Evelyn is still in stable condition. The results of her CT scan (which ended up being this morning instead of tomorrow) showed that she needs more tests. :) So they are going to do a cath procedure tomorrow which should give them some conclusive information and from there the cardiology team will sit down with us and make a "game plan" as they call it.
Today was specifically trying for Chris and I emotionally. Tonight we spent some time seeking the Lord together and reviewing the promises He's given us - both from His Word and what He's spoken to our hearts regarding Evie's future. Part of the trial is just being here in the hospital environment where everything is medically focused and things are never clear or black and white. Words like "tests, risks, complications etc..." abound in most of our conversations with specialists. It can really start to weigh on our faith! It was good for us to stop and re-focus on the Lord and on His promises. We finally got peace and joy again. It's easy to start depending on what the doctors say (or don't say) and shift the focus from faith in a healing God to faith in fallible man. Don't get me wrong. We APPRECIATE every doctor and nurse that has crossed Evelyn's path (Lord bless them!) BUT our hope MUST be in the Lord. The other part of why today was so hard is that I'm postpartum (emotional!) and Chris is totally exhausted. We've got a midnight stomper in the room above us at Mickey D's house and poor Chris isn't the heaviest sleeper. Plus he's carrying the weight of my emotions and his own. Please pray that Chris will get good sleep at night. Evelyn and I need him strong and full of energy. As for me, I've discovered the power of earplugs here during my hospital stay. :)
One thing I have learned this week is how much I've taken health for granted. Will everyone join me in taking a moment to genuinely thank the Lord for the health they DO have? We all have trials in our bodies but I guarentee there is also something about our health we can thank Jesus for. I'll start: I'm thankful that Evelyn has two kidneys, she doesn't have any problems with her brain or chromosomal abnormalities. I'm thankful that her color is great (pink - not blue like it "should be") and that she's a chubbo. I'm thankful that she's not premature. Oh and she happens to be adorable! :) We have it good compared to what other parents go through!
Every night as I am settling in to sleep I hear newborns SCREAMING in the rooms next to mine. I remember when Clara was a newborn at times (usually when I was sleep deprived and recovering from surgery myself) feeling so frustrated with a screaming baby. You want desperately to meet their needs but you don't always know what they need. It can be intense and make you feel helpless. But I would like to share something from my heart with all parents of newborns and potential parents. Remember during those times that you can be so thankful. Thankful that you can hold your baby, that your baby is strong enough to SCREAM and that it TRULY is a privelege to get up a few times a night with that precious bundle. What amazing things we have that we take for granted. I know I did!
How blessed Chris and I are to learn to be thankful in all things when we still have so much of life ahead of us. Thankfulness chases away the heaviness and darkness that clouds our ability to see with eyes of faith and then ignore our 5 senses when they don't agree with God's Word.
Please continue to pray for Evelyn. We would appreciate prayer too for ourselves - that we would LIVE in a place of faith where we reject information our 5 senses gives us when it is in conflict with God's Word. Without faith it really is impossible to please God. We must come to Him believing that He is and He rewards those who diligently seek Him.
What great things lie ahead of each and every one of us! And we have a God that walks with us every step of the way. We have nothing to fear.
We love you and long to be home where we belong!
Steph
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Hi there Chris and Steph,
ReplyDeleteI've stumbled onto your blog via Denise Mira's blog. We visited Denise and Greg at their church in Seattle a few times. And I just love reading her blog!
As your your blog, it sounds strangely familiar...our 2.5 year old daughter Abbi also has HLHS (and now that you are in the midst of this, I'm sure you know what that means - for the rest of you Hypoplastic Left Heart Syndrome).
I know that each baby is different, so I can't say that our story will be your story, but perhaps I can encourage you that we, and many others, have walked a very similar path to the one you are on now. Its heartbreaking at times to see your little one suffer, thrilling to see them fighting back, and a very sobering reminder of who is in control, and how God has his hand on your little one.
I will continue to follow your blog, and I will pray for little Evenlyn. She is beautiful, and all of your pictures remind me of Abbi's first days. We are days, weeks, months (we don't have a date yet) from Abbi's final surgery, the Fontan.
You can read some of our story at the following http://www.caringbridge.org/cb/inputSiteName.do?method=search&siteName=abbynepper
I wish you all the best, and will keep you in our prayers. Stay strong by his grace!
Holly Nepper
Hi Chris and Steph!
ReplyDeleteI was just praying for you guys this morning and wanted to encourage you with a passage in the Bible. Psalm 91 is SO good! Here are a few lines from the Amplified version:
"He who dwells in the secret place of the Most High shall remain stable and fixed under the shadow of the Almighty [Whose power no foe can withstand]. I will say of the Lord, He is my Refuge and my Fortress, my God; on Him I lean and rely, and in Him I [confidently] trust!......Because he has set his love upon Me, therefore will I deliver him; I will set him on high, because he knows and understands My name [has a personal knowledge of My mercy, love, and kindness--trusts and relies on Me, knowing I will never forsake him, no, never]. He shall call upon Me, and I will answer him; I will be with him in trouble, I will deliver him and honor him. With long life will I satisfy him and show him My salvation."
I hope this (and the rest of the chapter) will encourage you today. You guys are amazing and full of faith and so full of the Love of God and it's going to pour out on those around you that really need it today! We miss you here too! Blessings, Lindsay
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