Wednesday, August 31, 2011

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

Tuesday, August 30, 2011

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...

Monday, August 29, 2011

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!
:-)


Sunday, August 28, 2011

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!!!     


Saturday, August 27, 2011

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.

Friday, August 26, 2011

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.  :-) 

Thursday, August 25, 2011

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.  :-) 

Tuesday, August 23, 2011

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

Monday, August 22, 2011

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. 

Sunday, August 21, 2011

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:

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:

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.

Milan and Lena
Their 5-month-old daughter was recently diagnosed with spinal muscular atrophy.
You can read more here (hopefully): 

 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. 



Saturday, August 20, 2011

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!

Friday, August 19, 2011

Every Good and Perfect Gift

We still can't begin to express how much love we have felt from friends and family.  To those of you who have written on Facebook and this blog, please know that we are soooo grateful for your love for us.  Some friends printed out tonight a few of the things that were said, and I read them to Jude a little while ago.  As I read prayers, it was really fun to see that God has been answering specific prayers people have prayed...such as peace for us...and to know His love...and guidance.  So, thanks so much.  And, if you feel led, please keep writing out prayers.  I am about to go join Brandon with Jude when the little man is done visiting with Uncle Jeff. When I do, I am bringing the computer this time so I can read aloud the messages you guys have written.  I haven't had time to read them myself, so I am looking forward to it.  :-)

Today has been another long, crazy day...with many talks with doctors, lots of crying, and lots of praying.  The Lord has walked us through it, and it is definitely a moment by moment journey.  I will try to summarize it briefly. 

He didn't have the MRI done today because of his instability.  He had a pretty rough day.  His blood pressure has continued fluctuating considerably.  It seems that much of the day, the numbers have flashed angrily telling the nurses it's too high or too low.  Sweetly though, they seem to calm down when we are at his bedside.

The head of the department came in to talk with us today to basically let us know how very severe his problems are.  She said that in all of her time in this field, she hasn't seen many babies with brain images this severe.  She explained that there is a chance that, just like the neurosurgeon at Pres wouldn't operate on him because of his heart defects, the cardiac surgeon over at Pres might not operate on his heart defects because of what is happening in his brain.  She was basically presenting us with the decision of continuing to pursue the treatments or take him off life support.  It was the fourth time we have been approached with this...all by different people.  So, as you can imagine, these have been incredibly difficult days.

We fully believe in God's power to heal.  We know that He is good and that He loves us and that we can trust Him.  We know that He is able to do immeasurably more than all we ask or imagine.  He can heal Baby Jude.  We don't know if that is His plan or not, but we are going to give Him every opportunity to do it. 

If the Lord does call our baby boy home with Him, we are forever going to treasure these days we have with him.  They have been so sweet, and we are growing more and more in love with our son every hour.  A few days ago, I realized that I was holding back part of my heart from him out of self protection.  The Lord showed that to me, and I confessed it and prayed for help to give him everything.  He answered that prayer, and the sweetness of these past few days (especially the quiet nights) I wouldn't trade for anything in the world.

If the Lord lets us take him home to Cruces, he is quite possibly going to face severe disabilities...possibly more challenging than anything we can even imagine at this point.  We don't know.  He does though.  And, we are going to walk the road He has for us.  It will be a hard road, but there will be much purpose and joy in it...and there will be Jude.  :-) And, He will enable us to do whatever He calls us to.  As I said though, we fully believe that God can heal our little boy.  We also believe that He can do incredible things through children and adults with disabilities.  We believe they have much to teach us and much to give us.  And, we have much love to give Jude. 

We don't know what the Lord has for us...but we know Him.  We know that He is our Father, and "every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like the shifting shadows (James 1:17)."  Jude's middle name is Matthew.  It means, "gift of God."  This little boy is truly a gift from our very good Father.

Thursday, August 18, 2011

Last Night

Good morning.

We are just waking up after staying up late beside our sweet little guy.  We are soon to get update about how the rest of his night went.  I was there 'til four and Brandon 'til 1:30.  He is having problems keeping his blood pressure in a good place.  It was often way too low or sometimes too high.  They are administering Dopamine to keep it where it needs to be, and the nurse had to be very vigilant last night.  They are also watching his oxygen levels as they are fluctuating a lot.  They don't know what it means yet, but then the nurses don't usually tell us what they think.  That's what the doctors do, and I am sure we'll be meeting with them sometime soon. 

Jude is scheduled to get another MRI done today.  They should know more then. 

