30 September 2010

Giving Thanks Like Eliezer

The man bowed his head and worshipped the Lord and said, ‘Blessed be the Lord, the God of my master Abraham, who has not forsaken his steadfast love and his faithfulness towards my master. As for me, the Lord has led me on the way to the house of my master’s kin.’
Genesis 24:26-27 (NRSV)

No more ECMO!

Ewan Eliezer lived up to his name today. Today we saw God's grace (Ewan) at work, and today we saw first-hand that indeed, God is my help (Eliezer). We knew his name was no accident.

Anyone who doesn't believe this day lives up to the fullest definition of "miracle" needs to have been here the past 12 days. Repeated echocardiograms and other tests showed that Ewan has one of the severest forms of Tetralogy of Fallot that they've ever dared to operate on. If his pulmonary arteries had been any smaller, we probably would have heard the dreaded words: there is nothing more we can do. Then there was the scary day in the cath lab -- the day where our sweet boy was sent into emergency surgery and we were told he had about a 30% chance of not making it out alive.

That night will be emblazoned in my memory forever. I was protected by such an astounding peace, but remember with chills in my own blood the repeated updates from the surgeons: their faces getting longer with every update, even the most optimistic amongst them losing hope as the hours wore on. I will never forget meeting with Dr. P just after four in the morning and the giddy look on his face, the elation in his voice. He couldn't believe it either.

We came out on ECMO. This would allow Ewan's heart and lungs to rest, allowing him to stabilize and get stronger. ECMO would buy us time, but it would be a priority to get off as soon as it was safe.

Make no mistake: ECMO was lifesaving for our son. But using it is a delicate balance -- there are risks with ECMO too, especially the longer a patient is on it. After James grilled our ECMO specialist from yesterday (every day that the machine was in there, there was a dedicated specialist who ran the machine), we learned that the primary risk is bleeding. Blood thinners have to be added because of the risk of clots forming. Secondarily, the machine isn't able to mimic the rhythmic pulsations of the heart and this can result in organ failure. Thirdly, the risk of clots forming means that there is a risk of a clot going to the brain or lungs, resulting in stroke or pulmonary embolism.

As much as ECMO did for Ewan and for us, eliminating dependence on the machine was priority number one in Ewan's road to recovery.

James and I waited outside the room during the trial off today. I stood outside the room, clinging to Ewan's stuffed giraffe in one arm and furiously clinging to my rosary in the other. I prayed and prayed and prayed as they clamped the machine. Because our first trial off failed so quickly and miserably, I just held my breath. I rocked from side to side on my feet as I watched the monitors. As far as the oxygen saturation levels went (you'll also see me refer to these as "sat levels"), we wanted to land in the mid-70s to low 80s. This is a good place to be, given Ewan's anatomy.

And so we watched as sat levels declined very slowly, flirting around in the mid 80s, hanging around 80 for awhile. His heart rate and blood pressure remained stable. Even though we all had prayed and hoped for this, there was a part of me that couldn't believe what I was seeing. My eyes darted back and forth from the monitor to the clock. As the minutes ticked by, we didn't see Ewan's sat level dip below 75. That was as low as it got. Thirty minutes went by and he was doing just fine. Despite sedation, his eyes were open and he was looking around the room as if to say, "What's the big deal?"

They did an echocardiogram after the machine was clamped to see how blood was moving through the heart. A doctor came out and introduced himself to me and told me that blood was moving well through the shunt, that his heart was pumping well, and that the results were (quite frankly) surprising to him. I didn't think it would go this well! he said, obviously pleased with how Ewan was holding his own.

From a subjective point of view, it was pretty clear that being clamped off of the ECMO wasn't stressing him out. He was relaxed and in no pain, just lying in his bed and looking around.

After almost forty minutes or so of being clamped off of the ECMO, the surgeon was called in. She looked at the monitors and asked how long we had been off of ECMO. Our doctor reported it had been over half an hour. She was pleased with his sat levels and agreed: let's take him off of ECMO.

Those were the words I was longing to hear.

So we called our families and closest friends, all of them rejoicing with us, all of their hearts filled with joy. This is just one step in the long road to bringing Ewan home one day, but it's a big one. Following the surgery to remove the canulas today, both of Ewan's surgeons affirmed: this is a big and significant step in Ewan's recovery. This is one step, but it's a big one. It's a hugely important one.

