Waiting

Right now we are waiting...

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

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

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

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

We are waiting on the Lord. 

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

Thank you so very much.  :-)

"I have learned that faith means

trusting in advance what will

only make sense in reverse."

Philip Yancey

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

One Month

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

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

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

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

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

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

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

Read all of what she shared here.

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

And, Sarah, please tell Matt thank you. 

Click below to read lyrics to some of these songs:  

Surgery #2 Update

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

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

We will know more tomorrow.

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

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

I lift up my eyes to the mountains

where does my help come from? 

My help comes from the LORD,

the Maker of heaven and earth.

He will not let your foot slip -

he who watches over you will not slumber; 

indeed, he who watches over Israel 

will neither slumber nor sleep.

The LORD watches over you— 

the LORD is your shade at your right hand; 

the sun will not harm you by day, 

nor the moon by night.

The LORD will keep you from all harm—

he will watch over your life; 

the LORD will watch over your coming and going

both now and forevermore.

Psalm 121 

Happy Birthday, Caleb!

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

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

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

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

Trials & Laughter...Sorrows & Joy

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

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

"Therefore since we have been justified by faith,

we have peace with God through our Lord Jesus Christ.

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

and we rejoice in hope of the glory of God.

More than that, we rejoice in our sufferings,

knowing that suffering produces endurance,

and endurance produces character,

and character produces hope,

and hope does not put us to shame,

because God's love has been poured into our hearts

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

Romans 5:1-5

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

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

Please pray for protection for Jude against infection.

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

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

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

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

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

When God says, "No"

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


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

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

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

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

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

The rest of our evening consisted of:

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

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

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

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


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


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

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

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

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

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

From UNM to Presbyterian

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

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

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

***THANK YOU***

He Cares for Us

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

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

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

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

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

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

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

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

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

The CT Scan

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

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

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

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

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

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

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

Thank you, friends.
We love you.
Goodnight.

New Plans

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

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

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

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

Random side notes...

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

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

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

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

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

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

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

***thanks***

For when I am weak, then I am strong.

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

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

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

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

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

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


Tonight, I'm thanking God...

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

Tonight, I'm asking God...

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

Thanks so much for trusting God with us

for the healing of our little baby.

This is Love

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

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





















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

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

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

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

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

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

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

"This is how God showed His love among us:

He sent His one and only Son into the world

that we might live through Him. 

This is love: not that we loved God

but that He loved us and sent his Son

as an atoning sacrifice for our sins."

1 John 4:9-10

Needing Him

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

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

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

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

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

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

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

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

Still Swelling

Source: allconsumingfire.tumblr.com via christin on Pinterest

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

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

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

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

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

Thanks for praying, friends.

Love, us

No more neurosurgeons, please.

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

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

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

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

...made for another world

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

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

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

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

Thank You, Jesus. :-)

"He will swallow up death forever;

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

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

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

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

Isaiah 25:8-9

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

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

for the former things have passed away.

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

Revelation 21:4-5

Please pray...

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

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

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

that his lungs would improve with the respiratory therapy.

thank you, friends  :-)

Ups and Downs

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

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

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

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

Tonight, we're asking God for...

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

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

decreased creatinine levels.  These jumps have been so crazy.

a healthy lung.  That change was pretty drastic too.

no more seeping.  Ever again.

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

Some have asked for our address.

Mail can be sent to either 

Ronald McDonald House

Brandon and Mandy Pelton

Room 24

1011 Yale Blvd NE

Albuquerque, NM 87106

or

 Brandon and Mandy Pelton

c/o Denise and Trevor Riggs

3705 Marquette Ave NE

Albuquerque, NM 87108-1031

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.