw a tantrum today when Austin dropped his plate of chicken and ketchup on my floor. I didn't care that I had just cleaned it. I was completely fine with it. I did not sit on the floor and cry, nope, that is not something I would do.
I did not threaten to take all my children's toys away if they didn't listen to me at the doctors office today. What type of mother would do that....Not me.
NOOOO I did not yell at a car in front of me when the light turned green. And I really didn't say, "Green means go buddy, push you foot down on the gas, you know the one of the left....." No I did not feel like an idiot, and no i did not turn several shades of red. No I did not look at the car next to me to make sure they didn't hear me seeing my window was down, no no no, not me!
No I do not have a headache from the day, nope, not even a smidgen of one. Nope, not me!
Ok now that i got that off my chest, I feel TONS better. Moving on shall we?
Lily's apt was a waste of time and more of a hassle then it was worth. $15 dollars and an hour later, we got the, "We will see you 2 weeks after your sleep apnea apt and we will see what all that says."
We are dragging out feet...and I am more then welcoming the fact that we are. I do not want another surgery. The longer we can go without it the better. They are now hoping to drag it until Fall, but we will see....this is Lily after all.
She did not hold still for her pulse ox to read, about 20 mins later we got it at 97, so that is about the norm with her. She did lose weight though. She was at 10.66kg at her last apt, she was at 10.45kg, this time. Not a huge loss but a noticeable one. We think it is because she was sick, and that is what we will attribute it to unless signs point to anything else. Her heart sounds the same, the mummer is still there, the slight swoosh, and the off beat because of her mitral valve being the stinker that it is.
So we have to wait until May 12th, do the sleep clinic stuff, not sure of what the entails, but nothing huge. Well huge to us, but to Lily girl, we all know she will throw a conniption fit. She is a drama queen, not sure where she got that from....not me...nope...not me! Must be her laid back father.
So with that all being said...I want to thank you ALL for your prayers, they helped, immensely...as you can see. We do not have surgery looming in the near future, unless Lily decides otherwise.... I hope she curbs her stubborn streak and decides to play nice this summer. I would love to get a tan this year, I am looking a bit pasty seeing I was in the hospital and the house all summer last year. I should be kicked out of AZ seeing I am Casper. I need to live somewhere, where I fit in and don't look so conspicuous. As of late I have had "Casper the Friendly Ghost" stuck in my head. Does that mean anything???
Much Love and Thanks
Saturday, April 11, 2009
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
Wednesday, April 8, 2009
Lilyana is hard to get a read on some days. I took her to my best friend to have her take a listen to her chest. She works in the peds ER (Mindy's Place) so I trust her when it comes to listening to my Lily girl. She told me she sounds a bit wheezy but not crackly or wet. Her pulse in her extremities were a little rough to find but that is never anything new with her. Profusion is still well, but she was a little concerned when she touched Lily's legs and saw that her finger print remained for longer then she would like. She told me she looked a little ashen but not horrible. She is not gray, she is not blue, she still has a rosie complexion, just not feeling well. Trying to make the right call is always hard. I am sticking with my judgement at the moment, and that would be staying home and watching. My intuition has not steered me wrong yet, so until it does, I will sit here and wait. I may hover over her bed, bite my nails, and sleep lighter then I usually do, but home we stay...until my instincts tell me other wise. I pray the Lord doesn't try to teach me anything right now. Not that I am not up for a new lesson, I always have my ears, eyes, and heart open for such a teaching, but right now, with multiple sick children, lessons aren't always the easiest to take on. Come what may, may the Lord bring the rain, if he shall chose too.
