Jacks

Our little buddy has an apple hat and was going to dress up as Apple Jacks today, but at the last minute he decided he didn't want to. Instead he called the whole team back in to treat what they thought was a new pleural effusion on his right side chest. Whenever they inserted the chest tube they got only a small amount of return. Because of this they went ahead and removed the tube. Rather than a pleural effusion they are now thinking he just has a very large amount of excess fluids (edema) in his tissues. This was leading to increased swelling, difficulty breathing, and a very uncomfortable baby. They are going to attempt to treat this edema with larger doses of diuretics. For now his vent is all the way back to full support, and his heparin and clot buster are on hold (because of the chest tube procedure). Despair nips at the corners of our hearts and minds as we stand at the bedside of our frail son. But God continues to give us a shield of faith, and though the point of the arrow still stings, the fire is gone out of it. (Ephesians 6:16) Mason just sent me this verse, "I am the Lord, the God of all flesh. Is anything too difficult for Me?" Jeremiah 32:27 No, Lord, nothing.

8 weeks

Jackson is eight weeks old! I am so grateful for the difficulties and dangers that have caused us to not take even one breath for granted. I am also grateful for Christ in ways I never have been before. He has been a constant Help and Friend. He always understands and always cares.

Jackson is beginning to slowly make progress again. He is still having some chest tube output, though it has decreased significantly. They said he may require just a bit more tPA to dissolve any clot remnants. His vent is being weaned again. He is doing well with it though they have had to go a little slower because he's had some rapid breathing. His face looked a little less swollen to me yesterday. I'm looking forward to seeing what he looks like today! We continue to long for home, but God has given many helps to persevere and endure. Here goes day 58!

Cath results

Jackson's cath procedure took about two hours. They found a clot in a different vein and were able to effectively break it up without placing a stent. We're not sure if they found any blockage in the SVC (waiting for a more detailed report) but know for sure that following the procedure it is now open. He will have to stay on routine blood thinners for 6-12 more weeks and have ultrasounds of that particular vein once weekly during that time. They haven't said anything as to how much longer we may be here. Thank you so much for your prayers! We are very grateful for such positive outcomes.

Cath update

Little buddy just left for cath lab-should take 2-3 hours once they get started. We'll update as able!

Update

They plan to take Jackson to the cath lab today around 12:30 or 1. His blood cultures came back negative for infection. Appreciate your prayers!

To brighten your day...

We have been blessed with some truly amazing nurses in our last eight weeks of life in the ICU. Below is a story about one of them:

A few days back Jackson's nurse for the day came in with something behind her back. She said it was for us but that she had to tell us a story first. "You know how yesterday we were talking about patients we get close to? Well there was a little boy named Charlie with heart disease who unfortunately didn't win his fight. His mom came back after he died to tell us all goodbye. I know Jackson won't be able to wear this for a while--but his mom gave me this onesie that Charlie was never able to wear and said to pass it on to another patient. I've had it in my work mailbox for 5 months and finally found the special someone to give it to." She gave it to Jackson.

Words fail us. The sadness of a battle lost, the awe and wonder at another battle being won, the grief and kindness of a mother, the grief and kindness of a nurse...all we know is we truly are blessed. Wonderfully, breath-takingly blessed.

Cath lab update

The doctors have decided to hold off on Jackson's cath lab procedure for now. The earliest it may happen is tomorrow morning. Some blood cultures were drawn several days ago that showed a possible infection. The doctors feel it was probably a false positive, but just to be sure they want to hold off on any procedures till the second set of blood culture results are back. A new blood culture result will be available tomorrow. (He's already being treated with antibiotics for the possible infection.) This gives us one more day for the tPA to effectively break the clot, if it might be God's will! After getting more information about the cath procedure, it doesn't sound like the doctor's concern is so much the risk of the procedure but the fact that a stent will be placed and, with as small as he is, the stent will not grow with him. It would have to be replaced with a larger stent when Jackson is a little older. Of course we would love to avoid ANY sort of extra implanted items, but we are looking to the Lord to determine what is best for Jackson. Thank you, again, so very much for all who have prayed. Your prayers are being heard and answered.

