Thursday, January 29, 2009

Lilys Turning a month

It is funny to think Lily will turn 1 in a month. I ask where has the time gone, but I already know where it has gone. I have over 3000+ pictures showing me exactly where all of it has gone. I feel as if she should be 6 or 7 months not 11 right now. Now I am busy planning her first birthday party. A HUGE Deal for us. I would love for everyone to come. Here in her invite that I will be sending out to those who have given me their addresses. We look forward to seeing all that will be there.
Look for an update on the 4th or the 5th...Lily has a Cardi apt then. Please pray for no additional pressure on the valve and that all looks well...
Love and Blessings

Monday, January 19, 2009

Happy Belated Birthday Austin Boy

A world of wonder, to a child every thing they see is new. To see the look of awe on a child's face is a beauty of its own. I LOVE these pictures, I wish I was a photographer and could take better pictures, but as a mother I do the best I can. I have always wanted to get a picture of my child looking out a window with the reflection of their face showing in the picture...maybe one of these days I will be able to get it.

Sunday was Austins birthday, these pictures are from that wonderful day. My middle son, my baby boy turned 3. Where in the world has the time gone, it is unbelievable to think that 3 years ago I was holding a little baby boy in my arms, thinking about how chaotic it was going to be with 2 kids. Little did I know that 2 years from then my life would be turned upside down with Lily. Even though she has been a handful (to say the least) she has taught us many things.

She taught us to look at life with wonder every day. Just like this picture to the right, wonder and awe. I wish I could hear what she was thinking, hear her innocent thoughts. I wish I could understand her babbles and coo's. I love when she looks at you and within a minute has about 10 different faces because of her thoughts. We call them the many faces of Lily, i will have to put my shutter feature on my camera one of these days and let it go to see how many facial expressions I capture.... it would be interesting.

Lily goes to the Cardi on February 4Th, I am excited because we will get to see all of our favorite nurses but I am dreading it because I don't want to hear the news that the valve pressure is up again. I think it is, because her lips have been turning blue out of nowhere and it is unsettling...we will see. I think she is about 23lbs now but we will see how close I am. She is sure a chunky monkey, but that doesn't mean anything but good things. The doctors want her nice and plump....Lily never ceases to disappoint them!

Austin's face is worth a thousand words. Once again, to be a child again! The excitement, the innocence, it is a blessing. I wish we all could retain that child like personality but we can't. When things like Chris and My life happened, our childness flew out the window and in came these old souls.

Austin reminds me of me, he loves to draw, he loves to be independent, he loves music, to dance, to sing, to laugh. He is just the boy version of me. He has spunk and adventure, he will be a child for as long as possible, unlike me. I will help him retain his innocence, his childhood, he will not grow up as fast as I did, because we wont let him. He may be the middle child, but he will not have middle child syndrome. He will not be left out, he will not feel forgotten, because his mama was a middle child and wont let any of that happen. My little snoodlebug....I love him so much, he is growing up to fast, I am going to miss the days when he wont snuggle with me anymore. I dread the day he wont come up to me out of nowhere and give me a kiss on the cheek just because, and say "Mama, I wuv you so much!" "How much is so much Austin?" "This much mama!"(holding his arms out) "This much Austin?" (Holding my arms out) "Yup. that much mama" Then wrapping him in my arms and saying,"I love you this much Austi boy, I love you this much!" "I wuv you too mama, your silly." then he giggles and runs come they cant stay little forever?

Oh my Lucas boy, 5 years old and growing. He is talking already about when he turns 6. He will be the one who tries to grow up to quickly and I will be running ahead of him trying to hold him back. He is talking about when he goes to school and gets homework. I wish someone would let him in on the secret that school work isn't what its cracked up to be....that he should enjoy sleeping in while he can. But he is my energy driven child, bouncing around the moment he wakes up, to the moment he lays down. He has been like that since he was born, I wish I had that type of energy still.....I wish!!

Monday, January 12, 2009

My Pile of Laundry

I am SOOO behind on house work it is awful...and this is what I found in my laundry pile....I think this is one of the cutest pictures I have of my Lilybug. She had a blast on the pile of laundry, clean I must add, she giggled the whole time she was crawling over it...she would roll off of it and then climb right back on it.
I feel like the worst house wife in all history because my laundry beckons me and all I can do to keep my eyes open is to sit here and type out everything I have to do instead of attending to my duties. But after getting up at 1am and working until 8 this morning, and not returning back to bed until 10pm tonight and having to get up and do it again tomorrow, lessens the guilt just a little. I would rather spend time with my monsters...I mean kids then do house work. When I only have energy for one or the other.
Lily is starting to sound a little better. A little less junk in her trunk...She is still coughing like a mad woman though and she whimpers from time to time. I can only imagine it hurting her to cough seeing she had her surgery a month ago. I can't believe a month ago she was 24 hours post-op. To go from seeing her smiling face almost all day, to seeing nothing but sedation and pain a month ago grounded me again. It reminded me of how blessed I truly am. She looks like a normal healthy child on the outside, except when you see the bright red scar down the center of her chest. The "Zipper" to her heart. 22lbs, 2 1/2 feet tall, she is a "Healthy" child to say the least. In the McLaughin's we don't make them any other way. They are built to take on the world, one challenge at a time...and Lily is showing them all how it is done. A McLaughling by name, but a Brown and Daffron at heart, stubborness to the core, determination to the soul, and strength from the grace of our heavenly creator, that shines through her time and time again.