And so we went to our room, and just like Eliezer did when his prayer was answered in the affirmative, we knelt, fell on our faces, and gave thanks to God. I know that not everyone that reads this blog or who cares about Ewan believes as we do. I'm really not here to try and convert anyone or hit anyone over the head with anything. But having walked this path for nearly two weeks now, I have to stand up and affirm that all the glory goes to God for this. It is simply amazing what these doctors and surgeons can do -- Lord knows we would have lost our son without them. But as severe as Ewan's case is -- as hopeless as it looked time and again -- sheer, dumb luck is not adequate to explain why Ewan is still here. It just isn't. This is a miracle in the fullest, most robust sense of the word.

Ewan is still here, and so we give thanks just like Eliezer did: on our knees, on our faces -- humbled and grateful beyond measure. God has heard and smiled upon our prayers, Team.

Even as we give thanks, we have a new Eliezer prayer, and it is simply for this: stability. Ewan's chest is still open as the doctors and surgeons want to ensure that Ewan remains stable before they close up his chest. Today, he is resting and recuperating. They are not being aggressive with him in any way, and he is still holding his own. Thanks be to God! Once he is stable for a few days, surgeons will look at closing up his chest.

After briefly acquainting us with the steps coming in the future, our doctor said: today Ewan rests, and we will celebrate. Amen to that! There are new steps and challenges that wait for us in the near future, but for now I invite you to give humble thanks with us, to rejoice with us: for this son of ours is alive and off of ECMO!!


terri said...

Thank God!!! I'm so elated to hear that Ewan is off ECMO. What a relief to see him less tethered than before. Praying with you that very soon he'll be cooing in your arms. I'm especially praying that James will be able to hold him soon. Bondye bon. (God is good)

Wayne and Sue Rasmussen said...

We are praising God with you! We will continue to pray for stability.

Shay said...

wow...our God is powerful and miraculous!!! I am celebrating and rejoicing with you!!! tears of joy welled up in my eyes as I read this. praying for stability. Thank you God for hearing our prayers!

Wodzisz Family said...

Miracles abound! Thank you God. I am so happy to read he is off ECMO and resting comfortably tonight. I will pray for stability.

Nadine said...

Praise GOD! He is so good! It is such a blessing to be able to watch him work miracles in baby Ewan's life! I hope and pray someday his case will be an inspiration to others. Hope for families who face such a scary thing and motivation for surgeons to give it all they got and not give up on these precious little ones! Nothing is impossible with GOD! This made my day and I am so greatful! Much love my friend! We're rejoycing and giving thanks with you! Praying for more miracles for Ewan! Go baby Ewan, you are one tough cookie and we're so proud!!

Unknown said...

AMAZING!!! The power of prayer works in mysterious & wonderous ways. Congrats on this monumentous day :)) Your little man is in my thoughts & prayers.

Anonymous said...

Praise the Lord!@!@ My children have been praying right along with me for Ewan's steps toward full restoration of health.

Krista Phillips said...

Found your blog through a link on another... My Annabelle was on emergency ECMO, so I TOTALLY know the feeling of elation when they get off! Will add little Ewan to my prayers as well!!!

It is amazing how as much as I can't stand to see the machines my baby is on and want to stomp my feet at setbacks that put my baby back on them, I also want to kiss those same machines and doctor's who put her on because I know God is using them in a very might way, and I am OH so thankful!!

Anonymous said...

I have been following your story since I saw it linked on Sawyer's heart Facebook page. I am so happy that Ewan is doing better....he is such a beautiful child.

Dana Marie said...

I'm also following from the link from Sawyer's Heart.
PRAISE GOD PRAISE GOD PRAISE GOD for answered prayers and miracles for little Ewan!

Heather said...

I was brought to your blog through your friend Melissa Elsner who I was blessed to meet in person this year. I have been following Ewan's progress since his birth and yes, God is working through Ewan. What a tremendous miracle you have on your hands. God bless you all and continue to watch over Ewan. I will continue to follow Ewan's progress and pray your prayers as well as my own.

Anonymous said...

Kirsten, I am so happy to read this. My 4 year old and my 2 1/2 year old who has a CHD (TA) have been including Ewan in their prayers at night. Rejoice in the small steps (although coming off ECMO is a BIG step in the Heart Dance) hold on to your faith and just be amazed at the miracle of Ewan.

You are truly blessed.

Shannon Egan

Molly said...

I have been refreshing your Twitter and Blog over and over today hoping to hear this news... as a Heart Mommy myself, I know how hard this is. Bless you and your husband and that precious Ewan - may you all give thanks and sleep well and have peace tonight.

Jennifer A. said...

I praise God with you, for He is a miracle-working God. There's nothing too hard for God, and there's nothing impossible with Him.

Anonymous said...

