Suffering and the Cross of Jesus

Timothy Keller poses the question below in his talk Suffering:  If God is good, why is there so much evil in the world?

God, why are you allowing evil and suffering to continue? 

Even though the cross (of Jesus) cannot tell you what the answer to that question is.  The cross can tell you what the answer to that question isn't, what it can't be.  It can't be that He doesn't love us.  It can't be that He doesn't care.  We don't know the reason that He allows evil and suffering but the one thing it can't be is that He doesn't care or is remote or is indifferent.  He came and He plunged himself, not just into the fiery furnace of our sufferings, but to infinite degrees beyond anything that we will ever suffer,  because He loves us that much and He hates suffering that much.  He was willing to plunge himself into our sufferings and experience it so that some day he could end all evil without ending us.

Jesus Christ went into the ultimate furnace for you, the only furnace that could really consume you. There is your assurance that He's walking into your personal furnace with you, whether you feel Him or not.  No matter how hot it is for you right now, He's walking next to you.

Please take some time to listen to this talk.  I (Brandon) have listened to it three or four times in the last two years, including yesterday morning while I was out for a jog.  Click the link above to listen to it.
 
JUDE UPDATE:  (by Mandy)

Baby Boy had a pretty good day.  :-)
He had fun visitors, and I was able to sit in bed and hold him.

We are still waiting for his body to rid itself of the infection so that he can have his surgery.  We are no longer just following his white blood cell count (which was pretty much the same today) but also his C-reactive protein level, or CRP.  It is a marker of inflammation which indicates infection.  It has been elevated, but today it went down some.  At this point, they are planning to "strike while the iron is hot."  They are going to perform surgery pretty soon after the levels go down.  They can't wait long due to his vulnerability to further infection.  Please pray that his CRP level as well as his white blood cell count would decrease significantly over the next few days.  Please continue to pray against further infection. And please pray that surgery would be soon.  We have heard that he could have his surgery as early as Monday.

His wound hasn't seemed to leak CSF since they took the drain out.  And, there doesn't seem to be any CSF accumulating either...which is a good thing.  Praise God.  So thankful for that answered prayer.   Please continue to pray that the wound would heal completely.

*  *  *  T  H  A  N  K      Y  O  U  *  *  *

Wait

 

Wait
by Russell Kelfer

Desperately, helplessly, longingly, I cried;
Quietly, patiently, lovingly, God replied.
I pled and I wept for a clue to my fate . . .
And the Master so gently said, "Wait."

"Wait? you say wait?" my indignant reply.
"Lord, I need answers, I need to know why!
Is your hand shortened? Or have you not heard?
By faith I have asked, and I'm claiming your Word. 

"My future and all to which I relate
Hangs in the balance, and you tell me to wait?
I'm needing a 'yes', a go-ahead sign,
Or even a 'no' to which I can resign. 

"You promised, dear Lord, that if we believe,
We need but to ask, and we shall receive.
And Lord I've been asking, and this is my cry:
I'm weary of asking! I need a reply." 

Then quietly, softly, I learned of my fate,
As my Master replied again, "Wait."
So I slumped in my chair, defeated and taut,
And grumbled to God, "So, I'm waiting for what?" 

He seemed then to kneel, and His eyes met with mine . . .
and He tenderly said, "I could give you a sign.
I could shake the heavens and darken the sun.
I could raise the dead and cause mountains to run.

"I could give all you seek and pleased you would be.
You'd have what you want, but you wouldn't know Me.
You'd not know the depth of my love for each saint.
You'd not know the power that I give to the faint.

"You'd not learn to see through clouds of despair;
You'd not learn to trust just by knowing I'm there.
You'd not know the joy of resting in Me
When darkness and silence are all you can see.

"You'd never experience the fullness of love
When the peace of My spirit descends like a dove.
You would know that I give, and I save, for a start,
But you'd not know the depth of the beat of My heart.

"The glow of my comfort late into the night,
The faith that I give when you walk without sight.
The depth that's beyond getting just what you ask
From an infinite God who makes what you have last.

"You'd never know, should your pain quickly flee,
What it means that My grace is sufficient for thee.
Yes, your dearest dreams overnight would come true,
But, oh, the loss, if you missed what I'm doing in you.

"So, be silent, my child, and in time you will see
That the greatest of gifts is to truly know me.
And though oft My answers seem terribly late,
My most precious answer of all is still . . . Wait."

God Demonstrated His Love

This is Brandon tonight.  I wanted to share a few posts in the coming week or two on suffering and our view of God.  I hope you'll be encouraged.  An update on Jude is at the bottom of the post.

I'm beginning to understand that asking God, "Why?" when difficult things happen is an appropriate question to ask, it's just not the first question to ask.

The first question to ask God, at least when we are experiencing suffering, is, "Do you love us/Do you care?"

Life is confusing.  It's messy and difficult much of the time.  In our culture, love is primarily understood as a feeling.  I think this is where we get into problems with God and many times in our romantic relationships as well.  God's love for me cannot be dependent on something I feel today.  My mood and feeling of being loved ebbs and flows with the ups and downs of life.  I've learned not to trust in my feelings of being loved.

I know, with confidence, that I'm loved because God demonstrated to me His love.  He did for me (and you) what we most desperately needed, He laid down His life to forgive us and allow us to become children of God.  He revealed His love for all to see in history, at a specific time and in a specific place.  "But God shows his love for us in that while we were still sinners, Christ died for us (Romans 5:8)."

Knowing intellectually that I'm loved by God didn't change me that much initially.  It's been a long road of internalizing this truth, of allowing it to sink deep into my soul over the years.  Although we are going through intensely difficult things right now, wondering at times why this is happening, I am not wondering if the Lord cares about us.  I'm not confused about His view of us.  I know that His love is strong, real and exactly what we need.  He showed me His love through Christ in the fullest extent a long time ago.  Now that's good news!!

Update

(by Mandy)

His body is still showing signs of infection

(occasional fever, increased white blood cell count, thicker mucus).

Over the last two days all of his tests have been negative!  Praise God.

Please pray for any existing infections to clear up and for protection from new ones.

Infection is the greatest danger for him right now.

Jude got a bigger bed yesterday.

He's more accessible, and I have been able to lie down with him

a few times and nap beside him.

We're feeling a little more tired than normal.

Please pray that we will be refreshed in the coming days.  

We're also still feeling so encouraged and supported by all of you.

Every day, the Lord encourages us in sweet ways through friends and family.

 

Thank you so much!

The Hope of Home

Off and on, I have thought about home.  I have thought about our cat, Millie, and our friends and Jude's room waiting for him.  I have thought about what it will be like to have Caleb and Jude together.  I have thought about how much fun it will be to show off Jude to our friends back home.  The idea of bringing Jude home is something that fills me with excitement. 

It is a cautious excitement, however.  We are well aware that we may never bring him home.  He may never know Millie or play with Caleb or sleep in his bed.  That might not be what the Lord has for him.

