Brady Update 2

Hi all- if you have gotten any updates from me today, I've probably cut and paste this message-

Earlier today Brady's Blood pressure was low so there was less oxygen going to his Brain and extremities. His lungs are starting to clear up, but there is still a significant amount of "fluff" clouding up the xrays.

He isn't peeing even though they have him hooked up to major league fluids so the thought is that the low BP is affecting urine production, so he is hooked up to a catheter.

Had a pretty severe fever all night. Put him on ice packs and this inflatable cold air bed, which has really helped- he dropped from 103 degrees to 97!


They did a blood transfusion to get more oxygenated blood into his system. He has responded well to that; his temp is down, blood pressure is up and the percentage of oxygen he is receiving from a machine has decreased from 60% to 40%.


A hard day that was made better by prayers, messages of encouragement and reading scripture. It's not easy to see him hooked up to everything but its wonderful to hear that he is making improvements...Brady is NOT a quitter!

We are learning to praise God in all circumstances, and I realize so often during our days that we are so fortunate to be children of a God who controls huge things like Brady's health, to small things like the delicious coffee my wonderful sister-in-law brought us.

Thank you to our prayer warriors.

Xoxo

Psalm 116

¹ I love the Lord, for he heard my voice;
    he heard my cry for mercy.
² Because he turned his ear to me,
    I will call on him as long as I live.

³ The cords of death entangled me,
    the anguish of the grave came over me;
    I was overcome by distress and sorrow.
⁴ Then I called on the name of the Lord:
    “Lord, save me!”

⁵ The Lord is gracious and righteous;
    our God is full of compassion.
⁶ The Lord protects the unwary;
    when I was brought low, he saved me.

⁷ Return to your rest, my soul,
    for the Lord has been good to you.

⁸ For you, Lord, have delivered me from death,
    my eyes from tears,
    my feet from stumbling,
⁹ that I may walk before the Lord
    in the land of the living.

¹⁰ I trusted in the Lord when I said,
    “I am greatly afflicted”;
¹¹ in my alarm I said,
    “Everyone is a liar.”

¹² What shall I return to the Lord
    for all his goodness to me?

¹³ I will lift up the cup of salvation
    and call on the name of the Lord.
¹⁴ I will fulfill my vows to the Lord
    in the presence of all his people.

¹⁵ Precious in the sight of the Lord
    is the death of his faithful servants.
¹⁶ Truly I am your servant, Lord;
    I serve you just as my mother did;
    you have freed me from my chains.

¹⁷ I will sacrifice a thank offering to you
    and call on the name of the Lord.
¹⁸ I will fulfill my vows to the Lord
    in the presence of all his people,
¹⁹ in the courts of the house of the Lord—
    in your midst, Jerusalem.

Praise the Lord.^[a]

Footnotes:

1. Psalm 116:19 Hebrew Hallelu Yah

Helpless

There is nothing that raises your awareness of how helpless we are as humans than having a baby.  It is crazy (and exhausting) to have a baby depending on your for EVERYTHING from eating, sleeping, staying warm and going to the bathroom. There was a point where each of us couldn't do any of that on our own.

Brady is in his second stay at Lurie Children's hospital in downtown Chicago, this time for a severe bout of RSV.  He's currently laying on his hospital bed while a team of doctors has tried to insert a catheter line for almost 3 hours.  He's being sedated and immobilized, so right now he's not aware of any of it.  I however, am acutely aware of the breathing tube he has in his nose and mouth, the various lines that are running through his veins, arteries and wherever else they are sticking needles into him.  And last night when Brad stayed up with him, he was definitely aware of his crying from his pain and discomfort.

Just knocked out, catching up on some ZZZ's

Talk about being helpless.  There is absolutely nothing more I can do for my son then be here to support him.  Meanwhile, he's scared, in pain, and sick.  I wish that I could explain to him that it would pass in a few days, but that it sucks for now, but he's 8 months old- it doesn't work that way.  It's hard to feel so dependent on doctors to take care of my son.  Then I remember that Brady belongs to a God who is so much bigger, and who has all the control over this situation!  I can't sit and wring my hands, wondering what I can do.  The most that I can do is pray, and trust that God is working through this situation the same way that he works through our good situations.

I've listened to some songs to help bring a sense of normalcy to this sterile and cold place, and a song by Chris Rice has struck a chord (ahem, ahem)with me.

Sometimes the way is lonely 
And steep and filled with pain 
So if your sky is dark and pours the rain, then 
Cry to Jesus 
Cry to Jesus 
Cry to Jesus and live! 

In this time, your prayers and love mean more to us than you know.  It is absolutely the most any of us can do!  They sustain us, they give us a sense of peace, they give knowledge and insight to the doctors.