Awesome, awesome news! The elation you feel when your child survives ECMO when they shouldn't is so difficult to put into words, but you did a very good job of doing that! We're so happy to hear of this huge, huge step. Thank you Lord for allowing Ewan this huge victory! Thank you for the update. I'm so thrilled to hear this...


Rachel said...

Praising the Lord with you all. Praying for stability and rest for all three of you.
Rachel in TN

Amber said...

SO SO SO happy to hear this! Still keeping you all in prayer. This is just so amazing!

Emily (Laundry and Lullabies) said...

Rejoicing and thanking God!

Anonymous said...

What an answer to prayer - Sarah and I have been following on Facebook all day at work, and praying and praying and rejoicing.
Thanks be to God for this little man and his progress.

Anonymous said...

Rejoicing with you and praying peace past understanding for Ewan, Mother and Father! How Great is our God? How much more He will do in the days and months and years and decades to come in Ewans life!
Ahhhh...Amazing Love He has for us. Rejoicing in the favor and grace of Our God and praying this one through with TEAM - EWAN! Amen and Amen. <3

Anonymous said...

Praise the Lord. I love hearing about these medical miracles that the doctor's cannot explain and it's a blessing to read that you are giving to credit to the One it really belongs to! Continuing to be in prayer for your precious boy.

Anonymous said...

God is good ALL the time! My daughter(HLHS with severe coronary fistulas) is a 2 time survivor of ECMO having spent a total of 23 days on it. She came out of the Norwood on ECMO spent 5 days on it then arrested two days later and put back on. She shouldn't be here either and we were told that there was nothing they could do for her many times. Those same doctors are AMAZED that not only did she survive but she is thriving. She is a beautiful and active 2 1/2 year old little red headed girl. Her life is nothing short of a miracle. God hears us and though He may not give us exactly what we want He gives us exactly what we need. You have a long road yet ahead but just keep putting one foot in front of the other and you'll get there. Celebrate the victories! Praying in IL, Crystal

Kathy said...

Three years ago, on Oct. 1, 2007, our 4-day-old grandson had his first open heart surgery (he has TOF/PA, which was not diagnosed until he turned blue when he was one day old). The day after surgery, he was placed on ECMO. After 8 days, he underwent a second open heart surgery, and came out of the operating room free from ECMO. He had an additional open heart surgery at 11 months, and faces surgery in the future, but for today, he is a happy, healthy, busy three-year-old. Miracles are happening every day - I have been praying for you and will continue to pray for Baby Ewan and your family!

Amy said...

Oh, what good news! Praise God!! What a wonderful little miracle you have!

One day, when Matthew was tiny, sick, hooked to oxygen ... we just couldn't take it anymore being cooped up in the house, so we carefully transferred M. to the portable tank and headed out to dinner. Our waiter was a very handsome, strong, broad and well-built healthy looking teenager, who adored Matthew for a minute, then turned to us and said, "I was that kid." He explained, "I was born only 3 pounds, and was on oxygen and a feeding tube for a long time. I was that baby."

Someday, Ewan will look back at these pictures, and it will be hard to believe he was once "that baby." But, he will have such a testimony to share!

For now, you are doing a beautiful job of sharing your testimony and your story. Thank you.

We will keep praying.

We*heart*Ezra said...

Yay for Ewan!

I've been following his story for the last couple of days from a link on Adventures of a Funky Heart. I'm also a Seattle area heart mom to a 20 month old with Tricuspid Atresia.

Just thought I'd stop by for an update and to let you know (in case you didn't already) that the next meeting of Heart to Heart support group for parents is this Sunday from 2:30-4:30 in the rooms off the cafeteria.

More prayers coming your way for continued improvement and sweet rest!


AmandaDF said...

I found this blog from In this Wonderful life and have been reading for a few days-I'm so happy for you to hear the good news! God is good :-)

Sending lots of prayers your way!

Anonymous said...

Praise God for hearing and answering our prayers!!

Anonymous said...

This is Carrie Johnson's Mom, you may remember us from their wedding, ( Carrie and Evan Johnson) I have been in tears and pounding on the gates of Heaven for you since we learned of Ewan's broken heart; Thank you for sharing YOUR broken hearts with us, too; How beautiful and precious these blogs and photos are, yes the Lord is using you in mighty ways to touch the world!All three of you. I'm praying for a miracle,praying for mercy for each of you, wisdom, and peace that passes all understanding as you seek Christ for decisions that must be made on behalf of your most precious miracle.I'm also praying you both have many special moments with Ewan to tuck into your hearts each day.Every moment of the day, each prayer and each tear are being gathered up by your beloved Lord, you matter to Him and He will never leave you for a split second. God Bless your family