Held

The Story of Jude

Doorways Cut in Sod

I once scorned every fearful thought of death, 

When it was but the end of pulse and breath, 

But now my eyes have seen that past the pain

There is a world that's waiting to be claimed.
Earthmaker, Holy, let me now depart, 

For living's such a temporary art. 

And dying is but getting dressed for God, 

Our graves are merely doorways cut in sod. 

Calvin Miller

I wrote an obituary today for the first time.  I am posting it below.  In the meantime, please pray for us tomorrow.  And, please pray that the service would clearly reflect the beauty of Jesus as seen through the life of our precious little guy. 

If you're local, we would love to see you tomorrow (even if we've never met).  Again, thanks so much for all of the support. 

On August 15th, 2011, God blessed this world with the gift of Jude Matthew Pelton.  He stayed with us for only 67 days, but his short little life touched so many.  On October 21, 2011, he left our arms to be held by the One whom he was created for:  Jesus.

When we learned that Jude had Down Syndrome and a heart defect, we knew that God would use his life for His good purposes in this world.  While we never could have imagined that his life with us would be so short, we received our baby as a gift.  Little did we know how precious that gift would become.  He has changed us forever.  He has taught us what it means to love, what it means to live, and what it means to hope in Jesus. 

It is our prayer that our baby's life point others to the One who created him.  Only through Him can we have this hope.  Only through Him can we have peace in our sufferings.  And, only through Him do we get to spend eternity with our sweet, sweet Jude. 

Jude was intensely loved and cherished by his family:  Daddy and Mommy, Brandon and Mandy Pelton;  Big Brother, Caleb;  Grandma and Grandpa, Barb and Greg Cross;  Mamie and Bumpa, Hope and Barry Pelton; as well as many wonderful aunts, uncles and cousins.

If you would like to join us as we celebrate his sweet life, the service will be held Saturday, October 29th at 3pm at University Presbyterian Church, with the burial taking place at a later date in Mooreland, Indiana.  In light of Psalm 67, a memorial fund will be set up to help others know the wonderful name of Jesus.  Checks can be made out to and sent to First Evangelical Free Church, PO Box 1835, Las Cruces, NM 88004.  Please write "Jude's Memorial" on the memo line.  Thank you. 

Buddy Walk 2011

 On Saturday, the Southern New Mexico Down Syndrome Families is hosting a Buddy Walk to raise awareness of DS.  The cost of $12 includes a gift bag, a t-shirt, and refreshments.  All proceeds go to SNMDSF.

We are planning on being there.  We would love for you to join us.  It starts at 10 on the east side of the Pan Am Center.  For more info, check out our friends' facebook page here or the SNMDSF site here.

"What can I do?"

We are so blessed to be surrounded by people who care...physically and through the internet as well.
Many, many friends have asked us, "What can I do?" or "Let me know if there is anything I can do."  We really appreciate the desire, but we never know what to say.  Tonight, I have some thoughts...

1)  Consider sponsoring a child through Compassion International.  Jude had wonderful medical care.  The vast majority of children do not.  We hope to have a table set up on Saturday with information on specific children who are in need of sponsorship.  We hope to specifically have children with special needs included on the table as well.  For more information on Compassion, please click here. 

2)  Save up your pop tabs to benefit the Ronald McDonald House.  We are so thankful for the Ronald McDonald House.  We had a free place to stay that was close to our little guy, and we were fed lovely meals every night.  I hope to share more in a future post about what life was like for us there, but in the meantime I wanted to let people know about this program.  We are planning on having something on Saturday for collecting pop can tabs.  So, if you drink a can of pop between now and then, please save the tab.  Read more about the program here.

3)  Give blood.  Jude had all sorts of blood transfusions throughout his stay in the hospital.  He had platelets, plasma, red blood cells and other blood products I can't recall.  We were so thankful to those people who donated...enabling our beloved boy to live past his second day of life.  Giving does save lives.  To schedule an appointment, go here.

Thank you, friends.

Our life with Jude seems like a dream sometimes.   Life has continued here since we left in August.  Because mine stopped, it seems like everything else should have as well.  But, it didn't.  It seems like we should have returned to summer.  But, we didn't.  It is already homecoming on campus.  Students started school while we were gone.  The leaves began falling off our trees.  Christmas decorations are out in stores already.  Life has gone on.

And, it wasn't a dream.  It was very real, and our hearts have the wounds and my body the scar to prove it.  As we adjust to life back home, the pain remains fresh...with the service, the burial, and the packing of Jude's room still looming before us. Yet, we are certain that the One who has walked with us through these past few months will continue to walk with us through the months to come.

Thank You, Father.

    Blessed be the God and Father of our Lord Jesus Christ,

the Father of mercies and God of all comfort,

who comforts us in all our affliction,

so that we may be able to comfort those who are in any affliction,

with the comfort with which we ourselves are comforted by God.
(2 Corinthians 1:3-4 ESV)

Back Home

We are home now.

When we came home, we found:

 

Our house had been cleaned again.

Our front door had been replaced.

The refrigerator was stocked with groceries.

There was a meal waiting for us.

Fresh flowers were on the counter.

Hot mugs of apple cider were steaming.

Friends were waiting to help us unload.

Millie was eager to see us.

And, our front porch was filled with beautiful flowers.

It was a lovely sight.

We are so blessed.

Thank you all so much.

Our trip to Illinois was really good and just what we needed.

We love that kid so much, and it was wonderful to be with him again.

It was especially funny to occasionally be called

"Aunt Mandy" and "Uncle Brandon" by our own son.

:-)

 

He remains in Illinois until Friday so we can work out the details together

and try to get used to the idea of being home without our baby.

 

Please continue to pray for him as he processes through what has happened.

He is so little, and it is hard to understand.

Please pray for us as well as we plan the next few weeks

and as we continue to miss our sweet baby boy.

Thank you.

All Things New

Then I saw a new heaven and a new earth,

for the first heaven and the first earth had passed away, and the sea was no more.

And I saw the holy city, new Jerusalem, coming down out of heaven from God,

prepared as a bride adorned for her husband.

And I heard a loud voice from the throne saying,

“Behold, the dwelling place of God is with man.