Here's a brief overview of Jackson's status right now:
-On the ventilator (Lord-willing this will come out as soon as clot is gone)
-Foley catheter (wasn't emptying his bladder well last night)
-PICC IV that's used for most of his medications as well as for lab draws
-Two normal peripheral IV's
-Receiving tPA and heparin for blood clot
-Chest tube
-Implanted pacemaker
-Nasogastric tube for nutrition

So far they have not needed to restart an arterial monitoring line- yay!

Thank you!

I just wanted to say, "Thank you!", to all who sent me birthday cards, emails, and texts! Thank you for being so thoughtful and for brightening my day. Look--even Jackson remembered!

October 26

Our little buddy needs your prayers once again. He began having more labored breathing again today. Because of this they went ahead and reinserted a breathing tube and put him back on the ventilator. Their thought was that he would need it for his cath procedure tomorrow anyway so they thought maybe he could have a day of "rest" respiratory wise. This went fine, but after it was inserted his heart reacted to the stress (they think) by going out of rhythm. They think they can correct the rate with medicine and are giving it slowly right now. Thankful to have him with us still. Love him so much it hurts!

Praise the Lord

Thank you, thank you, thank you for all who have prayed for Jackson and our family today! I am overjoyed to report that he is doing so much better. They placed a new chest tube to his left chest area and it immediately drained a large amount of fluid. The result has been easier breathing, and a very peacefully sleeping baby. His skin color even looks better! He did receive some sedatives from his procedure so he's certainly still feeling the effects of those, but his unlabored breathing is a very good sign. The doctors were alarmed when his symptoms began to develop--fearing that he had perhaps begun to bleed internally from the medications he's on. They were very pleased with the results of the chest tube placement. Just to be cautious regarding his agitation they had x-rays taken of all his extremities (to rule out any possible fractures) and another brain ultrasound performed. All were clear! At this point the doctors feel the chest tube was clogged and it was leading to a back up of fluid around his lung. We feel extremely relieved that the problem was something so simple, and extremely relieved to see him calm and comfortable. Again, thank you for your prayers.

Furthermore, an echocardiogram of his heart performed this morning showed he is beginning to have blood flow through his superior vena cava (ie clot spot!). It sounds like it is only partial flow at this time so they have still said they will discuss the possibility of the cath lab on Monday, but obviously the medicine has at least partially worked!

So far they have not replaced his arterial line. They want to hold off unless it's truly needed. Right now his vital signs are stable and his lab results are steadily improving from where they were at this morning.

"Let everything that has breath praise the Lord." Psalm 150:6

Moved back to high care area

Around six this morning Jackson's nurse called to update us that he was having some difficulty breathing and there was a problem with air in his arterial line. She said they were moving him back to CICU (room 3), and replacing the line. After I arrived a chest X-ray showed fluid around his left lung. The chest tube had stopped working and then actually fell out altogether. They are replacing this as well. They are searching for a cause for the severe agitation he's been having (though he's actually resting very well right now). He is back on high flow oxygen but if it doesn't work sufficiently they will have to intubate him again.

Thank you for praying for us so far! Please continue as we are brought to mind. I was helped by this verse.

God is our refuge and strength,
a very present help in trouble.
Therefore we will not fear
though the earth gives way,
though the mountains be moved into
the heart of the sea...
There is a river whose streams make glad the city of God...
God is in the midst of her;
she shall not be moved;
God will help her when morning dawns. (Psalm 46:1-5 ESV)

October 24

Asking for prayer for Jackson this afternoon. He has been very, very uncomfortable last night and today. He is very hard to console and not sleeping more than five or so minutes at a time. The doctors have given extra pain meds but even that doesn't seem to be helping. Also some of the swelling in his head and neck has returned. Please would you pray for him? Also for wisdom for the doctors and peace for us. We would continue to ask for prayer for his blood clot as well. Thank you...from several hurting hearts. 

