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

50 Things

Yesterday was really difficult for me because of all the flashbacks to that traumatic night when Jude was transferred to UNM the first time.  Today, however, turned out to be the complete opposite.  God answered so many of the prayers we have all been praying, and we were blown away by all the sweet blessings.  This ride can definitely be a rollercoaster, and we are thankful that our hope and trust is in the Rock of Ages and not in the doctors or in the progress of our littlest boy...though we are so grateful for both!

Thanks, Lord, so very much for your abundant goodness and your power to work.  Thanks that we are getting to see You move daily as only You can.  Truly, every good and perfect gift is from You. 

50 things I'm grateful for tonight...

Idea copied from my sweet friend, Tasha's, blog. :-)

1. Jude's creatinine was at 0.5 today...an incredible jump and the ideal number for surgery!

2.  The x-ray of his lungs looks wonderful.  The respiratory therapist called it the best in the PICU.

3.  The neurosurgeon was "wonderfully happy" upon seeing his CT scan two weeks after surgery.

4. Our UNM nurse, Melissa, is a good friend of a good friend, Chrissy. God keeps taking care of us. 

5.  The neurosurgeon said that we could go back to Pres today as far as he is concerned.

6.  The ICU doctor wants to keep us at UNMH to watch the incision.  We agree.

7.  My husband is amazing.  This time together has been good...kind of like a really long date.

8. There are cooked meals waiting when we come home to the Ronald McDonald House.

9. We got an hour today with Jude wide awake with eyes open.

10.  Friends came to visit today from Cruces.

11.  I got a box full of cards and gifts from friends from home (Indiana) that made me cry.  Thanks!

12.  Jude has been accepted for Medicaid.  Still not sure what that means, but we're grateful.

13. Our staff team and students of NMSU Cru are amazing.  We love and miss you guys!

14.  Good friends back home are fixing our broken Civic.  Thank you!

15.  We received the cutest little crocheted hat with ears for Jude...and I can't wait for him to wear it.

16.  Our friend's daughter, Ellie, has not had any more seizures.

17. We found a library of children's books in the hospital.  We read lots of Dr. Seuss to Jude today.

18.  I read Are you my Mother? and Barnyard Dance to Caleb over the phone today.  Sweet time.

19.  We can Skype with our little man in Illinois. 

20.  My mom is helping out with the American Red Cross relief efforts for Irene in Vermont.

21.  I had a good follow-up appt with my OB.  So grateful that my body is healing well.

22.  Jude seems to be growing stronger everyday and is becoming more active.

23. The neurosurgeon today called our sweet boy a little fighter.

24.  We saw a smile today.  :-)

25.  There is free laundry at the RMDH, and Brandon did ours today while I stayed with Jude.

26.  We have a Tempurpedic bed here, and it's lovely.

27. We have a nice bed to sleep on in Jude's room.

28.  Good friends back at home are taking care of our house and our sweet cat. 

29. We are lacking nothing right now. God is providing everything.

30.  Jude has had no more problems with blood pressure.  No more dopamine.

31.  Caleb is going to be five in less than two weeks.  It looks like he'll still be in Illinois.

32.  I have not had problems sleeping since I asked for prayer for insomnia a few months ago.
33.  Though Jude isn't eating yet, pumping breast milk has been going really well.

34.  My husband carries around everything heavy for me all day long.

35.  Brandon drives me all around town because I can't currently drive.
36.  We still feel really loved by friends and family...and friends we have yet to meet.  :-)
37.  The prayers of His people are being answered.
38.  Our little boy thrives when we hold him.  His vitals are always great.
39.  Friends brought me papercrafting supplies to make a mobile for my baby.

40.  I have a seriously cute model for current and future photo shoots.

41. The Lord has been really blessing our marriage as we pray and seek Him together.

42.  We are learning more about what it means that He is our Rock.

43. Friends bring us milkshakes from Route 66 Diner and bagels from Einsteins.
44. Caleb has been very well cared for by his aunts and uncles.

