MRI report #2

Mason just returned from the hospital with a report on Jackson's MRI. The neurology report was more positive this time! It seems that this is possibly related to the bleeding he had in his brain--they feel it's not as severe as they first thought. While they were originally describing his prognosis of cerebral palsy as being severe, now they don't feel the CP will be this extreme (though they wouldn't commit to an actual prognosis). Furthermore, while cardiology was originally concerned that open heart surgery would not necessarliy lead to any increase in quality of life, now they feel he would definitely benefit from the surgery. We are praising the Lord for these good reports!

They are now working to schedule open heart surgery, and hope to get him in as early as next week. This surgery carries a significant risk of damage to vital organs. For Jackson, it carries a very significant risk. Pray with us that God would guide the surgeons, nurses and all involved in this surgery. Pray also for supernatural protection of Jackson's major organs during this surgery and for very positive all-around outcomes.

Yesterday my cousin's wife sent this verse from a book she's been reading:

"Be still; be strong today"
But, Lord, tomorrow?
What of tomorrow, Lord?
Shall there be rest from toil,
Be truce from sorrow?
"Did I not die for thee?
Do I not live for thee?
Leave Me tomorrow."

Thanking God for grace today and looking to Him for grace tomorrow,
Rachel for the Vanns

Buddy

You can blame Pop, Yai Yai, and Lauren (Vann) Rogers for the lack of post yesterday! We were wonderfully taken up with our Alabama visitors. Yai captured this precious video of Jackson--I had to post. Look, Aunt Beth, his little onesie is just perfect! 

3 weeks old, 36 weeks gestation

We are so grateful today for the milestone of three weeks of life! God has given to us more abundantly than we could have ever imagined in those first few hours and days of Jackson's life. Here are a few prayers, praises, and pictures. Thank you so much for continuing to pray with us and bear our burdens.

Prayers: Last night Jackson spiked a bit of a temp. It was nothing too significant, but the doctors had labs and even a chest X-ray run this morning to make sure he wasn't starting an infection. This helps us to better know how to pray...pray that Jackson might not have any infections prior to his surgery or even his MRI. This is would put more stress on his little body and possibly delay progress.
Also, he continues to not breathe quite deeply enough. Again, this is nothing alarming at this point, but it would sure help him out if he could take deeper, easier breaths. And, finally, we would appreciate prayer that our family might be spared from typical seasonal viruses or other sicknesses. Thus far the Lord has been very kind to spare us. If we were to get sick it would greatly limit (if not stop altogether) our ability to spend time with Jackson. The Lord is able!

Praises: As I mentioned, Jackson is three weeks old today! I can hardly believe it. I feel like it was only a day ago I was blogging that he was two weeks. I got to hold him again today for quite a while--those times are unspeakably precious. The nurses have started giving us a bit more liberty in terms of diaper changes, getting him dressed, etc. and tonight we all got to help give him a bath! The kids loved this, of course. Bethan has been trying to encourage him by telling him, "I know it's hard to grow any hair, but you sure are doing a good job." :) :)

Lil Jacks

Our little buddy has several reports this morning! The doctors decided he didn't need to be warmed anymore--he's keeping his temperature up just fine. So not only did they move him out of the isolette, but actually moved him to his first crib. I guess as a mom many of my strongest desires throughout all this has been for the "normal", "everyday" things that you never knew you appreciated so much. Things like diaper changes, buying baby clothes, pacifiers, cribs. Therefore these things have been some of my greatest joys and encouragements. We are SO excited that Jackson is in a crib now! And, if you were wondering, he was wearing his first little shirt when we came in yesterday.

Another significant update--Jackson's repeat MRI is scheduled for this coming Monday. The first MRI showed acute brain abnormalities; this MRI will show chronic abnormalities, as well as provide a baseline for comparison following his surgery.

I couldn't help but post several pictures from yesterday. He and I spent about three hours in the chair beside his bed, and he was so alert afterwards! He is doing much better with his respiratory rate, but does get lazy every once in a while and forgets to breathe. We appreciate prayer for continued stability until surgery (he is doing really well, overall), and for continued weight gain.

9/23/14

We received news that the follow-up MRI may be this Friday or early next week. This was a real relief because at one point the NICU doctors predicted this would be two or three weeks away. This will provide the necessary baseline for the surgery.

His weight gain and food tolerance continues to trend in a good direction. However, his oxygen saturation is periodically dipping a little lower than what we want to see. Open heart surgery is the only option to address this issue. However, the surgery carries a signicant risk of additional brain injury to a little fellow who has already suffered much. In working through this complicated situation we were greatly helped by Psalm 131:

O LORD, my heart is not lifted up; my eyes are not raised too high
I do not occupy myself with things too great and too marvelous for me.
But I have calmed and quieted my soul, like a weaned child with its mother;
like a weaned child is my soul within me.
O Israel, hope in the LORD from this time forth and forevermore.