"My flesh and my heart may fail, but God..." Psalm 73:26

New address

Jackson Vann

St. Louis Children's Hospital

7CCU Rm 13-A

1 Children's Place

St. Louis, MO 63110

Wait

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

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

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

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

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

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

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

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

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

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

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

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

-Robert Keffler

Seven weeks

Tonight at 12:23 am Jackson will be seven weeks old. I wish I could say it doesn't feel like it's been that long, but... :) He was moved yesterday to a room in between the CICU and the Step Down Unit. This makes room number four. If this clot issue could be resolved then he would be able to move directly to Step Down and that would, Lord-willing, be our last stop before home. But so far he hasn't made much progress regarding the clot. They have increased the clot buster medicine several times (doing brain ultrasounds twice daily now to make sure he's okay in that area), but his chest tube continues to drain large amounts of chylous fluid. Friends, would you join us in praying for a thorough resolution of this problem? Several doctors have mentioned trying a cath lab procedure to break up the clot, but Jackson's surgeon has said he would like to avoid this if at all possible just because of how small Jackson is. I was encouraged on my drive over to the hospital to remember that we can pray about this and also to remember how willing God is to hear and answer prayer. I was also encouraged to remember it's women's prayer meeting tonight at Lakeroad Chapel! We need God's help and intervention.

10/20/14

Still waiting to talk to Jackson's doctor to hopefully get more info on how they feel like the clot busting is going. Apparently it hasn't done too much as of yet, because they've increased the dose yesterday and again today. Right now he's holding steady and seems very relaxed and comfortable. He is down to 1 liter of oxygen and his blood saturations are great, so hopefully he'll be all done with extra oxygen before long! Thank you for continued prayers. We are so ready to go home.

After a couple weeks of separation, we're looking forward to getting two little people back in our arms today...!

tPA

The doctors have agreed on a plan of treatment for Jackson's blood clot. The medication they will use is called tPA. It's a "clot buster". They plan to give him a blood transfusion first, then after that is complete start him on a very low dose (lower even than the normal "low end" dose) of tPA. This medicine has a risk of causing bleeding, but because the dose is so low they don't seem overly concerned about this. Just to be extra cautious (we love that!), they will draw labs every 6 hours, monitor his wound dressings for any new bleeding, and watch his brain with brain ultrasounds as well. If he tolerates everything okay they will gradually increase the medication to the actual "low end" dose. They plan for him to be on this medication for five days. Jackson still has his chest tube in place and it has been draining what's called chylous fluid. This means it contains triglycerides and has a milky white appearance. This is directly related to the blockage in his SVC. Whenever the blockage begins to go away, the fluid will clear up. This was good news for us, because it means we have a front row seat to see whether the tPA is working or not. God has given us so much peace in this new development. Amy Carmichael wrote in Edges of His Ways for October 18, "Is not peace an answer?" Thank you for praying for us and with us--God is already answering by giving peace. We trust He will see Jackson through this trial just as He has as all the ones before.

Blood clot

Jackson's procedure earlier revealed complete blockage of his superior vena cava by a blood clot. We would appreciate prayer for his doctors as they decide the best course of treatment.

"God is too good to be unkind, He is too wise to be confused. If I cannot trace His hand, I can always trust His heart." - Author Unknown

6 weeks, 39 weeks gestational age

Today has been a busy day! Standing in morning rounds to hear the plan for the day, holding little baby arms and legs for the ultrasound tech to perform an arterial and venous ultrasound, visiting with the neurology team at bedside, holding a pabby in a little hungry boy's mouth, etc. Whew! Jackson looked so much better when we got here this morning. His facial/head swelling had majorly decreased over night. It was so wonderful to see his little bright eyes all the way open and alert. So here's what's going on today...