45.  Jude has great nurses and has had really great care as well.

46.  We are going to bed early tonight. 

47.  "The Lord gives strength to his people; the Lord blesses his people with peace."  Ps 29:11

48.  "...He who began a good work in you will carry it on to completion in Christ Jesus." Phil 1:3

49.  "My grace is sufficient for you, for my power is made perfect in weakness." 2 Cor 12:9

50.  "But God demonstrates His own love for us in this:

While we were still sinners, Christ died for us."  Romans 5:8

And we're back again...

Jude is now back at UNM Hospital.

Before I explain how he got there, let me review this little boy's journey up to this point:

• Our baby was born at Presbyterian Hospital on August 15. 
• We had already known that he had Down Syndrome and a complete atrioventricular canal heart defect.
• After he was born via emergency c-section due to distress, we learned he had a coarctation as well. 
• The coarctation is another heart defect that needed to be operated on very soon. 
• The AV Canal would wait until he was older...maybe 4-5 months old. 
• As we were originally planning the coarctation repair, we learned he had bleeding on his brain.
• So, he was transferred very quickly to UNM Hospital the second night of his life. 
• They performed brain surgery that night to remove the blood and release the pressure. 
• The surgery was successful...though three other bleeds were left to resolve on their own.
• He recovered for a week at UNM and then was transferred back to Presbyterian for his next surgery.

And that brings us to now:

The last 24 hours have been something of a deja vu experience.  This morning (which I cannot believe was this morning), we learned from the cardiac surgeon what he is thinking regarding Jude's coarctation repair.  His opinion was that the kidneys would probably be okay, but he needed to get the neurologist's opinion on giving Jude heparin while he is in surgery.  The heparin is necessary to prevent clotting in the tubes, but it could trigger more bleeding because it is a blood thinner.  So, he was waiting on her.

Meanwhile, the ICU doctor thought he should investigate further the leaking from the incision.  So, because they weren't able to get a hold of the neurologist at Pres, he decided to call the neurosurgeon over at UNM.  Soon after, we received the news from him that that they were indeed concerned about the seeping and they wanted to evaluate him.  They could not, however, come to Pres.  We would need to be transported instead back to UNM.

Like before, he had to be transported back via ambulance.
Like before, the coarctation repair has been delayed indefinitely.
Like before, it had to all be done very quickly.
Like before, it felt like another step back.
Like before, we were really concerned about the unknowns of what is going on in his brain.
Like before, they had to perform a procedure to drain the fluid from the site of the hematoma.
Like before, we had to wait late at night to hear the outcome.
Like before, we spent much time praying.
Like before, we were grateful the Lord was with our son when we could not be.

After a CT scan, the surgeon was able to drain the cerebral spinal fluid at the incision site.  It was a successful procedure, and he then sewed up the incision again...this time with stitches.  So, that will hopefully end the seepage.  They are testing the fluid for infection...and we will know the results tomorrow.

So, that is where we are at tonight.  Tomorrow, we will meet with the neurosurgeon to learn more about it.  We have no idea how long we will be at UNM or how long it will take for our sweet baby to recover.

Please pray...

• for continued healing of his brain.  The rest of the bleeds seem to be resolving nicely. 
• for healing from his surgery.  We will know more specifics tomorrow as to what is happening to the incision.
• for reduced swelling.  This has been a regular problem with our little guy...and much of it has to do with his poor kidney function. 
• for still lower creatinine levels.  They decreased some today (thanks for praying).  
• for no more bleeding problems.  We would love to have the surgery relatively soon.  He can't be on the prostaglandins forever.  The PGE is what is keeping him alive.
• for Brandon and me.  I was really struggling earlier with the Lord over some of the things that are happening...not just to Jude but to friends as well.  He has been meeting me where I am at, and I am grateful.
• for our friends, Peter and Alana.  Their daughter, Ellie, had an aneurysm in 2009 when she was two months old.  She had a surgery last October that stopped the seizures she was having.  Today, while Peter was visiting us here in ABQ, Ellie had her first seizure since the surgery and stopped breathing.  Peter had to return immediately to Denver to be with his family.  He is now sick as well.  Please pray for Ellie and our friends.  I wrote about them two years ago in these blog posts.
  

THANK YOU SO VERY MUCH!

I am still confident of this:

I will see the goodness of the Lord

in the land of the living.

Wait for the Lord;

be strong

and take heart

and wait for the Lord.