He will dwell with them, and they will be his people,

and God himself will be with them as their God.

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.”

Also he said, “Write this down, for these words are trustworthy and true.”

And he said to me, “It is done!

I am the Alpha and the Omega,  the beginning and the end.

To the thirsty I will give from the spring of the water of life without payment.  

The one who conquers will have this heritage,  and I will be his God and he will be my son.

  
(Revelation 21:1-7 ESV)

Service Details

We want to celebrate our baby boy's life.

And, you're invited.

University Presbyterian Church

Las Cruces, New Mexico

Saturday, October 29th at 3pm

We will update if things change.

Thank you so much for praying.
This joy we feel in the midst of sadness is definitely not of us.
God is so good.

Caleb and Grief

We couldn't stop squeezing our big little boy today when we first saw him,
and he couldn't stop giggling.
Words can't express how wonderful it is to be with him again.

This afternoon, we gathered Caleb together with his seven cousins.

We sat in a circle, and Brandon shared again the story of Jude's life.

The children were sad.  Some cried and some asked questions.

They asked such good questions.

Caleb's reaction was sweet.  He said again and again, "Ohhh..."

And then he asked, "Why did Baby Jude die?"

"Why won't we be able to see him for a long time?"

"Why can't I be with my brother?"

"Can we buy another baby?"

"And can we name him Jude?"

After we talked with the kids and heard their questions,

Brandon asked if anyone wanted to pray.

Immediately, Caleb raised his hand.

"Dear God, thank You for Baby Jude.

Thank You for his surgery.

Thank You for (he proceeds to name everyone in the room.)

In dear God name, Amen."

We are just beginning the process of grieving and mourning our sweet, sweet baby.

And, we felt that the Lord gave us a good start with Caleb today.

Thank you for praying.

And as we enter this part of the journey,

I don't want to forget a thing.

I find myself working to remember

the feel of holding his tiny, flexible little hand

or stroking the soft hair on his head.

I want to never forget his sweet, sweet scent

and the softness of the skin on his neck and back.

I want to hold on to what it felt like to kiss not only his sweet, soft cheeks

but also the tape that kept the tube in place that allowed my baby to breathe.

I want the weight and warmth of his body the times I held him

to be burned forever in my memory.

Lord, thank You again for the gift of our baby.

Thank You that You gave us the name Jude Matthew

knowing before we even imagined

how much You would be "praised" through his life...

and just how much of a "gift of God" he would be to so many.

 Amen.

Thank you.

Sitting here in our kitchen,  I had turned on the computer to write a post to share about our first day without our littlest.  Instead, we have spent the last hour reading through tears the incredible messages you have written to us on here and on Facebook...and there are still so many yet to read.  We are humbled and grateful to be the parents of a little boy whose life touched so many others.  Thank You, Lord.

It is late, and in 5 1/2 hours, we board a plane to Illinois.  Please pray for Caleb as we begin the grieving process with him. We are eager to see him and our family.  As of now, we are tentatively planning a service for Saturday.  We will update again soon.  Right now, my bed is calling.

Jude's nurse Susie shared this with me tonight. It's beautiful.

67 Days

For you created my inmost being;
   you knit me together in my mother’s womb.
I praise you because I am fearfully and wonderfully made;
   your works are wonderful,
   I know that full well. 

My frame was not hidden from you
   when I was made in the secret place,
   when I was woven together in the depths of the earth.
Your eyes saw my unformed body;
   all the days ordained for me were written in your book
   before one of them came to be.

Psalm 139:13-16

Our precious little gift from God met Jesus tonight.  The Lord gave us 67 very sweet days with our baby boy, and we are thanking Him tonight for each one of them.  

When it became obvious his little heart wasn't going to make it through the night, we chose to spend the time we had left together with him in our arms.  We held him.  We rocked him.  We sang to him.  We sang to the Lord.  We cried.  We prayed.  We praised.  And, we thanked God for him.  

Our hearts are filled with sadness, gratitude and joy.  Jude could have passed away in the cath lab yesterday, but he didn't.  We had another day together to enjoy and love him.  And tonight, we were able to have the sweet hour to say goodbye and tell him again and again how much we love him...how proud we are of him...and how much we thank God for him.  We told him again how many people love him and have prayed for him.  We told him of what we knew awaited him as soon as he left our arms.  And, we told him that we would see him again.  

Our baby lives.  He lives more fully than any of us can ever comprehend or even imagine.  He is free...untethered by the lines and cords and tubes that bound him.  And he is His.  

Thank You, Jesus.  Thank You that death is not the end.  It is only the beginning for those who follow and trust in you.  Please, may our baby's life point others to You.  May our baby's sweet story drive those who hear of it to the cross.  May the little one whom you so wonderfully created draw us all to the One we were created for: You.  Thank you so very, very much for the precious gift of Jude.  Amen. 

Our Little Fighter

Today...

I am not sure how to describe today. I guess I can start off with saying that I am grateful to be on the closing end of the day.  And that I am grateful for the ways the Lord walked us through...and preserved my baby's life.

Jude's blood pressure problems worsened throughout the night.  By morning, his blood pressures were super low and his white blood cell count had rocketed to 57,000.  Oxygenated blood wasn't  pumping well throughout his body, and we could no longer feel his pulse in his feet.  It quickly became evident that our little guy is battling a pretty massive infection.  So, the doctors quickly began to treat him for meningitis. And, we were told that he might not survive this infection...that he might not survive beyond today. 

An echocardiogram showed a heart that looked basically the same as it had been looking lately.  That indicated that it wasn't a change in his heart that was causing the new problems.  There was, however, more fluid accumulated in the area surrounding his heart...most likely caused by the fluid shifts he has been having with his kidney issues. After the cardiologists looked at the images, they decided that they would take him down to drain some of that fluid off with a needle.

After accompanying our little guy downstairs as far as they would let us, we left him at the cath lab and went up to wait in Jude's room.  We were told that the procedure would be about thirty minutes.  While we waited, we prayed.  We took turns reading psalms.  We prayed some more.  I took some pictures of his room.  And we waited.