This is my blessing walking....ok...not quite walking, but close enough. She got this stroller for Christmas from my mother. (Once again, don't mind the mess in the background...I was in the process of taking all the Christmas stuff down, boxes every where) As soon as we put it together, we stood her up with it and she took was truly amazing and a sight to witness. She had never done it before. My mother and I cried. To be able to see my baby girl take those first steps...with assitiance or not, is such an accomplishment for my little girl. A milestone I dared not even dream of reaching because living life day to day. I wanted to drop to my knees and praise our Lord God Almighty for letting me witness this. He has shown me time and time again that miracle can and will happen. That even though Lily hasn't recieved a complete healing, doesn't mean she isn't any less of a miracle. I am blessed like I have always said that I call her mine. That she was sent to me, that she will call me "Mama".
I will never be the same. Lily had changed my life... our lives for the better. Every day is a new day, with the setting of the sun, to the rising of the new one, we change daily, because of her! Because God was willing to send us this angel, his gift to us.

Monday, January 5, 2009

A Tribute Blog to Jersey

Today has been an emotional days for me....the loss of a child, even when it is not mine, hurts my heart and breaks it. I cried for this child that was not even mine. I would like to tell you how my day unfolded and how I am now at peace with all of it. Through anger, sadness, and tears, the Lord has reminded me of HIS will......and he wants me to share it with you all.

I got home around 10:30 this afternoon, it was just another day for me, a long day of kids screaming, my husband going off to work and me running of a lack of sleep. Peace was not something I was going to get today, irratation had already set in. I tried to find inner peace so I decided to take a shower while the boys were on the couch and lily was in hubby was getting ready for work. I felt better once I got out.....I put a smile on my face and reminded yself to be greatful for all that I have. We kissed daddy goodbye and turned to settle back into the movie. I did the normal check of email on ALL of my addresses, both my myspaces, my cafemom site, and then I went and posted a new blog on blogspot. Once that was finished it was 1:00pm. Now it was time to check in on all of my friends and their special little babies. As I was scrolling down the list, I debated who I wanted to read an update about first, it was between Ellery and Jersey....I ALMOST clicked on mouse hovered there...but something told me not to click it quite I didn't. I went over to check Ellery first....and she is doing splendid...had an emergency surgery but recovering well from it. Nothing but great news in the blog after reading the heart wrenching retold story of the Emergency. I was happy with the report and looked forward to reading about Jersey....but as soon as I scrolled down to get to her name, this sudden feeling washed over me. It is really hard to say why or what happend....but as soon as my cursor hoverd over her name, the only thing I thought was,"Jersey passed away today." I hadn't opend the page yet, so I knew nothing that had transpired this early January morning. I didn't now as I looked at the clock at 5:56 this morning grumbling about how wish the day was over alread , that my friend was holding her daughter in her arms for the last time.

Princess, Angel Jersey was called home to our creator, she met her maker before the rest of us have. She is once again whole, while all of our hearts break. Or Lord and Saviour sent Jersey here to teach us, and what that lesson is, depends on who you are. Everyone will walk away from this tragedy learning something completely different. When I spread the news of Jerseys passing, everyone told me they were so sorry and to send Chris and Heidi their condolenseces. So I sat there and began to ponder why people were telling ME they were sorry. It isn't my life that has been changed completely, it isn't I that will wake up every day with a peice of me missing.....and then the anger hit me. How could we be strong enough to wake up with a peice of our lives missing? How are we strong enough to continue on with our lives like we are ok after something like this?

Then I prayed! I have learned when I ask these questions, the Lord has always seemed to want to show me. I don't want to be shown, and I have prayed all day that he doesn't teach me in this way. I KNOW we can get through things such as this, but it once again reminds me how unfair this life is and how blessed we are when it is our time to be called home to be next to our Fathers side. That our time here on earth is just a passing, it is just a fraction of time, he teaches us things here, things that he can't teach us in heavan. Even with this unperfect life that has been created due to one bite from an apple, the Almighty creator took the evil that took place and made the best of it he could. He has always wanted us to learn, which is what we do now.

