Thursday, November 4, 2010

Broken Heart

I've been wanting to post now for the past few days and kept thinking of things to write and between the crying, researching, working and chasing after kids I really just avoided it all together.

Finally I have a few minutes and wanted to share with you on the status of Berlyn. Monday was her follow up cardiology appointment since her last hospital visit. I was already having a bad morning and was hoping that this wasn't a sign of things to come. Unfortunately, for us this was a sign of how the rest of the day would go.

I asked my Grandma to go with me to the appointment to be with me and keep an eye on Aven for me. I had this gut feeling it was gonna not be news I wanted to hear alone. It didn't take the doctor long to look at her and let me know that he had a good feeling that within the next year or so Berlyn would most likely have to again have the balloon dilation performed. Hearing those words was like a stab to my chest. I tried to play it cool but was screaming inside. WHY??? WHY AGAIN??? I know what the risks of doing another one is. You risk stretching the valve again and risk causing it to leak. We also discussed the possibility of having to one day repair or replace her valve. I know that everyone says that everything will be ok and just take it one day at a time. It's just not easy to not think about what could be a great possibility down the road. I was fine up until the office door closed behind me. I just stood there and cried. I always read about this stuff that happened to other children. Never in a million years would I have pictured myself going down this road.

It amazes me that in a matter of minutes how your life can be changed forever. On Monday I felt like life as I once knew it came to a halt as the rest of the world carried on around me. It was my Moms birthday and I was having everyone over to celebrate. I didn't want to ruin the day so I tried my best to put a smile on my face and act like I wasn't breaking down inside. Sometimes you never realize things living in your perfect world that there are bigger things out there. Things that can bring you to your knees in an instant. Things that have kept you from seeing the true meaning of life and what it really means to live.

Monday night I kept looking at Berlyn thinking how can this laughing baby possibly have anything wrong with her?

Being told that there is something wrong with your child is probably one of the hardest things to hear as a parent. You start feeling so many emotions all at one time and feel so quickly overwhelmed. You go from being shocked, angry, helpless as you realize there is nothing that you can do to change the situation and have so much fear of not knowing where the next day or months will take you.

It starts to seem like everything around you begins to suffer. I have watched my friendships become closer and even some fade away. I have watched as my marriage takes a hit as we both try and learn to come together and deal with our grief on many different levels. (I tend to be more open with my feelings, I think he thinks he has to be the tough one and not show them.) There are so many hardships that come along with this kind of news that can either break you if you let them. Or can make you stronger and realize the important things that really matter.

It breaks my heart to come to realize I don't have the perfect, healthy child that I always dreamed of having and living the life I thought I would. I have found hope that although this new journey is full of many uncertainties that my faith and ability to trust God fully with this will guide me through this journey. I have found joy in the simple things and have learned to cherish each and every single moment with my family.

I know God performed his first miracle with Berlyn's life when we were able to find out at a unrelated urgent care appointment that she even had anything wrong with her heart. I know for a fact that if we didn't find out that day that she might not be around today.

Berlyn is a precious miracle to us and I thank God for her everyday for her and for the changes I have made in my life because of having her here.

Tuesday, September 28, 2010

Another scary moment that probably aged me 20 years

Well I'm back. What a crazy few weeks it has been. Just when you think everything is going nice and calm and your life is getting back to semi-normal, something happens and once again a rug is pulled out from under your feet.

September 12th...another one of the scariest days being of being a parent.

I knew this day was off to a bad start when I decided it would be a good day to go on a hike. It's the first time I've done any major exercising in awhile. I know your only supposed to wait the normal 6 weeks to start working out but I chose 7 months. (wanted to make sure I was really healed up :) haha) The hike was about 5 miles long and about 2.5 miles up a huge hill. I was thanking God when I could see the end in sight. I was thinking how bad I wanted to just go home and relax.

On my way home I got a call from Johnny and he said, "You need to hurry and get home, Berlyn just puked." I was thinking ok she just spit up like she always does. No big deal. I hurried home and walked in and went over to say hello to her. As soon as I walked over to her I could see she was choking and gasping for air. I sat her up really quick and she was trying to throw up. She spit up some nasty looking bile and it got on me. I told Johnny to hold her for a second while I wiped it up. As soon as I turned my back he yelled at me, "Brianna somethings wrong she doesn't look like she's breathing." (Something to that effect. After I looked back everything was a blurr) I looked over and she was limp and really white and her lips were blue. He padded her on her back and she kind of woke up but was still really out of it. I grabbed her and told him to dial 911. I grabbed her and held her in my arms and immediately thought that she was having problems with her heart.

I called my Mom and told her to come as soon as she could. As I sat and waited for the ambulance to arrive which seemed like an eternity. I just held her and prayed to God that this wasn't her heart and she would be ok.