Psalm 27:13-14

p.s. I have apparently used up all my bandwidth allowance because so many people are looking at this blog.  My pics have all been disabled because of it.  :-) I will try to get it fixed soon, but I do want to say in the meantime that we really appreciate you guys following and praying.  Soooo grateful.

Still waiting...

Tonight, I am hanging out with my baby.  There is a "bed/couch" in our room here at the hospital that barely sleeps one, and it is a blessing to sometimes crash here.  It is really hard to go to sleep (or home) when he is awake and alert with his eyes open.  So, it's 3am and I am still happily awake.

We heard through our nurse a little of what the cardiac surgeon is thinking at this point.  We are hoping to finally meet with him tomorrow.  We missed him when he came to talk with us today.  So, I will share what we understand as of now.

There are two main problems with doing the surgery soon:  the bleeding and the kidneys.  I guess when they do the surgery, they use heparin...an anticoagulant.  Using an anticoagulant could cause some problems with more bleeding.  I am not sure yet what exactly to pray for about that...so for now please pray for wisdom for the doctors and that his bleeding problems would be resolved.  As far as the kidneys go, when they perform the surgery, they have to clamp off the aorta for a bit.  The lack of blood flow to his already hurting kidneys can be really detrimental.  Please pray for much improved kidney function and a greatly decreased creatnine level.  It decreased some today...which is definitely something to thank God for!

So, we're not sure what this all means yet.  We know the doctors want Jude to be in the best position for surgery, and we'll know more tomorrow what that will look like.  Please continue to join us in prayer for our precious littlest guy.

Please also pray for me and Brandon...that the Lord would be our rock and our strength.  I had a hard time tonight after talking with the nurse.  This has all been something of a rollercoaster, but God doesn't change.  He stays the same.  He is the One in whom we're placing our hope.  So thankful for Him tonight.

Love you all.
Goodnight.

Thanks

Thank you

for the words shared and the tears shed after our last post.

It means so much to us that you care.

 As the Lord unveils the story of our littlest,

we are so thankful for the friends, family, and even the people we haven't met yet

that He has made such a sweet part of it.  :-)

I fell asleep tonight with my head down on Jude's bed,

and I am planning on heading to my own soon.

So, here is just a quick update on the day:

  

The Brain

His incision started seeping fluid today.  They tested it, and they confirmed it is spinal fluid and that there seems to be no infection.  I guess it happens in about 50% of brain surgeries, but it is strange that it is happening two weeks after the surgery.  They are watching for a fever, which would be followed up with a spinal tap to determine what kind of infection it would be.  Then, they would give him antibiotics.  Please pray that the seeping would cease and that his incision and his brain would continue to heal.

The Heart

The cardiologists and cardiac surgeons met today to discuss Jude and the next steps.  We were supposed to hear from them, but we did not.  So, hopefully tomorrow they will let us know what they are thinking as far as the date of surgery.  Please pray for wisdom for the doctors and that we would trust the Lord as we wait on Him.

The Lung

It is still looking better.  They will not be taking him off the ventilator until sometime after the next surgery.  Please pray that his respiratory system would continue to improve.  I met a little girl today with Down Syndrome who is on oxygen after her surgery for an AV Canal defect.  So, I don't know what things will look like for Jude after this surgery.

  

The Kidneys

His creatnine level is still at 1.5.  That number is a measure of his kidney function, and 0.4 is about where it should be at.  Please pray that the number would go down to an acceptable level.  We're still not sure how it's going to affect his surgery.  They really don't want to cut off blood flow to his kidneys while they're functioning this way.

The Loved Boy in Illinois

I stole this pic from the blog of my sister-in-law, Julia.  Our sweet kid is the one in the brown shirt with the orange stripe.  He is having pretty much the time of his life in Illinois with his cousins...all seven of them...and his two aunts and two uncles.  We got to skype with him today, and we pretty much just got a bunch of crazy, silly faces from him.  We're so grateful he is doing so well.

Yes, LORD, walking in the way of your laws,
   we wait for you;
your name and renown
   are the desire of our hearts.

Isaiah 26:8

Celebrating @ 2 Weeks

It is our precious little person's birthday today.  He is two weeks old...definitely something to celebrate.  Here is a video we took of him while he was opening his eyes.  Sweet, sweet moments.