Lucas, oh my poor little man. He woke up this morning.....ok..hold that thought...let me mention he was the last to awake of the children this morning....and he awoke at 6:30.....would you like to guess the time my other two adorable angels awoke???? Lily was the first to grace me with her squeals of delight at the unpleasant hour of 5 am....I looked at the clock like it was a bad dream and nudged Chris asking him to lay her back down. He begrudgingly left the bed to lay her down, (I don't blame him, seeing he didn't climb into bed until 2 or 3....the man has a computer game addiction...then again...it is almost midnight and I am here blogging...on my rigged Laptop**hole different story** while he is playing at the PC), back to the story at hand. No longer did it take him to lay back in bed,then she was up again throwing every item from her crib, babbling and squawking at us. Which I must say continuously got louder until you could ignore her no longer. If the sun was up I would compare her to a rooster but the sun was still pleasantly tucked away, while the moon was still singing "Twinkle Twinkle Little Star" I think God made her so stinkin cute and adorable so you could not have a negative thought cross your mind as you roll yourself out of bed at the wee crack of dawn. I reminded myself that others would give sleep deprivation to have what I have...so, holding my eyelids open with toothpicks, I picked her up out of bed and took her to the living room where her scream reached a few octave pitches higher. She reached for her baby doll, squeezed it, squealed into its face, then proceeded to eat its pigtails. What a weirdo.
Austin joined us about 15 minutes later with a, "Hiya mama." I rolled my eyes and patted the couch where he more then welcomed my blankets and snuggles. No more then five seconds of him joining me, his big blue eyes looked up at me and asked,"Can you turn on Clue clues mama. Please....clues clues mama." For those of you wondering what "Clue Clues" are, that would be Austin's way of saying, "Blues Clues" Let just say, that was NOT the first thing I wanted to hear this morning. So I told him he would need to wait and he could play for a little while. He screamed at me, I then proceeded to tell him that if he didn't want to play, he could lay on the couch on in bed quietly until the morning cartoons were on. He chose laying on the couch quietly, whimpering from time to time, pointing at the TV.
Welcome 6:30.......Que Lucas. "Morning mama, can I have milk please." he asks this as he walks to the kitchen and places him sippy on the counter. Can you say morning ritual??? He came over and joined Austin and I on the couch.....no sooner did he lay down, did he get back up and turn the TV on. Que Austin and Lucas fighting. Lucas's feet were touching Austin's legs on the couch. *Heaven forbid* I filled sippies, separated bodies, and for one morning, wished I still enjoyed coffee. After settling with a soda instead (my form of coffee) I booted up the computer for the day. No sooner did my rear end hit the computer chair....(I promise I am getting to the poor Lucas part here...bare with me!!) did Lucas inform me, "Mama, I'm hot." Looking over he had a blanket on, so I told him to take it off. He did, then he came over and touched my arm and I actually recoiled from his touch. His skin felt like it was on fire, yay...bring on the second sickly I thought.....better to get them all out of the way at one time then have Lily have it for a week, Lucas get it the next week, then Austin getting it 2 weeks after Lily gets rid of hers.....because it is back to square one then....everyone is fair game by then.
Lucas boy's temperature was 100.4, wow....dejavu....so he laid on the couch and watched cartoons. Made him breakfast, didn't touch it, which you know he is sick when he doesn't eat his french toast sticks. I woke Chris up at 8, so I could lay back down, and put Lily down for a nap. When i woke up, Lucas was in bed. I asked if he was made to lay down and Chris laughed and told me Lucas actually informed him that he was going to go take a nap. Tucked himself in and everything, you know my baby is sick when he voluntarily takes his own nap. I gave him Tylenol but it would only drop the temperature to 100 for 4-5 hours then it would get ahead of and hit back at 102. Poor kid slept all day, and is sleeping still. He did wake up to eat, which is a good sign. Has had plenty of fluids, so I know he is fine in that department, he is just resting, which is what his body needs.
So....to end my day...and end this blog...I will say....eny....meeny....minie...moe...catch the next culprit by their toe...I know Austin will go down next...I just don't know how long he will with stand it. At least I am not getting worse....ok well my cough is still there...and my fever comes and goes...but it is what it is. It did not keep me from going to Denny's with the my girlie's last night for my birthday, Thanks Sami and Linds, I needed it. Here are a few pictures for your enjoyment....I do embrace my youthful side from time to time..I may be in my 50-60's mentally....but I do embrace being 23....you will see what I mean, courtesy of Sami's cell phone, my goofy nature was captured!
