01 October 2010

Nobody really knows what went wrong.

We're back on ECMO for the time being. The victory was short-lived.

Shortly after I finished writing the last post, we went to check on him one more time. He was still looking good, even several hours after being taken off ECMO. Shortly after that, he started desating -- his O2 saturation levels dropping, his heart having to work much, much too hard. It was too much stress on his body.

He's back on ECMO and stable for now. It's nearly 3 am. They told us to get some rest and we'd talk later.

We know we have some tough decisions to make in the next day or two. Barring a miracle, we're faced with the following decision: do we let him go, or do we send him back to the cath lab for a procedure that might rupture his pulmonary arteries?

The team of doctors and surgeons here is amongst the best; I have to say that they've taken good care not only of Ewan, but of us as well. I know they're doing everything in their power. It's just that his case is so much to the extreme. His case is exactly what you hope not to see (as a parent or a doctor). And now we have to be realistic.

It will take a miracle.

81 comments:

Anonymous said...

I am so very sorry. Praying for you all from Minnesota.

KLaw said...

I am broken reading this. I will continue to send my prayers to Ewan and your family. Please know we are here on this journey with you and share in your love for Ewan.

The Hansen Family said...

I've been up since 3am when you wrote this, not able to sleep & I knew there was a reason, so I checked & found this post. Oh, Kirsten, I'm up praying for you all. My cell phone is on if you are still awake & need some prayers or an ear 360-224-1590.
Love, Ginny

christianne said...

Oh my goodness. This is not what I thought I would read this morning at all. It scares me for you. What a huge question to hold.

I am praying for you both, and for Ewan, and for the doctors ... that God would allow Ewan to be what He wants Ewan to be, and that God would grant all of you wisdom.

Much love to you from us, sweet and dear one.

hopeannfaith said...

I remain, we all remain, here, in prayer, in agreement with Ewan Eliezer, Kirsten and James! We call ALL the power of heaven to create a hedge of protection around this family, this miracle of God Ewan. It was God who told Moses to tell Aaron and Aaron's son how to tell his, God's, people that he, God Blesses them..."May the LORD bless and keep you; the LORD make his face shine upon you and be gracious to you; the LORD turn his face toward you, and give you peace." Num6:22-26
I am telling you loves that this is what God the Father is doing at this very moment and every moment of this fight...Blessings and Prayers continue here in NJ...pulling down the power of the heavenlies.

Hope's Blog said...

I will always believe in the power of prayer and the miracles of God. Praying like crazy today for Ewan and for your family. Praying for a miracle!

deb said...

oh, sweet Kirsten.
my heart aches.

Anonymous said...

Decisions no parent should ever make...but miracles surround these heart babies! A parent heart is always full of hope. Praying for healing, praying for peace and praying for a miracle. Crystal in IL

Stefenie said...

Kirsten, I am so sorry that his time of off ecmo was so short. I was so hoping that this was it and he would take off on his own. He tried. He's just not ready.

Please know that we are all keeping you guys close in our many prayers. Praying for continued healing of Ewan's beautiful heart, praying for strength for you and your husband and praying for much wisdom for the team caring for your little guy to find a solution to the problem.

Hang in there!!!

Tiffany said...

Ewan - my prayers do not stop! Hugs & prayers of strength to you and your mommy & daddy!

Molly said...

Praying for all of you this morning - I pray that you are surrounded with peace and understanding and strength. Still praying for a miracle - we believe in them for sure!!

Karmen M. said...

on my knees. If it only takes a mustard seed to move a mountian then God can heal his little heart. Dear Lord, Heal this baby, you knit him together in his mother's womb. Please Lord. You ask Your people to come to you in prayer, well we are coming. Please Lord blanket this family with Your love, Your peace, and Your mighty hand of healing. All it took was for the woman to touch Jesus' robe to be healed, we who are now covered by His blood through His ressurection are reaching out to touch His robe of healing for Ewan Eliezer. Heal this baby. Small steps or big steps, we are asking for a miracle. In Jesus name. Amen

Caleb said...

I find that my heart hurts for you two and that it is nothing compared to what you must be feeling. I went to bed last night with a fair amount of hope after reading your FB update then got the new update from Kaari shortly after 1 and was spinning from it.

This I know. God is good. God can make miracles happen. I rarely understand Gods decisions. The miracles are rarely what I would have expected. You two are wonderful and there isn't a doubt in my mind that you are great parents!!!