We were scheduled to meet with the neurologist today.  We hadn't met with her since the last MRI, and we didn't have high expectations for what she would say.  We knew we would be talking with her more about some of the long-term effects of the bleeding, and it wasn't a conversation I was very eager to have.  Based on the experience of past conversations about Jude's brain, I was prepared for some crying.

The conversation did not go as I expected it to.  Instead of another person sitting us down to make sure we know "what a long road ahead" we have...and how "grave" his situation is...she was surprisingly hopeful.  She said the MRI looked much better.  The bleeds are still there, but she said his brain tissue looks much more normal. Yes, there are four of them, and she doesn't like that number.  But, they're not symmetrical...which means that there is more potential for the opposite side of his brain to compensate for what has been lost.

Upon examination, he does really well.  He is responding as she would want.  He is using both sides equally well.  He doesn't seem to prefer one side over another.  His body seems to be doing the basic housekeeping it needs to do (such as breathing, motor skills, etc).  And, he's not having any seizures!  He has been on phenobarbital to prevent them because it would be a natural result of all that his brain has gone through.  The neurologist is planning another EEG to confirm.

There seems to be some confusion as to whether three of the bleeds are actually on top of the brain or within the tissue.  On top of the brain (a subdural hematoma) is better than within the tissue.  Please pray that that's the case.

The neurologist said that she's hopeful, and she encouraged us to be hopeful as well!  She also told us "congratulations!"  That is only the second time we've heard that from a doctor here, and it is pure music when I hear it. 

Thank you once again for your prayers.  Our Father has been so very good to us, and He has answered prayer after prayer after prayer.  What a sweet experience this has been...to see the hand of God all over our little boy's life.  Thank you once again for praying for us.  :-)  There still aren't words...

The Next Step

We are so thankful to be at this point.

There were so many times we didn't think we'd be here.

So amazing to see all that God has done in just two weeks.

Jude has two heart defects.

We found out about the AV Canal Defect in May.

We found out about the Coarctation of the Aorta the day he was born.

Tonight, I wanted to explain a little more about the Coarctation.

Here is what a typical coarctation looks like:

Jude's heart looks different than the one in this image because he also has the AVCD.  In the top right corner, you can see a narrowing of his aorta.  That narrowing, the coarctation, prevents oxygenated blood from flowing to the lower extremities of his body.  It is fatal without the surgery.  In fact, if they hadn't done the echo to confirm the AVCD immediately after he was born, he would have died without this diagnosis.  So, we're obviously grateful they found it.

When a baby is in utero, there is a ductus in the heart that is used until the baby begins to use his lungs. After birth, it closes. Jude's ductus, however, is being kept open until surgery by something called prostoglandin (PGE). His ductus is acting as a substitute for that part of the aorta until they can get in and fix it.  Hopefully late this week. 

You can learn more about what they'll do to fix it here.  It is a brief explanation with a simple animation that was particularly helpful to us. 

So, that is the next step.  Have I mentioned that we're grateful to be here?  :-)

Tonight's updates: 

• They didn't remove the ventilator today because his blood gases weren't were they wanted them.  Maybe tomorrow. 
• His platelet count was up again.  So grateful for that. 
• His lung is still showing improvement.  The respiratory therapist is doing his "percussion treatment" as I write this.  She pounds his chest lightly hoping to free up all the mucus.
• His kidneys are still taking a beating.  Please pray for increased kidney function and decreased creatnine levels.  

THANK YOU once again

for walking through this with us.

What a blessing you all are to us!

:-)

A Good Day

Today was a good day.

I got to see a lot of this little guy:

I was able to hold him for over four hours....most of which was spent sleeping together.

We also found out that this is looking better:

Baby Boy's X-ray:  His right lung (our left) is clouded with secretions (mucus).

And so they are planning on trying to take this out tomorrow: 

Ventilator Tube

One more monitor will be turned off.  :-)

Ventilator Monitor

And we'll get to see what's under this tape:

This man was also pretty amazing to me...

Brandon singing hymns to Jude

He surprised me with breakfast in bed for my birthday.