O, and when the love spills over 
And music fills the night 
And when you can't contain your joy inside, then 
Dance for Jesus 
Dance for Jesus 
Dance for Jesus and live! 


Through all of this, we thank God that we live in a city where we have access to excellent healthcare and a wonderful facility.  How wonderful is that?

We'll keep you posted!

Growth

What a good sitter!

One of the most astonishing things about having a child is watching his development.  We have met with a dozen specialists since Brady's birth, all of them with their own opinion about how he's going to grow and mature.  For the most part, they've all told us that he will develop slower than "normal".  Being new parents, we have no idea what that is supposed to be like, so we have just been taking everything as it's come!  Brady is in physical therapy with one of the great pediatric therapists that works for the same company as I do (another blessing God has given us, but that's a different story).  We go once a week and basically play.  The playing is intentional- it's supposed to help him recognize how his body works to help him perform tasks like rolling over, propping up on his hands, sitting up and crawling (this is the latest project...so far he's just kind of looking like an inch worm).  The funny thing about this is, Brady is doing just fine!  He can sit up for a while on his own, he loves rolling all over the room to get what he wants, and is so happy to just interact with the people around him.  He's meeting all of his "major milestones" at a pretty "normal" pace!

I've come to be aware of how intentional our spiritual growth must be as well.   Being raised in the church tends to mean that you know all the right answers, or know the right things to do, and yet I think it also leads us to be the most vulnerable to being stale.

We work so hard at getting our bodies in shape, eating right, improving our minds, getting promotions at our jobs, but do we spend time with God?  Do we take the time to get to know who God is through his Word?  Do we say that we want to follow Jesus and learn to love as he loves, and just assume that we know what that means?

I have asked myself those questions for months and I haven't had the courage to really face what action would look like.  It means re-allocating time, when I feel like that's at a premium.  I would need to change what I take in and what I give out.  I would wrestle with my relationships, because when God is first, it changes all of them.

"How big is Brady?.... Sooooo big!"

Most of the time, it's more comfortable to stay laying on my back, playing with toys that are in reach and not learning any new skills.  We haven't been created to be that way though, we have been created in the image of a perfect God, and while we can't be perfect, we can always improve our relationship with Him.  It means giving up what seems to be a lot, but it ends up being nothing at all comparatively. I'm no where NEAR having this figured out, but I had to start somewhere.  There is a call on our lives to be about more than just our outfits, our jobs, our bodies, our social standing... none of that matters at the end of the day.  The impact that I can have for God on my community, on my friendships and on my family is worth so much more than that, and worth any "sacrifice" I may make.  That's what I stand on, and why I keep working at it.  The alternative just leaves a bad taste in my mouth.

Refocusing Our Lenses

At the start of a new year, our culture takes to self-reflection and betterment.  Resolutions to lose weight, read more, have new relationships take a sudden prominence in our life.  And yet, ask anyone who is a consistent member at a gym- February hits, and the busy rush of newbies that had flooded the gym has dwindled away.  It isn't until it's beach season that there is a re-focus on getting in shape.

Brady and I at the beach this summer... beach bod...get it?

Early today, I heard a message on WMBI (Moody Bible Institute's radio network) by Ravi Zacharias (who has a really cool story if you have time to read it) that illustrated so clearly the importance of keeping our focus on God's will for our lives.  Using King Saul as an example, he showed how Israel's first (and Zachrias says could've been arguably their best) king allowed his humanity to overcome his desire to follow God.  There were moments of re-focusing where Samuel helped Saul see the err of his ways, but he ultimately died the way he had lived- for (and by) himself.

Brady has been a true re-focusing for Brad and I.  The providence of God in my pregnancy and in our life since Brady's birth has been immense, beyond what we could have even imagined... The way that Brady is already exceeding expectations the world has set for him... Our recognition of our limited abilities to do this parenting thing- we're responsible for a human life! What?!  We sure couldn't do this without the human and spiritual support God places in our lives.

Because of all of these (and many more, believe me!) realities in our lives, we have felt called to adjust the lens with which we see the world, and see not through eyes that serve two masters, but ones that are continuously humbled and seeking how to serve God.  Not just saying that we are followers of Christ, but actually living it.  As Christ said in the Sermon on the Mount, "No one can serve two masters. Either he will hate one and love the other, or he will be devoted to one and despise the other." (Matt. 6:24a) We cannot keep seeking validation for our lives in the way that the world sees us, because we now see our lives through a re-focused lens- one that is on God.

It's amazing how Brady keeps changing our lives, and we can't wait to see how else it keeps evolving!

Happy New Year!

The season of Advent- growth in waiting.