I love you both! I love your little Ewan!

Molly Alisa Photography said...

I do not know you, I found you threw Jill... but my heart is breaking for you. I will be praying for you today.

Dillie-O said...

Our hearts are heavy and still resolved to pray for the miracles you need. Lots of prayers coming today from us.

Sean, Jen, Rylee & Haylee

keli @ kidnapped by suburbia said...

praying for the miracle that you need, kirsten.

Melissa Elsner said...

Oh how my heart hurts this morning reading this. But I know God is good. He has already been glorified through all this and will continue to be. I believe that He can do miracles and that's what I pray for! Much love to you guys and sweet baby Ewan the warrior.

tea said...

Oh Kirsten.. I'm praying for you and your sweet one. <3

Heather said...

Praying for God's Miracle today ... for Ewan and for his parents. Please Lord grant Kirsten and James the strength, courage and love to make the necessary decisions. Please grant them the peace to know these are the right decisions no matter how difficult the may be ... Lord, I ask this in your name. Amen!!

Lindsey said...

Hello, family. You don't know me and I don't know you. I've been praying for your family for quite some time through a mutual friend. I have a miracle baby and already I see that Ewan is one as well. I'm honored to be in the presence of your faith; thank you for taking this journey with God, it wouldn't work any other way. By your side, I am also praying about God's will and for your strength. Many blessings to you all, you will remain in my prayers.
Lindsey

Courtney said...

I'm continuing to pray for this miracle.

Allie said...

My heart aches just reading this. I will be praying for the right decisions to be made....God's decisions. I will be praying for healing, peace and a miracle. He has fought so hard, I pray that his body and the doctors also continue to keep fighting.

Aritza, Goddess of .. said...

Thinking of you, praying for Ewan .. from Montreal, Canada. xox

Anonymous said...

God does still perform miracles, and my son is a testiment to that. He should not have survived his ordeal. He should not have survived ECMO. He should not be doing as well as he is. We are reminded every day of God's power, love, and mercy.
Lord, we cry out to you as our hearts ache for Ewan and his parents. Lord, heal him. Father, we know that healing comes in many forms, and we trust that you know how best to bring that healing. We ask that you choose to heal him in this physical life, and give his parents the same every-day reminder of your power and mercy that you have given us. Strengthen them Lord. Guide them through this storm. Protect them. Father we ask these things in your Son's name, Amen.

Your sister in Christ,
Jennifer

Sarah said...

I believe in a God of miracles. Like Ewan, my younger brother had serious health problems at birth. He was missing a vital vertebrae that would allow him to hold his head up. After I was anointed for him as a child and everyone surrounded us with prayer and support, according to the doctors it just "magically appeared". I don't believe in magic, but I definitely believe in miracles. Your family has such great faith and you are approaching this situation much like my own mother approached ours. Keep your faith and your strength, keep your good attitudes and understanding for the Lord. I am praying for you, your family and of course little Ewan. I can't wait for the day that I read your post about taking Ewan home, because I believe God is going to heal your little man. As for my younger brother? He's almost 21 years old, a drummer, skateboarder and generally sarcastic average guy. So much for never holding his head up...

Let your faith give you wings. I'll be praying.

Much love from Chicago.

Sarah said...

Kirsten, I can't even begin to find the words. I'm so sorry you have to face this. Dave and I are praying for all three of you today.

Baby Hung said...

I'm so sorry Kirsten :( I'm so sad reading this, I still believe in miracles. You are still in my prayer, I pray for you multiple times a day now. Every now and then I'll think of you and your family and say a little prayer. I know we dont know each other but a mother's love for her child speaks to all mothers.

Shay said...

Kirsten and James, I wish there was more I could say or do...I can't begin to imagine how hard the decisions you have to make are...praying God gives you supernatural wisdom and peace. I know He can do the miracle you and Ewan need and I am praying for that! Ewan has been super blessed with you and James as his parents...you have immense love for that monkey, it reminds me of God's immense love for us. I am praying super hard and have many friends praying with me. I love you!

jen said...

praying for a miracle.

Emily (Laundry and Lullabies) said...

My children and I are praying for God's healing for Ewan, and strength for you and your husband.

Nikki said...