As you know, Jackson had fluid around the outside of his lung yesterday.  A new chest tube was inserted to drain this fluid. The doctors told us yesterday that if the drainage was only at the time of insertion and very little drained through the night then they would probably assume it was a one-time incident and not do too much digging to uncover the cause. However if it continued to drain through the night they would need to find out the cause. I have to admit I was disappointed when we walked in to see a large amount of drainage in his suction machine this morning. I wasn't sure that I liked the idea of not knowing what lead to the fluid collection either though, so perhaps this way is best. Anyway the doctors are thinking that this is probably related to their suspicions of a clot or narrowing in Jackson's superior vena cava. What they have decided to do is take him to the cardiac cath lab and explore the area. Their concern was of a possible clot on the end of Jackson's PICC line in his right arm. This PICC is now is only IV access point. What they plan to do is insert a new PICC line in his groin area, pull the other PICC line only partially out and shoot a dye through it to better assess the probable problem area. The results of this test will determine treatment. The nurse practitioner came in and reassured me that he is doing very well overall but that they want to address this before it can get any worse or more complicated. He is in the cath lab right now.

As I mentioned, neurology came by to look at Jackson this morning, and we visited some after his exam. The neurologist said, "We are encouraged by what we're seeing!" He mentioned the way that Jackson was drowsy and slowly awakened when stimulated, the way he follows with his eyes, his wonderfully strong suck on his pabby, etc and said he was responding like a normal baby. (!) The future stretches out before us with a million unknowns..."but I know Who holds tomorrow, and I know Who holds my hand."

Steps

At first I thought I would title this post, "Two steps forward, one step back". Then I thought maybe, "One step forward, two steps back". Sometimes it feels hard to discern whether we're gaining or losing ground. I'm confident that we are indeed gaining ground, but our love for our little buddy combined with our overwhelming desire to be home makes even the smallest set back feel devastating. Yesterday was a lot of progress (two lines out, breathing tube out, chest tubes out) mixed with just a little bit of set back in the form of discomfort. Today was a lot of progress (all medicinal drips stopped, only minimal oxygen needed, feeds restarted) followed by a lot of set back (fluid around his lung, couple of drips restarted, lots of discomfort, feeds held, oxygen turned back up, chest tube placed). Wow--it feels really, really difficult to go backwards.

Something that Mason said earlier really helped me. He used the analogy of Charlie loving to swim in the deep end without floats. He's convinced that he can always, no-matter-what, stay afloat on his own. Mason has to occasionally give him the opportunity to get really good and worn out in the deep end just to help him see the potential danger. Mason was comparing it to us needing to rely on God. That got me to thinking about the similarities between Jackson's situation and ours. Jackson is hurting and can't understand why. He doesn't realize that the pain he is experiencing is going to result in life. It already has! We are so pained to watch his suffering--feeling almost crushed by it at times. But we know it is for his good. We wouldn't spare him one hurtful minute if that hurtful minute can help him in the end. It's just the same for us. We can't understand why God is allowing us to hurt so badly. It feels like death. But the truth is that He is working it all for good and ultimately for life. We know He is infinitely more loving toward us than even we are toward Jackson. How He must ache to see us suffer! But He loves us too much to spare the life-giving pain.

"When I thought, 'My foot slips,' Your steadfast love, O Lord, held me up." Psalm 94:18
"He will not let your foot slip." Psalm 121:3
"The mind of man plans his way, but the Lord directs his steps." Proverbs 16:9
Whether our steps are forwards or backwards, they are being directed, and we are being kept.

P.S.By the time I actually published this post Jackson's oxygen is again being weaned, his feeds are again restarted, and he is sleeping comfortably. Praise the Lord and please keep praying!

