CHD AWARENESS WEEK 7th-14th

This is my daughter
And her story

Lily was born on Leap day of all days, coming at 2:27am, screaming in all her glory. But her birth was not a typical birth. Instead it just being a nurse, a doctor, and your family and SO in the room, my room was filled with so many more. I had a room full of a NICU Team, a Pedatric Cardiologist Team, My doctor, 3 nurses for me, my husband, and my father.

We knew about Lilys special heart before she was born, we were one of the LUCKY ones. I had time to prepare myself for not being able to bring my child home. I had time to prepare myself for the surgeries that were to come, the life that we were about to live.

All I wanted was a little girl, as healthy as my two boys, but that was not what the Lord had in store for me. I know not why he chose me to be Lilys mother, but I do not argue with him

He blessed me with the sweetest and STRONGEST child I have ever met.
She has faught a tough battle. Undergoing her first open heart surgery at 5 days old, listening to her scream as she was wheeled away from me into the O.R. Is not something ANY parent should ever have to go through. I could not comfort her, my arms ached along with my heart. My husband was not at the hospital when she was taken into the OR, still getting baby sitters in line for the boys. I leaned onto the nurses, which have become family.

She came back hours later not looking like my baby, she had tubes and wires EVERYWHERE. Her chest was open, it looked like a battle had taken place, and it did. The battle for her life...a battle she takes on each day. Medicaly, my daughter SHOULDN'T be here. Born with 6 heart defects and then devoloping a 7th. She is a miracle, even the doctors consider her one.

We spent a month in the hospital to the day. We went home, it was terrifying. Tubes, monitors, medicen. It was overwhelming, I just wanted to have my baby home and be done. But that will NEVER be the case. She will never be normal, she will never have a normal life.

A week and a half after being home, I knew something wasn't right. So I called the doctor, time and time again, telling them I just KNEW there was something wrong. So they finally brought us in. The did an echo, looked at her heart, and the tech looked at me and looked at Lily and said," I will be right back, I need to page the doctor, this isn't good."

My heart dropped. We just got home....how could this be?

The cardiologist came in and looked over everything and then looked at me. "Jenna we need to run further testing, there is a narrowing and it is obstructing the flow of blood in the heart. Can you come in on Thrusday? It will be a hospital proceedure. If Thrusday doesn't work then we ca wait until Monday."

I jumped and said."Thrusday will be fine, This needs to be done as soon as possible."
I knew something wasn't right, I knew it was more serious then they thought it was. Call it mothers intuition or what, but I knew we needed to look at this and pronto fast.

I was shaking the whole drive home, I called my husband and told him to call work and get the day off. He did'nt argue and just did as I asked for once.
Everyone kept trying to reasure me, that it was probably nothing and she would be just fine.

Oh how I wish it would have been nothing. Thursday dawned a bright and peacful morning, Lily was sleeping, like she had been almost all week. We didn't know it then but it was because her heart was so weak from fighting so hard.

She didnt care that she went all night with no food, didn't stir when they started her IV in the Pre-op room. It was just her and I, Daddy was at home once again with the boys.
They took her back and she opend her eyes one last time to look at me. I will never forget that look for as long as I live. She looked directly at me after I kissed her on her head and said," Mommy loves you Lily, the doctors are going to make it all better, just fight honey."

She opened her eyes and looked at me, it was as if she was saying,"Mommy I am fighting, I will always fight." Then she closed them as quickly as she opened them. A single tear escaped and I brushed it away, promising myself I would be strong because she was.

I sat in the waiting room for an hour...one hour was all it took to take my world and turn it upside down. One hour was all it took to make me sick to my stomach. Both the doctor and surgeon come out of the OR and walk into the room. Borh of their faces schooled to not show much. They were whispering between them, then looked up and looked at me. My stomach dropped, I knew it wasn't good. They sat down, and the waiting room got quite...(I hate nosey people) Our main cardiologist, whom I have grown to love dearly, picked my hands up and held them. "Jenna, it is worse then we thought it was, we are admitting her and doing surgery tomorrow. She is in heart failure, she is stabalized but this has to be done soon."

The whole room had taken an intake of breath, breaking the silence. I just nodded my head, still not crying, and looked around the room, Everyone else was. I heard whispers of, "Just a little baby" or "Might die without surgery." "The mother is taking the news quite well."

What was I suppose to do? Scream and Yell? No that is not like me. I looked at the doctors and asked them when I could see her. They took me back at once, I walked into post-op and heard all the monitors then, and that was when it hit. We were back, she was sick, and it wasn't looking good.