On the aesthetic front they were able to take the IV off his head! Below are the results. Contrary to popular expression not all babies are cute in their early days. For instance, my early pictures never exposed me to the danger of making the front page of Parenting magazine :-) But with him a conservative estimate would be top 5 of all time. He just looks so precious.

Girls night at the NICU

Bethan and I took a "girls" trip up to the NICU tonight. I should say "mothers" trip actually-she is so extremely motherly. We ooed and ahhed and sang and prayed with him. Then before we left the nurse came in and said he has been getting a little too warm in his isolette so they are thinking of "lifting the lid" and did I have any...clothes for him to wear. She seemed surprised by my stunned expression! I have no idea how many stores I've walked through just aching to buy him clothes and "normal" things. I had bought him one preemie outfit because I was looking for a preemie hat and the only one I could find was part of an outfit set. We'll see if she actually puts it on him tonight, but the thought is one of extreme joy and gratitude. 

10 grams

The nurse told us this evening Jackson has gained ten grams! Thank you for praying specifically about his weight. Of course he needs more than 10 grams, but slow and steady weight gain is what we're looking for. We appreciate your continued prayers.
I was able to hold him for two hours straight yesterday afternoon. We even fell asleep together! It was sheer joy.
Below is a picture of our nap together, a picture of his new bed, and a couple extras from today.

15 days old (35 weeks gestation)

Prayers: Today the doctors decided to move Jackson to an isolette bed to better control his body temperature. His temperature gets a little low at times, and his re-heating effort burns valuable energy. His weight has fluctuated up and down since birth because of fluid volumes. Right now he's about at his birth weight...and needs to gain! They feel this bed may help him conserve energy and therefore gain weight. Please pray with us that Jackson would steadily begin to gain weight.
Praises: Today the doctors were able to stop Jackson's TPN (total parenteral nutrition) through his IV. He is now able to tolerate enough breast-milk to meet his nutritional needs. Praise the Lord! Also, he has been super alert off and on throughout the day lately. Looking all around the room with is dark blue eyes, chewing on his fingers, stretching, etc. He is so CUTE it makes our hearts hurt. And the final praise is that our family is back together again. Dad & Mom met us today to bring our kiddos to us. They were so precious ooing and awwing over Jackson. I think Bethan said bye to him about 10 times before we left.
Thankful...and cast on the Lord.
Rachel for the Vanns

Jackson's neurological status

Since my initial post regarding Jackson's MRI results was very vague, I thought I might post a more in-depth explanation. Jackson was born with severe fetomaternal hemorrhage. Though the team working on him were extremely knowledgeable and quick in their interventions, nevertheless there was a significant amount of time that passed where Jackson did not have adequate oxygenation to his vital organs. Jackson's liver and kidneys took a hit, but livers and kidneys are able to repair themselves. His bounced back fairly quickly. He never required dialysis, for example. But the brain cannot repair itself. The neurologists suspected brain damage just based solely on the severity of his hemorrhage. The MRI confirmed their suspicions. Their prognosis for Jackson is a 90% chance of severe cerebral palsy. Based on his MRI, they predict he may be wheel-chair bound and may never be able to speak or swallow on his own. These are predictions. They are based on medical science and the extensive experience of our neurologists. However, they themselves call them "predictions" at best. Each child is different and responds differently. They have told us over and over again that only time will tell the extent of what he's suffered. In the meantime, dear praying friends--nothing is impossible with God.

He answers prayer

No significant physical changes to report for our little buddy today. He continues to tolerate larger and larger amounts of milk through his NG tube, so that's definitely a plus! (Don't think TOO large...he's up to 4 tsp per feeding. :) )
Tonight was another first though--my first time to rock Jackson and sing to him. It was so blissfully normal. I really felt like we might as well have been in our living room at home. Tonight at 12:23 am he will be two weeks old! My heart is overwhelmed with gratitude.

Here is one of the songs I sang to him:

God is so good//God is so good//
God is so good//He's so good to me

He answers prayer//He answers prayer//
He answers prayer//He's so good to me

I praise His name//I praise His name//
I praise His name//He's so good to me

I love Him so//I love Him so//
I love Him so//He's so good to me

Yes, He answers prayer. He's so good to me.

Grateful for Friends and Family

My sister, who hates flying, flew standby to come help us get setup for our temporary move to St. Louis. Every step of the way God has sent someone to bear a burden that was too big for us. I don't know where we would be without the love and sacrifice from friends and family.

Progress

Today they removed Jackson's arterial line, so this means no more real-time blood pressure monitoring. It is so reassuring to see the doctors decreasing their monitoring and getting rid of lines...it means he's making progress! His art line has been in his left arm since birth, and has been secured in place with a little arm board, gauze wrap, etc etc Now it's gone and he hardly knew what to do with that left arm! He had his hand up by his mouth for the longest time and we thought he might even suck that little thumb, but he never did. I was able to hold him for a long time this afternoon. One of my goals in life right now is to lose count of how many times I've held him. Right now we're at four. :) His respiratory rate has stayed a little too high the last couple of days since removing the vent, so we would appreciate prayers for deeper, fuller breaths.
He was so alert today! Looking all around at the big, bright world.
We are so grateful for each of you dear readers and for so many prayers from all over the world. God is good.