Thirty minutes turned into an hour.  An hour turned into two.  Eventually, we were told he would be up shortly.  Just before we saw our baby, the cardiologist who performed the procedure came up to let us know how things had gone.

This is what she told us:  Our little boy was doing okay, but he had scared everyone.  Soon after we had left Jude downstairs to come up and wait, they went to move him on to the table where they would be performing the procedure.  As soon as he was on the table, his heart rate and blood pressure dropped significantly and his sats plummeted.  Immediately, the cardiologist began performing CPR.  Jude was coding.  After five minutes of chest compressions, he started to stabilize.  They then proceeded with the procedure.

Soon after he was back in his room, he opened his eyes and looked around at us.  I can't tell you how sweet it was to see our little boy responding to us after he had just been through such an ordeal.  I can't tell you how much I love those little eyes.  Such sweet, sweet eyes.

The rest of the day has continued to be intense, but our little boy is fighting.  He still has low blood pressure, and they are giving him epinephrine along with countless other antibiotics, blood products, and medicines.  He is requiring two nurses for all that he needs right now.  Thankfully, they are wonderful.  We are both staying the night tonight...sharing a bed that is less than the size of a couch.

And now we hope and pray and wait.

Our baby almost died today.  The Lord has given us more time with him, and we are so thankful.  We don't know how long that time will be, but we want to make the most of all the time we have.  The Lord in so many ways prepared us for this.  We didn't know it, but He did.  You can see some of that in this post I wrote in early August.  His fingerprints are all over our baby boy's life...and our journey.

Please continue to pray for us.  We are pretty broken and tired...and grateful.  Please pray that the Lord would guide us in how to love our sweet pea as he needs to be loved right now.  And please continue to pray for our baby's healing.

Thank you.

Requests

I am sitting here tonight next to Jude.  He has had a rough day...the second in a row. 

His white blood cell count went way up yesterday, indicating an infection that still has yet to show itself.  Nothing has grown on any of his cultures except our old friend Stenotrophomonas.  It seems that that little bug really likes to live in Jude's lungs.  Nobody is calling it pneumonia, however.  It seems to just be colonizing.  Please continue to pray for healing and protection from infection.

The skin breakdown on the PD catheter site has now been addressed by a wound care nurse, and so he is being treated for that.  If it doesn't heal, then he will have to go back to the operating room to have the catheter moved to a different location.  Please pray that the catheter site heals. 

The plastic surgeon is hoping to take Jude back down to the OR to move the rotation flap and hopefully seal off the CSF leak.  He will do that no sooner than a week from now.  Please continue to pray for healing for his head.  

Jude is back on peritoneal dialysis.  With the fluid the dialysis has pulled off of him, he has now stopped peeing altogether.  Please continue to pray for his kidneys to heal and to function well.  

After our incredible day on Monday...when Jude did so well after the power wean on the ventilator...he started to have some problems and now he is receiving as much support on the vent as he was before. Please pray that Jude will be able to be weaned off the ventilator.  

He continues to have really low platelets.  We haven't gotten the tests back yet about that yet.  Please pray that they will be able to diagnose the problem and that the doctors will have wisdom as to how to treat it. 

Today, he has struggled with really low blood pressure.  As I sit here, I am looking at really low numbers.  I feel sick just looking at it.  Early on, however, I was told to "look at my baby" instead of just the monitors or the MRIs or the charts.  I love looking at him.  Please pray that his blood pressure will stabilize and that we will trust the Lord with this.  

We bought plane tickets today to go get Caleb and bring him back here for a week.  We are super excited at the idea of seeing our big boy.  Would you please pray that the Lord would bless our trip and the timing of it all?  Brandon is going to fly out to get him on Halloween, and I am going to take him back a week later.  That way, one of us will be here with Jude as well. Soooo excited and grateful.

Thanks so much to all of you who continue to read this blog and pray for our baby boy.  We are so thankful to the Lord for the blessings He is pouring out on us in the midst of the biggest trial of our life.  Thanks for being a part of that.

Hebrews 4:16

Sundays vs. Mondays

So, it seems that we have a pattern here.
Lately, Sundays have been rather challenging.
But, Mondays have been significantly better.  :-)

While the issues we shared yesterday continue, we took a sweet step forward today.  This morning, Jude's doctor played with his ventilator settings.  He basically switched things up so that Jude gets similar support but has to take many, many more breaths on his own.  Our baby performed wonderfully.  He maintained a similar respiratory rate to what the machine was making him do yesterday, only he initiated the breaths on his own.  Not only that, but he seemed infinitely more comfortable today than he did yesterday.  The difference was amazing. 

We are so thankful for this step forward.  The doctor even mentioned possibly attempting to extubate him on Wednesday or Thursday.  Now, I know my baby and that things hardly ever go as planned with him.  But, we would LOVE to see him off the ventilator.  Please pray that Jude continues to improve in this area.  Getting that tube out would really help in his overall healing.

We have never heard him cry because his vocal cords are suppressed by his breathing tube.
I long to hear my baby's voice.

In other news, the little guy has some wound issue problems at the site of his PD catheter.  Please pray that the skin breakdown would stop and that healing would happen.  Better yet, please pray that they would no longer need the PD catheter and he could come off of dialysis.  Please continue to pray for his kidneys.  And while you're at it, please keep praying against infection and for healing for his head wound.  Thanks.  :-)

Brandon and I decided to go see the movie Courageous tonight.  If you haven't seen it, go.  Go now.  Turn off the computer and go see this movie.  You won't regret it.  It just might change your life.  Or your family.

Disseminated Intravascular Coagulation

The second morning of Jude's life, he was diagnosed with Disseminated Intravascular Coagulation (DIC).  It is essentially what led to the bleeds on his brain.  I didn't write about it when it was happening because I didn't understand it.  I still don't...really.

But, I am being forced to understand it better now, as it seems that Jude is in DIC again.  This time, it is a more mild state of DIC...but it is concerning.

DIC occurs when small blood clots are formed inside the blood vessels all throughout the body. Because those blood clots use up all the platelets and proteins, the blood doesn't clot like it should and bleeding occurs.  In Jude's case, the bleeds happened in his brain.  Currently, the doctors don't believe that he is at risk for similar bleeds.