Tuesday, April 7, 2009
Lily has been nothing but a snuggle bug since she got up, the fever has broke or if it does come back it usually hangs at 99.9, so it isn't as bad as it was last night. I am a walking zombie...peaking through my eyes to make sure it is still day light out. My birthday has not been the greatest....seeing we started off the eve of my birthday with last night...
oh and I forgot to mention, our little punk neighbors, (I am usually don't say things like that about people) BUT...we have been having problems with them, all of the neighbors have...lets just say, the traffic in and out of that apartment is insane, and it doesn't take a rocket scientist to figure out what they are doing over there, epically when you can smell it. Well one of the surrounding neighbors reported them and their little friends, and we ended up on the receiving end of their temper. I don't know which on of them did it, but one of them kicked our back passenger car door. Like, running, then kicked it....full force...paint is missing from it, and we will not be able to roll that back window down until we can fix it. Which will cost us $250 for our deductible....money we don't have right now....it is fantastic...I was so angry last night...angry doesn't sum up how mad I was.
If I didn't have my rational thoughts, I would have went over there and gone, "I want one of all of your shoes." GURRRR....I am still angry about it. We didn't do anything but we are paying for it like we did. Well...lets just say I will not be turning a blind eye to the traffic up and down our stairs anymore or the "Smells" coming from their patio. I am the nicest person....until you do something like that. We did nothing to deserve it.....I have never said anything but "Hi" to them.
GURRRRR the Audacity of some people..... didn't their parents raise them right? Obviously not!!! Stupid teenagers.... I may be young....but I am not dumb....
Love and blessings
Monday, April 6, 2009
Lily was sitting in her highchair having dinner. She has been fine all day aside from a little crankiness. She hasn't wanted to take her naps at all today. Back to dinner (excuse my scattered brain) she was eating and doing fine, she opened her mouth like she wanted more but never leaned forward. I looked at her, and she had this far away look in her eyes, then she turned gray, that is when I noticed she wasn't breathing, I screamed her name and pulled her forward, as soon as I did she threw up everywhere. She did it 3 times and then cried. I was covered in puke as I picked her up and rushed her to the bathroom to clean her off. She seemed like everything was fine, she was splashing in the water. I pulled her out and she started whimpering....leaned forward on my chest and just settled there. She felt warm, took her temp, 100.4. She was still breathing rapidly. So I called the peds office, waiting for a phone call back, 20 mins later, she has a fever of 101.4.....she is tired, but not lethargic, she sounds clear as she is breathing, but they want me to take her in. I think it could just be a bug....but what if I am wrong....I dont want to expose her to more then she needs to be exposed to.
I am just watching....the pediatcis office always jumps when they dont need to do to her being a cardiac baby....but I dont want to bother the Cardiologist either.....
I am just praying....I think I will know if I need to take her.....but for right now....I am just watching.....
I am on my knees praying....please pray with me!
Love and Blessings
Saturday, April 4, 2009
We will be having 2 car washes on May 2ND.One will take place in Phoenix/Scottsdale area, the other will take place in Mesa/Gilbert area. Details to come. To volunteer contact us at
Subject Line, Attn:Sami-Car wash
We had our first meeting today, it was very successful. We discussed much and we are all very excited. There is so much to do but it will be very rewarding to get all this going. To all those who would like to help us in some way, through donations, actual hands on, wanting to help spread the word, please do not hesitate to contact us through our email address which is above, or through our website, www.AngelHeartBaskets.webs.com . I will not only be updating the site with what is going on along with our flyer here in a few days, I will be posting it here also.
I want to thank those who have sent us things already, every little bit helps. Please remember when donating all items need to be BRAND NEW, remember these are going to an ICU Unit to babies who are going to be in a position that their immune systems can not be compromised.
On the home front, Lily is better along with everyone else...BUT ME...I swear, I didn't get it while they all had it...but 2 weeks later...yeah...that's right....I have it now...GO ME!!
Lily is eating baby food spectacularly well. I can't believe the appetite she has! She loves all food that we have given her. She is also walking EVERY WHERE, she is a doll. I do not have any new pictures right now, my camera batteries are dead and I have yet to go out and buy more.
Other then that, we have another Cardiologist apt on the 15Th of this month, we will be probably setting the date for her next surgery that day. So hopefully we can get things up and going with the AHB team and projects before I find myself back in the hospital rooms again 24/7.
Sending out Heart Hugs and Blessings to you all