I am learning, more and more each day. I don't see life through my eyes, I try to see life through HIS eyes, because life changes without warning and you have to learn to adapt to every change. I am changing every day and beautiful Angel Jersey once again changed me. Such a fighter and miracle she was, a legacy she left behind, of strength and beauty.

So, Chris and Heidi, if you one day read this, I want you to know, your daughter left foot prints in my heart. Her 1 month, 1 week and 3 days of being here, gracing us all with her prescense, she taught us more then most of us would ever have learned in our life times. Faith is what we have to have now, that out of this there is good, that there is hope, that there is comfort. We may not find it right now...but one day, it will wash over all of us. Until then, we will all walk the path less travled.

Blessings and Love

Heaven has a new Angel

Friends of ours just lost their precious Princess this morning. Jersey girl as they loved to call her. She was our neighbor at the hospital and in my time of need, Hedi lent me her ear. My heart aches for this family, no one deserves to feel this type of pain. No one should have to go through this loss!
Chris and Hedi, like we have said before, you are in our prayers!
Please go visit Jerseys page, the link is to the right under Angel Jersey. She was a miracle and a blessing that lived on this earth with us. An angel called home to soon!
"Lord please hold Chris, Hedi, Tatum and Tucker, and their WHOLE family close to you in their time of need. In this dark time, when hearts are breaking, confusion and angers rages through. Remind them, that you are there...and you will NEVER leave their side. They will never be whole again, but you can help fill the missing peices with your presences. You are truly a amazing God, and we are blessed to call you our Father!"

Sunday, January 4, 2009

Lily's 3rd OHS Video....Awareness Video

Here is a new video of Lily and her 3rd is an Awareness video...I made it public so you could share it if you would like to. Here is the link to take you to the actual site*once you click on it, you will navigate away from this page* Once on the site you can get the code for it to add to emails or send to others. Please...pass this on, CHD has little to no awareness....this needs to be heard....The voices of all of our Warriors need to be heard!
Make sure to stop the music below before starting the video

Thursday, January 1, 2009

We are at home!

Sorry for worrying you Avery.....I was SOOO tired yesterday, we were at the doctors for 3 hours and all Lily did was scream. She screamed during her X-ray, she screamed though her echo like she was dying. I thought she was going to blow her valve from screaming the way she was. She was coughing so hard and gagging, we all would roll her to her side when she did because we thought she was going to throw up and choke on it. It was ears are still ringing from her screams. She didn't have to have an EKG thankfully and Anastasia was happy about not having to make the princess any more angry. Everyone that saw her said she was beautiful but sounded like crap....which made me laugh....because it is true...she sounds can hear her a mile away. Ok that was a bit of an over exaggeration but I wanted you just to imagine how bad she sounds right now.

Her crib mattress is elevated, we have the humidifier pointing on her, Vick's vapor rub on her chest and feet with socks on....the poor baby....can barely eat her bottle because she is so congested. This is the only time a NG tube would be good....but I am thankful we are past that point.

The X-Ray came back clear, so no pneumonia...Praise the Lord in Heaven above, I prayed all day yesterday and the night princess didn't need to over come that. Now we are waiting on the RSV swab results, which should come in on Monday. I am almost positive that it isn't RSV seeing Austin had it when he was a month old and he had a fever and all that fun jazz that went with it....but we will see, since she is older it could be different.

Now we got some downer news. Lily's valve pressure is up to 40%. Now that is nothing compared to what it was but it was 30% right after surgery. Dr.Rhee said it most likely has to do with her being awake and her heart actually functioning on its own with out being helped with the breathing tube and everything else. I know what he is saying but still, 40% and we are 2 weeks out of surgery. Before surgery we were told it was about 80%, well I found out yesterday when Lily went into surgery and they actually looked at the valve it was at 90%...ugh...close call? Well, Lily went from 60% in the middle of September to 90% in the beginning of December. So granted 40% is nothing....if I do the math correctly and know how Lily grows scar tissue, I see us back in for another surgery in less than a year. I am thinking more along the lines of 8 months but we will see. Dr. Rhee is hoping for more then a year...but he knows why I am thinking along the lines I I have said before...Lily is our ticking time bomb...we go for monthly visits to check our time line. I have to tell is quite an irritating life style to live, because you can not plan to do anything a month ahead. You live one month at a time and prepare yourself for all possibilities the next month.

It could be worse...I know....our life could be a 10 times worse then it is....but for once.....I would like to have something to resembles a normal life....but what am I talking about....I have never had one of those, so I shouldn't expect one right now!

Thank you all for your continuous prayers....Lily shows them all, her fight and determination is given to her through Gods Will and your prayers!