So, Jude can't keep his platelets up because his body is consuming them.  And, because of the numerous transfusions he has been getting lately, it seems that he might be developing antibodies to the donors' platelets.  A test has been sent out and we will hopefully know soon.  I have no idea what treatment might be if that is the case.

Apparently, this too can lead to kidney failure.  Jude had to go back on dialysis tonight because he wasn't peeing enough fluid off.  He swelled significantly today.  We also learned that he has a urinary tract infection.  Poor little guy. 

Our precious baby is really, really sick.  There are so many complicated issues, and they all affect one another.  As you can imagine, we are struggling.  It's so painful to see our little man like this.  Please continue to pray for us. 

We still don't know what our future holds...what Jude's future holds.  But, we know the One who does.  We know the One who holds the future...and our baby...in His very capable, very loving hands. 

Tonight at church, we sang the song The Solid Rock.  The lyrics go, "On Christ the solid rock we stand.  All other ground is sinking sand."  Jesus is our rock.  Jesus is our firm foundation.  And, He is with us in this storm.

The Solid Rock

My hope is built on nothing less
Than Jesus’ blood and righteousness.
I dare not trust the sweetest frame,
But wholly trust in Jesus’ Name.

Refrain

On Christ the solid Rock I stand,
All other ground is sinking sand;
All other ground is sinking sand.

When darkness seems to hide His face,
I rest on His unchanging grace.
In every high and stormy gale,
My anchor holds within the veil.

Refrain

His oath, His covenant, His blood,
Support me in the whelming flood.
When all around my soul gives way,
He then is all my Hope and Stay.

Refrain

When He shall come with trumpet sound,
Oh may I then in Him be found.
Dressed in His righteousness alone,
Faultless to stand before the throne.

Refrain

Unexpected Blessings

While talking with the hematologist today, he said something about how difficult our road has been.  I responded by saying something along the lines of: "Yes, but there have been a lot of really sweet times as well."  To which he replied, "Tell me about that."  So, I told him.  :-)

When people hear or read about our journey, they often feel sad for us.  Yes, there is much to be sad about.  We don't want our baby to ever feel pain or discomfort.  We miss our firstborn and desire wholeheartedly to be with him.  We miss our friends back home, and our cat is pretty lonely. 

But, that's just part of the story.  In the midst of this, there have been way too many blessings to count.  Not only are we getting to know so many truly wonderful people in this hospital, we are experiencing the Lord in ways we never would otherwise.  For example, in Jude's hospital room, there is a growing wall display of cards sent from people who are tangibly showing us that love...some of whom we have never met.  In addition, people have written us to tell them how Jude's little life is affecting their own.  A friend of mine even wrote me recently to tell me that our baby has encouraged her in a decision to adopt. 

And today, a cousin whom I have not seen since I was a kid, flew out here with her husband to spend the day with us.  Angie and Chris wanted to come out just to see us and let us know how much we were loved by her side of our family.  Isn't that incredible?  We had such a great time with them.  Thank you, guys!

We are fervently praying for our little man's healing.  As we wait, we rejoice in the small steps and are thanking God for all the blessings He is pouring out into our lives along the way. 

Please join us in praying...

• for his platelets.  His body seems to be consuming them.  Please pray that his little body will produce and maintain the necessary amount.
• for his kidneys.  They stopped dialysis today!!!  Praise God.  His urine output really needs to increase significantly, however, in order for that to continue.  Please pray he pees a lot.  :-)
• for his lungs.  His respiratory muscles are weak, and the doctors are not having a lot of success trying to wean him off the ventilator.  Please pray that he will learn to breathe on his own. 
• for his digestive system.  He is now getting 5ml an hour of breastmilk.  We are so proud of him for digesting so well.  His poop looks great!  Please pray that he continues to digest well.
• for his head.  Please pray that his head incision will stop leaking.

Chris, Angie and One of the Two Sweetest Babies in the World :-)

2 Months

Our sweet Baby Jude is 2 months old tomorrow.  In honor of our little man's August 15th birthday,
I thought I'd list 15 things you might not know about him.

• He was born with light hair, and now he has dark hair and eyebrows.  Caleb was born with dark hair and is now blonde.
• He really does not like dirty diapers.
• He likes his room to be dark.  Often when we dim the lights, he opens his eyes. 
• He drives his nurses crazy with his incredible skills at wiggling out of his head dressings.  He is very intentional about it.  
• He has tiny little balls for toes.  They are precious.
• He has beautiful blue eyes.
• His eyelids flip inside out a little when he is swollen and crying.
• He swings his arms very purposefully at people who are doing something he doesn't like.
• He likes back scratches...just like the entire Pelton side of his family.
• He has a sweet little button nose. 
• He likes Goodnight Moon and The Jesus Storybook Bible.
• He doesn't like oral care, but he is well prepared for the dentist.
• He might be getting teeth pretty soon.  
• He is super flexible.
• He is a beautiful gift from the Lord, and we are so thankful for him. 

This is Grace

When Matt Hammitt visited on Friday, we talked about a man named John Knight.  We had heard about him through a sermon John Piper preached the day before we learned about Jude's diagnosis (see my post here).  John Knight runs a ministry for people with disabilities at Bethlehem Baptist Church and keeps a blog at theworksofgod.com.   Matt told us that he wrote the song This is Grace after seeing this beautiful video about him and his family:

p.s.  The music on the blog is a lot louder than the video.  You can turn the music off at the bottom of the page.  
    


This is how God gripped us.  This is how God was merciful to us. He has given us something very, very precious through our son.  Our son is a gift. And it is because he has given us this little boy who is so different from every little boy I've ever met...I've never met a boy like Paul...that he has done the work in my heart, your heart, so many other people's hearts. And I want to tell that story.  This was grace.  This was grace.   -John Knight

We don't know yet the extent of Jude's needs.  But, we do know that God will enable us to face whatever challenges Jude might have.  Just as He is now.  And, we know that He will bless us abundantly through those very same challenges. We know that this path we are on is His good plan. This is His grace in our lives...and we are thankful.