We are getting ready to leave the hospital today.  We have been staying in a great little family room here, and other families need it.  We don't know where we're going next, but our hotel room is still available.  We want to be closer though. 

Please pray that his levels stabilize.  Please pray that the MRI shows good things.  The plan for his brain at this point is to wait and watch the three other areas of bleeding to see whether they are inside the brain or outside...and then they'll know how to proceed.  The blood should get reabsorbed with time, and it will present a clearer picture. 

We are also hoping to move back to Presbyterian as soon as he has recovered from this surgery.  It will be there that they will perform the surgery on the coarctation.  It seems that the problems with the oxygen levels have something to do with that...because the monitor on his foot that is measuring how much oxygen the lower part of his body is getting (hindered by the narrowing of his aorta...the coarc) is acting not too happy.  But, I am not a doctor.  Hopefully we'll know more today.

We are going to get Caleb back today...since we'll be able to live with him again.  We are looking forward to it, but I am also a little apprehensive due to the fact he can't come here and we can't be here together whenever one of us is with him.  We have people who can watch him, but it will be more of a challenge to manage all of that.

Thanks.

Wednesday, August 17, 2011

Sweet Gifts

So many blessings that the Lord have been poured out on us.  Here are just a few examples: 


My parents are both here now. There have been lots of good friends in who have driven up from home.  Brandon's brother is getting in tonight. We have been surrounded by friends and family.  It has been sweet. 

A friend of mine, Katie Warren, is a med student here who I have been terrible about keeping in contact with.  She was assigned to work at the UNM NICU for the last three weeks, and we were incredibly happy and surprised to see her at Jude's bedside this morning.  It is soooo good to see her, and she has been such a comfort and blessing...even getting to help me further in my recovery since I was discharged so quickly last night.


A friend of my Aunt Linda, Kati, "happened" to be working at the NICU at Presbyterian and was able to update her and my mom and my mom's side of the family...who live on the other side of the country and can't be here. 

Jude's nurse today is a woman who has recently left the field of neuro-radiology...after eleven years.  When I found that out, I asked if she was placed here with us because of that.  She hadn't been, but God knew we would need her.  She was even able to explain to us the CT scan that the neonatologist didn't seem to understand.  She has been such a blessing.


There is soooo much more that He has done, but these are just a few things I wanted to write down right now.  God is taking good care of us.  We are trusting Him, and we continue to ask you to pray for Jude...and that we would trust Him more and more. 

We're so grateful for all of you!  THANKS!

Day 3...so far

Again, thanks so much for all the love and support.  My time at the computer is very minimal, and I haven't been able to read all the sweet notes on here and on Facebook.  What we have been able to glance at has been super encouraging...and we look forward to hearing from all of you when we can catch a breath.

I have a few minutes now, and Brandon is trying to get a quick nap in.  He is sick, so please pray for that.  That, on top of sleeplessness and everything else, hasn't been very easy to deal with.

Last night, as I mentioned, Brandon came here on the ambulance.  I was discharged a few hours later, and was blessed to have good friends with me.  A good friend, Trevor, stayed with Brandon here and another good friend, Kyle, took care of Caleb while his sweet wife stayed here with me.  Chrissy and Denise helped me leave, drove me over here, bought me lots of care supplies I needed, and then came up to the family room that the amazing people at UNM had provided to allow us a place to crash for the night in light of the emergency transfer. 

We were immediately briefed on the situation by two doctors here.   It was again very hard to hear, and the doctors were hesitant to proceed with the surgery.  But, they were willing.  Earlier in the evening, the surgeon had told Brandon that he didn't think he would be willing to perform the surgery on him due to what the possible repercussions could be.   So, Brandon had been waiting on me to get here so that we could talk through what our remaining options were...which most likely meant taking Jude off the meds that were keeping his heart alive.  Later, just before I got here, he had changed his mind and had said that it might not be so very difficult and that he was willing to do it.  So, we had a decision to make again.

The surgery would be relieving pressure on the right side of his brain by removing the largest collection of blood.  There were still other areas of bleeding, and they thought that those might actually be inside the brain instead of on top of the brain.  So, there would be permanent brain damage no matter what the outcome of this surgery.  They were also concerned that relieving pressure on one side of the brain would allow blood to fill more heavily on the other side of the brain.  So, even the outcome of the surgery wouldn't be ideal.  The other option was to just make him comfortable...as they called it. 