They took her back upstairs and we got settled into the same room we had before. Which we now consider our good luck room.

She was on NPO, which means no food or drink because surgery looms in the future. I spent the night alone because we had no one to watch the boys until the next day.She was so cranky that night, sweaty, and cranky. She never opend her eyes that night, I only got to see them once more before the next surgery.

Friday dawned and I was holding her. She was content but pale, she was working hard to breath and her oxygen saturations kept dropping. She hit the 68-70 and her nurse looked at me and looked at her. That was when we noticed the tugging at her ribs when she was breathing. She was gasping for air, Sally paged the doctor, who ran into her room. Dr.Choi, our best friend...looked at her and then looked at me, his eyes were moist and he kneeled down to my levle. "Jenna, we need to inhabated now or we may lose our chance, she can't breath on her own anymore. Her heart is to weak."

I just nodded...and then chaos erupted around me. Medical carts were wheeled in, along wth all the equiptment to help her breath. There was so many people in and out of the room. It was like how you see in the movies, when a person stands in one place and things are in slow motion but yet going by in a blur. The next thing I know Dr.Choi is standing by me again,"Jenna it's time."

That was when she opened her eyes again, to look at me or the angels dancing over my shoulder I do not know. She was tired, you could see it, she had been fighting so hard. I bent down and kissed her head saying, "Its ok Lily, the doctors are going to help you so your heart doesn't hurt so much."

I shook as I handed her over, handed my life over. I stood by her as she cried the tinest cry in protest. That was when I lost it, the flood gates of heaven opened up from behind my eyes, and I cried, sobbed. I was shaking, the brought in a chair and had me sit down. I sat in the chair rocking, rocking and crying. Anyone who passed by the room couldn't help but look sad. Even though they didn't know what was going on, they still knew it was serious. Anytime almost all the staff is in one patients room, you know it is serious on the Cardi floor.

I called Chris and told him he needed to get down there as soon as possible, things were not looking good. I had the car so he had his sister drive him. They knew something wasn't right even without Chris giving them the right info.

He walked into the room, looked at her, saw me, and then it hit him. He walked over and wrapped me in his arms, that was when I actually made a sound with my crys. The nurses knew how serious it was and they had tears also.

The doctors stabalized her while calling down to the O.R trying to find out how the baby in surgery was coming along to see when Lily would go in. We soon came to know the baby in surgery as baby Addison. We met her parents in the waiting room as we were ursherd out so they could finish preping Lily for surgery.

Unfortunatly the surgeons did not feel comfortable going in at such a late hour for her proceedure. It was 2 pm when they got out from the previous surgery with Addison. They evlauated Lily's condition and said that she was stable enough to wait until tomorrow, which was Saturday. They would take her in at 6 to start the pain-staking surgery.

We made phone calls letting everyone know what was going one and then bunked down for the night, which thanfully was void of any bumps.

Saturday dawned, my husband and I looked at eachother and said, "Happy Anniversary!" It was our 5 year anniversary. Not how we pictured spending it.

We walked down to the OR

A walk where I prayed the whole time, "Not this day Lord, if you take her, not this day."

I prayed that all day, I told him that I did not want to remember my wedding anniversary with the day of my daughters death.

We waited for 11 hours while she was in surgery. 11 hours of hell.

She came upstairs, but we didnt get to see her right away. We were in the childrens play room, I was coloring, something I find thereaputic. There was Addison's parents there, along with our good friend Avery, her husband Tanner.

The surgeon walks in and say,"Its' not good news." Then he looks around, everyone was looking at us. He nodded his head to outside. We followed in a zombie trance.

"This surgery was hard, her heart is so weak. We tried 4 times to get her off of bypass and her heart didn't want to start again. On the 5th try we got it, but it is weak. There was a lot of scar tissue from the previous surgery. We have never seen it this bad so quickly after a surgery. The ammount of scar tissues was something we expected to see after 5 or 10 years, but not a month. The first 72 hours are the most critical, but that is IF she makes it through the night first. I want you to prepare yourself, the outcome does not look good. We will do everything in our power to stablize her but there is nothing left surgically for us to do."

If I was not holding onto the wall, I think I would have fallen over, my husband gripped me and we just nodded our head. We had to wait for them to stablize her and finish getting the room preped..so we went back into the play room, so I could pick up my crayons. Everyone just looked at us....I think our faces said it all.

