I came across these 3 pictures the other day of holding Raygen during the first week of her life. This is the only time I held my daughter without scars. She was perfect in every single way. If she wasn't in Seattle NICU or attached to an IV pole and so many monitors and wires you'd think she was perfectly healthy. From the outside in she was perfect, but from the inside out she was in serious danger.
Joshua 1:9Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the LORD your God will be with you wherever you go. (NIV)
I can not put into word exactly how I felt during this time period of Raygen's life because I was on an emotional roller coaster. I had just given birth to a daughter that I was terrified I would never bring home. Fear gripped my insides like a press. Squeezing me harder each and every hour. I was so extremely scared to love her and even more not too. Too be honest I loved this little girl since the moment I knew I was pregnant, but holding her, knowing within days she was going to have major open heart surgery and may not survive made me ill. I hardly slept, ate, or left her side. I tried to spend every single second with her. At the same time I was so scared I made myself sick with anxiety and felt horrible. I cried constantly and I look back on this time as one that I wish I could fast forward through. The emotions that it brings up are hard to deal with even to this day.
Deuteronomy 3:22Do not be afraid of them; the LORD your God himself will fight for you. (NIV)
Being in the hospital made it hard to truly bond with Raygen because she had a full time nurse who cared for her, plus it was best if she wasn't held that often to protect all her iv's and equipment she was attached to not to be disturbed. But I held her as much as they would let me. We slept in a little sleeper room upstairs and carried a pager around constantly. I will never think of pagers the same way again. The few times ours went off we would sprint from wherever we were to our daughter praying she was okay. We would call down to the nurses at all hours of the night to get updates or if anything changed they called us. We never wanted to be away from Raygen more then a few hours to rest so Randy and I were always exhausted.
Philippians 4:13I can do all this through him who gives me strength. (NIV)
Fear was and is my constant enemy. Fear tries to stop me from enjoying life. Fear likes to control me. Fear tries to take the joy out of every moment. Fear will always be my enemy. Why? Because I'm a heart mom. I try my hardest to live day to day and not think about all the "what ifs," but I'm a worrier and she's my daughter.
Isaiah 41:10So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand. (NIV)
We were told during our 20 week ultrasound that there was a possibility something was wrong with Raygen's heart. I look back now and can tell you it was one of the best and worst days of my life. The joy of knowing I was going to have another little girl and the grief that something was wrong. It was a long two weeks later that we were given the devastating news that Raygen had HLHS, or half a heart.
It's probably hard to believe this girl is almost 6 years old and has undergone 3 open heart surgeries. That is 3 times her heart has been stopped, placed on bypass, and restarted again.
Deuteronomy 31:8The LORD himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged.
Deuteronomy 3:22Do not be afraid of them; the LORD your God himself will fight for you.
I have included Bible verses because they are what I turn to during difficult times. There are no words to say to a parent going through a serious illness with their child. God always knows what I need to hear. What I need to be reminded of. I hope you find comfort in them as I did.
Okay so when I'm stressed (lets say that's about every day) I crave chocolate like there is no tomorrow. So I was so excited that IdealLean turned my favorite smoothie into a protein bar. Mint chocolate protein bar is going to be on my "must" list. This will be an awesome way to satisfy that chocolate craving and not totally ruin my diet for the day. Right now the mint chocolate protein bars are on sale!! There only $14.99 a box. That's a savings of $15.00. If your like me and need a little treat on stressful days, or everyday, I recommend these.
xoxo
Erin&Raygen
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