A Little Setback

Jackson is having a harder time breathing today. A chest x-ray showed his right lung is collapsed. A subsequent ultrasound revealed he has quite a bit of fluid in his chest. This fluid pressure is the cause of the lung collapse. Additionally, quite a bit of swelling returned on his head. The doctors are inserting a chest tube to start aleviating the build-up. Please continue to pray for our little buddy.

Wednesday 10/15/14

There is some strange talk around here that this little guy may make it :)

He is still having blood pressure spikes because he's uncomfortable. However, his main problem since birth was extremely low oxygen saturations. Now for the first time in his life the sats are perfect at 100%.

"Blessed be the Lord, who daily bears our burden, the God who is our salvation. God is to us a God of deliverances, and to God the Lord belong escapes from death." Psalm 68:19-20

God is good

The breathing tube is out and my buddy is back in my arms!

Happenings

We are making progress! Jackson had two heart lines that provided direct monitoring of the pressures in his right atrium and left atrium. These were both removed this morning! He has had two chest tubes in his chest as well. These were placed at the time of surgery to drain excess blood and fluids from around his heart. These were also removed! He is still nice and sleepy from the sedation they gave him at surgery time, but as soon as he starts to wake up they plan to take out his breathing tube and switch him to oxygen through his nose. Pictures to follow!

Tuesday

Jackson is doing very well! It is such a relief to have his chest closed and to see him getting rid of all that swelling. We are always anxious to get to the hospital in the morning, but today I felt a new and wonderful anticipation...wondering how he would look, what progress he had made overnight, etc. Previously when he was making progress it was all with the underlying thought of surgery. Now it is all with the underlying thought of home. Wow.

So here's what the next weeks will hold for Jackson, Lord-willing: breathe with no extra support, get rid of as many meds as possible, get rid of invasive lines, work on feeding. We so appreciate your prayers for consistent progress in these areas! They are currently weaning him from the ventilator, and as long as he tolerates that okay they hope to get his breathing tube out tomorrow. He was never able to completely breathe on his own before surgery. Their thought and our hope is that perhaps that was due wholly to his heart problems. Our prayer is that he might have no trouble with breathing on his own. He has been able to stop a couple meds already and they hope to stop a couple more today. He was off breast milk for a few days because of surgery but now is back to every three hour feeds through his NG feeding tube. God-willing our next several posts will be to update on his progress! Our hearts are full of gratitude.

My buddy

Surgery #2 - Updates

We will update this thread as we receive news.

10:49 a.m. Jackson is back in his room recovering. The below team (which is only 25% of his caretakers) is meeting to map out the plan from here. Hopefully they will let us see him soon!

10:03 a.m. Things went so well he finished early! Praise the Lord! They even said its possible we would be discharged in two weeks!

9:52 a.m. We received a call that the surgery is going very well and shouldn't last much longer! The below monitor connected to the OR tells us Jackson is doing very well.

Today's Surgery - Updated

 A few minutes before the team left the surgeon decided to install a permanent pace maker. (As a side note there is a chance that Jackson's heart could recover at some point and the pace maker would be removed.) I can see the wisdom in this even though it left us a little stunned.

The reality is that 6 weeks ago we received a call to come see Jackson one last time. Now, with help from a little machine, we make one more step toward taking our little boy home. This is great mercy.

___________

Original post:

Today Jackson will go in to receive permanent pacing leads (but no pace maker yet) and have his chest closed. We will post updates as we receive them. Also, we would like to ask for prayer for a really sweet couple we met in the NICU. Their son also has Transposition of the Great Arteries, and he will have surgery today also.