We discussed with our doctor today the very real possibility of infection.  As long as there remains the communication between his brain and the outside world (the problem of his wound not healing and his CSF still leaking), then infection is a very dangerous reality.  Until he gets his heart fixed, his lack of nutrition and the medicines he is on will continue to hinder the healing of his wound.  Until he no longer has any infection, they cannot operate on his heart.  And as we wait, the greatest danger to him is infection.  Please continue to pray with us for the healing of his wound, protection from more infection, and heart surgery soon.

As I said, I have thought often about the hope of home...how wonderful it is to think of bringing Jude home.  But, with the awareness that that might never happen, I have been thinking more about the hope of our true Home...the hope of Heaven.

If there is anything that this process has taught us it is that this little boy is not in our hands.  He is in His.  He has never been ours to keep.  He has been entrusted to us for a short time (just as Caleb has been) to care for him and love him and point him to the One who made him...who loves him more than we ever could.  The One who is with him even when we can't be...and the One who gave His only Son for us.  It is my prayer that the Lord uses our little boy to point us all to Himself...and that He would continue to help us trust Him as He unfolds this story.

"Teach us to number our days aright,

that we may gain a heart of wisdom."

Psalm 90:12

"Therefore we do not lose heart. 

Though outwardly we are wasting away,

yet inwardly we are being renewed day by day.

For our light and momentary troubles are achieving for us

an eternal glory that far outweighs them all.

So we fix our eyes not on what is seen, but on what is unseen.

For what is seen is temporary, but what is unseen is eternal."

2 Corinthians 4:16-18

Blessed

We are so blessed.

Friends have made and bought these wristbands to love and support our little guy.

I want to cry just looking at this picture.

We saw lots of people we love today.

And this little guy's cultures are still negative.

His white blood cell count has gone way down as well.
 

Thanks, Lord, for all the sweet blessings of today.

Happy Negative Gram Stain Day!!

We are celebrating tonight.  :-)

The initial results from the gram stain from the spinal tap today were negative.  While the final results from the culture won't be available for another few days, we're so thankful for these initial results.  This means that the infection is limited to the area around his wound (unless something starts showing up on the culture in the next few days). Praise God for this sweet answer to prayer.  Please keep praying.

So, the doctors are now trying to identify what fungus has infected his wound and how to treat it.  Please pray that the lab will correctly identify what it is and that the doctors will correctly determine the best way to treat it.  Please pray as well that it clears up quickly so that he can have his heart surgery.

In other news, Baby Boy had an even more elevated white blood cell count today.  We're thankful that his body is able to produce the cells to fight off infection, but we'd prefer that he not need to.  His lung infection seems to have cleared up.  Praise God.  We definitely weren't expecting that to happen so quickly.

Overall, we had a good day with our little guy...after a pretty intense morning.  The Lord is using these seemingly countless times of waiting to teach us over and over again to trust Him.  He might not be always answering prayer according to how we want Him to, but He is up to something greater than we could come up with.  And, we're going to keep praying and praising.

Thanks, Lord.

Post-Op

Jude went back into the operating room tonight to receive a peritoneal dialysis catheter for his swelling.  It is a temporary solution to get rid of some of his "belly goo," as Brandon calls it.  It will also allow them to put him on dialysis if he needs it during or after his heart surgery.  They estimated that about 300 cc of fluids (about 1 cup) came out immediately.  He looked like a different kid when he got back, and we're praising God for this answer to prayer.

Tonight, we also learned that Jude has a fungal infection near his wound site.  The CSF tested positive for a fungus, and so tomorrow they are going to do a spinal tap to see if it is just a localized infection around his wound or if it is meningitis.  If it is meningitis, he will be treated for at least a month...delaying his heart surgery until after treatment.

Please pray that the fungal infection is outside his brain and not inside his brain.  We should know sometime tomorrow afternoon.

Please pray for Jude's comfort tonight.  He seems to be in pain from the surgery, and he has been harder to sedate lately.

Please pray as well for Cru's fall retreat, High Country Adventure, that is happening this weekend.  Our amazing students and staff are just a few hours north right now, and we got to see some wonderful people today.  We're so thankful for all of them. 

Holding Baby Boy

After Jude's most recent surgery, we were really hesitant to hold him.  Nurses were hesitant to allow us.  It is quite a process and requires a team of people to move him.  And, movement seemed to cause more seepage of his CSF.  This week, however, some friends came to visit and really encouraged us to actively seek to hold him.  We're so grateful they did.  Since then, we have enjoyed wonderful hours with our littlest. 

Today's news:  

• Jude's white blood cell count is high today.  So, they are doing some more tests and waiting on his heart surgery.
• His platelets were low, and so he received a platelet transfusion to make sure he is ready for surgery when the time comes.
• He is probably going to get a peritoneal dialysis catheter to get rid of fluids and relieve swelling.  This could happen during his heart surgery or in a separate, earlier trip to the operating room.
• Jude seemed really sick and uncomfortable yesterday.  We're not sure if it was due to the infection or complications with trying to digest milk.  It was really hard to leave him, and I stayed at the hospital last night.  Today, however, he seemed really comfortable.  He had a much better day. 
• He has had considerably less CSF leakage around the suture line.  We're so grateful for that!

Please pray: 

• for continued wisdom for the doctors as they discuss the best timing for his surgery.
• for healing from his infection. 
• for Jude's swelling to decrease in spite of the increased fluid intake (lots of antibiotics). 
• for his wound to continue to heal.  The surgeons have been pleased with it. :-)

t  h  a  n  k        y  o  u

Worship

Right now, I am sitting next to my baby.  I had to stop holding his hand to write this, so this is going to be quick. :-)

Much happened today.

Jude did not digest his milk last night.  After a while, they checked to see how his digestion was progressing and over half remained in his stomach.  So, they stopped.  I guess that was not surprising due to his heart.  His energy, metabolism, blood flow, etc. are prioritizing other areas of his body right now.

They were able to identify the bacteria that is causing an infection in his lungs.  It is Stenotrophomonas maltophilia.  It is highly resistant to antibiotics, and so they placed him on a new one.  Apparently, the risk factors associated with infections caused by this bacteria are 1) prolonged hospitalizations, particularly in an intensive care setting 2) treatment with broad-spectrum antibiotics 3) presence of central venous or urinary catheter and 4) previous treatment with corticosteroids.  ALL of these risk factors are true of Jude.

This infection has caused his heart surgery to most likely be delayed again.  While they were originally thinking Friday or Monday, they are now thinking next week sometime.  We are watching and waiting on Little Boy to see.

Please pray...
for his body to be healed of this infection.

for wisdom for the doctors as to when is the best time for his heart surgery.

for the Lord to be glorified through our little guy's life.

Tonight, I have listened twice to a sermon by Tim Keller on worship.  Here is the summary if you're interested in listening to it:  The worship of the living God gives us peace and equilibrium to face the troubles of life. Worship engages our entire being in adoration and brings us to a sense of joy in God’s ravishing beauty.

