Letter To My Sweet Evelyn, Love Mommy

My Dearest Evelyn,

The first moment I saw you I was struck by your beauty. Even with so many tubes and wires coming from you, everyone who saw you commented on what a lovely baby you were. I believe that was somehow part of your testimony here during your short stay.

I was so delighted that you came into the world screaming. You were full of passion. And you were so plump! The Bible says that God formed your inward parts and knit you together in my womb. I believe that you were perfect the way He made you, Evie. He doesn't make mistakes and He made you the way you were to glorify His name. Mommy hoped He would glorify His name by healing your inward parts here on earth, but that was not His plan. You know, we don't understand God's ways a lot of the time and sometimes life is just so perplexing. Things often turn out so differently than we expect. But one thing always remains constant: Jesus is still sitting on His throne and He has not changed. He was not surprised when the doctors kept finding new problems in your chest. Daddy and I were so tired of bad news that that we began running the other way when we saw a doctor coming. But Jesus knew. He was not surprised when the surgeon told us he'd never seen a set of problems as complex as yours. Mommy wondered how a world-renown surgeon could not do anything to help her baby, but God made you that way. He wanted to do something through you because He had a plan and purpose for your life. He knew that even the most gifted surgeon would not be able to fix you. Jesus always knew. He made you, baby girl.

In your twelve days here in this life you have impacted more people than many do in their entire lifetime. You touched hearts in a way that most people can't. God spoke very clearly to me about a month before you arrived that He was giving you to Daddy and me as a gift. He said that you were going to keep us from lukewarm Christianity. At the time it didn't make a lot of sense, but Evelyn, God has done such a work in mine and Daddy's hearts. I am changed forever. I got to choose to love, knowing that it could result in loss. I got to choose to believe the best, against all odds. I got to learn what faith really is, even though it didn't turn out my way. You have given Mommy the best gift a daughter can give. The opportunity to believe for the impossible, and to love deeply, getting nothing in return. Mommy needed this lesson! I've been longing to be able to love others more but I've felt locked out, like I will never be able to feel the pain of others in order to be used by God to comfort them. Thank you for unlocking my heart. I am forever grateful to you, my Evie girl.

We never ever stopped believing that God was well able to give you a new heart and lungs. Even after you left us we continued to ask the Lord for a miracle and for you to be healed. That was the most we could do, and we did it with all of our strength. Yet at the same time we were holding you with open hands and willing to let the Lord accomplish His plan in your life.

Evelyn, some people leave this earth having never accomplished the purposes God had for them here. Instead of choosing to receive His gift of amazing life and freedom from sin, they choose to live for themselves. People choose not to follow Jesus and they never even see all of the blessings God had just for them: freedom from guilt and shame, and peace no matter what trial. I want to tell you that you did accomplish your purpose here. You hit the mark that God had for you. I take this as a challenge, and I will use it to challenge others in the days to come. I will say to them "Evelyn had twelve days and used them all, how many days will it take you to get right with Jesus and start accomplishing the purpose He has here for you here?"

Despite the tears and deep grief, my heart is glad. I am content knowing that God is the giver of all good things. He gives and He takes away. I will always bless His name. I am thankful for the twelve days we had with you. I am especially thankful that the Lord touched your body and helped you to breathe life for the span of four hours on your own. That time with you was more precious than I can express. My heart was consoled as I held you and kissed your sweet face as I had so longed to do since the moment you were born. Now Jesus is holding you and kissing that same sweet face. I was excited for the day I get to heaven before, but now I am even more excited because I will be with you in the presence of Jesus, worshipping Him for eternity. I will hit the mark God has for me here and then I will be on my way. The Bible says that this life is fragile - it is but a breath. So goodbye, my sweet daughter. I will see you in a breath!

Love, Mommy

Evelyn Hope Nelson was born in Palo Alto, CA on February 23, 2009 and died in Boise, Idaho on March 7, 2009 of Congenital Heart Disease. She is survived by her father and mother, Chris and Stephanie Nelson, and her big sister, Clara Nelson. She is also survived by numerous relatives, grandparents, aunts, uncles, and cousins.