"Let your steadfast love, O Lord, be upon us, even as we hope in you." - Psalm 33:22

Post-op day #4

Jackson's attending physician and I ran into each other in the coffee room here at the hospital this morning. Without me even asking, she said she feels Jackson is doing "very well". Those words always feel like balm on an aching wound. Even if someone has just said them to me and then another person says it again it always has the same effect! My heart is so thankful to hear them today. Yesterday was extremely rough emotionally. Jackson was technically doing well yesterday as well, but my heart couldn't recognize it. He looked too bad, and my arms felt too empty. I'm thankful for a night of rest, a very attentive and sweet husband, and for new mercies from a God who never sleeps or forgets. Jackson is scheduled to have his chest closed tomorrow afternoon. They may go ahead and place pacer leads at that time as well, just in case he is still looking like he'll need permanent pacing in a week or so when they get to the end of the likely "window for opportunity" for his heart to have corrected itself. They said he may initially have increased swelling after his chest closure but that it shouldn't be nearly as extreme as this go-round. He is still significantly swollen at this point, but has also made a TON of progress from where he was at a couple days ago. They anticipate that after his chest is closed he will be able to progress very quickly. They hope for him to be off the vent a couple days after tomorrow, and hope to get rid of several meds he's on right now by then as well. A dear sister said this morning that before we know it we'll be looking back on and talking about his stay in the hospital. I know that's true. I can't wait!

Of superheroes and surgeons

Below is a picture of Jackson's surgeon...we're pretty sure he wears a cape under his white coat.

Jacks...post-op day #2

Our little buddy is plugging along today. He has peed off a lot of fluid, but has enough left that we're not even sure if we can tell a difference yet. If I look at him at just the right angle I can just barely make out some of his familiar little features, but otherwise he is unrecognizable. Here are some prayers and a major praise:
Prayers--his heart is still out of rhythm. He is in what they call Complete Heart Block right now. This means that his upper chambers are not communicating with his lower chambers. The heart block is being "corrected" with a pacemaker right now. Please pray his heart might begin to beat correctly on its own.
He is still extremely swollen with fluids in his tissues. He is making progress, but it is slow. Please pray the swelling would resolve as quickly as is safely possible.
Praise--as we mentioned previously, he was at risk of brain damage from the surgery itself because of possible brain bleeds. Since his surgery Jackson has had two ultrasounds of his brain. Both of these ultrasounds showed that he suffered no further brain bleed during surgery. We are so grateful.

The Hard Days

So that we don't give the impression we always ride above the storm I'll talk about yesterday. Yesterday was painful, very painful. We heard some things about his heart we were hoping not to hear. That was painful. But we've heard hard things before. I remember a storm that hit Kirksville a couple of years ago. We happened to be on the road when the front hit. The wind was so hard we were being pushed off the road and we couldn't see anything for rain. However, in a short time we were able to get to shelter that took the edge off. That's how its been with hearing hard news. But something about this was much worse.

Along with the other issues Jackson was retaining fluid. As the day crept on the fluid continued to build in his shoulders and head. I spent most of my time yesterday distracted with errands and watching heart lectures. After some dear friends left (who happen to also be family) I stopped to really look at him for the first time. I cannot write about it except to say I wasn't expecting it. The effect was a stunned blankness. I couldn't process or do anything for a long time and I couldn't understand why I wasn't recovering.

Then the story of Job and his friends came to mind. In chapter 2 Job's friends hear about the horrible things that were happening. So, "they made an appointment together to come to show him sympathy and comfort him." They were so hurt by the suffering of their friend they dropped everything and came to help. I'm sure they planned to talk through the pain and offer any practical service they could. However they found themselves unable to anything on arrival. The story says,
And when they saw him from a distance, they did not recognize him. And they raised their voices and wept, and they tore their robes and sprinkled dust on their heads toward heaven. And they sat with him on the ground seven days and seven nights, and no one spoke a word to him, for they saw that his suffering was very great. This gave me an explanation and a task.

Explanation: When you hear about the horrible things endured by someone you love it causes deep pain and a willingness to drop everything. But when you see what the horrible thing has actually done to the person ("they saw him" and "did not recognize him") it empties everything. It helped to understand what was happening with me.