Our littlest blessing continues to improve some.  He is still tolerating his milk well, and they even increased a little the amount that he is getting.  His urine output decreased a little, but the dialysis has pulled a lot of fluid off him.  So, he is significantly less swollen and lost an entire pound yesterday.  He is having trouble keeping his platelets up, so they are running some tests to determine what is going on.  Please pray that they can figure out why he has had to receive so many platelet transfusions...and that his platelets will stabilize. And, please continue to pray for overall healing.

We're so thankful to be able to be here with Jude.  Every day with him is precious, and we are cherishing the sweet, quiet moments.  What a blessing this journey has been to us.  Thanks for being  a part of it.

Sometimes Sad

Sweet Jude...still swollen from surgery

This is Brandon tonight writing in Jude's room while Mandy sings to him :)

The sadness in our situation tends to hit home for me about once every seven to ten days.  Yesterday was one of them.

I dropped Mandy off at the hospital around 11am and ran a few errands.  I felt like I needed a little time on my own getting a few things done.  After going to the bank and Verizon I arrived at the hospital around 12:30pm.  There was a lot going on and Jude was having a tough day.  He still wasn't making the kind of progress the doctor's were hoping for and he seemed to be in more pain than normal.  Fifteen minutes passed and Jude wasn't settling down.  He was scrunching his face a lot... both his anger and "I'm pooping" face... hard to know which sometimes.

The nurses began doing a sterile procedure so we moved outside Jude's room to talk with the PICU doctor.  Looking in I could tell that Jude was gagging now.  They had just begun giving him pedialyte through his NG tube that morning, the first liquids he had had directly into his stomach since the heart surgery on Friday.  There's not much that compares to watching your baby gag and eventually throw up.  Painful!  Thankfully Jude didn't throw up this time but he continued to gag some off and on.

Feeling uneasy and frustrated while hearing the update and seeing how Jude was doing, I decided to go down to the cafeteria and get lunch once we finished the update from the doctor.  I picked up my traditional bowl of soup (green chile and chicken yesterday :) ) and a few tacos then made my way to the outdoor patio.

Once I sat down to eat lunch, I received a text from my brother wondering how I was doing.  While I was replying I got some clarity on what I was thinking and feeling.  Normally I see Jude as a strong, little man, a fighter who keeps persevering day after day by God's grace.  He's endured so much and it amazes me how he keeps going.  I know in some measure he keeps fighting because of so many who pray for him.  What a strong, little guy!

What was different today was that I just felt sad for him.  I thought of what he's been through and what he was enduring and I felt pity.  I began to sob some, stopped and took a few bites of green chile soup and then sobbed a little more.  I sat there for a few minutes staring at the grass through tears.

While sitting at the table and eating a little more of my lunch, my mind drifted off and pondered how painful it must have been for the Father to watch His Son - His one and only Son - go through immense pain and loneliness on the Cross.  Pain and loneliness on a cosmic level, beyond anything I'll go through.  It didn't comfort me that much in the moment but I sensed I was not alone in the experience, that there is One who understands.  I wasn't alone at that table either.  I never am... and neither is our little guy.  Thank you, Father, for never leaving or forsaking me.

Tonight, we are thanking the Lord that:

• Jude has begun taking breast milk again
• he has needed less support on the ventilator
• he went from virtually no urine output on Saturday and Sunday to healthy, normal urine output the last two days :)
• we are cared for by you who read about Jude and pray for us

Tonight, we need the Lord to generously give:

• continued progress to Jude in his feeding, healing, peeing and breathing
• strength and perspective to continue on and enjoy this chosen path for us

WE APPRECIATE YOU!!

Whole Hearts

If you have been following my blog for a while, you have heard about Matt Hammitt. I have written about him in this post and this post and this post.

On Friday he came to visit us.  He had heard about us through our friend Kyle's cousin, Justin.  Justin has read our blog, and he asked Matt to visit on his Albuquerque stop of Sanctus Real's tour with Casting Crowns and The Afters.

His visit was really fun and such an encouragement to us.  The circumstances that led to it were so clearly orchestrated by the Lord, and it was really good to get to tell him how much his album Every Falling Tear has meant to us.

Matt and Sarah have started something called the Whole Hearts Foundation.  Because 1 out of every 100 babies born is born with a heart defect, they have started this foundation to support the families. The Lord is moving powerfully to work out the details, and it is exciting to hear what is happening.  And in the middle of beginning a foundation and touring the country with his band, Matt likes to show up at hospitals and visit families.  :-)

Thanks, Matt, for visiting and writing an incredible album that God is using to speak to countless families.  Thanks, Sarah, for being so incredibly supportive and awesome.  Thanks, Kyle, for being so great and bringing Matt.  And thanks, Justin, for reading our blog and praying...though we have never met you.  :-)

Check out more on Matt and Sarah at bowensheart.com.
Check out Every Falling Tear on itunes.  It is one of my favorite albums of all time now.  
And check out Justin's ministry to families of children with special needs, The Elisha Foundation.

Jude Update: 

He had a really good day.
He is peeing much more!  Praise God.  His kidneys are getting better.
His blood pressure has looked good and is pretty stable.  He remains on Dopamine.
His temperature has been good still, and there have been no signs of infection.
He also started some feeds again.  Pedialyte for now, and hopefully breastmilk soon.

And I love this quote from Matt and Sarah's blog from Sarah's mom:

"Who would have thought that one broken heart could help make so many whole?"

A Better Day

We all had a better day today. 

It is amazing what sleep can do. 

It is even more amazing what prayer can do. 

Thank you so much for praying for us.  God is answering.

Thank you so much for encouraging us.  We feel so blessed by you all.  Thank you.

The comments, messages, texts and emails we received today have been incredible.

I think it will take a few days to process through them all.  You should read them.  Good stuff.

Thank you.  Thank you.  Thank you.  Thank you.  Thank you.

Thank you for letting Jesus love us through you.  He is so beautiful in you.  :-)

Jude Updates:

• He is still unbelievably cute.
• His blood pressure is more stable, and he is peeing a little bit more.
• He was more awake today, and we had some sweet quality time with him.
• The plastic surgeon said that the head wound is stable and we will continue to watch it.
• If it doesn't heal on its own (please pray it does), then we will go back to surgery in 3-4 weeks.
• The mystery black stuff on his dressing yesterday remains just that...a mystery.  Weird.
• They found some bacteria in his lungs again.  Please pray for him to be infection-free.
• His white blood cell count was down to 9000!  We like that number.
• He still is receiving great care from his doctors and nurses.  
• Please keep praying for the needs from yesterday.  They continue.