This post made me sick :( I know you've heard "I'm sorry" a billion times but I don't know what else to say. Nothing seems quite appropriate, or strong enough. That little angle you have is something special. He's such a fighter. God has given you miracles up to this point and I'm praying for more.

I hope with everything that I am that you don't have to say goodbye to Ewan. I am PRAYING so hard that you get to take him home and love on him like so many other parents do.

This trial is anything but fair. I won't say it was given to you because you can handle it (i'm told that a lot and I hate it) but there must be something awfully special in you and James that the Lord saw fit to send this little guy to you-even if it is for a short while. You are truly righteous parents.

Love and hugs
Nikki

ANewKindOfPerfect said...

Praying for a miracle!!

melifaif said...

And miracles DO happen everyday....keep the faith!!!!! Many contunued blessings...

Katie said...

Wow. I don't even know what to say. I'm sure you're completely exhausted from this rollercoaster ride. It was so wonderful talking to you yesterday and I was giddy all day over this step in Ewan's recovery. The joy and relief in your voice was evident. I'm just so sorry that this step back had to be taken.

I thought maybe this scripture may be of help for you right now...
"Dear friends, do no be surprised at the painful trial you are suffering, as though something strange were happening to you. But rejoice that you participate in the sufferings of Christ, so that you may be overjoyed when his glory is revealed." 1st Peter 12-13

Even in our suffering, we are to praise God and after talking to you yesterday, I know you are doing exactly that, in both the ups and downs of this journey. Your faith is so inspring and I think you're an awesome heart mom. You've really been through the works these past couple of weeks.

Praying for you, James and of course, Ewan for peace, comfort and strength to endure this. Praying this rest on ECMO will give his little PA's just the time they need to start working. Praying there are options for Ewan from here too.

God is so good and miracles happen every day. You know this first hand already and have given every victory to our Heavenly Father. Your story is impacting so many lives and bringing him Glory. Maybe you can find some comfort through this.

Hang in there and know you're in our hearts. Praying, praying, praying.

Heart Hugs...

Lisa said...

praying for a miracle indeed... and for peace to surround and hold you all.

Anonymous said...

Sending you strength and prayers for a miracle!

One Happy Heart Family said...

Sending lots of love, strength, prayers and support!! Nothing is ever "easy" in this heart world, but I know God know's he sent you this precious little spirit for a reason. Our trials are never fun and sometimes seem impossible, but some how we all make it through in our own unique way. It's has been so difficult for me to accept the fact that my baby girl is very very heart sick. You have no idea looking at that perfect little body on the outside, which is so sick on the inside!!! Please know we are praying and thinking about your family!! Miracles do happen. Lots of heart Love xoxoxo

Chrissie

terri said...

"Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff, they comfort me."

I'm praying right now for God to be so close that you feel his breath and the pressure of his touch on your skin, and I'm praying that for Ewan too. My heart is broken for all of you.

Jesus, take care of my friends.

Anonymous said...

So sorry. Hoping and praying for that miracle. Love from Kansas - Stacy & Emily.

Anonymous said...

Hello. I heard about your story from a friend on facebook. My heart breaks for all of you. I'll keep all of you in my prayers. I was pregnant with quads, and I lost my twin girls to TTTS and their twin brothers born at 28 weeks are in the NICU now. I do understand a little bit what you are going through and I hope and pray for all of you.

With lots of love, prayer and hope,
Maria

Anonymous said...

You have a miracle - Ewan. Remember, miracles happen every single moment. Hold on to that with all the strength you have.

We will be praying for you

Shannon Egan

Anonymous said...

Thanks for sharing your story and your beautiful photos on a blog. I hope you feel the strength of an internet community, as we collectively hold on to the miracle.

Wishing you all the very, very best.

Carolina Carters said...

Praying without ceasing...

Princess in a Hoodie said...

I am so sorry to hear this. May our
Lord be with you. Know that this little miracle is reaching and touching people beyond what you may be able to see. I pray for a peach that passes all understanding to fall upon you. May the Lord guide you and all who are involved. His arms are wrapped around you and he is always with you. Praying for you from Indiana.

Anonymous said...

