Testing 1, 2, 3

Jackson is testing out his car seat right now. They like to make sure vital signs stay good for the trip home. So far he's doing great! They are still using the word "discharge" in almost every sentence, so it's looking like this may really happen...! He will be coming home on IV antibiotics, oxygen, tube feedings, oral medications, and possibly one twice daily shot. I have to admit my heart is trembling at the thought of it all. But God has brought a boy who never should've lived to the point of being able to go home. We know we can look to Him for this next step. The main verse of the devotional I read this morning was, "The Lord is the one who goes ahead of you, He will be with you; He will not fail you or forsake you. Do not fear or be dismayed." Deuteronomy 31:8 Would you pray for us? For faith to see the unseen and grace to match the needs of each day. We can't begin to express our gratitude to each of you who have cared enough to follow our journey and pray us through each step. I plan to continue to post updates on Jackson's progress and any specific prayer requests. Wouldn't it be wonderful to one day post a video of his first steps or first words? God is able. We are anxious to see what His best for Jackson turns out to be. We know it has to be good...

Thankful

I hardly know what to write when I pause for a moment to think of what I'm thankful for this Thanksgiving Day eve. I can't help but fly backwards mentally to the morning hours of September 5th when I stood by Jackson's bed for the first time. The wonder I felt in my heart when I was able to really look at him for the first time was overwhelming. There was my son. There was the baby who had kicked and prodded inside of me so much...and then, all of a sudden, not so much. His life seemed like a fragile thread of a spider's web. The slightest puff of air and it would vanish before our eyes. I couldn't shake the feeling of fragility--or the feeling of perfection. He was just so perfect. It's unbelievable, really, what happens to you as a parent in a situation like his. When I first saw Jackson he was literally covered in equipment. Breathing tube, monitoring leads, umbilical line, central line, arterial line, peripheral line...not to mention the 20+ EEG leads covering his head. But when I looked at him I saw none of that. He was alive. He was my son. He was perfect. Before I was able to leave the hospital in Columbia, when Jackson was already in St. Louis, the nurse brought me their packet of paperwork I needed to fill out. Inside was a paper that said, "Application for birth certificate/death certificate". I hesitated for a split second thinking, "Which one?" Then determined in my heart that I would fill out his birth certificate. No matter what happened, no one could deny that Jackson Samuel Vann had lived. Now, in just a few more minutes, Jackson will be 12 weeks old. Today I held him, and rocked him, and sang to him when I changed his diaper. Yes, I am very, very, very thankful for Jackson.

But what does it mean when we say we are "thankful"? To whom? I'm certainly not thankful to Jackson for living. He had nothing to do with it. I'm thankful to the doctors for their care, but they knew as well as we did that they couldn't ultimately preserve his life...they didn't even expect him to live. The fact of the matter is that Jackson isn't the end-all. We are never given gifts only to turn around and tell that gift, "thank you". That's crazy. Jackson is our gift. But he is only a gift. Jesus is the Giver. So tonight I am marveling at the tremendous gift of Jackson's life--and falling down in worship at the feet of the Giver. Thank You. You are...good.

"Every good gift and every perfect gift is from above, coming down from the Father..." James 1:17

"Give thanks to the Lord, for He is good; for His steadfast love endures forever!" Psalm 118:1

P.S.The doctors have said we may possibly be discharged Tuesday.

Worth a thousand words...

Buddys and bottles

Well, there isn't a lot to report from around here. The doctors have left all of Jackson's meds "as is" for several days in order to give him time to be truly comfortable and settled before trying any more weans. The nurses have tried to turn his oxygen down just a bit more a few times, but so far it hasn't worked. He is on 1/16 of a liter of oxygen and doing well with that. He does seem much more comfortable. Yay! He has a bit of trouble with his tummy at times, but we're wondering if it might just be the result of a TON of antibiotics. I talked with one of the doctors today about probiotics--we'll wait to see if they think that could possibly be helpful for him. He has taken his bottle several times now, and it's just so, so stinking sweet that I had to post this video from this afternoon. He has been wonderfully wide awake for the longest times! The nurses have taken to holding him whenever we're not around...I love that. I walked in yesterday morning to an empty bed and heard someone holler from the nurses desk, "I have your baby!" :) I'm so thankful for him to be loved on and cuddled even when we aren't there with him. The other two kids were with us over the last week and got to love on him some as well. Now they have gone back to play with cousins, allowing us to focus on getting Jackson home. We're praying for continued progress, and so very thankful for our little joy.