I took the phone and walked out of the unit to place a call to my family. My dad picked up, "How is she doing?"I was on speaker phone, a confrence call with the family

I lost it....."Daddy, its bad, It's really bad. Her heart is very weak, they don't think she will make it through the night. It will be a miracle if she does. All we can do is pray...they said there is nothing left for us to do but just pray basically." I hung up, I found out later that my dad broke down along with the rest of the family.(They all live in CA, we are in AZ)

We finally walked into the room, it was a battle feild, I was not prepared that time, she was fighting harder then she ever had to fight the first time. Her color was better but her heart was weak.
(This picture is not for the faint hearted...please prepare yourself)

This was only half of the quipment in the room, the other side of her bed had a Nitoxide tank, along with her Oxygen, and then more pumps, blood products and a few other machines.

Family came by to see her that night, Chris's second brother came and his reaction was one I will never forget. He walked into the room and staggered...Chris's sister went over and put an arm around him to steady him. It was quite in the room, no one said anything. All you heard was the machines and the nurses. Hushed phone calls between the doctors, but yet all at the same time, there was a sense of peace.

Lily faught that night, and made it to the next day. A day the doctors didn't think she was going to see, but she did. Nothing BUT a miracle, and everyone said it. She fought and fought, working against her breathing machine, wanting to be done with it.

4 days after surgery, she opened her eyes. You could not talk in the room or touch her, it caused her to much distress. My arms ached once again, I just wanted to talk to her and hold her. I was sitting across the room one day writting and humming like I normally do, completely forgetting that I was there. Lily had been throwing a tantrum and had the nurses and doctors in trying to calm her down. Then I started to hum louder to calm myself...and praise the lord in heaven it calmed her. They all turned and looked at me, and told me to come closer and humm, so I did. Her levels came down and stablized, she was peacful. From that day on there was always music in her room. She opend her eyes that day and looked at me, such beautiful blue eyes, and that was when I knew she was going to be fine. I could see the strength and determination behind them again. She was saying, "You can't get rid of me that easy...I am here for the long haul mom. I am figting...please fight with me."

A week and a half later, the breathing tube came out.

A month and a half after that surgery we were home again.

By looking at her you would never guess she had fought for her life and almost lost it.

We were home 5 months before things turned south again, but not like last time. They had to repair some things and buy us more time before they had to replace her valves, which is a risky surgery.

This surgery was qucik, she was only in the OR for 3 hours, and everything went smoothly

Lily was home in 4 days. Our shortest hospital stay EVER. They are hoping for 3 years from this but I am saying a year....don't get me wrong...3 years would be great, but I know from Lilys track record, a year would be good.

Our lives are forever changed from this. We NEVER heard of CHD's before they affected us. How could you not hear or learn of this when having children. You hear of down syndrome, you hear of spina bifida and childhood cancers, but NOTHING of CHD's.

That needs to be changed...and you can help. Click this link or copy and paste it into a browser and sign the petition for media awareness.

Copy
http://www.gopetition.com/petitions/media-awareness-for-chd.html

or click here

CHD PETITION

One signature can mean the difference in our lives...in your lives.

Here are some CHD Facts

Feb. 7-Feb. 14 is Congenital Heart Defect awareness week. Before we had Lily, I had never even though about heart defects. I knew of cancer, diabetes, obesity and many other issues that children have to face thanks to the media and public awareness. I never knew any of the following facts... I never thought to donate blood... I never even thought about organ donation!

Did you know???

** CHD's are the number one birth defect and the number one cause of infant death related to defects-- 1 in 85 babies born will have a CHD

** 1 in 10 of those babies will have a fatal defect

**In the U.S., nearly twice as many children die due to CHDs than that of all forms of childhood cancers combined. Yet there is 5 times more research for pediatric cancer than for CHDs

**Causes for CHDs are still being studied. While there is no known definitive cause, it is said that both genetics and environmental factors can play a role.

**About 40,000 units of blood are used every day yet only about 5% of the adults, the only ones who are eligible to donate blood, do so. Someone needs blood every three seconds in the United States; that someone is often one of our heart children.

**Only about 30% of the children who need a heart transplant receive one in time.

What can you do??

RAISE AWARENESS -- DONATE BLOOD -- REGISTER TO BECOME AN ORGAN DONOR!

CHD AWARENESS VIDEOS
These will change your life

VIDEO ONE-Lilys First Surgery

VIDEO TWO-Lilys Second Sugery

VIDEO THREE-Lilys Thrid Surgery

This song below is our life....the lyrics say it all

Be thankful for everything you have....it may be gone tomorrow. Live today like tomorrow may never come.

God bless you all!

Jenna