It's our family tradition, but we aren't allowed food in our room here.
He worked it all out, and I was very surprised. 

And though we're so glad he is where he is, we missed this guy a lot:   

@ the Explora museum...the day before we said goodbye

It was a good day.

       Please keep praying      

for the prayer requests in my earlier posts.

Please pray for the removal of the ventilator tomorrow...

that he would thrive without it and that the process would go smoothly.

Please pray for his kidneys.  They aren't working well right now.

Please pray as well for good communication between me and Brandon.

Pray that this time would strengthen our marriage.

Thank you so much

for the prayers,

for the love,

for the gifts, 

for the encouragement, 

and for the birthday messages and cards. 

       WE LOVE YOU GUYS!!!     

Hope

Yesterday was a really hard day.  I wasn't sure how to communicate what I was feeling, so I just put up nursery pics.  Saying goodbye to Caleb and my parents...as well as a hard conversation with the doctor...and the move from the hotel to the Ronald McDonald House...all added up to a very emotional day. 

Today was significantly better.  We had plenty of good things to celebrate (which I will share later). People we love came to visit from Cruces as well as from across town. We had relaxed time to spend with Baby Boy, and I got to hold him for the first time since moving back to Pres. :-)

Tomorrow is still unknown.

 

We are learning about hope.  What is it that we are hoping in?  Are we hoping in Jude's progress?  Does our hope rise and fall with each new piece of news the doctors share with us?
 

If we are placing our hope in anything else but Jesus, our foundation is nothing but shifting sand.  We can't place our hope in our little guy's progress...in oxygen levels or platelets or MRIs.  In Jesus alone can we place our hope...in the One who is the same yesterday, today and forever.

"Therefore, everyone who hears these words of mine

and puts them into practice is like a wise man who

built his house on the rock. 

The rain came down, the streams rose, and the winds blew

and beat against the house; yet it did not fall,

because it had its foundation on the rock.

But everyone who hears these words of mine

and does not put them into practice is like a foolish man

who built his house on sand.

The rain came down, the steams rose, and the winds blew

and beat against that house, and it fell with a great crash."

Matthew 7:24-27

Tonight, we're celebrating:  

• Jude opened his eyes today!!!  Brandon was with him when he first saw it, and I got to see it later in the evening.  What a blessing to see those sweet little peepers, and for him to see his mommy and daddy!  Thanking God for that tonight. 
• His platelet levels increased again on their own.  This is such a victory, and we're very happy with this trend.
• His MRI didn't reveal any more bleeding. It looked pretty much the same.  We're thankful for that, and we are still praying that the Lord would bless the areas damaged by the bleeding. 
• They removed his umbilical artery line.  This was partially used as a blood pressure monitor that tracked him moment by moment.  With his stability in this area, it is no longer needed.  :-)
• The Ronald McDonald House.  What a blessing this place is!  They provide dinner and breakfast...along with free laundry and a great place to stay.  And, we don't have to pay anything.  Thanks, Lord.
 

Tonight, we're praying about:

• His right lung. It hasn't shown much improvement yet.  They started him on medicines today to try and break up some of the mucus build up.
• Surgery next week.  They are thinking they will do it on Thursday or Friday.  We have yet to meet with the surgeon, but that is the plan as of now.  Praising God for that!
• His kidneys. They had to stop the treatment they were using to help him get rid of fluids because it was affecting his kidneys.  His creatinine level has been climbing.  Please pray that his kidneys will function as they should and that everything they gave him to help him get rid of his fluids was sufficient to get his system jump started.  
• Hope.  We're grateful for the improvements, and we're praying about the needs.  But, we want our hope to be built on nothing less than Jesus' blood and righteousness.  We want our days to be characterized by His faithful love for us and not our circumstances or those of our sweet little baby.  The song below has been playing in our heads since yesterday.  He is our solid Rock and our firm foundation.

 "This Solid Rock"

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

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

When darkness veils His lovely face,
I rest on His unchanging grace;
In every high and stormy gale,
My anchor holds within the veil.

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.

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.

ABC Nursery

As we were walking out the door to head up here to Albuquerque, I snapped a few photos of Jude's room.  They are blurry from the low morning light and slow shutterspeed, but I thought I would share them anyway.

