Sunday, May 31, 2009

Lily's Jaxon Blankie

Lily with her Jaxon Blankie
If you look on our friends list you will see Jaxon's name. He is a special heart but he has so much more then that. To tell his story here would take a long while so I will just link you to his page so you can read first hand about his courageous fighting and about what a miracle he truly is.
His mommy, Lacey, sent us a Jaxon blankie, and Lily LOVES it. It is all of our favorite colors. She makes these blankets and sends them to sick children. To do this with all she has on her plate is such a beautiful thing. As a parent of a heart baby, it is small things like this that make you smile. Because now lily has her own special blanket, and a special doll and stuffed animal. All things I can hold close to myself during her next surgery. I love her smell, I can't get enough of it. I can't wait for her to break the blanket in so I can smell her on it. She is such a precious girl and I don't ever want to forget any of her. It is the small things in life that sometimes mean the most. Thank you Lacey for giving us a smile and brightening Lily's day as she hugged her new blanket tight and played peek-a-boo with it.
I am glad I found Jaxon's blogspot, because goodness knows out of our 700+ friends on myspace, it is hard to keep up with everyone and everything.
If you are ever on myspace here is Jaxon's Fight. He is a true fighter, and we are blessed to call them our friends!

Love hugs and Blessings

Tuesday, May 26, 2009

Kartagner Syndrome

Lily has always been known to throw curve balls but she threw not only one today but multiples. We went to see the Pulmonary Specialist due to her bouts of sleep apnea. We got there and went through the norm of height, weight, bp, o2 Sat's, then off to the room we go. The only difference was I didn't see a single face in the office that I recognized or that knew Lily. Which is different seeing our PCP knows us so well along with the staff there, and we all know the H&LI know Lily. Lily took the appointment in stride, she didn't want to give her BP or O2 Sat's like normal, cried when they listened to her chest, refused to open her mouth for the tongue depressor...for those of you who have followed Lily for some time now, you know this is nothing of surprise, just something to chuckle about as she breaks in a new doctor to her stubbornness.

At the clinic today I sat and talked with the doctor as Lee-lee's walked around the room doing her usual "what's this" routine. Thankfully she hasn't masted saying it, she is still in the process of opening everything and holding it up at me, screaming at me if she wants my attention. The greatest part about it is, once you tell her what it is, you say, "Ok Lily put it back." and she will. She is a great listener.

Ok..getting off topic, Focus Jenna, Focus like a laser beam.

I answered sleep questions, about how much she sleeps, how many naps, along with how long have I noticed this breathing problem. Lily sleeps 18 hours a day, that is with a 12 hour stretch at night, and two 3 hour naps during the afternoon. The amount of time she sleeps has always disturbed me but has never seemed to bug anyone else. Over paranoid most call me, but I have always had this nagging feeling she is sleeping to much. The pulmonary specialist said now that Lily is 15 months, she is bordering into too much sleep. But for right now that isn't going to be our main concern until we start with some other things.

1st: We will be doing a sleep study. She will go in over night, get all the do-dads and doma-hickies all hooked up and call it a night party at the sleep clinic..we will get the results shortly after that.

2nd: She is still aspirating, Surprise surprise, I hope you all caught my sarcasm there. I have been saying for months now that she is still doing this. When ever I brought it up I was told a GI specialist was needed and they would refer us to one. Never got the name and number, etc, one thing would lead to another, such as another cold and we would have to put it on the back burner and ride the cold out. By the time she would get better, we would bring it up again, only for her to be sick yet again. Round and round we went...

Speaking of sick...lets talk about this sickening news that weighs heavy on me tonight

Lily will have to undergo some testing in the future, not near future, but sometime within the year because of her colds. With Lily being Dextrocardia, it has always been a bit of a problem but has never caused to much of a ruckus since now, or at least I thought it hadn't. But speaking with the Pulmonary specialist she told me if Lily would have just had Dextrocardia we would have been fine, but with the Situs Inverses she falls under the category of getting sick more often with upper respiratory problems. She said it is very rare disorder called Kartagner Syndrome only 1 out of every 32,000 live births does it occur, and usually only in patients who have Situs Inverses. What does all this mean you may ask. Well, we will have to see what comes of all of this, but what has me down about all of it, is that is causes infertility, the one thing that has had me scared since I was first told about Lily's heart. Besides losing her, this has always been my other fear is that my little girl will never be able to have children, let alone because of her heart, but now if this is confirmed then this will cause more problems. BUT we will not worry about it now, we will cross that bridge when we get there. I will think about it for today, and worry about it when the time comes. No point in worrying over something that hasn't come to pass and may never come to pass.

