Home Sweet Home

We had a great day! We are settling back into being home. It is hard to describe the feeling of being together as a family again. This has been the most trying experience of our lives thus far. We have had high points where all was going well, and low points where we didn't know if we would ever be together again as a family. Through it all, our God has once again proven Himself faithful. I think it is fair to say that the last few weeks have changed us in a magnitude of ways. Life is precious and we will always remember the One who holds our lives in His hands. My prayer is that through our journey, those around us and those that hear our story may be drawn to the hope we have in Christ.

Psalm 115:1
Not to us, O LORD, not to us, but to your name give glory, for the sake of your steadfast love and your faithfulness!

Sept 1

This little turkey has had a rough day. He is currently on a little oxygen since his sats were low and he was a bit blue. Ezekiel also had his blood drawn today for lab work. He was a trooper, but the nurse and I cried a little bit. We are doing our best to simply enjoy being home, and getting use to all the changes.
He is growing, happy, and healthy... And that is praiseworthy.
"Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable--if anything is excellent or praiseworthy--think about such things." Philippians 4:8

 Sept 2

We had our first follow up appointments this week and the doctors say things are going okay. We would like to see his oxygen levels higher, but he is close to where we would like him to be. He did great with all the tests and even tried to help with his own echocardiogram. Still no outlook on when the next surgery is, but we have appointments set up with the cardiologist and pediatrician every couple weeks, and an in home nurse twice a week for now. Life is getting back to our "different new normal" again, and for that we are thankful. Continue to pray for good oxygen levels and that we can avoid getting sick. Thank you all again for your love and prayers over the last month.

Psalm 127:3
Behold, children are a heritage from the LORD, the fruit of the womb a reward.

Sept 7

Ezekiel & Eden update: They are happy and full of giggles and smiles. Our lives are full of abundant joy. 
Ephesians 3:19-21
To know the love of Christ which surpasses knowledge, that you may be filled up to all the fullness of God. Now to Him who is able to do far more abundantly beyond all that we ask or think, according to his power that works within us, to him be the glory in the church and in Christ Jesus to all generations forever and ever. amen.

Sept 17

Freedom, Homeward Bound

Heading Home! Oh Happy Day.

Evan Clements, A Father's Love

This man has hit his knees in prayer, sought out God's guidance in His word, sang praises for our blessings & through our trials, turned to our family for comfort and joy, learned all about our son's complex heart, stood guard by our son day & night, simply held my hand, and had unwavering faith in our Lord's sovereignty every step of the way. He also found time to buy me and Eden gifts:) I am truly proud to call him mine, and the father of our three children.

Baby Steps Forward

Another step forward! He is back in the room and stable. He is already weaned down much lower on the breathing tube than he had been so far. His saturations are staying high for now and he is already off of the paralytic. Going to take it slow, but he is looking much better than when he started!

Psalm 105:1-3
Oh give thanks to the LORD; call upon his name; make known his deeds among the peoples! Sing to him, sing praises to him; tell of all his wondrous works! Glory in his holy name; let the hearts of those who seek the LORD rejoice!

Aug 19

We had a great night! He is completely off of the nitric oxide (helps his lungs to fill) and his saturations are staying where they need to be. He is stable and they even removed a line from his neck a bit ago. He has been weaned a little more on his oxygen and they will even remove some more stuff today! We are making slow progress but we are moving forward. Continue to pray for smooth weaning off of the oxygen (possible extubation tomorrow) and weaning off of sedation. We continue to trust that God has this and He will never fail!

Psalm 16:8-9
I have set the LORD always before me; because he is at my right hand, I shall not be shaken. 
Therefore my heart is glad, and my whole being rejoices; my flesh also dwells secure.

Aug 20

Life in a hospital does not always go as planned. The plan was to take his breathing tube out today, but due to some bruising of his right lung (they had to push around on it during his second surgery), he is going to have to wait an extra day or two to let it heal and reinflate. Doctors just came in and said everything else looks great and he is doing well. He is over breathing the respirator 2/3 of the time, so he is improving! This is just a very slow process and we continually remind ourselves that he has had 2 heart surgeries and a heart cath done in the last week. Please pray for healing of his lung so he can come off the breathing tube and we can see his smile and hear his cries again. It has been almost 200 hours of no cries, smiles or noises coming from our son and we are ready to see him back soon. Most of all, as always, may God be glorified through everything and us us to impact those around us.

Romans 8:37-39
No, in all these things we are more than conquerors through him who loved us.
For I am sure that neither death nor life, nor angels nor rulers, nor things present nor things to come, nor powers,
nor height nor depth, nor anything else in all creation, will be able to separate us from the love of God in Christ Jesus our Lord.