Settled

This morning started like most of our days so far--with one huge exception. We didn't pack up all of our things and carry them back to the van for the day. The tremendous generosity of family, friends, and even strangers combined with a motel willing to offer us a deeply discounted rate has allowed us to settle in to a home away from home. My clothes were in a drawer this morning! Plus, I now have a housekeeper and someone to make my bed every morning. Ha!
Praising the Lord...
Rachel for the Vanns

O pabby day

Jackson got his first pacifier (i.e. pabby) two days ago and yes, I am just now posting pictures. At one point in time the doctors weren't sure that Jackson would even have a suck reflex. He loves his pabby. To see him sucking away did my heart so much good. All thanks to God--the Maker and Sustainer of our precious son!

A Non-Negotiable Truth

Surely God is good to Israel. - Psalm 73:1

Psalm 73:2-14 is a personal account of a man facing significant difficulties. However, before he gets into the grim details he wants to establish a non-negotiable fact: God is good to His people. It is like he is saying, "You are about to hear about real struggles in the midst of a hard trial. Some of the things you hear may be twisted to call God's character into question. So lets nail this down at the outset: God is good to His people."

We want to do the same thing here. The past week has brought new struggles and the future is uncertain. Nevertheless, no matter how this story ends or how hard we struggle we want to establish a truth: God is good to His people. Anything recorded here that leads to a different conclusion is either misunderstood or miscommunicated.

NICU day 1

Jackson was moved from C(ardiac)ICU to N(eonatal)ICU today. Our new address for receiving mail will be as follows:

Jackson Vann
NICU 529
1 Children's Place
St. Louis, MO 63110

Our little pal got his breathing tube out this morning as well, and is breathing on his own with oxygen support through a nasal cannula. He's been tanning under the bed warmer lights and is pretty mellow today except for some nasty, thick mouth secretions at times. I was able to hold him again today--he is such a little bit! Three dear visitors this morning and two more to come this evening. So thankful for all the love and support...more thankful than we could ever express. We are very weak.

Jackson's Life Flight - Columbia to St. Louis

This is video of Jackson's emergency departure from Columbia to St. Louis. The warmup took a chunk of time so here are time-specific links for liftoff.

Helicopter start: http://tinyurl.com/jv-start

Takeoff: http://tinyurl.com/jv-departure

Big Friday

The Vann family are firm believers in Big Friday Nights. Food, fun, family. :) We're not at home and I doubt much partying will be happening in CICU room 4 today, but Jackson is having a big Friday.

This morning he was able to wean completely off the ventilator. He still has the vent tube in place which is being used at this point for CPAP support (it only gives a breath if he doesn't take one for a while), but otherwise he is breathing on his own.

Right now he is about to return from a cardiac cath procedure called atrial septostomy. It helps keep open the hole in his heart that is currently allowing his blood to stay oxygenated (by mixing) until he can have his heart surgery. They said he tolerated it very well.

After one or two days of stabilization following this procedure, the plan is for us to be moved to the NICU until he is ready for his heart surgery. They plan, at this point, to perform his surgery in three weeks. In the NICU they will focus on helping him make progress on normal preemie type issues (feeding, breathing, etc). Our hope is in the Lord. Please, please, please keep praying.

9/11/14

MRI results came in showing significant brain damage. We are still processing, still struggling, and still thankful for his precious life. God sent three encouragements following the results:

1- Dad's scheduled flight to Mexico yesterday was delayed twice...in St. Louis. He was able to be here just long enough to receive results with and cry with us.
2- Shortly after MRI results, the dear pastor of the church in Sedalia, MO and his wife happened to be passing through St. Louis on their way to Illinois and stopped to see us. They cried with us as well, and bore us up during some of the lowest moments we've known yet.
3- Mason's dear friend Johnny drove up yesterday (was already driving before we knew results) to be with us. It was so wonderful to have him here for support and even for distraction.

Brother Clint shared this verse with us while he was here. "I would have despaired unless I had believed that I would see the goodness of the Lord in the land of the living." Psalm 27:13 I felt almost stunned when he said it by how absolutely, wholly perfect it was for my heart. From the very depths of despair we certainly can't see the goodness of the Lord. But we believe. And as our hearts trust in Him, we truly are helped (Psalm 28:7).

9/10/14

Wednesday the 10th was a wonderful day! Two huge firsts--first diaper change, first hold. I have absolutely ached to do both of those things. Then in the afternoon we had a very unexpected visitor. We were messing around in Jackson's room and looked up to see one of the medics from Jackson's flight! He said he just wanted to come check on Jackson. He was so, so kind and caring. Filling in the details of how Jackson did on his flight, etc. What a privilege that we've had caregivers like these from day one. We have no doubt whatsoever that this man, by God's grace, is one of the major reasons Jackson is alive today.

Thank you, God, for a good day!