You are such a strong woman to be able to share your story, and in such an eloquent manner! I found out about baby Ewan through Plumb on FB, and I am awestruck by your dedication, love, and courage as you face this challenge. Tears come to my eyes as I read your posts, as you relate your feelings so genuinely. I am constantly thinking of you and your family. Lots of prayers, coming to you from Connecticut.

meg said...

praying in idaho too.
God is so big. praying he chooses to heal ewan and give you the strength, peace and comfort in this time of need.
so many praying all over the world.
-megan and eric brewer

www.fivebrewers.blogspot.com

liz houser photography said...

oh kirsten, my heart breaks open for you guys! what an incredibly difficult decision. i pray god will give you and the doctors wisdom, peace and an amazing amount of grace and mercy. may you see his unending love and blessings for you and your family thru this enormous challenge. god bless!

liz houser photography said...

oh kirsten, my heart breaks open for you guys! what an incredibly difficult decision. i pray god will give you and the doctors wisdom, peace and an amazing amount of grace and mercy. may you see his unending love and blessings for you and your family thru this enormous challenge. god bless!

Anonymous said...

Praying in Alberta, Canada.

Melissa said...

What a fighter your baby son is.. So strong. Its unbelievable what these little heart warriors are capable of. Thinking of you and Ewan and praying hard for you all.

Heart Hugs
Melissa

Anonymous said...

You are in my thoughts and prayers. miracles happen every day, so don't give up...we are all praying for you and Ewan.

ilse said...

Praying for Baby Ewan - for a miracle - for God given wisdom to you and the doctors - and for comfort.

Love you dear friends

Anonymous said...

From THE HUXLEY FAMILY our thought's and prayers will be with your family. No Person or family should ever have to carry a burden or decision that heavy. May God Be with your family and baby!! I'm so sorry. THE HUXLEY'S AND NORTH CAROLINA ARE PRAYING FOR YOU!!

Jess said...

Praying for you and Ewan. My youngest daughter is a CHD survivor, although a very mild CHD as compared to others. My heart of prayer is bent toward you and your husband in this time. I pray for the step by step miracles that lead Ewan home, to his bedroom, to a long life and testimony of the Glory of God. Father please stand with this family, stretch out your healing hand time and time again, continue to amaze and astound doctors. Father touch these parents with peace and allow a healing that bring more Glory and Praise to you. Thank you Jesus for all you are doing. Amen.

Heart Hugs,
Jess and Madie

Jaymi said...

Sending much love and prayers for Ewan. May your faith and strength continue to help you through this time. Your family is in my prayers.

Chrissie said...

Tears stinging my eyes as I read this. Praying and believing with you for this miracle, and for strength and the ability to find joy in the midst of this situation.

KoryO said...

Ewan, I hope you can find the strength to pull through this. I'll be keeping you in my prayers, little man.

Kristin said...

You are all in my thoughts and prayers during this time. May God's love surround you, comfort you and give you strength.

Anonymous said...

Holding onto hope...God please grant your mercy upon Ewan. Show us your devine power. We pray today for a miracle.

Judi Dalton said...

Thinking of this Jars of Clay song, and praying for you all...

The Valley Song

You have led me to the sadness
I have carried this pain
On a back bruised, nearly broken
I'm crying out to You

(Chorus)
I will sing of Your mercy
That leads me through valleys of sorrow
To rivers of joy

When death like a Gypsy
Comes to steal what I love
I will still look to the heavens
I will still seek Your face

But I fear you aren't listening
Because there are no words
Just the stillness and the hunger
For a faith that assures

Alleluia, alleluia
Alleluia, alleluia

While we wait for rescue
With our eyes tightly shut
Face to the ground using our hands
To cover the fatal cut

And though the pain is an ocean
Tossing us around, around, around
You have calmed greater waters
Higher mountains have come down


Alleluia, alleluia
Alleluia, alleluia

Oh, Lord sing of Your mercy,
Mercy
Your mercy

Kimberley said...

Such a sweet baby and I'm praying for a complete healing!!!

Amy and Aaron said...

We will pray for a miracle. And, we will pray that the decision is clear for you - and that you have peace regarding that decision. No parent should ever have to make those choices, but we've been there, too.

Amie said...

Praying without ceasing for your little man's heart and yours as well. I was alerted to your blog via the Torrey community, each story of grace is different and reading and praying has often brought to mind memories of our unexpected journey with our newborn, from the highs and lows of nicu to for us, awaiting the day when we will be reunited with our Savior. I wanted to echo your prayers on here, and also offer my support in any way (we live in the greater seattle area and have spent many hours in evergreen and childrens). The words I have for you is that God is big enough. Prayers

Amie

michele pauline said...