Task: As they stood there stunned they found only one thing to do for their friend. They sat with him in silence.

So I put everything in my backpack and sat with him in silence. The aching remained, but the breaking did not.

End of post-op day #1

We have a very kind and knowledgeable night nurse who reassured us that Jackson is doing the things they would expect after this surgery in terms of his entire physical status right now. That was such a relief. She also said it is very normal for the heart to not be in rhythm following such a major surgery--that the heart "freaks out" for a while after being messed with. We are hopeful! She said she plans to have a "boring night" with Jackson. :)

New address

Please note our new address for anyone sending mail:

Jackson Vann
CICU 8
St. Louis Children's Hospital
1 Children's Place
St. Louis, MO 63110

Prayer needed

As I just mentioned, Jackson's status changes very quickly. Just shortly after my last post the doctors began to suspect a problem. Jackson is extremely swollen following surgery but the swelling is almost totally in his head and upper chest. When the doctors noticed a growing amount of swelling they suspected a blockage in his heart. They did an urgent bedside procedure to look for possible clots around the outside of his heart that could be leading to increased pressure/blockage. They found nothing. The surgeon wonders if there might be a clot forming at the tip of his PICC line. They will begin blood thinners to try to prevent any further clotting. They are also beginning diuretics to attempt to get rid of excess fluids.

Also, the doctor mentioned that if his heart arrhythmia hasn't corrected within a few days they will implant a permanent pacemaker. We SO desire that his heart might be able to beat on its own. Would you pray with us for this and for the physical well-being of our precious son? Mason pointed out this is another invitation to look to Christ. He has proved Himself a very present help in trouble (Psalm 46).

Post-op day #1

Jackson is continuing to recover from surgery. These critical time periods are so difficult in terms of updates-his status is being invasively monitored continuously and varies constantly. Overall, he is doing well! His little heart is now pumping oxygenated blood, and his oxygen saturations are hanging out at 100%! Some things to pray about--his heart is currently out of rhythm on its own, so it is being paced to maintain the right rhythm. This can just be part of the heart's normalization process after surgery or could possibly be a result of a valve being negatively effected during surgery. Pray that this might correct itself in the next few days. Also his body is still shifting fluids to the wrong places as a result of the general trauma of a major surgery. Pray his fluid status might be corrected. If he is doing well enough overall then they plan to surgically close his chest tomorrow. Right now it is open to allow room for tissue swelling. It is emotionally difficult to see him with his incision, as well as being extremely swollen from fluids. But...he is on the other side of surgery and his heart is working. How can we do anything but rejoice?

8 Hours After Surgery - Update

His stats are trending in a good direction! His oxygen saturations are a critical stat due to his condition. He is currently at 94, which is very good. He is swelling a good bit and they warned us that it will be much worse in the morning. We will post another update then.

Jackson Samuel

Together at last...

Surgery- completed

6:04 pm
Jackson's surgery is finished at 9 hrs, 14 minutes. The surgeon came in and said a lot of things we could barely understand, but started with, "Jackson's doing well". Praise God. His surgery ended up being more complex than was expected. He had two holes in his heart (which they were aware of prior to surgery), but when the surgeon looked for the second hole (after correcting the first) he wasn't able to find it. He assumed this meant it was too small--which would lead to the conclusion it did not need to be addressed. After correctly attaching his arteries (which were also more complex than expected), Jackson was removed from bypass and his heart was working, but the echocardiogram showed a problem. Immediately the hole was not only recognizable but had increased in size (presumably from the new pressure). Jackson was placed back onto the bypass machine for a second time and surgery began again. With great difficulty the surgeon finally located the hole--directly under his tricuspid valve. He was able to repair this as well. Jackson is now off the bypass and moving back to CICU. He is still in a critical time period and we continue to appreciate and plead for your prayers. The surgery was successful and this is a tremendous answer to so many, many prayers. Thank you, and again, praise God!