Although being hit with the news of Brady's Down syndrome diagnosis wasn't something we expected, the next conversation was harder for me, personally.  The lead pediatrician from the hospital where he was born came in to talk with us, presumably about the DS.  He told us that they were going to perform an Echocardiogram, which is an image scan of the heart (kind of like an ultrasound), on Brady that afternoon.  He said that many babies with DS also have heart issues and so they wanted to rule out any abnormalities before they could send us home.  I wasn't too concerned, after all, my OB-GYN hadn't heard anything alarming during my pre-natal visits, and the delivering pediatrician hadn't heard anything after Brady was born.  So, they took Brady, I got to nap, and we got him back an hour later.

The pediatrician came back in the room a few hours later to tell us that he needed to talk with us alone (we had a pretty big crowd that had to come to welcome Brady!).  He told us that it appeared that Brady had an atrial septic disorder (ASD), which put simply meant he has a hole in his heart between the top two chambers.  This disrupts the amount of oxygenated blood that could go through his body.  They were going to be transporting Brady to Lurie Children's Hospital where their team of neonatal cardiologists could better diagnose and care for him.

Now that scared me.  Brad and I sent our friends home while they wheeled Brady to ICU, then we prayed and called our parents.  There wasn't anything else we could do- nothing else we knew to do.  So we prayed and we waited.

We were at Lurie Children's for ten days where a wonderful team of doctors and nurses taught us more about what was going on with Brady - they confirmed the ASD and told us that he also has pulmonary hypertension- and we waited.  They showed us how to care for him, what warning signs to look for, how to start therapy services for him- and we waited.  We learned what it meant to rely on each other and God as we just wanted our baby to be well enough to come home and begin our life- that was worth waiting for!

In this season of Advent, we are taught about waiting for the Christ- child, and waiting on His return.  When I hear about things like the elementary school shooting in Connecticut, I cry out, just pleading that Christ would come again soon and heal this broken world.  The waiting is the worst part, and yet it's the part that teaches us the most about who we are called to be.  For Brad and I, the waiting in the hospital (and now the waiting on Brady's heart surgery to fix the problem) has been the most agonizing part- and the most beneficial.  We have learned how to care for a baby with special needs, and how even though all these things are going on, he's still just our baby that we need to grow into a man of God.  There is growth and healing in waiting, we just have to step back and see things through the eyes of what God is doing.

Holding on Tight

This week has been a reminder of how easy it is to rest in  the arms of God, yet, it seems that we struggle against that... we fight with our human emotions and our logic.   As Brad and I have come to find out, God really doesn't ever give you any more than you can handle, because you have to learn to lean on His grace, trusting that He'll carry you through times of struggle.

We got through our pregnancy without much fuss, and on the morning on June 10th, I woke up at three o'clock in the morning with what I though was just stomach pain.  Mind you, I'd made cupcakes the night before and had eaten quite a few, so I just assumed it was that.  An hour of tossing and turning later and I knew that wasn't the case.

Fast forward 10 hours and some pain medication later, I had this little perfect boy in my arms.

Brady Scott DeJong.  Perfect.

Brad and I were pretty  much in awe that we could have had a hand in creating something so wonderful- he was tiny and cute, with a squished little face, grabby hands and  squinty little eyes... I cried, which I didn't think was possible.  

Then the pediatrician on call came in and told us that they needed to talk to us about some of the things they noticed about Brady.  He had almond shaped eyes, and extra skin on the back of his neck.  Two of his toes were a little webbed.  All of these things, they said, were indicative of babies with Down syndrome, a genetic condition.  They couldn't be sure, but they were going to run tests to confirm, and, did we have any questions?

It was a whammy.  We were both exhausted, all I wanted to do was to be left alone with our little baby!  This news didn't really phase me then... I just thought, "oh well, what can you do about it?  It is what it is!  He's still here, he's still breathing, he's still so freaking cute!"  Brad will tell you that it hit him pretty hard.  He went into the hall to get his parents and broke down when he told them what the doctors had just relayed to us.  His dad just gave him a big hug and did what dads do best- stand strong and hold on tight.

That afternoon and evening, we prayed hard.  We prayed  that we would find peace, that 

the doctors would provide answers, and that God would continue to guide this journey.

While we prayed, we held on to our little boy, who still had his squishy face, hands that squeezed  and little squinty eyes that he was not ready to open up.  Now we learned he had Down syndrome.  

And we still thought he was perfect.

That in itself was all that we needed to get through the night, and I know God knew that.

He gives us  the peace we need in the moment, and then the strength to sustain us

for the long haul.  Brad and I are learning how great that strength and peace can be as 

we come to terms with  what it means to be parents of a  child, much less a child with special needs.

Praise be to God for His faithfulness in our lives, and for the way he allows us to rest in his arms daily.