Back to the Kartagner Syndrome, in order to test for it, she will have to be sedated in order to pull tissue samples, which will then be biopsied. What gets me is that it is an inherited disorder, which means someone in the family has to have it. Which raises the question of who has had it or who has it?

For some strange reason I think it is me. I have always have had chronic sinus infections, headaches, upper respiratory infections, ear infections (never had tubes in the ears) etc. We have always put it down to bad allergies but wouldn't shock me if I was to find out other wise. Defiantly something for me to look into, would explain why I was always sick in my childhood and why I am continuously sick now.

Off topic once again...kind of...

Lily was put back on Prevacid, she has been throwing up a lot lately, and seeing she is aspirating, it is not a good combination. So, back to 2 meds a day instead of the one that we got use to. She might have to have an upper GI done while getting her swallow study, the doctor hasn't fully decided on that yet.

So we have a full schedule as of now. Cardiac, Swallow study, Sleep Study, a possible Upper GI, and sometime in the future more research about Kartagner Syndrome...Like I have always said, when you think you have figured Lily out, and are in a routine, she ALWAYS, throws a curve ball. You are not always on your feet, but in the crouching position ready for it all...I just wasn't ready this time around.

That wraps up this blog, I am going to go take something for this migraine yet again, and head to Starbucks to unwind and process some more!

Thank you all for your continuous prays and constant support.

Love Hugs and Blessings

Monday, May 25, 2009

Kissy Kissy

Ok so I know I said I would not talk anymore about Lily and her goofiness, but Lordy bee, if this is not one of the goofiest faces, I don't know what would be. Beautiful, goofy, cuteness! I want to gobble her up whole!

Tuesday, May 19, 2009

Goofy Glory

So Chris told me the other day that he felt Lily was going through an awkward cuteness phase. Not that he doesn't think his little girl is cute, because he does, but he says her cuteness is only that a parent could love. I was shocked, he has never said that about any of the kids before. He told me not to take offense to it, but how could I daughter is precious, adorable, beautiful. Then i took pictures of her in all of her glory...and when I loaded them, i couldn't help but think the same thing. She is cute, precious, adorable, beautiful...but I think in a way only a parent thinks so. Her hair is so wild and out of control, she has a goofy cheeser smile, the goober teeth going on, she just looks goofy. I love her just as I love to breath, but it doesn't stop me from thinking that she is my goofy lookin girl. My girl that has stolen my heart and so many others. She is my ray of goofy sunshine and always brings a smile to my face. I just now don't expect for people to stop me to tell me how cute she is...I will always think my kids are the most beautiful, as do all parents because we are suppose to...and that is ok, we have to brag about something, but for once I had to admit it out loud that my child looked less then perfectly cute. As for the next time I post pictures, I will once again be going on about how beautiful, cute, precious and adorable she is, not mentioning again her crazy goofiness...
So where were we?? How cute she is.
Watch the video, if you can get past her goofy glory, you will get an awwww out of it!

Make sure to pause the music below so you can hear her!

Wednesday, May 13, 2009

Sweet Simpler Times

Life at home has been great, Lily is starting to talk. Her newest things are "Here you go" or "Go Nigh nigh" "Buh Bye" "Dada" "Mama" "Ee"(for eat) "Baba"(bottle) and "Guh" for Go

She is a splendid baby, only cranky when she is tired but yet still pleasant about it. She will come up and wave bye bye while clinging to your leg. You ask her"Lily go nigh night?" and she will squeal. She claps during prayers and waves when you tuck her in. She is the easiest out of all my children. She may have come out with a broken heart, but it is still full of love, hope and fight. She loves nothing more then to play with her daddy in the morning, and sing songs to us from her bed. Her sweet voice I cherish and want to get a video of her to share with you all.