Many many thanks to all of you who prayed for our family and who sent us verses and words of encouragement. Thank you for the meals, for cleaning my house and for even giving us money to help with bills. Wow. The generosity of the people we are surrounded by. We love you all so much more than we can say and we cannot wait until it's our turn to bless, clean, cook, and pour out love to you.

All our love,
Steph

Homegoing Service

A few of you have asked about Evelyn's homegoing service.

The answer is YES you are invited! Please come, it is going to be an amazing celebration of Evelyn's life and the goodness of God. Here are the details:

Friday March 13th @ 11 am
(Viewing at 10:30 am)
River Valley Community Church
1115 N. Garden St.
Boise, Idaho 83706
Short graveside service immediately following

I will post my memorial to Evelyn after the service sometime, which will be our last post. :)

We love you all and thank you again for sharing this short season in our lives with us.

Love,
Steph

Evelyn is With Jesus

Our beautiful Evelyn Hope went to be with precious Jesus last night at 10:05 pm. We got four wonderful hours with her free from tubes and wires. We prayed for pretty much the whole time asking God for a miracle. After she died, Chris and I kept asking. We are thankful for the wonderful four hours we got to hold and kiss our baby.

We know that God's ways are good and right and perfect. We don't understand them but we worship Him anyway!

He is good all the time no matter what our circumstances say.

We will soon be posting one last time as a memorial to our sweet daughter and as a thank you to all of you warriors of the faith who prayed hard and believed well.

Jesus will richly reward your faith.

All our love,
Chris and Steph

The Plan

We are going to be unhooking Evelyn from everything @ 6pm MST tonight. If she is able to breathe on her own for a bit we will stay in a room here in the hospital tonight with her. If she's still breathing in the morning we will get to take her home with us. If she stops breathing, our plan is to pray that God would raise her from the dead. We have nothing to lose at this point. We know God wants to do something huge through her but we don't know what it is. His plans and judgments are perfect and as long as there is opportunity we will pray and believe for LIFE. We know that we have access to healing just the same as we have access to forgiveness - through the cross of Jesus. This is what we are believing for. Thank you for believing with us. We will let you know the outcome when it is appropriate to do so. We love you all so much!!

Steph

Home Sweet Home

I cannot tell you how wonderful it was to sleep in my own bed last night! We never knew our bed was so comfortable! :)

Thanks for praying for my health and for good roads! We had both! God answers prayer! He is so amazing.

We are meeting this morning with the "care team" at the hospital who will help us make a plan for Evelyn. We are hoping they will let us take her home but have a feeling this may not be as easy as it should be. Will keep you posted as details unfold.

All our love!
Steph

Have We Exceeded Our Prayer Request Limit?

If not would you toss up one for me today? We didn't even make it to Reno last night because yours truly got incredibly sick. So here we are in a podunk town in CA just waking up (late! We are so tired.)To face a very long stretch of road. Please pray that I would get well fast. I cannot be sick right now! But I am dreading getting into that car. One thing is for sure I will never eat McDonalds again. That's what I get for eating that junk! :) please also pray that Donner Pass and NV/OR would not be snowy. We need to get in at a decent time tonight. Evelyn arrives today early afternoon. I can't stand the thought of her in a new and strange place without us for very long.

Thank you for continuing to support us and pray for us. Everyone should have a blog so we all can pray for each other.

Oh and Jessica, you are so right about Evelyn already being healed through what Jesus did on the cross. We are going to be praising Him the whole way home. Since I WON'T be throwing up! I keep teasing Chris..."I think its morning sickness, babe. Maybe I'm pregnant." He doesn't think its as funny as I do. And of course its only been 1.5 weeks since Evie was born so I'm not for sure.

Love you all!
Steph

As it Turns Out...

We met with the surgeon this morning and he confirmed what everyone else had already told us. He put it this way - to do the 3 surgery series on a baby with JUST Hypoplastic Left Heart Syndrome is about a 90% chance of survival. Which is really good. This is what we anticipated coming down here. But after Evelyn was born they discovered 6 other major problems with her. Dr. Hanley said that doing the surgery on a baby with HLHS and just one of the other major problems she has brings the odds of survival down to 50/50. Which puts in perspective where Evelyn fits in. WAY below 50/50. With not one additional problem but six, he said he doubted she'd even make it out of surgery and if she did she would not leave the NICU most likely.