Please continue to pray him home. 

Pretty much everything in the room was inspired by something I saw on Pinterest.  You can see the sites I pinned here.  The alphabet wall isn't done yet, and I still need to put something up above the crib.  My amazing husband built the bookshelves, and I love them.  I studied elementary education in college, and I have loved children's books ever since.  I collect them at garage sales.  I wanted forward facing bookshelves, but the only ones I had ever seen were ridiculously expensive Pottery Barn ones.  Now, I am so looking forward to reading those books to our littlest...and hoping that someday he will even try to climb them.  :-)

Thanks so much for praying.  A few more requests to ask you to lift up tonight:

• He had an MRI today, and we will learn the results tomorrow.  Please pray that we would trust the Lord no matter what the results reveal.  Please pray for healing in his little brain.
• His lung is still filled with secretions and hasn't changed.  It is not uncommon with the ventilator.  Please pray that they can get that junk out of his system.
• His platelet level increased on its own today!  Such an answer to prayer...as we were discussing with the doctor earlier what the low platelet level could mean...and the options weren't good. Please pray that his body would produce the amount of platelets he needs and that his bleeding wouldn't be a problem anymore.
• He is still off the dopamine.  His blood pressure has been good.  Thanks so much for your prayers.  
• My parents left today, and they took our firstborn with them.  He is now safely in Illinois.  Thank you for praying for the transition.  He hasn't missed us at all.  :-) 

Our New Home

Our precious baby has adjusted well to his new place...and so have we.  I stayed with him tonight for a few hours, and the time was sweet.  We cherish the time spent with our littlest guy.

Today, they did an x-ray of his chest, and it revealed that the upper right lobe of his lung has collapsed.  They are doing "respiratory therapy" on him every four hours.  They have also increased his oxygen level.  Please pray that the therapy works and that his lungs function really well.

He has also thrown up a few times, revealing some old blood in his stomach.  They are draining it now through a tube that exits via his nose.  Please pray for a healthy digestive system.

Please continue to pray for his brain development.  We will meet with the neurologist tomorrow to see when we might schedule another MRI or CT scan.  Please pray that the Lord would heal the damage done by his bleeding. 

Caleb is leaving tomorrow with my parents to head out to Illinois.  We are really, really grateful to know that he will be in such great hands as we spend more time at the hospital.  Please pray that all the travel will go smoothly and that we will all transition well.  We would love Caleb to thrive during this time.

Love you guys!  We're so blessed by your prayers.  :-) 

From UNM to Presbyterian

 Today, we began a new phase of our life here.

Sweet Baby Boy made a great transition to his new place.  Thanks so much to all of you who prayed.  God answered those prayers.  He is in the Pediatric Intensive Care Unit instead of the NICU now.  The rules are more relaxed, we have our own room, and everything just feels more peaceful outside of the NICU.  We were apprehensive about leaving UNM where we had loved so many people and so many people had loved Jude.  But, the Lord continues to show His care for us as we take this next step in our son's journey.

We were told that we can expect surgery in a week or so.  In the meantime, the plan is to continue to let him recover from the neurosurgery.  We're obviously incredibly grateful for this plan...and so thankful for the hand of God over it all.  We have the expertise of Pres' cardiologists and cardiac surgeon 1.7 miles away from the expertise of UNM's neurologists and neurosurgeons.  Looking back on this week, we can see so many reasons to praise God. 

We are in the process of deciding what would be best for Caleb.  We can't give him the time he needs right now, and it has been challenging figuring out his care each day.  Friends and family have been a tremendous blessing to us as they have entertained him and cared for him.  He has been having a great time.  And now, Brandon's sister and brother-in-law have offered to take him indefinitely, and he is really excited about the idea.  They live in Illinois. He could see all of his cousins, and it would be the ideal situation for him.  So, we are looking at the immediate future without our (big) little boy.  It makes us really sad to think about that, but we know that there is no better option for him right now.

 Please pray...