So, at 4 in the morning, they took him into the operating room to perform the surgery.  We went to sleep for an hour and then made it back down to wait for the rest of the surgery.  After some time, the surgeon came back in to let us know that the surgery went well.  They were able to drain 20cc of blood and the brain moved back to fill the space...back to where it belonged.  We were grateful for the news...and then went to sleep. 

Today has been a relatively calm day.  Jude has been stable and is on morphine.  He seems responsive to our touch.  The CT scan results don't look good, just as the MRI yesterday didn't.  But, we could see improvement as a result of the surgery, and we were glad to see that things haven't gotten worse.  We are going to be better briefed at five as to what is next and what the results mean.  He is getting an EEG right now, and so they will learn more from that as well.  As I said, there are three other areas of bleeding, but they think they are in the brain and not on top of it.  So, they didn't touch them during the operation...and from what I understand, the plan is to just wait and see what happens. 

But, little babies' brains are resilient.  I grew up babysitting a little girl, Jessica, who had much of her brain removed due to seizures.  She had cerebral palsy (which is what Jude now is facing) and her life has been an incredible blessing to so many, many people.  I believe too that this is the goodness of God demonstrated to me...in the example I have in her.  Please pray that our little guy's brain will recover what has been lost...just as it did in Jess' life. 


I am currently struggling with the lack of time I am getting to see my little boy(s).  There have been so many things to do and it is hard to know how much time to spend where.  I miss Caleb tons, but he has been in great hands.  It is very difficult being away from him.  He hasn't even met his brother yet...due to being sick and not allowed in the NICU.  Please pray for that as well. 

These notes have all been written in between Jude and friends and doctors and lactation consultants and pumping and everything else.  So, sorry if it's not coherent.  There is so much to share...and so many of you care.  So, we want to keep everyone updated...and we desperately need the prayers.  Thanks again. 

I am going to go see our littlest boy right now.  We love you guys!

From Presbyterian to UNM

Good morning, friends. 

It is Day 3 now, Wednesday, but all the days are blurring together in our minds.
We are running on very little sleep, but we were able to get in four hours interspersed last night and just now woke up.  Hopefully this will be coherent.

So much has changed since I wrote yesterday, and I am sorry I was never able to update last night.  Everything that happened after I wrote that last update is something of a blur.  I will try to remember it as it occurred.

We received the results of the MRI not too long after we published the last post.  The neonatologist came up to our room along with the pediatric neurologist.  They sat down to explain and quickly showed us the images from the MRI.  Like the images in May on the ultrasound of his heart, it was immediately obvious to us that the results were not good.  A large portion of the right side of his brain was covered in blood...along with two or three other portions of his brain.  We were told then that he has had multiple strokes and was now facing possible neurosurgery.  The heart surgery would have to wait.  And we were waiting now too...waiting for the hospital's neurosurgeon to tell us what to do next.

This all seems like an eternity ago.

So, we went down again to be with Jude...as he was now done with the MRI and was completing an EEG.  We got to be with him for a little while, but we were soon informed that Dr. Houston, the neonatologist, wanted to see us.  In her office, we learned that the neurosurgeon had said that he would not perform the surgery.  The additional problems (heart defect and Trisomy 21) along with the fact that he was a baby scared him too much.  So, our only option at that point was to transfer him to another local hospital at the University of New Mexico.  While Pres is known for its expertise in cardiology, UNM is better at neurology.  They had a pediatric neurologist. We knew pretty quickly what we desired to do.  We just had to hear back from UNM that they would receive him.

When we got a reply from the UNM neurologist, the question he had for us was this:  "How much do you really want to put your baby through?"  We were being presented with two options:  Transfer him to the NICU at UNM where they would evaluate him and then determine whether they would go through with surgery or keep him at Pres and "make him as comfortable as we can."  So, we were deciding whether to give him a chance at life or not.

Even as I write this, I am crying.  I can't put into words how hard it was to even come to the conclusion that this is what they were asking.  I didn't sleep at all Sunday night due to laboring.  Monday night was really short, much of it spent with Jude.  And the drugs aren't helping either.  I am so glad that Brandon is here to walk through this with me.  He has been wonderful.

So, we decided we wanted to give our baby every chance at life.  We decided then to transfer him to UNM, unsure if they would even be willing to do the surgery.  We stayed in the NICU with him until the transport team came to get him.  I couldn't leave because I wasn't yet discharged and was still in a lot of pain.  Brandon was going to stay with me for a little while and then go over there.  Instead, a doctor with the UNM team suggested he ride over with them now...as she said he was looking pretty bad and might not survive. 