I never in my wildest dreams would have thought I'd make the choice we are making. But it is the best and really, only decision there is to make.

If the top surgeon - who by his own admission - says that he rarely turns families away from surgery says its not an option, then well, we sure don't want to do that! We are so glad we talked to him. We were leaning away from surgery anyway, so that was the confirmation we needed.

I guess it's illegal to transport a "dying person" as Evie is considered by the doctors, across state lines so our options were:

1. Unhook her here and "wait."
2. Get a medical transport to take her back to Boise, admit her to the NICU there and unhook her.

Our insurance doesn't cover this type of transport but God is so good to us, continuing to make our way smooth down here. One of the social workers got approval for Stanford to absorb the cost of the transport for us! So they are paying for it. We started crying and then the social worker started crying. God is good! Evelyn leaves today on her private jet - still on the medication that makes her stable, and we are just waiting to sign some papers before we hit the road!

Now we will get to see God do a miracle in Evelyn as we step out of the boat and onto the water by unhooking her. This is the perfect backdrop for a miracle and we will not stop believing! Please keep praying for a miracle for Evie!

Nothing is impossible with Jesus!

Lord, you are good and we put our baby girl, Evelyn, into Your hands. She is Yours. Please glorify Your name through her.

Amen!

Decisions, Decisions

The meeting with the doctors was as we anticipated. They gave us the option of surgery but they recommend against it. From their standpoint (50 doctors all agreed) the risk is so high and if she lived through the surgery she wouldn't live beyond her first year. The other option, of course, is to just take her home. As you can see this is the most difficult decision Chris or I have EVER had to make. But we know that as Evelyn's parents, God will give us grace to make a good decision. AND we know God is our Healer and so we will continue to believe for Evelyn's healing either route we choose. We probably won't post again until we've decided - but we want to decide soon.

Thank you again for your prayers and love. Please keep praying even though you may not hear anything from us for a bit. We will update again when we decide and have a plan of action.

All our love,
Chris and Steph

URGENT PRAYER REQUEST!

They actually called us! We are meeting with the cardiac surgeons and the cardiology team today at 1pm Pacific time. We are anticipating this to be the meeting where they tell us if they can do anything to help Evelyn. Please pray that God would give Chris and I wisdom about how to proceed. We know they will either tell us that there is nothing they can do for her, or that they are willing to do a surgery of sorts but with high risk and low benefit to her. We need God's wisdom! We know God's will is to heal Evelyn because He has spoken that to us but we don't know what that will look like.

Thank you for praying! We will report when we have something to report :)

Love Steph

Thoughts on an 18 Month Old

Wow. That's all I can say! It has been amazing seeing Clara. Our first encounter happened while she was asleep in the car. Waking up after a plane ride to two faces you haven't seen in weeks must have been interesting to her. It took her a bit to wake up let alone warm up to us. But now she's the same old ball of energy that we know and love!

A few thoughts...everyone says I'm seeing things but she is totally different than when we left for CA! 2.5 weeks is an eternity in toddler life! Her hair is longer, she's popped some new teeth which has pushed her two front teeth together. No more cute baby gap-in-the-teeth! She's a big girl. She talks and laughs WAY more, she eats way more, and last but not least she's gotten a much louder voice! Sorry Heidi but you are getting the blame for that one! I guess chasing three boys around for 2 weeks will cause any girl to learn to be heard! :)

Clara is such a bright light and a much needed distraction for Chris and I. Plus it's good for us to be on her schedule - 1 nap in the afternoon and to bed by 8pm!