The paramedics got to our house and asked us a bunch of questions and transported us to the nearest hospital. I think they thought I was just an over paranoid Mom who's daughter just threw up and was no big deal. The paramedic pretty much just sat there filling out paper work the whole ride over. I kept telling him that she looked super pale and I could tell something wasn't right. He still sat there filling out his paper work when she began to throw up again. Finally he realized that I wasn't just a over paranoid Mom and this was a little more serious. He finally said, "Yeah maybe I should put on some Oxygen." DUHHHH

As soon as we arrived at the hospital they started her on IV fluids and her color started to come back and she was being her happy self again.


They didn't know what would cause her to pass out and wanted to do more testing. Chino hospital doesn't have a pediatrics department so they transported us to CHOC. I was so thankful to have them come. I could now know that Berlyn was in safe hands.

She got treated like royalty on her ride over to CHOC. They sang to her, let her watch Dumbo, blew her bubbles. All while I sat in the front seat pulling out my hair.

We got to CHOC around 5PM that night. I was still in the same sweaty work out clothes from that morning and still hadn't eaten. By this time the soreness set in from not working out like that in a year. I was walking around the hospital like I just finished a bull riding competition.
They did a bunch of tests on her and still couldn't figure out what was wrong with her.
They decided to keep us over night and see how she did.
They finally came in the next day and told me that she was super dehydrated and said it caused her to have a cynaotic episode which made her pass out.


They did check her heart and the report did show that her valve looked a little tighter but her cardiologist said that when they get sick or are under stress it can cause that to happen.
We go back on November 1st to see how her heart is doing then.
This little girl is sure giving her parents some sleepless nights and heart aches and she's not even 1 years old.

Friday, September 10, 2010

Missing in Action

I haven't posted in awhile. Been pretty busy. Not to mention my husband thinks I spend way to much time "blogging" so I haven't done it as much. :)

Anyway, things have been going good. We had a small scare with Berlyn a few weeks back. Her head grew pretty quick since her last appointment so they were concerned she had "water on her brain" Thank God that my baby just has a big head. She is perfectly fine.

We did find out that same day that Aven also has a heart murmur and we are going on Monday to see the cardiologist to find out if his is just a "normal" murmur. I am praying that it is.

Today Berlyn is 7 months old! Boy how the time flies by. I will update with her monthly picture later but I will leave you with a few pics I took of her the other day.




I wish I looked this cute chubby :)

Friday, August 6, 2010

She wore an itsy bitsy tinnie winnie.....

Yellow polka dot bikini

that she wore for the first time today!






Look alike?

I've been working on trying to get some pictures done of Berlyn for her up and coming 6 month birthday. Can't believe it's been almost 6 months already. Where has the time gone? You'd think it would seem longer since I haven't got sleep in that amount of time.

Anyway, here is a side by side comparison of Aven and Berlyn right about the same time. Do you think they look alike? Well I do. I think all except their noses :)


Friday, July 30, 2010

My first Diamonds...ok CZ's

Once again I am slacking on my blog. These past few weeks have been SO busy. I think everyone in the family got sick at one point in the past few weeks and Berlyn does not like her beauty sleep. Mom needs some beauty sleep BADLY :)

I've been going back and forth on if I wanted to get her ears pierced or not. I always felt so bad cause she's already gone through so many pokes and pricks and procedures in her short life. Why would I want to add to it?

I finally gave in and we took a family trip to go get them done.

Berlyn wasn't so sure about what was happening.

As you can tell by this picture I wasn't so sure either. This is my attempt at a smile. FAKE!
She was in such a good mood and so excited to get her first set of diamonds!




This was right after. She wasn't crying cause it hurt. She was crying when she found out that her Dad bought her FAKE diamonds!!! Guess he will have to make it up to her and get her the real things for her birthday :)

This was me after. (Please excuse the dark circles. I told you she's not letting me get my sleep) I think this whole ordeal was harder on me than it was on her.

As soon as the lady did her second ear my Mom grabbed her as fast as she could to comfort her. Can't stand to see her grandbaby cry :(

"Mom, you have to come back here we haven't paid for those yet!"


Thursday, July 8, 2010

Two years

Two years! Can't believe I'm even saying that. How only two years can change your life so much!

Two years of your sweet skin.

Two years of your contagious smile,

Two years of your awesome personality,

Two years of your frustrations,

Two years of your tears,


Two years of your friendship,

Two years of watching you grow into this little wonder.

It still feels like yesterday when I heard your first cry and wondered how I ever deserved this. I know I was meant to love you forever. You are growing up so fast and everyday is a joy to watch you grow into your own little self. This year was a year that I will not soon forget. I watched you as you took your first steps. Watched as my belly grew and grew and how you would love to rub my belly and kiss it and say "baby". I watched as you became a big brother and how you embraced your job better than I would have ever dreamed. I was so scared that you would think that I didn't love you the same or would get jealous but you didn't..you were such a good boy about everything.
Even though you didn't know it at the time but when I got the news of your sister being sick I hit rock bottom, you were always there to make me laugh even in my darkest days. You will never know how much your little smile meant to me.
I know words will never express the depth of love I have for you, but I will spend everyday of my life showing you.
I love you so much my son!