So, Brandon went with him, and I was left at Pres.  It was incredibly difficult to be separated like that.  Soon after, good friends came to be with me and were so helpful.  They helped me prepare as we were able to accomplish a rushed discharge.  So, after a long process, I was able to get out of Pres and be driven over to UNM to be with my baby and my husband. 

We are here now...and there is so much more to tell about it.  But, we were just informed that they are doing rounds at Jude's bedside right now.  We're going to head over there.  I will write back more about the rest of last night as soon as I can.  Thanks again so much for all your prayers and love and care.  We love you guys! 

Tuesday, August 16, 2011

More News

First, THANKS SO MUCH to all of you for the love and prayers you are pouring out for us.  We are so thankful for all the community and support we have right now.  Good friends (Kyle and Chrissy) are watching Caleb right now, and my sweet mom has been here throughout all of this.  My dad is getting here tonight.  We're very thankful.

We just returned from being with our littlest guy.  I got to hold him for the first time, and it was hard to let him go.  Brandon is sick with the start of a cold (Caleb's cold), and so he is unable to touch him or hold him.  But, we were glad that he could see him.  It was wonderful holding the sweet little boy in my arms for over an hour.  Soooo good for me.

Last night the doctors in the NICU successfully inserted the PICC line, which is a much more stable way to deliver medicine to Jude's heart.  His platelet level also increased significantly after they did a platelet transfusion.  Thanks for praying.  Please continue to pray that they stabilize.  His blood is also clotting better with some help from medication.  So, that was good news.

This morning, we learned what has been hardest yet to hear.  It appears that Jude has had a stroke...and is possibly experiencing seizure activity (something that might not be obvious in a newborn to an outside observer.)  He was supposed to be getting an EEG now, but he is instead getting an MRI done as I write this.  The doctor just called to inform us.  There appears to be a hemorrhage outside the right ventricle of his brain and some swelling on the left side of his brain.  This might explain the low platelet level...due to the bleeding.  There is still much to learn, and our doctors (neonatologists, pediatric cardiologist and surgeon, nurses, and now a pediatric neurologist) are working hard to determine what is going on and what is the best course of action.  The heart surgery (which we found out is not an open-heart surgery) is being postponed until they can learn more about what is going on in his brain. 

The possible long-term repercussions of the issues with his brain are scary.  Friends of ours have walked through similar circumstances, and so we're familiar with what the possible outcomes are.  We don't know what tomorrow will bring...or even what the next hour will bring (as has been the case since yesterday morning).  By the time we go to bed tonight, our world may very well be rocked once again.

While God has done so many good things lately, I have struggled today with thoughts such as "Lord, why aren't you answering prayers as we've asked you?"  He just continues to remind us of His love, His sovereignty, and that His ways are not our ways.  Our prayers may not be being answered as we would want, but He is answering us by giving us more of Himself.  He is meeting us in ways we would never have experienced otherwise.  We need Him desperately...and so does Jude and so does Caleb...more than anything else...even more than a clean bill of health.

He is the One who is writing this story...and while it isn't what we would have chosen, it will be better than anything we could have written.  Please pray that we would trust Him as we begin the next chapter.

Please pray: 
that his platelet level would continue to stabilize.
that the MRI would reveal good things.
that the repercussions of what is going on in his brain would be very minimal and mild.
 for Caleb and his adjustment.
for Brandon and Caleb to heal...and that I would avoid sickness.
that we would trust God with our whole hearts and draw near to Him. 
that He would continue to unify us in this process.

Monday, August 15, 2011

Welcome Jude Matthew


 Monday, August 15, 2011
9:07am
5 lbs 11.6 oz

We welcome our little guy today with much joy
even as he faces challenges ahead.

We praise God for this sweet, little gift He has entrusted to us.  

Jude = "praised"
Matthew = "gift of God"

"I give thanks to you, O Lord my God,
with my whole heart,
and I will glorify your name forever."
Psalm 86:12

   Thank you for joining us on this journey.   

And our new life starts...

There is so much to write about today, but I think we're going to keep it brief.  It has been a rollercoaster of emotions and events, and we are pretty tired. 

I went into labor this morning at 2 something.  After waking up Brandon an hour and a half later, we headed to the hospital.  We were quickly admitted into labor and delivery.  My contractions were coming quickly and were very painful.  After laboring for a little while, I was administered an epidural and prepared myself for a long labor ahead.