About Evelyn today, she opened her eyes for the first time and got a good look at Mommy. I was talking to her and she was trying so hard to open them but they were glued shut. So I all but shouted across the room to her nurse "quick! Can I get some saline and gauze? She's trying to look at me!" I couldn't get them clean enough and she fell back to sleep but as we were literally walking out of the hospital I got a call on my cell phone from her nurse "she's wide awake and her eyes are open!" So I ran back up to the NICU and sure enough she was looking for me. I'll try and post those pics. Of course, I cried. She hadn't seen me ever and I had never seen her eyes - blue (of course). Then later she had what the nurses call "an episode." She was wide awake and freaked out and tried to pull out her IV's and breathing tube. So looks like she'll be sedated more often now. She's really a spitfire when she's awake! I can't wait until she's not hooked up to all of that stuff!

Word on the street is that the surgeons and cardiologists are going to talk about what to do with Evelyn tomorrow during their weekly 7am meeting. We would love for them to come to a consensus so we can go forward. We know whatever they decide won't affect Evelyn's fate as much as it will affect the vehicle that God uses to heal Evelyn. Mostly we would like it to move forward so we aren't just in limbo. At the same time we know God's timing is perfect and we don't want to rush Him. We continue to focus on being thankful for such amazing nurses, doctors, for the Ronald McDonald House, for amazing and supportive family who will travel so far to be with us as well as amazing family and friends who continue to lift up Evelyn before the Lord and contend for her healing. Wow talk about run-on sentence! That one was just for you, Kelsey Zedwick! Sorry my tiredness is really showing right now. :) I'm sure thankful for that 8pm bedtime tonight! And thankful that the joy of the Lord is my strength.

We love you all and will - of course - let you know if/when we hear something tomorrow. Don't be alarmed if we don't post right away though. Remember, things really do move slowly around here so tomorrow may be later this week too. :) Thank you Lord for your perfect timing!

All our love and kisses from Clara,
Steph

Steph Holding Evelyn!

Hello friends and family, I will let these speak for themselves-

Chris

Let Faith Arise!

We just wanted to give you a faith update. :)

We realize that a lot of you don't know all of the details about Evelyn's condition. Don't feel too bad, there is so much that Chris and I don't really understand every detail. Just take our word for it, the doctors still haven't decided on a plan - or if Evelyn is even a candidate for a surgery. But everything they tell us is bad, bad, bad.

HOWEVER, we want to share our hearts with you, our prayer warriors, so that you have some direction in how to pray.
We have more hope everyday. Last night I could not get any peace. Usually Chris will just pray for me and I'm fine. Not last night! I was exhausted but couldn't sleep due to horrible thoughts and emotions. Finally I cried out to the Lord and just asked him point blank "is it your will for Evelyn to live?" We have all of the Sciptures that say it IS His will for her to live but I guess in my human-ness (and inexperience in this kind of realm of living by faith) I needed to know for sure. God is so patient. No sooner had the last words escaped from my mouth when I felt His presence so near and total peace. Then I saw a picture of me holding Evelyn in the NICU with all of her tubes and wires (we are going to try and post those pics later tonight by the way). Then I looked up and Jesus was there with outstretched arms. I placed Evie in His arms and He took one hand and moved it over her from head to toe. All of her lines disappeared. Then He touched her chest with His finger and gave her back to me. I knew she was healed. I looked at her and then I surprised myself by giving her back to Him again. When I was first pregnant with Evelyn the Lord spoke to my heart very clearly that she was going to be like Samuel in the Bible - whose mother gave him to the Lord before He was born and He grew up serving God. I knew that what I was doing was giving her to the Lord as an act of consecration, or dedication to Him. This is the second time that He has told me that she would be fully His. We know she has an amazing call of God on her life. After this, I asked the Lord to please confirm this vision with His Word so that I wouldn't second guess it later or dismiss it as emotionalism. He reminded me of Rev 1:18:

"I am He who lives, and was dead, and behold, I am alive forevermore. Amen. And I have the keys of Hades (the unseen world) and of Death."

Jesus calls the shots on who dies and when. He controls this. The doctors do not get to decide who dies. And if they try to pronounce a death sentence over Evelyn we are not going to receive it. God has given us over 30 verses that say its God's will to heal and deliver. Now He has given me a promise because I asked Him to speak to me.