Now on the medical standpoint. She is holding strong, we are waiting to do her sleep apnea clinic, which was suppose to be on the 12th but Chris has to work so we needed to reschedule. May 26th in the sleep clinic, and June 3rd it is her echo and visit with Dr.Rhee. We are dragging out feet, as long as we can get away with it, without doing damage of any sort. Part of me says, lets just get it over and done with, while the other part of me knows how risky another operation is. No matter how risky it is though, it will have to be done. As every heart parent knows, you Never know what will happen during that surgery, you never know if you leave your house and head to the hospital, if you will ever bring your darling baby home again. So I do not welcome the next surgery with open arms but I acknowledged the truth of it all. As long as all goes correctly with the next one, we will get at least 3 years...or that it what I have been told...

But what am I talking about? One day at a time. I will wake with Lily if or heavenly father allows, and I will enjoy another hot, yet beautiful day with my daughter and family. We will play out at the pool and enjoy each others company, reminding ourselves that each day is a blessing not a given. I think many tend to forget that we are blessed with each breath we take.

My beautiful girl, we were out at Olive Garden for Mothers Day. She loves the bread sticks. But please, someone tell me, am I imagining it, or is around her lips dusky in color?

My Beautiful boys Above is Lucas, the reason I became a mother. Below are My two protectors, not only of me, but of their baby sissy. Lucas loves to tell everyone about Lilys special heart. The Lord truly blessed me with wonderful children, even when they are loud and crazy, doing nothing but fighting. My world revolves around them

Thank you all that continue to swing by our page to check in on Lily. Sorry for the little to no updates. No news is always good news.
Once again Thank you For your continuous prayers.
Love Hugs and Blessing

Thursday, May 7, 2009

Lily's 1st Trip to the Pool

It is not offically summer in AZ but when you hit 100 in May, we pretty much classifiy that it is. The pool water is still a bit chilly but it warms up pretty quickly VS when it is 115 outside, the pool water is more like bath temp and it is not refreshing. I do not understand how people welcome this type of heat with open arms. Coming from CA the upper 90's were enough for me, now here I am excepting 100 as a low temp for the start of the summer. How my life has changed in 10 years! If you would have told me at 13, that I would be married, with 3 kids I would have just laughed at you and said you were crazy. Not like I had my life mapped out, but I knew I wanted to go to college, live in the dorms, get married around 25, and not have anymore kids after 28. But here I am, 23, with 3 kids, and not regular kids either, and I would not change any of it for the world. God knew what I could handle when he gave it to me. So if he trusts me with these innocent lives, I know I trust myself and I know I can handle it all.
Now that I just reflected (not what I meant to do on this post) Lets post some pics of my water angel....she had a BLAST...I will have to get her a different bathing suit though. My sister in law got her this bathing suit, it's cute, but not scar friendly. My mom wants to get her a new bathing suit, so I am humoring her and letting her and my nanny go on a shopping hunt this weekend.

Tuesday, May 5, 2009

Nothing but a Picture Post

Ok ok....a few words but not much. I did have a few more pictures that wouldnt load, I will have to save them for another post. Can't wear you out on the cuteness all at once. We went to IHOP and lets just say, Lily was a ham.

I want to gobble those cheeks up

Lily and daddy. She sucks up all of his attention when she can
get away with it, which is all the time, mind you.
Oh Sweet Austi boy, we were getting ready to leave and he told us, Tip Top (one of Lily's many lovies) needed to be safe. What a smart little boy he is.

Lily has many faces, and this is one of her latest. We all
Adore it. It is so serious and cute. She only does this face when it is windy, or if her nose is running, ok, or if the sun is in her face. It is just to stinkin cute!

Lily sitting in her pink girly throne. The boys try to pester her, but she is not a force to be reconded with.

These next pictures were from us playing outside today. It was hot, as you can see, but we all had fun.
Lucas wanted a picture with me, needless to say, he didn't realize i was taking the picture.
Like I said, Lucas LOVES pictures and is ready for them any
time any where!

caught him red handed!
Lily girl and her ball, she loves to drop it and watch it bounce, BUT, do not try to chase after it or pick it up, or she will tell you what she really thinks....unless... it has bounced into the rocks out of her reach, then DO...get it for her, and quickly I might add!
I hope you all enjoyed the pictures. Nothing new here on the homefront to report. Sleep apnea apt coming on the 12th, oh and Austin has his dentist apt on the 7th....other then that...nothing much!
Love, Hugs, and Blessings.