Soon after, however, the doctor came in and told us some news.  The baby's heartbeat was decelerating with each contraction...indicating that he was in distress or that his umbilical cord was being compressed with each contraction.  She broke my water to check for meconium...baby poop which would indicate stress.  She did find that the fluid was thick with lots of meconium, indicating that he had been in stress for some time.  So, the decision was made to do an emergency C-section. 

I can understand now why people dislike them so.  I was heavily drugged and completely uninvolved in the birth.  But, we definitely wanted what was best for our little guy and were in no way questioning the decision. 

All of it happened behind a blue curtain shielding the surgery from our view.  After they pulled him out, Brandon was able to see him for a few seconds.  Then, they held the baby up for one second so I could see him and then they quickly whisked him away to the NICU.  Brandon and my mom were able to go visit him an hour or so later.  I didn't get to see him until about six hours after he was delivered.   

We soon learned why we would be unable to see him for a while.  There were many unforeseen complications that we are still continuing to realize.  The first one is that he has something called coarctation.  It is another heart defect that was hidden from view on the ultrasounds.  It is a narrowing of the aorta that prevents blood from being pumped to the lower part of his body.  It is fatal without heart surgery, and so he will be undergoing open-heart surgery in the next few days

There is, however, an extra complication that goes along with this.  His platelet count is very, very low.  It is preventing them from doing a PICC line that will allow medicine access to his heart and will replace a temporary line that they have going now.  Because he has such a low platelet count, his blood isn't clotting correctly.  So, they were going to do a blood transfusion tonight.  We are hoping to go down after this to see him again and to learn more.  It will be only our second/third time seeing him since he was born.

The platelet count, along with something relating to the gases in his blood, could be pointing to a virus.  They are testing him for several different viruses, and we hope to know tomorrow the results.  If he does have one of these viruses, we could be looking at long-term management plans (like for HIV...but he doesn't have HIV). 

So much for brevity.  :-)  This is what we know as of now.  I am sharing the details as we understand them.  Thanks so very much for caring and praying.   

Please pray for: 
his platelet count...that it would increase and that his blood would coagulate just fine
the virus testing...that it would come back negative
the first heart surgery...that it would go smoothly and be effective

Friday, August 12, 2011

Not Home

This was the only time I have gotten out the camera...late at night with Brandon out of town.

Today marks a week of life in our little hotel room.  I can say that overall we really like it here and that we're grateful for this little season without the everyday stresses of daily life.  Brandon was home this week for some meetings.  When he returned last night he said, "Being there was a return to reality.  This all feels like a dream world."

We have been surprised by how much we are enjoying this town.  There is much to do here, and we have seen many friends...some who live here and others just stopping by on their way down the interstate.  We have even ran into friends unexpectedly at malls and restaurants.

Our hotel room has worked out well...with the challenge of getting Caleb to fall asleep at night getting easier as we go.  My sweet mom arrived on Wednesday. She was able to come to my OB appointment yesterday.  It is wonderful having her here.  Caleb has asked many random people, "Do you know this is my grandma?"

So, life in Albuquerque has been slow and sweet.  Every day we wake up without much of a plan and what seems like an endless day stretching before us.  In many ways, this little place has become "home."  I brought my own bedspreads, and we have a pretty plant and some sunflowers.  We have unpacked our clothes into the dressers and have our own cleaning and cooking supplies.

This, however, is not our home.  I have thought many times of something Randy Alcorn wrote in one of my favorite books, The Treasure Principle.  The book is about giving, and God has used it in my life numerous times. 

The single, greatest deterrent to giving is the illusion that this world is our home. Suppose for a moment that your home is in France and you are visiting America for 80 days and are living in a hotel. Here is the rule: You can’t take anything back to France on your flight home, but you can earn money and wire deposits back to your bank in France. Would you fill your hotel room with extravagant gifts and expensive wall hangings? No! Your time here is short, so you send your treasures on home, where they will be waiting for you when you arrive. Scripture says that we are here for just 80 years or less and that is not much more than 80 days (Psalm 90:10). Scripture says that our life here is just like a breath (Psalm 39:5). We are here on earth on a short-term visa. It’s going to expire soon. So, let’s not spend too much time fixing up the hotel room. Sure, there can be an aesthetic thing here or there. That is understandable. I’m not saying that we can’t have anything, but I am saying that we should wire it on ahead because we aren’t going to be here much longer.

(excerpted from his sermon on this site:  Generous Giving <--- Read it.)