Please understand this is MORE REAL to us than what the doctors are telling us.

Pray specifically against a spirit of infirmity and a spirit of death. We really feel that this is a spiritual battle and the spirit of death is trying to lay claim on Evelyn.

Also Chris and I are learning a lot about faith. This is what we have concluded thus far. Faith is a lot like being crazy (by the world's standards). You honestly and genuinely are convinced that something is real when it is contrary to all natural evidence. Everything in the natural realm says Evelyn's chances of survival are nil. But we are looking past that and have our eyes FIXED on a God who does miracles with a word from His mouth. Her healing is more real to us than her diagnosis.

Everything in me wants to protect myself, to prepare for the worst and to some how buffer any potential disappointment by planning for "just in case God doesn't come through." THIS IS NOT FAITH! This is natural reasoning - an enemy of faith. Faith says that it is going to believe - not wavering in doubt - forever.

God has put Chris and I in a place where we have no option but to dive in headfirst and believe with all of our being that His Word is true, applicable to our lives, and in this case its our ONLY hope. Its easy to always choose the way that our 5 senses say to go when there is that option. For example, as long as we had the surgery and Dr. Hanley as an option we chose that but now that those may not be an option we only have the Lord. We are throwing our lot, our everything, in with the Lord. Please join us and be a part of a miracle. God wants to strengthen the faith of His Beloved Church. This means you too! Decide today to believe the Word, forget about the "what if's" and give your everything to Him. You won't regret it!

We love you! Please don't grow weary praying for Evelyn. We will see God move!

Love Steph

Clara is Coming to CA!

Since my dad and Chris' parents are all here we thought it might be a good time for a visit from big sister! So my mom and Clara fly in tomorrow! This way we will have lots of extra hands to help us with Boo and at the same time we will get to see her! Chris and I are so excited to see her. It's going to be very good for all of us!

That's all for now. Just wanted to share the excitement! :) Hope everyone is well and enjoying your Monday!

Love Steph

No News - I Promise!

Some of you are wondering if we've heard anything from the doctors. And nope, we haven't. Now you see how serious we were when we said nothing happens fast around here! :)

As for other Evelyn news, when Chris and I arrived to visit her today I was shocked and pleasantly surprised to see that her coloring is way better! It was starting to get a tinge of yellow as you maybe noticed from the pictures. Now she's pleasantly pink. A little on the pale side, but with my arm next to her we are the same color. Clara isn't exactly a Bahama Mama either. :)

So for the big surprise...are you ready? We got to HOLD her today!!! Yep full on, cradling her in our arms, tubes and wires everywhere. It was so wonderful. And yes, I cried! That's not fresh news. Poor Chris - I cry all the time so he has his checklist "do you need your pain meds? Are you missing Clara? Is your faith low? Do you need me to pray for you?" When I held Evelyn he didn't even ask. I was glad because it would have just added another question to the mix "are you crying because you're happy?" Anyone know when postpartum emotions/hormones GO AWAY? Soon would be nice.

Back to holding Evelyn. She wasn't sedated and instantly melted into my arms. She was so calm - I loved it!! I'm so thankful for her nurse, Jean. She's been a NICU nurse for 20 years and takes such good care of Evie. She's the only one of Evie's nurses who has even been willing to talk about letting me hold her. I guess its kind of scary for the nurses because of how tied up Evie is. So if they aren't experienced they usually stay away from letting parents hold the baby. Thank you Lord, for Jean! :)

I will post pictures of our first hold later.

Chris' parents and sister along with my dad arrived this afternoon. Its fun to show Evelyn off! It will be so good to have company for a few days. We are blessed to have people in our lives that make so many sacrifices.

Please keep praying for a miraculous healing for Evelyn. We are confident that your diligence in prayer will pay off. Plus you will be richly rewarded in heaven. :)

Please also add in there a prayer that I would heal faster than I am from my surgery. The soreness is really starting to get in the way of how much I'm wanting to be with my baby. I get tired too fast and Chris makes me go home and rest. God can heal me too!

We love you! Thank you for your encouraging comments. It helps us to keep fighting!

All our love,
Steph