Surgery Updates

We will post updates here as we receive them.

5:00 pm The nurse called and said they should be finished in an hour or less.

4:04 pm Jackson is off the bypass machine. An echocardiogram was performed on his heart and was "satisfactory". They are now working to stabilize the pressures in his heart, and to stop the bleeding around his heart. The nurse said, "In other words, things are going as they should." Chest tubes will be inserted, and a decision made as to whether to close the breast bone entirely or leave it partially open for now to allow for possible swelling.

2:14 pm The arteries have been switched. The surgeon is now closing a hole between two chambers of the heart. All is still going well.

12:22 pm Everything is going well. They are starting work on the coronary arteries.

10:26 am The lines are in and everything looks good. The surgeon will take over and start the procedure.

Off To Surgery

Once again we let others take away our buddy to try and help him. The procedure should last around 6 hours with updates every hour and a half. We will post updates as we can.

The floods have lifted up, O Lord,
The floods have lifted up their voice,
The floods lift up their pounding waves.
More than the sounds of many waters,
Than the mighty breakers of the sea,
The Lord on high is mighty.

Psalm 93:3-4

Surgery- rescheduled

Jackson's surgery has been rescheduled for tomorrow morning around approximately 8:15 am. It could potentially be postponed again if something changes during the night, but as of right now there is a bed space open for him in the CICU. They expect the surgery will last 5-6 hours. We will try to post updates as we're able.

The sky was breathtaking as we left our motel to go to the hospital Monday morning. I was looking at it and marveling at the Lord's power and praying that in all of His displays of power and majesty He might not forget us. Immediately this verse came to mind, "Can a woman forget her nursing child, that she should have no compassion on the son of her womb?" My answer would be "No way!" But His answer is, "Even these may forget, but I will not forget you." Isaiah 49:15

The Surgery - Postponed

The surgery has been postponed. The Cardiac Intensive Care Unit (CICU) is completely full, and they cannot do the surgery until a bed opens. It is possible this delay could stretch into next week.

We were tempted to be discouraged. However, we were rescued by thoughts of the tender goodness of God. It would take eternity to thank God for all the mercy we've received this past month! I hope the change in the pictures below will encourage you like they have encouraged us.

This picture was taken on September 5, 2014. At this time he was the highest risk possible for seizures and organ failure. The medical staff started preparing us to lose him...

...and this is his picture from today during his nap. Praise the Lord!

"Bless the LORD, O my soul, And all that is within me, bless His holy name. Bless the LORD, O my soul, and forget none of His benefits." (Psalm 103:1-2)

Mason

Sunday

So far we are still on for surgery Tuesday. They expect it will be early morning, but aren't able to give us a specific time. We feel extremely blessed to have such a knowledgeable team of physicians caring for Jackson.

Jackson is one month old!

Surgery update

Jackson's open heart surgery is tentatively scheduled for this coming Tuesday, October 7. Because of the nature of the hospital we're in there are other more critical surgeries (such as organ transplants) that could possibly push his back. So if the schedule stays open and the Cardiac Intensive Care Unit has a bed available--God willing, Jackson will have his surgery Tuesday. More details to follow, but we greatly value and desire your prayers!

4 weeks, 37 weeks gestation (tomorrow)

Jackson has had quiet days of sleeping and growing. The nurse today showed me how to pick him up (tubes and all) and put him back down on my own. Still a bit intimidating, but so wonderful too! I have officially lost count of how many times I've held him.

Our days haven't been quite as quiet as Jackson's. :) We're having lots of good times with our kiddos. Yesterday was a trip to the zoo for the kids and I, while Mason stayed back at the hospital with Jackson to wait for doctor's reports. We are all longing for home, and missing the saints at Lake Road Chapel. The kids talk often about taking Jackson home. I still feel so bewildered by the thought that, Lord-willing, we will be able to do that...even if it's weeks away yet. Jackson is such a gift!