Stay positive!! He is so lucky to have you as his mommy, I just starting following your blog and it inspired me to start one. My son is 2 1/2 years old with complex CHD's, he's a strong willed boy and I believe all heart babies are fighters. You stay strong mama, God will guide you. BIG HEART hugs from Portland, Oregon.

Rebecca said...

My heart and prayers go out to your sweet family. May God grant you a miracle and heal your sweet baby's body. I know without a doubt that with God anything is possible. Much love to you all.

Wayne and Sue Rasmussen said...

We are continuing to pray for baby Ewan, as well as for you, Kirsten and James. You don't know us, but our parents' hearts are hurting for you. The only and best thing we can do is intercede for you in prayer.
We often don't understand what God allows us to go through, but we know he is faithful and trustworthy. We are praying for a miracle for Ewan, and for God's wisdom and peace for you.

HennHouse said...

So that is my Eliezer prayer today... a miracle.

Love you.

Anonymous said...

Prayers from Mobile, Alabama....our heart is breaking for you and your sweet baby. May our merciful God hold you all in the palm of his hands.
The Cross Family
Mobile, AL

Caroline said...

Read your blog through Wablarme. Praying for a miracle. Thoughts are with you & your husband through this difficult time.

Anonymous said...

Lord praying for Ewan and his family right now. I pray that You will provide wisdom to his family and his medical team. Please don't let them give up on this precious little one. Please give Ewan the strength to keep fighting and the breaths he needs. It would be wonderful to take him off the ECMO. It would be wonderful if the doctors knew what is wrong. If the doctors at the hospital don't know, please bring in the right people at the right time. A doctor who happens to be visiting. The right research article. The right idea. The right phone call. Whatever it takes Lord, we plead with you to spare little Ewan's life for Your greater glory. We know you can do all this and more in Your son's precious name.

Amen.
~Dana

Anonymous said...

Your little guy is a fighter and loves you. You will do your best by him and he knows it. My thoughts and prayers are with you during this difficult time. Your lives have been touched by a wondrous and gentle angel regardless of how little or long of a time you have, they are memories that will never be forgotten and forever cherished.

Anonymous said...

I am praying for you all from Morgan Georgia. My God heal your sweet baby.

Bonnie said...

I am praying for a miracle! God Bless you!

Anonymous said...

I don't know you personally, but I have been following your blog. I've been praying hard for little Ewan! My heart is hurting for you. I'm not a mother yet so I can't begin to understand the grief that you are feeling right now, but just know that God loves you and has a plan for you. He will protect that sweet, wonderful baby. Stay strong!

~Beth

Anonymous said...

"Where there is great love, there are always Miracles."

By reading all of the posts made on your page, there is no doubt about the amount of love there is for Ewan and your family. Our prayer for you is for you to feel God's love and presence during this trying and uncertain time.

Much love and prayers,
Lisa

Doorless said...

I know how much you love your little baby and know that God will help you to make the best decision for your sweet child.
Praying

Anonymous said...

Asking the Virgin Mary to please intervene and ask Jesus to help Ewan. Amen.

qwertycris said...

We are praying for you! Please reach out to us via our blog (mirabelalice.blogspot.com) if there's anything we can do. We're local, so we can bring food. ;)

Kristen Gilfillan said...

Praying, Kirsten. Praying.

Oh that it may go well with you,
along this weary road
Dare not to fight
against the Christ
who pleads to bear your load.

Oh that there may be joy ahead,
mid wicked, fierce frustrations
And in despair,
may you find cheer,
and strength for celebration.

Oh that there may be peace in you
in body, spirit, mind:
The waves be still,
a cure for ill,
from His hand on you, so kind.

Oh that the healing will go on,
by Father, Spirit, Son.
So breathe Him in
be born again
And be, by His love, undone.

Pam Williams said...

Reading of Ewan's struggle and yours and praying. Read about this just now on a friend's page. May the God of peace and wisdom surround your hearts and minds. His yoke is easy and His burden is light. Let him carry you now in His arms. He can be trusted in the most dire circumstances. In Him, Pam Williams

Anonymous said...

I have seen the Lord heal our friends boy with the same heart condition. The doctors said that they couldnt help him, but the Lord could. He is two now, and completely healed. The Lord almighty is powerful, and capable.