Sunday, May 17, 2009

WOW!!!

So I reliazed as I was posting my first blog entry that this past April was five years since Sydney had her heart surgery! There are so many things that I complain and whine about, but when I remember that she is alive, well and healthy that brings me back to how my life is blessed.

So for those of you who don't know the story here it is:

In late March 2004 I had to switch insurance companies and Syd's pediatrician at the time did not take our insurance. So we had to find a new pediatrician. That search led ud to Dr. Neil Russakoff. (let me background by saying that Sydney was born and diagnosed with a mitral valve murmer, but that was the extent of the diagnosis). On Syd's first visit Dr. Russakoff had asked me if Syd had ever had an echicariogram (ultrasound of the heart). She hadn't, and he suggested that she have one because he explained that her murmer sounded very harsh (loud and abnormal).

That led us to University Physician's Pediatric Cardiology department where we saw Dr. Daniella Lax (amaaaazing doctor). She tool her history and had an echo performed. Sydney was a champ through all the testing. While they were getting Sydney cleaned up (cold, icky, sticky gel is used for an echo) Dr. Lax took me back to her office. It was there that she told me that Syd had a hole in her heart called an atrial septal defect - a defect she was born with (congenital) and she was going to need surgery soon so correct it. I'm not sure how I held it in, but all I wanted to do was cry. My sweet little girl had to have her chest opened up and her heart worked on? How could this be?

So I got Sydney from the echo tech, got all the information from the front about what the next step was and left. God must have been holding me close on the car ride back to Sydney's preschool because I never cracked. It was not until I got into my truck in the parking lot that I lost it, I mean hysterically lost it. I called my Mom and Dad and told them, all the while hyperventilating and sobbing. I just didn't think it could be real.

Over the next few weeks all of the appointments were made and the date of the surgery set: April 13th. Every moment I was around Syd I was I rock - I had to be. But every night she was asleep I would cry until the tears wouldn't come. I was so scared. I knew that my amazing God would take care of her, but my human instinct still left me feeling helpless. While she was in that OR I couldn't do anything but trust God.

We had met Dr. Copeland (who is the foremost CardioThoracic Surgeon in the COUNTRY, I didn't know this until afterwards) for a pre-surgical appointment. My mother came along for support. On that day we met with a child life specialist to help explain to Syd what would happen and to take a tour of the PICU and peds unit. This was great because we got to meet some of the nursing staff who would be caring for Sydney. They were/are wonderful (I work at UMC now).

So it's April 13th, 7:00 and we leave the apartment en route to the hospital. We had to be there at 7:30 and surgeruy was at 1:00, but they would prep her at 11:30. My parents were there with me. The staff called us to the pre-surgery area where Syd would get her gown on and she would see the anesthesiologist. He gave her the "kiddie cocktail" (sedation) and took her back.

The hallway from the pre-surg area was horrible. It was long, cold and silent. I cried the entire way up to the PICU waiting room where my parents were. They cried right along with me. That was one of the two times I have ever seen my father cry.

Time passed slowly. I just sat at stared at spots on the wall and the people around me. Finally what seemed like 20 hours later (in reality it was 5) they brought her out. She was not intubated, which I was afraid she was going to be, but she was sedated, confused and in pain. She kept telling me "Mom, I can't wake up". I didn't cry so I could be strong for her. The PICU nurses said we had to wait until they got her settled to come in. However, 2 minutes later a nurse came and got me saying "she is crying for her Mom, you can come back". When I got back they had given her Morpine and she was calm. Sydney had every line, tube, and wire imagineable coming out of her. I didn't know what to do but sit by her bed and watch her. That is pretty much what I did all night long. I don't even remember sleeping.

As the days went on her pain eased, and she was able to have her urinary catheter removed to get up and go to the bathroom. The first couple days the wouldn't let her eat because she threw up a lot from the anesthesia, which very hard for her to understand. But as the days passed the pacer wired came out, the IV in her foor came out, the arterial line came out and the chest tubes came out. By the last day of her stay she only had her Central line in her neck for mantinence fluids. She was a trooper my little kid :)

We had many,many,many loving and wonderful friends come and see her. I don't think I would have coped without their love and support. My mother came everyday around noon and stayed for hours just hanging out with Sydney so I could grab a snack or go to the family room and wash one of the few pairs of clothes I brought and shower. My father, brother and mom would come every evening before visiting hours ended to bring me dinner. It was a blessing to have such a support system. The nursing staff was great too offering to bring me a drink or sit in the room with her so I could use the bathroom.

On the day of Sydney's discharge I was sooooo excited!!! And strangely a bit sad. Don't get me wrong, I was so glad to be taking Sydney home, but I was actually going to miss the Nurses and staff of the PICU. They had become our family while we were there. They cried and laughed with me and were just as excited when Syndey went home!
When we came back to the hospital for Sydney's post surgery check-up we went to visit the staff in the PICU. They were so thrilled to see her. One of the nurses, my favorite Diane even stopped talking to an administrator to come and give Sydney a hug!! That is someone dedicated to the patients!!!!!

So it is 2009, 5 years later and you would have never known Syd had surgery unless you looked at the scar across her chest and the chest tube scars below. We always joke that it looks like an upside-down happy face :). She is healthy, she is happy, and she is truly a miracle in my life. God granted me with such a wonderful gift of being a parent and even though he put this bump on our road, it has made me as well as Sydney stronger for it.