Caleb Updates:

• He is still unbelievably cute. 
• He is still loving being with his cousins. 
• He is in Awana Cubbies. 
• He and his cousin Seth are apparently inseparable.
• He isn't a huge fan of talking on the phone and is always eager to go play.
• We're glad that he isn't missing us too much.
• We are so thankful to Christine and Tony and Jeff and Julia for taking such great care of him.
• We love that he has this time to get to know his cousins so well.
• Please keep praying for him to thrive there.  He is.  

We are still tired.  We miss Caleb a lot too.
Earlier, we drove by a fountain he had played in the week before Jude was born.
I started to picture him laughing and running and playing,
and I found myself shutting off the thoughts to hold back tears.  Tonight, I let them flow.
I would really love to squeeze both of my babies together.
But, the Lord knows the best timing.
And this is still part of Caleb's story.  Just as it is Jude's.
We're so thankful that while our vision is limited,  His is not.
He sees it all.  He is the God who sees.

Today was a better day.
But as our friend Holly reminded us,

a much better day is coming.

A day when Jesus will make all things new.
A day when things will be restored forever to the way they should be.
A day when glory "far outweighs" these trials, even though now they feel so heavy.
A day when not only will Jude's broken body be healed...but us and our struggles with sin as well.

Thank You, Jesus.
We look forward to that day.

Complications

Although Jude's surgery was successful, there have since been many complications.  Many of those complications seemed to show up today. 

Jude's aorta is narrrowed again.  The purpose of his surgery was to remove a very narrow part of his aorta.  That part was successful, but the suture (stitch) line has swollen now.  And so the aorta has narrowed again...only this time he doesn't have the ductus anymore.  This is concerning.  It is hopefully temporary as it could just be inflammation as a result of surgery.  Please pray for that part of his aorta to heal and to widen as it should.  If not, he could have to go back into surgery.

He is having blood pressure issues.  It has been low, and they had to put him on dopamine again.  He has stabilized some tonight. Please pray that his heart would pump blood effectively in spite of everything.

His left lung collapsed again after surgery.  They had to move it out of the way for the surgery, and it is now having problems.  Please pray for his lung to inflate as it should...and for him to be able to get off the ventilator soon.

He has seemed too sedated today.  They would like to see Jude more awake than he has been.  We would too.  Please pray for guidance for the doctors as they seek to keep him comfortable...yet with  reasonable amount of awake time.  It is a difficult balance.

His kidneys are struggling to function well.  This was expected, which is in part why he is on peritoneal dialysis.  He hasn't been peeing at all.  Please pray for his kidneys to heal and function well.

There is some fear of infection still.  Tonight, we found that the dressing around his femoral line (the line going into his bloodstream near his groin) was covered in some mystery black stuff.  There was question as to whether it was poop (though it wasn't the color of his poop) or something else...possibly a leak.  Poop would be very dangerous as far as infection is concerned.  Please pray for his body to be infection free.

His head leaked a lot today.  We have been told multiple times that it might not be CSF.  It is hard not to believe it though.  Please pray for his skin and dura to heal.  His body should heal better now that he is off the PGE.

So, Jude is still really sick.  It was expected that he would get more sick after he had his surgery.  He seems to be even more sick, however, than what they were expecting.  Please continue to pray for our little man's body as he recovers. 

Please keep praying for us as well.    With three nights in a row spent at the hospital, my sleep has been limited in both quality and quantity.  The events of Friday and Saturday caught up with us today, and we started what turned out to be a difficult day on empty tanks.  We need perspective and strength and perseverance.  And, we need truth.  If you have a Bible verse, quote or song you'd like to share with us,  we would love it.

Thank you so much. 

The One About the Burglary

We received a call this morning that our house had been burglarized.

Apparently, it was only a matter of time.

Our nurse said that it's not uncommon for it to happen to people staying here with their kids.

Someone kicked our front door in and ransacked our bedroom.

Because of a misunderstanding on our part,

we thought that our social security cards, passports, and birth certificates had been stolen.

I spent much of the morning trying to start the process of preventing identity theft.

Instead, we found out that only Brandon's hunting rifles had been stolen.

Although we have lived by the border for seven years now,

we have felt relatively untouched by the violence happening an hour south.

That's not true anymore.

By the look of our room they seemed to be looking specifically for guns.

Weapons are trafficked across the border all the time.  It's a hot market.

And apparently they thought our house might have some.

We are very grateful that nothing else was taken.

But, I wonder about the guns...

Who is going to get them?

What will they be used for?

Please pray that the thieves would be apprehended along with the guns.

Brandon is home tonight getting things in order.  I am here with Jude.

He is doing great...heavily sedated and sweetly sleeping.

And, he is as cute as ever.

   

There are lots of things that we're thankful for today:

The four of us are safe.  When we found out, that was my first thought.  Nothing else mattered.

Millie, our cat, is okay.  The door wasn't left open, so she didn't escape.  She is acting scared though.

The door that was broken was waiting to be replaced anyway.  I can get a pretty new door.  :-)

Friends stopped by just as we were finding out.  They ended up being Brandon's ride home.

The burglary probably happened yesterday, but that would have been a bad day to find out.

Two men were arrested in our neighborhood for car burglaries yesterday.  See article here.

Today, I have felt the Lord's care for us.  He is taking care of the details.

Please check out the "Please Pray" tab at the top of the blog.

I finally updated it.  As I mentioned yesterday, he still has a long road ahead of him. 
 Some of that road includes: 

The little boy still has to learn to eat.  He also has to be weaned off the ventilator.

His kidneys need to start functioning again.  And, he really needs to stay infection free.

Thank you!!

A Beautiful Sight

This medicine kept our baby alive for 53 days.

We thank God for it. 

And, now we thank Him that it's turned off.

Little Boy is doing well tonight.