• for the logistics of getting Caleb out to Illinois.  As of now, we're thinking the plan involves a plane ticket, my parents, and some driving...as early as Thursday.
• for us as we say goodbye.  Pray we can prep both him and ourselves well.  It took him much less convincing than it took us.  :-) 
• that we would continue to learn more about what it means to let the Lord carry our burdens.  Apart from everything happening with Jude, a few other things have come up that weigh heavily on my heart. 
• for Baby Boy's swelling.  He has gained over two pounds of weight from all the fluids they are putting in his body.  He isn't peeing them out as well as he was before.  We want to see lots of pee and less swelling for the poor little guy.  Please pray that the swelling decreases so much that he can open his eyes.  He tries, but his eyelids are just so thick with swelling.  Everything else looked really stable today, and he stayed off the dopamine.  :-)  Grateful for that.

Praise be to the Lord,

to God our Savior,

who daily bears our burdens.

Psalm 68:19

Celebrations @ One Week

We have been beginning each day by praying together.  We never know what the day will bring, and we have never felt a greater need for the Lord.  Today brought many reasons to celebrate.

Jude's birthday was today!
He is one week old.  Too many times did we think we wouldn't be here, so we thought it necessary to have a little celebration.  Caleb picked out for him a turtle nightlight like the one he sleeps with...though he thought it would be a good idea if they "do a trade."  He also picked out a card for him with a truck...upon which he drew two guys holding swords.  It has been fun to see him start to care more about his little brother with whom he has yet to really spend time with.

He did great on a respirator test!
The doctors did an experiment to see how he would do breathing on his own.  He performed wonderfully!  There are no immediate plans to take him off the tubes because of the upcoming heart surgery, but it is great to know that he would probably do fine.  Most importantly, it shows that the part of the brain that controls his breathing is working really well.  Big news.  :-)

His right eye is improving!

The hematoma that they performed the surgery on was exerting so much pressure on his right eye, that they thought it would never work.  It didn't respond to light and it seemed that it would be a long-term problem.  Now, however, it responds beautifully.  It is still sluggish in comparison to his left eye, but it is improving. 

We are going to Presbyterian tomorrow!

He is being transported back to his birthplace tomorrow.  I will ride with him in the ambulance.  What a blessing it is to be in a city where there is a wonderful hospital for neurosurgery down the street from another hospital famous for its cardiologists.  Our memories at Pres are not very happy ones, and so we are hoping to make some new ones.

They took him off the Dopamine today!

A few days ago, I asked you to specifically pray for his blood pressure...which was so unstable and very dependent on Dopamine to regulate it.  This morning, when we went in, it was down to 5.  Several hours later, it looked like this:

They had turned it off!  We never imagined we would see that!  Though tonight he had to have it turned back on, we are still rejoicing for where he was today.  It has been amazing to see our little boy improve daily.  He still has a long road ahead of him, as the doctors are always reminding us.  But, our Father has given us this promise:

So do not fear, for I am with you;
   do not be dismayed, for I am your God.
I will strengthen you and help you;
   I will uphold you with my righteous right hand.

Isaiah 41:10

Gratitude

 Tonight, I am grateful...

• that we heard today from the cardiologists at Presbyterian. They are thinking we'll move him over there on Tuesday. That was great news! Please pray that they will decide to move forward with the surgery.
• that I got to see my little boy's eyes for the first time tonight when the nurse checked for his response.  They are the same color Caleb's were.  :-)
• that I got to touch his sweet little mouth for the first time today.
• for friends and family who share our burdens...doing our laundry, bringing us bagels, taking Caleb to the zoo, taking care of our cat, Millie, etc. 
• for the amazing work of art that is the human body.  As we learn more and more about our little boy's struggles, we have been marveling at how incredibly complex we are as humans and how very great a gift we've been given when everything is working together.  The doctors and nurses know so much, yet they know so little still.  We're so grateful for them, but our trust is in the Lord.
• for sleep. 

Andrea

Feel free to steal this and use it as your Facebook photo.  I did.  :-)

 I learned today through my friend Jen that there has been a website set up for Andrea.  It is:

http://www.fortheloveofandrea.com/

There, you can read updates on her in the tab that says "Tyler's notes." 

There was also a news story about her.  My friend Stephanie sent the following link to me for that:

WTHR story

Andrea's mom is my dad's cousin.  Please seek God on her behalf.

I hope to give another update on our sweet little boy tonight.