Find the sermon here.  

Be exalted, O God, above the heavens;

let your glory be over all the earth. 

Psalm 57:5

 The beauty of the star smote his heart and like a shaft, clear and cold,

the thought pierced him that, in the end, the shadow was only a small and passing thing.

There was light and high beauty forever beyond his reach. 

Many times he had been defiant rather than hopeful.

He was always thinking of himself.

Now, for a moment, his own fate and even his master's ceased to trouble him,

and he fell into a deep, untroubled sleep. 

-Sam in Lord of the Rings

 

More Than We Can Handle

This is Brandon tonight, sitting with our computer at Jude's bedside.  What a treat to be next to him this evening.  I wanted to share with you some recent ponderings of mine.

The phrase, "God will not give you more than you can handle" is frequently said to people who go through difficult things.  I think it's a mistaken notion often spoken by well-intentioned people.  In the New Testament we find in the book of Galatians the exact opposite.  In chapter 6 verse 2 it says, "Bear one another's burdens and so fulfill the law of Christ."  The word 'burden' in the original Greek represents something too heavy for just one person to carry, like a boulder.

If we are commanded to bear one another's burdens, that presumes that we will have experiences and seasons where what's happening to us is too large to bear on our own.  We will in some way be 'crushed' by them.  I think this is exactly how God designed it.

A number of years ago, in order to help our staff team experience this reality, I had them do an activity where we walked a mile and a half through our neighborhood carrying lots of stuff (5 gallon jugs full of water, tables, backpacks, etc).  Most of it was heavy and awkward to carry.  I was intentional to keep an eye on people and ask if they needed help.  While watching out for others, I was also carrying a lot not wanting to burden someone else too much.

We finished the trek then had a debrief about what we did, what we said and didn't say, and why we responded how we did.  I can't recall any of the particulars of what we learned that day (though I'm sure we learned something :) ).  What I do remember clearly is that two days later my arms were really sore!  I had carried too much for too long and I chose not to ask for help.  I wanted to be the one that helped and, therefore, I wasn't willing to depend on others in ways that would have kept me from unnecessary pain.

I have seen in my own life, and now more than ever before, that the Lord consistently gives us more than we can handle.  He wants to teach us that we are needy, that we are weak, that we are living independently (of Him and others).  I often want to prove the opposite, that I'm not needy, I'm not weak, and I can face life's challenges on my own.

But these burdens are meant to train us to cry out to Him more.  They are intended to force us to ask others for help.  He wants to teach us that we are broken and desperate for His power and presence.  We need others and, most of all, we need Christ.  The American dream of financial independence and freedom leads us down a path of terrible loneliness, especially for men.

Over the last five weeks I've picked up the phone numerous times and asked a good buddy to listen, give me their perspective and pray for me.  I've invited a few of these friends to come to Albuquerque and join us, even be willing to fly in.  I know I need others.  I'm starting to believe that this a mature way to live.  I've lived a mainly independent, self-sufficient way for many years.  I still live independently at times but the Lord is gently, graciously breaking me of that.  Thank you, Father!

I want to be fully engaged in this process.  I want to enjoy Jude every day we have with him.  I want to delight in and support my wonderful wife.  I want to love the nurses and doctors we are blessed to have treat Jude.  I want to grieve during this process.  I want to find Christ to be even more satisfying than before, to know Him deeply in suffering.

Pray for me that I will be a man that sets aside his pride and asks Jesus Christ and others for help.

I'm seeing more clearly now then ever before that I cannot be fully engaged without the help of others and without the grace and presence of Christ.  Mandy and I consistently marvel at the generosity and love demonstrated by you who are following Jude's story.  We know that we, and Jude in particular, are being sustained by the Lord and through your prayers.  What a tremendous blessing you have been.  We give thanks to the Lord for you!!!

So, here are some things to pray for Jude when you read this...

* That Jude does well taking 2ml/hour of breast milk and that there are no digestion issues.  He began receiving the breast milk Mandy's been pumping while I've been at the hospital this evening.
* That Jude will be able to get his heart surgery at the end of the week (or early next week).  We talked to the cardiac surgeon tonight and, as of now, that's his plan.  He needed to consult one more time with the plastic surgeon who worked on Jude's head last week.
* That he will continue to pee lots of the fluid that is still around his belly.  He gained .1 kg yesterday and needs to drop around 1.2 kg of fluids overall.

Thank you so much :)

5 Weeks

Sweet Baby Boy is 5 weeks old today.

We heard that it is possible that he could have his heart surgery before he turns 6 weeks old.

His heart surgeon might decide tomorrow.

 

Please pray for wisdom and healing...and for the Lord to show everyone how awesome

He is through our little boy.

 To Him be the glory forever.

We love you all.

Thank you so very, very much.

The Worry List

Early last week, the ICU doctor sat down with us and wrote out what she called "The Worry List."  It was really helpful in the sense that it gave us an overall picture of what the plan of care is for our little guy and what are the biggest causes for concern.

They are as follows:

1. Fear of an infection such as meningitis.  This is why addressing the CSF leak is important.
2. His lack of nutrition.  His coarct surgery will help because he can get off the prostaglandin.
3. His AV Canal surgery, learning to eat, and weaning him off the ventilator are all longer-term goals.

Every day, there seems to be new things we can worry about.  For example, he had a fever last night.  That could indicate infection, so they started antibiotics and a blood culture.  Lately we have noticed that the secretions from his lungs are a little pink.  They are blood-tinged.  That could mean nothing more than irritation or it could be something more significant like an infection.  So, they are doing another culture.  We should know the results of both in a few days.

We're still learning what it looks like to "not be anxious about anything" and to "not worry about tomorrow for tomorrow will worry about itself."  We long to trust God with these things, and He is using this little boy to teach us so much about trust.  We're so thankful to all of you who will share our burden and will lift that list up to the Lord.  We're so thankful that we can let Him worry about it instead.  "Praise be to the Lord, to God our Savior, who daily bears our burdens."  Psalm 68:19

Here is something from Brandon tonight as well: 

This past Friday morning as we were preparing to leave for the hospital, I told Mandy that I needed to go for a quick walk first.  I knew we could be walking into an extremely difficult conversation with doctors.  Jude's CSF leak the night before and shortly after the surgery was definitely not a good thing.  The weight of that potential conversation was unbearable.  I sent a text to a few friends asking for prayer then went for the walk.  Once I was on the walking/jogging path outside the Ronald McDonald House, I just began praying aloud over and over again, "Oh, God. Oh, God. Oh, Lord. Oh, Jesus."  It was a prayer of desperation, of crying out.  I couldn't get out much more than that.  We are so reserved as Americans in expressing deep grief and anxiety, but express it we must.  It eats us up, physically, emotionally and spiritually, when we keep it in.  A good buddy of mine and I agree that there needs to be a scream room at hospitals :)

As I circled back to the van to meet Mandy and head to the hospital, the peace of Christ was filling me and much of the anxiety was leaving.  Somehow, my crying out to Him was allowing for Him to meet me.  We still didn't know what we'd hear in the next half hour, but I was being prepared for difficult news.  I honestly don't remember a time when I expressed so fully to the Lord my fear and heaviness.  What a horrible weight for me to bear when, all along, Jesus wanted to carry it.  His promise to me (and all of us) is, "I will be with you."  Thank you!  This is such good news.  It's good news for all of us that look to You, Lord.  Help me learn to deeply, fully, unreservedly cast all my cares upon You.