Our God is an Awesome God!!

What is with random dancing?!?

Ok....can we talk about random, middle of nowhere dancing in movies? Does anyone do that in real life? Just encounter a song playing in a restaurant or street and just start dancing when no one is around?

I bring this up because I have been really sick this last week and have (for some reason) been watching A LOT of movies. All of them seemed to have the "random dancing" as I like to call it in them. I don't know if I'm drawn to those types of movies or what. You can ask my friend Lynsey, I get really annoyed when I see it. We haven't figured out if it is because it really does annoy me or if I secretly want someone to do that with me :).

So the first three movies I watched just happened to be from Nicholas Sparks Books. I guess this random dancing has to be a thing of his. Then there is my new favorite movie Twilight. One of these days someone will take me in their arms and dance with me when there is no music in the middle of nowhere. Sigh.......

This reminds me of a song though...

We will dance on the streets
that are Golden
The glorious bride and the
great Son of Man
Let every tongue and tribe and
nation
Rejoice in the song of the
Lamb

I really shouldn't worry about having someone chose me to dance. I can dance and worship my amazing God in Heaven!!!

Saturday, May 16, 2009

stained glass masquerade

So I was listening to Casting Crowns today, one of my favorite bands. Their song "Stained Glass Masquerade" came on and it really pulled a heartstring for me. I have been trying so hard lately to let go of my pride and give all my stress to God that it has made me very sad. I don't know why it has been so hard. This struggle brought me to Isaiah 40:28

Do you not know? Have you not heard? The Lord is the everlasting God, the creator of the ends of the earth. He will not grow weak or weary, and his understanding no one can fathom.

How small am I to worry about the trivial problems of the world when I have and everlasting Savior to guide me? How prideful can I be? How can I think that I can run my life?

My amazing friend Jessica Coffin told me one morning in church when I was not feeling entirely "worshipy" (I know, not a word), that if today I don't feel like smiling and being happy, don't. Don't be fake when you are feeling down. God will lift you up!!

So that brings me back to the chorus of "Stained Glass Masquerade"

Are we happy plastic people
Under shiny plastic steeples
With walls around our
weakness
And smiles around our pain
But if the invitations open
To every heart that has been
broken
Maybe then we'll close the
curtain
On our stained glass
masquerade

Wow.........totally says it all right? I used to think this was a silly song, but when I was in service that day trying really hard to not look unhappy and trying to put a smile on so no one would see my hurt, this is exactly how I felt.

God doesn't expect me to be happy all the time. But I should delight in the fact that I can come to HIM with my sorrows and pain. That I truly don't have to worry about how people see my pain. The fact that I trust HIM and LOVE HIM will make my light shine!!!!!

So sick of being sick :(

I am totally new to blogging. Hope you enjoy my first post!!!

Well as most of you know I have been super sick for the last week. First I had strep throat and now I have a nasty upper respiratory infection. It's borderline annoying. Despite my best efforts to lead a healthy lifestyle, my health still seems to fall short. I always seem to have some sort of bug. I also burned my arm on my stove on Monday and that is really painful and icky (yes I said icky). I know with His healing hand I will get throught this though. God is the great healer. I just need to give my frustration to him.

On a lighter note, Sydney has completed her first year in Truth in Training of our local Awana chapter. I am so proud of her accomplishment. She is such an amazing kid. During the closing ceremonies there were three high school students that received the Citation award, wgich is the highest achievment in Awana. Sydney said "I am going to get that when I am a senior". I love that she longs to grasp something that will take a lot of work and a lot of faith in our Lord and Savior. She is going to do great!!!

Well, summer time is coming upon us. Unfortunately I have to work, but Syd will be out of school next week!! Her school has a water day at the end of every school year which is always super fun!! I get to volunteer this year which I am very excited about!!!

Sydney and I have a lot of exciting plans for the summer. the second week is Vacation Bible School. For those of you who have never participated in a VBS, you're missin' out. After that our church is have a new summer Children's ministry program called Triple C Camp. It will be different themed day camps for grouped ages. Also every Wednesday there will be a summertime activity for the kiddos at the church. So lots and lots of fun!!!

After that we will be jetting of to Northern California to see our awesome friends Matt and Lynsey!!! I'm most exited about this. Matt and Lynsey lived in Tucson for a short amount of time after thet got married and Lyns and I became super close friends very quick. It was a very tear soaked moment when they left for their little city of Yuba (Sydney balled too, she adored Matt). But we get to see them soon!!!! See Lyns and I are HUGE Harry Potter fans and we are planning little visitations around certain movies, HP being one of them. We are going to stay up there for about five days to see the sights of Northern Cali. I can't wait!!! I miss Lyns so much!!!

I also just joined a local group in town called Mended Little Hearts of Tucson. As most of you know Sydney was diagnosed with an atrial septal defect, a congenital hole in her heart when she was four years old. She had to have major open heart surgery on April 13th 2004 to correct this defect. It was a very difficult time for my family. We however had wonderful nurses, PCTs and doctors to get us through it. Sydney came out of the surgery healthy and without and risidual symptoms. What we didn't have, was someone who had been throught this ordeal. Mended Little Hearts is a support group that does fundraisers, meetings and visitations to families in the hospitals. I am SO excited to start doing this and so is Sydney. I already am involved in the Congenital Heart Information Network and the local chapter of the American Heart Association, but MLH is very close to my heart, and Sydneys ;).