Again, this hotel room, though comfortable, isn't our home.  It would be foolish to invest anything in this little space.  Yet, neither can we truly call home our three-bedroom ranch a few hours down the interstate (even though our sweet cat is still there).  Paul says in Philippians 3:20 that "our citizenship is in heaven."  This world is not our home.

As Alcorn writes, "We are made for a person and we are made for a place. Jesus is that person and heaven is that place. We will never be satisfied with any other person less than Jesus, and we will never be satisfied with any other place less than heaven." This has been really helpful for me as well as we face the strong possibility of giving lifelong care to a child/adult with a disability.  If we had any dreams for the long-term future, they are once again where they should be...in the hands of our Father. 

With that, I don't mean to say that I am not excited about the future.  I can't wait for our little boy to be born and am counting the days 'til we get to meet him (18? days).  I know that everything will change, and I feel hopeful and grateful.  God's plan is good, and I am thankful that our "times are in His hands."

"Show me, O Lord, my life's end
and the number of my days;
let me know how fleeting is my life. 
You have made my days a mere handbreadth; 
the span of my years is as nothing before you. 
Each man's life is but a breath."
Psalm 39: 4-5

"But I trust in you, O Lord;
I say, 'You are my God.'
My times are in your hands."
Psalm 31:15

Monday, August 8, 2011

Baby's Alphabet Wall


I finished Baby's nursery the night before we left town.
It has an alphabet theme to go with the bedding we'd had for Caleb.
I found pretty much every idea I had on Pinterest...
including this one for an alphabet wall.
Find the original here

I am linking to something called Pinterest Challenge,
where you share something you made
inspired by something you found on Pinterest.
It is a site where you can organize in a pretty, visual way
things you've bookmarked on the internet.
You can also see things your friends have pinned.
It is fun...and addicting.
Try it. :-)

Sunday, August 7, 2011

Sweet Shower


Thursday night,
some wonderful friends from church
hosted a baby shower for us.
So many lovely women came,
and I felt so very loved by them.
We have been completely and
overwhelmingly
blessed
by the incredible people of
our church family.

THANK YOU
all so much
for supporting and
walking through this with us.

                          We love you and praise God for you!                       

Tuesday, August 2, 2011

What it Means to Be Loved

As I mentioned before, God uses music in my life. And, this song is one more example. While I don't think that I would have ever listened to Mark Schultz before (despite the fact that he's a Lambda Chi alum at K-State...like Brandon), this song and the story behind it might change that.   His wife had worked with a woman at a hospital who had recently been told her baby wouldn't live past a year.  She had been advised to terminate, but instead she had decided to love the baby as long as she could.

Schultz writes this: 

Inspired by this family’s story, my wife continued to look at the implications for our own family. She said, “Since you’re adopted I think we should adopt kids too.” I said, “Ok that’s fine.” She said, “I think we should adopt kids maybe with special needs.” And I said, “Ok, that seems like a tall order.” She continued, “Maybe someday we adopt kids with special needs that the doctor only knows they’re going to live for a year or two.” I responded, “Honey, why would we do that?” And my wife said, “Because before they go to heaven, I want them to know what a great Christmas is like and I want them to know what a great birthday is like and let them know that they were loved well before they get to heaven and realize that love. I want them to know that they were loved here on earth and celebrate them here.”



When I hear this story, I think of my friend who told me yesterday that she and her husband are wanting to adopt possibly two children with special needs...inviting suffering into their lives in order to experience God's love more fully and live out that love for his children. 

When I hear this story, I think of our friends Liz and Matt whose baby was diagnosed with a chromosomal disorder while Liz was pregnant. Though they knew their baby wouldn't live much past birth, they chose to carry Hope anyway.  I envied the intimacy they were experiencing with God as they walked through it.  

When I hear this story, I think of my friend Sarah whose baby, Bowen, has HLHS. The left side of his heart is severely underdeveloped, and the condition is fatal without open heart surgery. I wrote about the songs her husband wrote for him in this post and this post.

When I hear this story, I think of my husband's aunt and uncle, who had two children with a very rare genetic disorder called Mucolipidosis type III that gave them only three years to live. To hear Laura talk about it with a heart full of faith in a good God brings tears to my eyes even now. 

God is so good.  
My friend, Holly, wrote this blog post recently
about a little girl with DS who really needed to be adopted.
Caleb and I prayed for her again yesterday.
Just now, I checked out the website again and saw that   
God is so good.