 
CSF Update:  We met with the doctors late Friday morning and found out that the CSF leak wasn't good, but it wasn't as disastrous as we imagined.  They weren't surprised and said we'll need to continue waiting to see how Jude heals in the coming weeks.  The plastic surgeon had placed a temporary drain that is relieving the pressure from the CSF and allowing his skin to heal.  So, the CSF is draining there as well as from one small place in the suture line (stitches). 

 The neurosurgeon had placed a patch inside his skull to seal off his dura and keep the CSF in.  That, apparently, did not hold.  The hole, however, might be the size of a pinhole.  The body can heal itself and form cells over that patch.  So, that is why we are waiting and watching...to see if his body will seal off that hole.  Please pray that it does and that his skin heals.  Thank you!!

Source: be-the-change.tumblr.com via Cara on Pinterest

Gifts

Caleb and his cousins watching our video on his birthday.  This photo was stolen from Julia's blog.  Thanks, Julia!

This summer, I read part of the book One Thousand Gifts by Ann Voskamp as part of a reading group.  I haven't finished it, but God has used it to teach me much about giving thanks.  In the book, she writes of a list she makes of one thousand gifts given to her from God...one thousand things she is grateful for.  I started a gratitude journal that I put down for a while and picked up again this week.  I am going to try to make that goal before we leave the hospital.

Tonight, I am thanking God...

• for the little boy asleep in the room he shares with his cousins 1,217 miles away. 
• for the little boy asleep in his crib at the hospital 2 miles away.
• for my best friend sitting next to me.
• for all of you walking with us on this journey.
• for wonderful family caring for our big boy.  See Julia's blog post on C's birthday here.
• for great nurses and doctors caring for our littlest when we can't be there. 
• for the fact that He is always with our boys...whether we're there or not. 
• for Jude's decrease in weight today.  He is less swollen!
• that He daily bears our burdens. 
• that we have not felt sorry for ourselves when we see families taking their babies home.
• that we have this opportunity to wait on God for His healing for our little guy. 
• that we are learning more about what it means to trust God.
• that He has provided in pretty amazing ways for our staff team back home. 
• for all the wonderful students involved in Cru.
• that we might get to see them when they drive through here to go up to our fall retreat.
• for friends who will still love me even though I am awful at staying in contact with them.
• for the possibility of Jude being able to start eating.
• for our new little freezer to store milk until he does start eating.
• that we might be up here for the Balloon Fiesta.
• for computers and cell phones that allow us to stay in better contact with Caleb.
• that we live in a place and time that has allowed our baby to survive these challenges. 
• that his cardiac and neurological functioning seem so good considering everything.
• that God continues to answer prayer.
• that my cousin Andrea is out of her coma and has even written names out on a whiteboard!
• that people (even family) are entering into a relationship with God through Andrea's story!
• that "we know that in all things God works for the good of those who love him, who have been called according to his purpose."  Romans 8:28

Waiting

Right now we are waiting...

We are waiting 2-4 weeks until his first heart surgery.

We are waiting to see what happens with his CSF leak to see if he needs another surgery. 

We are waiting to see if another hospital is recommended to us if he does need that surgery.

We are waiting to hear more from the doctors who don't work over the weekend.
We are waiting to decide how long Caleb will be in Illinois.

We are waiting on the Lord. 

Please pray that Jude will get the nutrition he needs to heal.
Please pray that he will not get an infection. 
Please pray for his swelling to go down.  It affects so many things. 
Please pray that the Lord would show us how to love both our boys as they need. 

Thank you so very much.  :-)

"I have learned that faith means

trusting in advance what will

only make sense in reverse."

Philip Yancey

Edited to add later:  There was question as to why doctors don't work over the weekend.  Doctors do work over the weekend.  One of our ICU doctors is a traveling doctor and had to return home until Monday.  Our cardiac surgeon is out of town, and we will hear from him on Monday as to whether he can have a tiny bit of breast milk.  And, the plastic surgeon who performed Jude's surgery is off for the weekend.  He visits Jude daily and will continue to do so next week.  Things slow down in hospitals during the weekend, and we're grateful for the peaceful time together.

One Month

Jude is one month old today.  We had a good day with him overall, with helpful conversations with doctors and quality time spent together reading and holding hands.

We learned more about the surgeon's guarded prognosis for healing.  He is really concerned about our little boy's nutritional status.  His body has not been getting what it needs due to the heart condition, and it has been preventing his tissues from healing as they should.

Tonight we noticed that the dressing covering his head was soaked with some yellowish-red liquid.  We don't know what it is and won't know any more until tomorrow, but my heart broke when I saw it.  It could mean nothing, but it's hard to believe that.

In the car before we left the hospital, I broke down...questioning God and why things are happening the way they are.  I asked Him to help me not grow hard-hearted towards Him...or try to self-protect. I was honest and broken as I cried out to Him.  When we got home, we spent more time together before the Lord.

As only He can, He is meeting me again.  My friend, Sarah, has a little boy with a serious congenital heart defect.  He had his first heart surgery one year ago this week. On their blog tonight, Sarah posted again their post from the day he had his surgery.  They thought they had lost him.  She has a photo up of her son that day and a photo of her son today.  It's amazing to see what God has done.

She wrote the following, but I could have written it myself:

I remember specifically thinking about what my life would look like a year from that day. I asked so many questions. “Will our little man be with us? Will he make it off of life support? Will we celebrate his first birthday? Will I ever get to take a deep breath again? Will I get to see our baby grow into a handsome little boy?”

Read all of what she shared here.

Sarah's husband is Matt Hammitt, the lead singer of Sanctus Real.  He wrote an album about Bowen while Sarah was pregnant, and I have been eagerly waiting for it.  The Lord has already used the first two singles All of Me and Holding You so significantly during this season of our lives.  And, tonight I learned that the rest of the album, Every Falling Tear, has been released.  I can't stop listening to it.  Lord, thank You for meeting us so personally and caring for us so well. 

And, Sarah, please tell Matt thank you. 

Click below to read lyrics to some of these songs:  

Surgery #2 Update

Jude did well during surgery tonight.  Thank you for praying.  I don't understand yet what exactly happened in the operating room, so a more thorough update will have to come tomorrow after we get some questions answered.

It seems that things went well, but they found more than they expected when they went in.  The surgeon informed us that if this doesn't work, we will need to be transferred to a different hospital with more specialists.  In the end, the surgeon seemed less hopeful than we expected that this solved the problem.