Aug 21

2nd Surgery

Life is full of defining moments. Moments that change our lives. Moments will affect the way we look at life. This week has been an example of those life defining moments. We received word today that Ezekiel will be headed back to surgery first thing tomorrow morning. He is simply not getting adequate blood flow to his lungs in order to keep his saturations where they need to be. They will go in his right side this time and add another shunt to the same side that was just operated on. This morning I was reminded of a song by Tenth Avenue North that explains much of where we are right now....

I'm Worn
I’m tired, I’m worn
My heart is heavy
From the work it takes
To keep on breathing
I’ve made mistakes
I’ve let my hope fail
My soul feels crushed
By the weight of this world
And I know that You can give me rest
So I cry out with all that I have left

Let me see redemption win
Let me know the struggle ends
That You can mend a heart that’s frail and torn
I wanna know a song can rise
From the ashes of a broken life
And all that’s dead inside can be reborn
‘Cause I’m worn

I know I need
To lift my eyes up
But I’m too weak
Life just won’t let up
And I know that You can give me rest
So I cry out with all that I have left

My prayers are wearing thin
I’m worn
Even before the day begins
I’m worn
I’ve lost my will to fight
I’m worn
So Heaven come and flood my eyes

Yes, all that’s dead inside will be reborn
Though, I’m worn
I’m worn

Please continue to lift our son In prayer. Redemption always wins....

Aug 18

He's off to the operating room.

"The Lord bless you 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"
Numbers 6:24-26

Aug 19

Surgery is going well. Surgeons have placed 1 extra shunt and are working on some other vessels. Everything is stable this far. No timeline on how long it will be. Dr. Eden is having fun with mom and dad.

Aug 19

Things went very well and he is out of surgery! Not sure when he will be back in the room, but we just met with the surgeon. They added another shunt and he is hopeful that his oxygen levels should improve! We are waiting for him to be brought back to the room and stabilized before we can go back in.

1 Chronicles 16:34
"Oh give thanks to the LORD, for he is good; for his steadfast love endures forever!"

Aug 19

Take Heart

Dressed in our Sunday best  Ezekiel seems to be improving slowly. He opened his eyes for us, but when he saw us he tried to cry and got upset. Little victories are what we're looking for today. They hope to have him off the nitric oxide by noon today and then we will begin to wean the oxygen. Thank you all for the overwhelming love and support for our little boy.

John 16:33
"I have said these things to you, that in me you may have peace. In the world you will have tribulation. But take heart; I have overcome the world."

Aug 17

Not much progress today. He is waking up slowly and it is really hard to watch him as he tries to cry but can't. We tried to wean him from the nitric oxide, but he did not handle it well, so he is back on it for now. We have to continue to remind ourselves that this is a slow process and our boy will be healed soon. Through the tough times, we rely on our God, who is our rock and salvation. We did get a chance this evening to get away from the hospital for an hour and have a "date night" 
Pray specifically for this: removal of the nitric oxide soon, peace for him when he wakes up and is scared or anxious, rest for us all. Thank you all for your support during this season of our life.

Romans 8:37-39
No, in all these things we are more than conquerors through him who loved us.
For I am sure that neither death nor life, nor angels nor rulers, nor things present nor things to come, nor powers,
nor height nor depth, nor anything else in all creation, will be able to separate us from the love of God in Christ Jesus our Lord.

Aug 17

Waiting

We had an okay day today. More ups than downs, but not a ton of progress. He is still tolerating the lower oxygen levels for the most part and the doctor did remove the chest drain this morning. They have removed the paralytic medicine and he has briefly opened his eyes for us. We continue to wait and pray for improvement, but it is very much hour to hour around here. We have been blessed by your messages and continued prayers through it all.
Psalm 27:14
Wait for the LORD; be strong, and let your heart take courage; wait for the LORD!

Continuing to Pray

Ezekiel is having a much better day! Oxygen levels are acceptable and they have begun to wean the oxygen! Still a LONG way to go, but it is progress. God uses many instances to encourage us. Today we met this nurse. She is in the military and is being deployed in around 4 days. She is here to learn how to take care of sick kids while she is overseas. She won a raffle at the hospital today and delivered them to us for Elijah and Ezekiel as they grow up! Thank you all for the continued prayers.

Today was a good day! We have made some progress on the ventilator. His oxygen is staying around 70 most of the time. He is stable and his color looks great. It amazes me to see the wisdom and knowledge that the staff have to know how to keep him in balance with everything. The staff nurse actually came in today to ask if she could take a picture because he had the honor of being the kid with the most monitors, pumps, and gizmos running  We are praying for a restful night and a productive day tomorrow. Still a long way to go, but God's mercies never end!

Lamentations 3:22-24
The steadfast love of the LORD never ceases; his mercies never come to an end; they are new every morning; great is your faithfulness. "The LORD is my portion," says my soul, "therefore I will hope in him."