Friday

Little buddy took his second bottle today, and got in a good hold from Daddy. He was wide awake for the longest time tonight...such a joy.

Eleven weeks

We are so grateful for eleven weeks of life for/with Jackson.

The doctor told me yesterday that she feels she has figured Jackson out...he likes to do things on his own schedule. She felt he had been pushed too hard and quickly to progress and it had actually caused him to lose ground rather than gain. The plan now is to follow Jackson's time table--ie slow down. This will necessarily delay discharge, but it was very obvious to us and to all involved that he just is not ready. So for now...no weaning. Just chilling. His diuretics were increased, and his sedation was even increased just a bit in an attempt to decrease withdrawal symptoms. We are thankful to have Mason's parents here to visit for a while over the next week!

Thank you, dear friends, for caring and praying. One day at a time!

He did it!

Jackson took his first bottle! He drank 10 mls before he was tuckered out, and after he was done he was sucking his pabby like there was no tomorrow...looking for one more drop! We'll try again tomorrow. Yay!!!!!!!

Debtors

We have been overwhelmed with the kindnesses and generosity of others throughout this time. (That is putting it very mildly.) Family, friends, acquaintances...even total strangers! We are truly, hopelessly indebted for kindnesses big and small. One of those "big" kindnesses took place yesterday at noon at A.T. Still University, when a group of Mason's coworkers hosted a benefit luncheon in Jackson's honor. So, as inadequate as this is, we wanted to tell you "thank you" from the bottom of our hearts. We can't begin to tell you how touched we have been by your kindness. The donations received will be truly helpful--and the love they represent has helped us to carry on.

Thank you.
Mason, Rachel, Charlie, Bethan and Jackson

Tuesday

I apologize for the lack of information these days. It's because of the endless flow (of information) that we have been receiving. Jackson has had two very difficult days in a row. He is swollen again, but this time all over his body. He's uncomfortable and nobody seems to agree on why. If I were to diagnose him from a mother's perspective I would say he's a bit constipated, he's having withdrawals, and the extra fluid is making it hard for him too breathe. It has been challenging to deal with this in step down. The doctors are not familiar with him. Plus the mentality of step down seems more geared toward progression of what's already established than toward actual treatment of problems. It is excruciating, as a parent, to watch your child suffer while doctors search (or don't) for a cause. We're thankful for a great patient advocacy team here at Children's, and thankful for a Father who not only cares about Jackson but actually created him.

I spent the entire day, it seemed, talking with various types of health professionals. Neurology came by and said Jackson will not be able to have further MRI's because of his pacemaker. This was very disappointing as this is basically our only diagnostic tool for Jackson's neurological status other than just observing his behavior. I guess we'll continue to pray the pacemaker could be removed...and continue to take it one day at a time.  There is no doubt that Jackson responds to us socially and mentally. He is enamored with his mommy and daddy. I also was introduced yesterday to the world of home care planning. Wow. IV therapy for several weeks (because of his antibiotics for the pacemaker infection), feeding pump (though they are currently working to get him off the NG tube and to regular feeds), oral medications, twice weekly nursing visits, follow up appointments, physical therapy, occupational therapy, speech therapy...never in my life have I been more grateful for my medical training than now. I remember how obvious it was that God was calling me to nursing school. I thought all these years that the purpose was twofold--helping the sick in our community and helping with our finances. As surely must always be the case, God's purposes have proven to be much deeper than mine. I am so, so grateful to be a nurse.

Aside from all that's going on with Jackson, Mason had his heart follow up today. The doctor told him his heart MRI was consistent with his diagnosis of myocarditis, but that it appears no permanent damage was done whatsoever. Praise the Lord. What a gift health is! They will repeat an MRI in six months, but don't anticipate problems.

We know how so many (all?) of you have labored in prayer for us these last eleven weeks. Please could we ask you to continue to pray? Our knees go weak and our hearts tremble as we deal with present problems and future plans. We are in constant need of divine upholding. Pray for health, but also for faith! Peter started to sink when he looked away from Christ to the wind and waves. But, as Dad reminded me tonight, "even the wind and waves obey Him." Mark 4:41

New address

Jackson Vann

7 West Room 5-B

St Louis Children's Hospital 

1 Children's Place

St Louis, MO 63110