We will know more tomorrow.

The lack of communication and the miscommunication between the hospitals has been hard for us.  Our baby's care is in so many ways being negatively affected by politics.  We are learning how to advocate better for our son.  We have much to learn.

In the meantime, please pray for God's will to be done in our lives.  Pray for wisdom as we navigate the medical world. Please pray that our trust in Him would grow still more.  And, please pray that people would see more clearly how beautiful Jesus is through the lives of our children.  Thank you so much.   

I lift up my eyes to the mountains

where does my help come from? 

My help comes from the LORD,

the Maker of heaven and earth.

He will not let your foot slip -

he who watches over you will not slumber; 

indeed, he who watches over Israel 

will neither slumber nor sleep.

The LORD watches over you— 

the LORD is your shade at your right hand; 

the sun will not harm you by day, 

nor the moon by night.

The LORD will keep you from all harm—

he will watch over your life; 

the LORD will watch over your coming and going

both now and forevermore.

Psalm 121 

Happy Birthday, Caleb!

Jude is still in surgery.  They didn't get started until a few hours ago.  We were told that things are going well and that he should be due up here in his room in a half hour or so.  Thank you so much for praying.  Thank you.  Thank you.  Thank you.  And, thank You, Lord. 

Caleb has been having a great birthday.  We're so thankful for our family who are loving on our (big) little boy in such sweet ways.  Thank you all so much!!

Here is another video we put together for our big boy.  (Thanks for playing it for him, Christine!) The music doesn't seem to go with baby pictures, but it is one of Caleb's favorite songs and he hums it all day long.  It's Don't Waste Your Life by Lecrae.  He will like it better than any soft, sweet song I might have picked out.  :-) So thankful for that little boy!

We will update when we know more tonight.  Thanks again!

Trials & Laughter...Sorrows & Joy

We struggled through three and a half years of infertility before we got pregnant with Jude.  During that time, I questioned God's plan and really struggled with trusting Him.  Tonight, I received a message from a friend who is going through the same things...only to a greater extent.

As I was writing her back...hurting for her and wanting so badly to hug her...I realized how differently I view suffering now.  I am so grateful for everything we are going through with Jude.  It breaks my heart to see him as sick as he is, but I thank God every day for the time that we have with him.  I know more confidently than ever before that His plan is good.  He is good.  And, I am learning to a small extent what Paul means when he says, "we rejoice in our sufferings."

"Therefore since we have been justified by faith,

we have peace with God through our Lord Jesus Christ.

Through him we have also obtained access by faith into this grace in which we stand,

and we rejoice in hope of the glory of God.

More than that, we rejoice in our sufferings,

knowing that suffering produces endurance,

and endurance produces character,

and character produces hope,

and hope does not put us to shame,

because God's love has been poured into our hearts

through the Holy Spirit who has been given to us."

Romans 5:1-5

Once again, much has happened in the 24 hours since we wrote last.  At this point, we are not transferring to Denver Children's Hospital.  We will remain here in Albuquerque.  Today, we were visited by a plethora of surgeons.  The conclusion they came to is that Jude now has a "wound issue." A plastic surgeon will take him to the operating room tomorrow along with a neurosurgeon.  Together, they will do a rotation flap that will hopefully fix the problems he has had with CSF leaks and will protect him from an infection such as meningitis.  The possibility of infection is driving the urgency behind this repair.  An infection would be devastating.

As of now, the plan for surgery is 12:30pm tomorrow.  We are grateful for this plan, but we have learned that plans can change at any moment.  Ultimately, it is God's plan that we're trusting in.

Please pray for protection for Jude against infection.

Please pray that his surgery will be successful and that our sweet baby will do well under anesthesia.  

Please pray for wisdom and guidance for everyone involved in Jude's care. 

Please pray that we will trust the Lord with all of our hearts and that He will be glorified.

Please pray that Caleb has a good birthday tomorrow and that we can love him well from afar.

Caleb's birthday is tomorrow (Wednesday).  He is turning five.  This wasn't exactly how we planned on celebrating his birthday...with him out in Illinois.  But, the Lord knew.  It has been hard figuring out how to show him love over the long distance, and these last several days have been pretty crazy.  We made him a few birthday videos tonight, and we wanted to post one on here.  We laughed so hard, which we have thankfully been doing a lot of lately.  With sorrow has come so much joy.  Thank You, Lord.  :-)

When God says, "No"

I (Brandon) am writing the post tonight while Mandy sleeps :)


Many of you read Mandy's previous post sent this afternoon.  We were in the middle of moving from UNM to Presbyterian when she posted it.  Mandy asked for you to pray for Jude's transition to go well, for his incision not to begin leaking CSF again, for heart surgery to be scheduled soon and for a few other things.

We were excited and apprehensive about the move. It was a step forward in Jude's overall progress and care.  Being back at Presbyterian meant that Jude's first heart surgery could be just around the corner.  We were also apprehensive about the move back to Pres.  Jude began leaking CSF for the first time ten days after his craniectomy.  It had only been three days with no leaks at UNM this time and we were making the trip.

While the newborn transport team was taking Mandy and Jude from UNM to Pres, I was hurrying Jude's toys, some food, and a few other things from our room at UNM to our van.  During that time by myself, I was asking the Lord over and over again for Jude's incision to not leak.  Our cute little man is pretty fragile now and I knew that the trip could be hard for him even though it's less than a two mile drive from one hospital to the other.

I made it to Jude's new room at Pres before the transport team.  In a few moments Mandy, the transport team and Jude rolled in.  Our nurse asked us to go to the family waiting room while they transitioned Jude.

Within ten minutes a nurse came into the room to give us a quick update.  Curious about whether the CSF had leaked, we asked how his incision was doing.  It was hard to hear from her that, yes, his incision had leaked a significant amount of CSF.  The nurse continued to talk about other things related to Jude.  I eventually told her that we were having trouble hearing her because we were stuck on the fact that his CSF had leaked again.  We were stunned and just sat there praying off and on until another nurse came 20 minutes later to bring us to his room.

The rest of our evening consisted of:

1.  Finding out that his head was wrapped tightly again with Coban to stop leaking.
2.  Realizing that Jude looked puffier than when we left UNM.  He had actually gained another 1/5 pound of water weight during the transition.
3.  Meeting with a doctor to find out what our next options were.
4.  Jude getting another echocardiagram and an ultrasound for his abdomen.

During the rest of the evening I wrestled with the things we had asked of God that He did not give us, particularly the request of Jude's incision to not leak in the transition.  That was difficult.  It's always difficult when we ask for something specific and we do not get what we asked for.  What do we do when God says "No" to what we ask of Him?  And how do I respond this time?

What continued to come to mind for me was Jesus' prayer on the last night before he was killed.  Jesus pleaded with his Father to "take this cup (of judgment) from me".  He asked his Father three separate times to let it pass.  The request on Jesus' part of being allowed to escape his imminent suffering and death was followed by Jesus saying, "Yet not my will, but Your will be done."