We are waiting for NICU to open again so we can head back.  Thanks again.  :-)

God is Good

I never know what to put as a post title,

so I am just going to use it to praise God today.  :-)

Once again, THANK YOU for everything.

So many friends have asked us, "What can we do?"

The very, very, very best thing you guys can do for us is to keep praying. 

As friends and family leave to go home, I am sure we will see more needs.

At this point, we really need prayer.  

Updates: 

Sweet little boy has been looking much better.  He has had relatively stable blood pressure and oxygen levels, with some crazy fluctuations after they change his fluids.  We got to hold him for over four hours yesterday.  This is always very special because it is such a long process to get him and all his tubes ready to be moved into someone's arms.  So, yesterday was a good day.  

We are waiting til Monday to hear back from the cardiologists over at Pres.  It has been nice having the weekend with him to just spend time with him...not expecting any news for a little while.  We're just enjoying him. 

Please Pray: 

We are continually astounded at how many people are praying for us.
So, I want to ask you to please pray for some other needs that are burdening my heart:

My Cousin Andrea

Last Saturday night, there was a stage collapse at the Indiana State Fair during a Sugarland concert.

Andrea was in the front row, and she is now in very critical condition at Methodist in Indianapolis.
I am being updated by my dad via her mom,

and he says that it all seems similar to what we're going through with Jude.

Please pray for her healing and her family...

and if anyone knows of a link I could put on here with updates on her, please tell me.

She is married to Mike and has a daughter, Lydia.

Josh and Erin

Josh and Brandon are friends from K-State.

Their baby was recently born very premature. 

His name is Harrison, and he is in a NICU in Colorado.

Their blog is http://joshanderinsmith.blogspot.com/.

Milan and Lena

Their 5-month-old daughter was recently diagnosed with spinal muscular atrophy.

You can read more here (hopefully): 

Prayer for Josephine

 Baby Jude

Please pray again that the cardiologists and cardiac surgeons

would be very willing to do what my little boy needs right now.

Please pray that the Lord would continue to show him how much he is loved...

especially through us.

Please go see this post again and watch the video.

The lyrics to this song have been playing in my head throughout all this.

So grateful for Matt and Sarah.  

Please pray that they would be able to go way down on his dopamine levels.

The dopamine is managing his blood pressure,

and the level was really high last night...meaning he needs lots of help.

They think it's the brain and not the heart that's causing this.

Please pray for miraculous healing in his brain.

His brain controls everything his body does,

and the doctors are very bleak in their prognosis.

But, God is the One who is in control of everything. 

Caleb meets Jude...and other happenings

Yesterday, Jude was having such a difficult day that some nurses suggested that he meet his brother as soon as possible.  And, they made an exception with Caleb in light of his cold.  It went well, and it was sweet.  The nurse and Brandon prepared him for the tubes and the beeping and the monitors, and she even covered up the incision from the surgery with a little hat as well as much of the tubing and wires with a blanket.  Caleb loved meeting his brother, and he was able to touch him and give him a high five.  :-) We kept it pretty short, and he soon wanted to go back and see him again. Today, he said something along the lines of "I actually like my brother." 

Jude had a good night.  Such a good night...especially after such a rough day.  We spent much of the night watch with him.  Night is such a sweet time with less people and less interruptions and less conversations with doctors.  It reminds me some of late nights spent feeding Caleb during the newborn phase...with this time spent talking and reading and singing to Jude.  Those are precious times.  We were both even able to hold him last night.  It was good for all three of us.  :-) 

He also had a pretty good day.  It wasn't the rollercoaster that was yesterday, and he looked sooo much better.  The swelling had gone down, and he is peeing well.  I saw him try to open one of his eyes.  I have never seen his little eyes before.  He was also responding so much better to touch and the environment, while yesterday he was very non responsive.  It was a good day.

Please keep praying for strength for us.  We're both really tired,

and I forgot for a while that I am supposed to be recovering from a surgery as well.

 
Please pray as the cardiology people over at Pres begin to discuss what is next for our little guy.  There is some question as to whether they will be willing to perform the heart surgery.

Please pray our sweet, sweet little baby to stabilize so well

that they can fix his heart (coarctation) and he can go home.  :-)

THANKS!