He still has a long road ahead of him,

and there is still so much to pray for.

But tonight we are just praising God

and enjoying our little boy.

Surgery Update

We are so thankful to the Lord right now. 

While we were in the waiting room, we received a call every hour on Jude's progress.  All along, the man on the other end of the line would say, "Things are going fine."  At one point, he said that his aorta was large and so it was taking longer.  That bothered me, not knowing what that meant.  It seemed that they had been surprised by the size of his aorta. 

Then the Lord reminded me:  He was not surprised.  He formed him.  Jude's frame was not hidden from Him.  The Lord's eyes saw Jude's unformed body.  He knew about the aorta long before anyone saw it on an echocardiogram.  And Jude's life has never been in the surgeon's hands.  His life is in the hands of his Maker.

When Dr. Lagerstrom came out to talk to us, he said that the surgery went well.  Baby Boy is doing fine, and we are now waiting for them to let us see him.  The man on the phone had been mistaken.  His aorta was small. His pulmonary artery was large, and so they put a band around it.  They had thought they might have to do that.  And, the PA band will give Jude more months to grow before he has to have his next heart surgery.

We are so thankful for a successful surgery.  We are so thankful for this hospital and Dr. Lagerstrom.  And, we are so thankful for all of your prayers.  I cannot tell you how much they mean to us.  There are seriously no words to express just how much we have been carried through all of this by all of you walking with us on this journey through prayer and encouragement. 

THANK YOU!
Love,

us

"Shout for joy to the Lord all the earth.

Worship the Lord with gladness;

come before Him with joyful songs. 

Know that the Lord is God.

It is He who made us, and we are His;

we are His people, the sheep of His pasture.

Enter His gates with thanksgiving

and His courts with praise;

give thanks to Him and praise His name. 

For the Lord is good and His love endures forever; 

His faithfulness continues through all generations."

Psalm 100

Surgery Tomorrow!

Please pray for Dr. Lagerstrom. 

Tomorrow morning at 7:30am Mountain Time, 

he will be performing surgery on our littlest man's heart. 

He doesn't feel great about the timing,

but the threat of another infection

as well as the detrimental effects of the continued use of prostaglandin

are leading them to move forward with his surgery. 

Prostaglandin (PGE) is the medicine that is keeping the ductus open.

The ductus usually closes when a baby is born and begins to use his lungs. 

Our nurse today told us that she has never seen a child on PGE for as long as Jude has been on it. 
He was supposed to have this surgery on Day 2 of life, 

but ensuing complications have prevented it. 

So, we're extremely excited and grateful that he's going to the operating room tomorrow. 

Please pray:

Pray that the surgery will be very successful.

Pray for wisdom and guidance for Dr. Lagerstrom and the doctors and nurses involved in his care.

Pray that we will trust the Lord in the coming days.

I will remember the deeds of the Lord;
yes, I will remember your miracles of long ago.
I will meditate on all Your works
and consider all Your mighty deeds.
Your ways, O God, are holy.
What God is so great as our God?
You are the God who performs miracles;
You display Your power among the peoples.
With Your mighty arm You redeemed Your people,
the descendents of Jacob and Joseph.

Psalm 77:11-15

p.s. A professional photographer posed the group above for some upcoming billboards.

I was the annoying amateur who grabbed my camera and distracted the subjects.  :-)

Albuquerque International Balloon Fiesta

In Indiana, fall is marked by the changing colors and smells of the leaves.

In New Mexico, fall brings with it the smell of roasting green chile

and the beautiful colors of the hot-air balloons.

Early Sunday, we drove to our friends Kyle and Chrissy's house.

From there, we all rode bikes to see hundreds of balloons lift off for the mass ascension.

It is an unbelievable experience to walk among the colors and excitement of the balloon launch.

I absolutely love this state.

Jude is "penciled in" for surgery on Friday.

We are grateful and eager for that to happen,

but we are still trusting that God would guide everyone involved according to the best time for him.
 He alone knows what exactly is going on in our little man's body.

And, we are so thankful that Jude is in His powerful hands.  

Thanks for praying with us.

p.s.  The storyboards I used above and below can be found here.  It's a great site!

Waking Up

This is Brandon :)

We (Mandy and I) know that there is nothing special about us in comparison to anyone else.   We are broken and sinful and, most days, we experience that truth to the core of our lives.  So many people have spoken kind and timely words to us.  Thank you so much for your words of encouragement!  The truth, though, is that we are desperate for God's grace and goodness in our lives each day, each hour, each second.  We fall apart when we're not depending on Him and others.

Some of you have wondered why this has happened to us.  Why little, precious Jude?  Some of you don't think this seems fair.  I hope you'll consider Jesus' response when he was asked something similar.

Jesus was with crowds of people and they were questioning Him about why bad things happen to people.   Jesus specifically mentions eighteen people who died when a tower fell on them.  "Did they do something to deserve this?" the people asked.  In essence, they wondered, "Why them?"  Jesus' response most likely was a shock to his listeners, "No, I tell you; but unless you repent, you will all likewise perish!"

Recently, as I've pondered Jesus' answer to the crowd's question of "Why?", I've come to see the wisdom in his response.  He doesn't give them a direct answer as to why suffering happens, just how we should respond when it does happen.  Jesus' first response of "No" is meant to show us that tragic things can come to people regardless of whether they are good or bad in the eyes of the world.

Then Jesus says that at least one way we should respond to tragedy, from the tsunami in Japan to the Hurricanes on the East Coast to the suffering of little children like Jude, is to WAKE UP from our slumber toward God.  That's why Jesus uses the word repent.  Tragedies remind us that life is fragile, we aren't guaranteed our next breath and that we will all die (whether at a young or old age or somewhere in between).   Because that is true, Jesus warns, get right with God now and then get on His path for your brief life!  Rethink and remake your priorities now.  Don't wait until tomorrow.  Turn away from the things we have our fingernails dug into so tightly and begin opening our hands to receive all that Christ wants to give.  "Cease striving and know that I am GOD." Psalm 46:10

The ironic thing is that getting right with God, just as the verse above alludes to, is more dependent on our ceasing some things than doing something.  We can stop performing for God and others.  We can stop trying to make everyone happy with us because He is already pleased with us in Christ.  We can stop worrying about what others think because it truly, deeply matters most what He thinks.  If we are in Christ, if we are trusting His perfect record before God and not our imperfect attempts at pleasing God, then we can finally relax and rest in Him.