Jesus wanted the will of his Father, which would lead to the salvation of many, more than release from his suffering and subsequent death.  Do I want the will of the Father, however heart-breaking and confusing it may be, more than anything else?  Do I want His plans more than my plans?  Can I say, "I will continue to ask You, Lord, for what I want but, more important than what I want, I will trust that You will choose to bring about what is best even if it doesn't make sense to me right now."  Even as I write this I am torn between my desires for Jude and submitting to my God who knows the end from the beginning.  I am realizing that when God says, "No", just as was true of Jesus, His "No" is never the end of the story.  He doesn't walk away but keeps saying, "Just wait on Me a little longer."


Father, help me trust You.  Help us all trust You.  Help us to plead with you for Jude's healing and at the same time plead for Your will to be done.  Teach us, Oh Lord.  We need You so desperately!


When we met with the doctor earlier this evening, we found that our journey may take an unexpected turn.  The challenge of Jude's neurological surgeons being at UNM and his cardiothoracic surgeon being at Pres have led the doctors to believe that having all the surgeons in the same building will be best for his future care.  The trips back and forth between hospitals have been hard on Jude's body as well.  Therefore, it's possible that Jude will be transferred to Denver Children's Hospital (or another hospital) in the near future.

We will most likely find out tomorrow if our insurance will allow for and pay for this transfer along with whether the neurosurgeons and cardiothoracic surgeons in Denver are willing to take Jude.

We'd love for you to pray for the following things...

1.  That we would be able to go to Denver.
2.  That Jude's swelling would decrease significantly.
3.  That our other little guy, Caleb, would have an incredible 5th birthday on Wednesday even though his mommy and daddy won't be there.
4.  That Mandy would feel deeply refreshed tomorrow.  I think she was asleep by 10pm!
5.  That, more than anything else, we would ask God for His will to be done.

Thank you so much for your incredible love shown to us.  We are amazed everyday that so many people are loving Jude and us through prayer.

From UNM to Presbyterian

With the eventful night we had last night, the doctors felt it more urgent to get Jude back to Presbyterian for his heart surgery.  The newborn transport team just got here, and we should be over there within the hour. 

He could have his heart surgery in the next few days.  We are really grateful for that...and concerned for his heart.

Please pray...
that Jude will do well during the transport.
that his CSF would continue to stay where it should.
that his heart would pump blood as it needs to.
that he would be able to get his heart surgery soon.
and that our trust in the Lord and love for Him would continue to grow throughout this process.

***THANK YOU***

He Cares for Us

I was hoping to have an uneventful post with only the good news of the fact that he has had no more CSF leaks.  Not tonight.

Several things are going on right now as I write this post.  It has been an eventful night, and I think we're both going to stay the night.  There are people in and out of his room, and they are trying to figure out the different things happening with our sweet baby.  Please pray for wisdom for the doctor and nurses.

He is not peeing.  His urine output seems to have slowed way down.
He wasn't getting the same amount of oxygen below his heart as above it.  They increased his prostaglandin, and that seems to have helped.
His respiratory rate is high.  The respiratory therapist has been spending much time in here trying to figure out what is going on. 

Praises:
His CSF seems to be staying where it should.  :-)
His blood pressure has been pretty good.
Church tonight was really good for us.
Even when the machines were saying he wasn't getting much oxygen below his heart, his pulses were great.

Prayers:
Please pray that they can figure out what is going on with his urine output.
Please pray that he will pee well and that his plumbing would work.
Please pray that his incision would continue to heal. 
Please pray for his heart to continue to do what it needs to.
Please pray for wisdom and love for those caring for our sweet boy.
Please pray that the Lord would be our strength and our shelter.

We have been attending Mars Hill Church since we got here.  It has an evening service that is really convenient for us because there are so many doctors to talk with in the mornings.  We appreciate the opportunity to worship and hear the Word preached. Tonight, the pastor interwove a personal story throughout his preaching on Luke 22.  The story he told was the story of the birth of his son 19 years ago.  His son was born with congenital heart defects that they didn't know about, and he died a few months after birth.  But, the story didn't end there.  The pastor experienced the love of Jesus in ways that he had never before known. 

As the pastor was telling this story, we seemed to know what he was going to say before he said it.  We looked at each other often throughout the sermon, amazed once again at how personal the Lord is. 

Here is the video of the sermon from church tonight, followed by a description of tonight's message.

As we look at Jesus celebrating his Last Supper with the disciples, we see that Communion is about Jesus and the fact that he loves and forgives us. It’s not about our failings or weaknesses; it’s not something we do to be right with Jesus. When you see things from Jesus’ perspective, you realize that his plan is better than yours, his Word is more reliable than yours, and his love is bigger than yours. He’s eager to share this Communion meal with us because he loves us with a love that’s spelled out in blood, a love that we remember with bread and cup.

The CT Scan

Today, I spent much of the day in the OB Triage here at the hospital.  I have been experiencing some dizziness, headaches, blurred vision, nausea, and a strange taste in my mouth.  Because some of these symptoms seemed neurological, the doctors ordered a CT scan for me.

What followed was much waiting.  Waiting for doctors.  Waiting for my scan.  Waiting for results.

In the meantime, I was afraid.  Afraid of the imaging machine.  Afraid of the results.  Afraid of what could happen to my little boys if the results weren't good.

I struggled today.  I struggled with trusting God's plan.  I struggled with worry about the future.

Since Jude was born, people have told us that we are strong.  As the days go by, we're realizing ever more just how little strength we have.  We're not strong.  God is strong.  Our faith is small, but it's in an incredible God.  And, He is...over and over again...proving Himself so very worthy of our trust.

We received the initial results tonight, and they appear just fine.  We're really grateful for that.  But, even if they had not been good, God is still good.  He is still God, and we can still trust Him.  I am learning more and more just how trustworthy He is.  Please continue to pray that we will trust Him.

And in other news, Jude has not had a CSF leak since yesterday morning.  Praise God.  Please continue to pray for his incision to heal up permanently.

Thank you, friends.
We love you.
Goodnight.

New Plans

The last few days have been so long and so full, and it is has felt pretty hard to summarize each day in a blog post.  Today, for instance, felt like a week.  It's so hard to even think back to this morning.

We didn't leave UNMH today.  We are still here, and we will be here indefinitely.  The incision leaked today, and the neurosurgeons paid another visit.  Jude received more stitches.  The neurosurgeon also inquired about his nutrition...wondering if the lack of healing in the incision had anything to do with his proteins.  He was tested, and his proteins are low.  I think that this means that his body is using up all its resources on other parts of his body that are sick (like kidneys, heart, swelling, etc.) and it's having a hard time healing itself like it should.  So, they started to give him albumin tonight.  Please continue to pray that his incision heals and that this works.

If his incision doesn't heal on its own, we learned tonight that the plan is to take him back into the operating room.  The surgeon will repair the interior (the dura) where the CSF is leaking through.  We had been told that he would not do this because the risks are too great, but we heard that from the ICU doctor and not the surgeon.  I am not sure yet how significant the risks are, but the surgeon seems to think that they are low enough that he can proceed with surgery if necessary.  We were thankful to know that there is a plan if this doesn't work...since nothing else they have tried has worked so far.  

With all of these latest challenges (serious swelling, continued leaking, etc.),  I had been wondering if these were signs that his heart was giving up.  I cried a lot today...wondering what all of this means for our little guy.  Apparently, I wasn't the only one questioning if his heart condition was starting to change.  The doctor ordered an echo to look at the heart.  A cardiologist came up to review the echo, assuming the same thing.  Instead, they were surprised to find out that his heart is doing great in light of its defects.  So, apparently this is all kidney related.  And, the doctor is now trying to communicate with the kidney doctors at UNMH as well as Pres to get their thoughts on how to best treat our baby.  In the meantime, we're praising God for such a strong little heart.  :-)

Random side notes...

I am still not feeling well and have some strange symptoms.  We checked our blood pressure at Wal Mart, and mine seems fine.  I googled my symptoms, and I found out that I might have a CSF leak.  Ha ha ha. That's why it's not a good idea to google medical info.

My sister-in-law, Julia, posted some pics of Caleb.  Thanks, friend!  You can find the post here.

Please pray for wisdom for the doctors.  We're grateful for all they did today.

Please pray for the incision to heal on its own without surgery.

Please pray for my health.  I am going to try to go to the doctor tomorrow.

Please pray still for his kidney function to improve and the swelling to go down.

Please pray that we will trust the Lord with our boys.

***thanks***

For when I am weak, then I am strong.

I'm posting early tonight.  I hope to be in bed within the hour. 
Brandon is back at the hospital singing and reading to our sweet Jude.

I mentioned before that we never know what to expect when we get to the hospital each morning.  So much happens on the night shift, and each morning we feel the need again to lay before the Lord our day.  Tests are run in the early morning, and his incisions have been seeming to leak at night as opposed to day.

The news that awaited us this morning was fun to hear.  His incision didn't leak.  For the first time since we have been here, there were no leaks.  We were also informed that we could be leaving for Pres as early as today.  We took the news with both gratitude and caution.  We obviously are very eager for our littlest to have his heart surgery, but we also want his incision completely healed with no chance of needing to come back to UNMH.

The only question on the part of the neurosurgeons and the doctors was whether or not Pres had a bed available.  The neurosurgeon said we were free to go, and that we would need to be back in 7-10 days for Jude's stitches to be removed.  That would require another transport back here, so we're working on that one.

We prayed that Pres wouldn't have a bed for us if the Lord knew he was not ready to leave UNMH.  We soon heard that they were really busy and he could receive better care here for the night, with hope to transfer tomorrow.  Grateful for a quick answer to prayer.

Not much later, Jude coughed and a little CSF leaked again.  It was disappointing, but as I said, we were pretty doubtful that the 24 hours were enough.  The amount was also smaller than ever before, so that was encouraging.  Later in the day, there was a tiny bit on his dressing, but it was still a small enough amount that the doctor thinks we can leave tomorrow.  We're so thankful for the progress...and for God's faithfulness to answer prayer.


Tonight, I'm thanking God...

• that the CSF leak has slowed down.  
• for the possibility of going to Presbyterian tomorrow.
• for my wonderful husband who takes such good care of me...opening car doors, carrying my heavy stuff, making sure I eat, etc.
• for sweet visitors who came up from Cruces and from across town to see us today.
• for the incredible kindness and generosity of friends and family.  We're so blessed by you all. 
• for our medical insurance and Medicaid.  We got our first round of bills today.   
• that Caleb is in such good hands.  We miss him.
• for the sweet little baby sleeping while his Daddy reads to him.

Tonight, I'm asking God...

• for a complete cessation of the leaking and a complete healing of his incision.  
• for good kidney function and a decrease in his swelling.
• for Caleb.  He has had some nightmares, and it is hard to talk well with him over the phone.
• for wisdom for the doctors as to when is the best time to transport Jude.
• for good health for both of us.  Brandon has a cough, and I am having some headaches and blurry vision.  If we get really sick, then we can't be in the PICU or the RMH.
• that God's presence and love would be real to both of our boys...even as they sleep. 
• that we would continue to experience the truth of 2 Corinthians 12:9...a verse that has been playing over and over again in my head.

Thanks so much for trusting God with us

for the healing of our little baby.

This is Love

When Jude is awake and alert, I don't think to get the camera out.  The time is precious, and we want to take advantage of the time while we have it.  It is such a good time to engage him.

He was awake for such a long time today that I eventually got the camera out.  I took some video (still learning how it works).  He is sweet and cute as always, and you can see his swollen belly. In the background, you can hear Brandon talking to Caleb and our niece Maggie.  You can also hear the shrill screaming of Jude's bed warmer right about in the middle of the video.  Sorry about that.  I think I'd recommend watching the video with the volume off.  :-)





















It was another hard day.  The incision leaked again, and so the neurosurgeon made another visit.  This time, he put in a few more stitches with an added dressing that is putting more pressure on the incision.  We were told that sometimes these cases can be resolved in this way...that eventually they just stop leaking.  We were also told, however, that 99% of surgical incisions don't leak like this.  Jude falls in that 1%.  We were sad to hear that, and we don't know what it means if his incision doesn't heal.  It started leaking again after the neurosurgeon left when the nurses were applying the new dressing.  So, hopefully the added pressure and the bandage is enough to end the leaking...because the stitches didn't seem to be enough.  Please pray still for an end to the leaking...for healing for his incision so he can have his heart surgery.

We also had another conversation with another doctor about Jude's future.  With each new hospital, we have to get to know the doctors and nurses all over again.  They need to know what we understand about our little boy's condition.  I sometimes think they don't believe we understand how sick he is because of the way we are responding.  They also want to make sure they are on the same page we are as far as how much care they are giving him.  With different levels of directness, these doctors have wanted us to know that they will give him as much or as little care as we desire.  Obviously, we want them to do everything they can.

So, as you can imagine, this has been another hard day.  Pretty heartbreaking.  We've cried a lot, and we're tired.  We know that God still has plans for this little guy. We know that God is still good.  We know that we can still trust Him, and we are clinging to His promises.

Today, my tiny baby received stitches in his head.  I watched for the few minutes I could tolerate.  I watched him go through something painful, and it hurt me to see it.  I ache even now as I think about it.  But, I knew that he needed it.  I knew the bigger picture.  I knew that although he couldn't understand the "why" behind it all, we did.

We don't completely understand the "why" behind what we are going through with Jude.  Right now, we are hurting.  We are in pain.  It's easy to get overwhelmed by the daily ups and downs.  But, the Spirit of God reminds us to step back and see that the daily ups and downs aren't everything...they aren't the big picture.  These days are just a few paragraphs in this story that Jesus is authoring.  