This is exactly what's happening to us.  He's waking us up.  Our grip on the things of this world are lessening.  Thank you, Lord!  We are savoring Jesus more and more.  Because of that He is giving us more and more love for and enjoyment in Jude (and others too).  As we've said many times, we don't know how much time we have with him.  What we are learning is that we need to enjoy each moment with Jude and view it as a precious gift.  What a gift he is!

Would you join us in the prayer below?  We're so thankful for you!!!

Lord Jesus, continue to WAKE US UP!  Let us not live in a kind of slumber and fog that guarantees we will primarily live for trivial things when there's so much more, when there's You.  Amen!

Sweetness

I seriously LOVE this little guy.
He is such a blessing to us.
And, today was much better.

• He was awake almost all day.  So, we played.
• His numbers were down.
• The neurosurgeon isn't worried about his leaking and thinks it can still heal.  Please pray that it does.
• They found bacteria in the fluid that is draining from his PD catheter.  So, he is receiving antibiotics through dialysis starting tonight.  Please pray for that infection to clear up. 
• His milk is digesting really well.
• Geoff, an old friend of Brandon's, came out to visit.  That has been a lot of fun.
• We love his nurses.
• Surgery is obviously not today.  We will continue to wait.  The Lord knows when, and we trust He is guiding the doctors.

Please keep praying for our little guy's healing.  Your prayers, messages, gifts, calls, texts, etc.  have been such an encouragement.  God is very much at work, and we're thankful for how He is using all of you in our lives.  And, in response to the questions, bracelets can be purchased through emailing our sweet friend, Jenae, at jenaeo1217(@)gmail(.)com.  THANK YOU!

For you, Dad.

Wide and Long and High and Deep

Today was a difficult day for me.  When we got to the hospital, we learned that Jude's white blood cell count had increased as well as his CRP.  He had a fever as well.  An hour or so later, we saw that his wound was leaking...for the first time in four or five days.

The plastic surgeon who has been following up on Jude's wound is out of town for at least a week.  I have felt apprehensive about that.  The Lord had to remind me today that it is not the surgeon I am to trust in.  He may be talented, but he is a man.  It is the Lord who gave him those gifts and it is He who will heal Jude.

We don't know when his surgery will be.  He has not looked as well the last few days as he did last week.  So, it will not be tomorrow.  The cardiologists and surgeon will discuss him tomorrow, and we will hopefully know more soon.

As we continue to wait and sit at the bedside of our sweet, sick little baby, the Lord continues to work in our hearts.  I felt a significant need for church tonight, and the Lord blessed me there.  This well-known verse struck me when it was read during worship:

"For this reason I kneel before the Father,

from whom his whole family in heaven and on earth derives its name.

I pray that out of his glorious riches he may strengthen you

with power through his spirit in your inner being,

so that Christ may dwell in your hearts through faith.

And, I pray that you, being rooted and established in love,

may have power together with all the saints,

to grasp how wide and long and high and deep is the love of Christ,

and to know this love that surpasses all knowledge -

that you may be filled to the measure of all the fullness of God.

Now to him who is able to do

immeasurably more than all we ask or imagine,

according to his power that is at work within us,

to him be glory in the church and in Christ Jesus throughout all generations,

for ever and ever!  Amen." 

Ephesians 3: 14-21

Brandon started reading King's Cross by Tim Keller.  When he was reading it aloud to Jude tonight, this jumped out at me:  

"Jesus says, 'Follow me.  I'm going to take you on a journey, and I don't want you to turn to the left or the right. I want you to put me first;  I want you to keep trusting me; to stick with me, not turn back, not give up, turn to me in all the disappointments and injustices that will happen to you.  I'm going to take you places that will make you say, 'Why in the world are you taking me there?'  Even then, I want you to trust me."

Please pray that we will trust Him.
Please pray that we will in every way let this journey lead us into His arms.
Please pray that we will grasp how wide and long and high and deep is the love of Christ.
Please continue to pray for our baby's healing and for the Lord's will to be done in his life and ours.  Thank you so much.  

A Good Day

Image Found on Pinterest (click photo for source)

Today was overall a good day. 

The good: 
I spent seriously ALL DAY in bed next to our little guy.
Wonderful friends came to visit us.
Jude is digesting his milk well.  :-D
His CRP and white blood cell count were down.  Yay!
Surgery will hopefully be Monday or Tuesday.  Praying so...
Kansas State beat #15 ranked Baylor.

The not-so-good: 

Jude had a fever off and on today.  Please keep praying.
Our great doctor has to go home to Oregon.
We overslept and missed the Balloon Fiesta. 
Purdue lost to Notre Dame.

Thanks so much for your prayers.  We're doing well. 
Sooooo thankful for you all.  :-)

Shhhh...Don't tell Jude!

It seems that every time we're approaching heart surgery, some complication arises.  Whether it's a subdural hematoma, pneumonia or a cerebrospinal fluid leak, we have had several setbacks in our journey towards this very necessary next step.  So, today as we discussed the timing for his heart surgery, his doctor, Jennie, said "Shhh...don't tell Jude."  We don't want him to get any ideas into his head. 

His CRP level went up some today, but overall our cute baby has been pretty consistent in his numbers and has looked good clinically.  It seems that Jude isn't going to get to an ideal place for surgery, and so Jennie is pushing for surgery on Monday.  Unless something crazy happens, that is the plan as of now.

So, please pray:

• that his body would be free of infection at the time of surgery and that he would be able to have that surgery soon. 
• that he would continue to digest well the feedings he is receiving as I write this.  This is attempt #3, and we are hoping they can continue giving him milk this time. 
• that we would experience still more just how strong the Lord is in our weakness. 
• that the Lord would continue to give wisdom to the wonderful people such as these who are taking care of our littlest:  

Jennie, Jude's doctor, and Rod, Jude's nurse tonight.   Notice the bunny ears.  :-)