What we do see clearly is that we have a Father who loves us...who wants what is best for us.  We have a Father who is wise and all-knowing.  He knows what is best for us.  We have a Father who is all-powerful and can do anything.  He will bring about what is best for us.  Our Father is trustworthy and good.  Yes, this hurts.  But, we can't understand everything.  He can.

Thank You, Father.  Thank You for your goodness displayed in our lives.  Thank You that you sent your Son into the world to die in our place.  Thank You that You understand...and that You care more than we can comprehend.

"This is how God showed His love among us:

He sent His one and only Son into the world

that we might live through Him. 

This is love: not that we loved God

but that He loved us and sent his Son

as an atoning sacrifice for our sins."

1 John 4:9-10

Needing Him

These pics don't exactly depict the mood of our day...but I wanted to share them anyway.  They make me smile.

The top pic is of our cute little boy in all his puffiness.  He is covered, so you can't see his incredibly swollen little belly.  Please keep praying for his body to get rid of the fluids appropriately.  Please also keep praying for his incision to heal.  We don't think there was any leaking today, but it's hard to see under all the bandages.

The second pic is our sweet night nurse, Marian.  She has been great.  We have been so blessed with so many great nurses, and tonight was the first time I got a picture of our baby with one.  We hope to go back with him and visit our great nurses when Jude is feeling better.  Maybe we'll get some shots then. 

The third pic was taken when we were skyping with Caleb.  It's hard to carry on a conversation with a five-year-old boy over the computer.  There are many silly faces involved. 

So, today was a pretty hard day.  I have a hard time expressing sadness in writing.  The multiple visits from neurosurgery as well as the news of his weight gain weighed heavily on us today, and I spent some good time crying.  Jude also had an ultrasound on his leg to test for a blood clot.  The initial results seem to indicate that he doesn't have a blood clot...just a lot of swelling.  We're grateful for that.  We didn't know that until late tonight, so that added to the day's heaviness.

Thank you for praying for us.  We have never needed prayer more.  We have never felt a greater need for the Lord.

Brandon read this tonight in Radical by David Platt.  It struck home.

"While the goal of the American dream is to make much of us, the goal of the gospel is to make much of God.  In direct contradiction to the American dream, God actually delights in exalting our inability.  He intentionally puts His people in situations where they come face to face with their need for Him.  In the process, He powerfully demonstrates His ability to provide everything His people need in ways they could never have mustered up or imagined.  And in the end, He makes much of His own name."

Still Swelling

Source: allconsumingfire.tumblr.com via christin on Pinterest

This passage is meaning a lot to me today. So thankful for the Word and the Lord's strength.

I didn't want to wait until tonight to ask for prayer for Jude's swelling. He has gained almost four pounds in weight since he has been at UNM... four pounds in a little over four days.

Please pray that his body would get rid of the fluids as it should. He needs to lose some weight.

And, the neurosurgeons came back this morning. They took off all the dermabond and put band aids on to apply pressure on the incision. If it leaks again, they will replace the stitches with longer ones. Please keep praying for his incision to heal.

And please keep praying that we'd know Christ's presence and strength through all this.

Thanks for praying, friends.

Love, us

No more neurosurgeons, please.

I got to hold our little boy again tonight.  :-)  When I held him, his incision started to leak cerebral spinal fluid (CSF) again.  He had coughed during the transition, and that seems to trigger it.  The neurosurgeon came and put some more dermabond (glue) on the incision.  If this doesn't work, they will likely put in something called a lumbar drain.  The lumbar drain, as I understand it, is a temporary catheter in his spine that will relieve some of the pressure of the CSF and allow the skin at the incision site to heal.

We can't get back to Presbyterian for his heart surgery until this resolves.  Please pray for a complete healing for his incision.  The poor little guy has already had so much dermabond.  In fact, his ear even ended up glued to itself at some point.

I would really love to not need to see the neurosurgeons anymore.  Jude agrees. 

Thanks for praying.  I am going to go hold our sweet baby now.  :-)

...made for another world

Google Images...I can't find the original source.

Three weeks ago tomorrow, our lives changed.  An incredibly sweet little boy was born, and the Lord has been using him ever since to teach us much about His love, His faithfulness, and His power.  He is also using him to teach us about the reality of this world we're living in.  It is temporary.  It is broken.  It is never going to satisfy us.

We don't know the future.  We don't know the extent of Jude's disabilities.  We don't know how long his life will be...or ours.

And, we've never known such hope.
We've never known such joy...and peace.
We've never prayed and worshiped so much together.
And, we've never been more grateful for the hope and reality of heaven.

Thank You, Jesus. :-)

"He will swallow up death forever;

and the Lord God will wipe away tears from all faces,

and the reproach of his people he will take away from all the earth, for the Lord has spoken.

It will be said on that day, 'Behold, this is our God; we have waited for him, that he might save us. 

This is the Lord; we have waited for him; let us be glad and rejoice in his salvation.'"

Isaiah 25:8-9

"He will wipe away every tear from their eyes, and death shall be no more,

neither shall there be mourning, nor crying, nor pain anymore,

for the former things have passed away.

And he who was seated on the throne said, 'Behold, I am making all things new.'"

Revelation 21:4-5

Please pray...

that Jude's incision would heal completely and that there would be no more seeping.

that he would pee.  They removed his catheter tonight, and he hasn't peed much since.
that his swelling would go down.  He is retaining tons of fluid.

that his kidneys would function well.  His creatinine level decreased today to .8!

that his lungs would improve with the respiratory therapy.

thank you, friends  :-)

Ups and Downs

Yes.  This is a rollercoaster.  At least, Jude's progress seems to be.

This morning, Jude's creatinine level was back to 1.0.
Also, his right lung collapsed, and so they have started him again on the respiratory therapy.
His incision leaked tonight as well...quite a lot this time and after more stitches and dermabond.

Thankfully, however, we don't feel like we're on a rollercoaster anymore.  The Lord doesn't change.  He remains the same solid, firm foundation.  Our hope is in Him.  It's not in Jude's progress.

The Lord has been gracious to us,
and we have been doing fine today.
Thank you for praying.

Tonight, we're asking God for...

wisdom.  I had a strange and confusing conversation with a medical professional tonight.

decreased swelling.  We love our littlest boy, but we'd really like to see less of him.

decreased creatinine levels.  These jumps have been so crazy.

a healthy lung.  That change was pretty drastic too.

no more seeping.  Ever again.

Thanks again for sticking with us through this.
You all are such a tangible expression of the Lord's love and care for us.
We praise Him for you.

Some have asked for our address.

Mail can be sent to either 

Ronald McDonald House

Brandon and Mandy Pelton

Room 24

1011 Yale Blvd NE

Albuquerque, NM 87106

or

 Brandon and Mandy Pelton

c/o Denise and Trevor Riggs

3705 Marquette Ave NE

Albuquerque, NM 87108-1031