New Years Eve

Thank you to all who are still following and still praying! It means so much to us.

Just before Christmas Jackson started having some significant tummy aches. He has battled that off and on since then, and by last Friday our pediatrician went ahead and had him come in to be checked out. His belly is a bit of a mystery! Sometimes he doesn't spit up at all, then other times frequently; sometimes constipated and sometimes diarrhea; horrific rumbling noises; sometimes absolutely miserable with tube feedings or medicine doses then other times sleeps right through it. So we have had quite a go at "trial and error" treatment since all this started. We even tried no daytime tube feedings for two days! That was a huge fail--he only took about 1.5 ounces of milk total from his bottle. He would show interest in it only to arch his back and cry after taking a few sips. Our pediatrician feels that his belly is very irritated from the NG tube (ie foreign object), as well as from all the medications he's on. She switched him to a different antacid to see if that might help (we haven't noticed much difference thus far), cut back the amount of milk he gets at each feed (or rather stopped the advancing of the total amount for now), and told us to give gas drops religiously. He had an X-ray of his belly Monday that showed extreme amounts of air in his intestines. His pacemaker takes up a VERY significant portion of his abdomen, so it's pretty likely that that is a key trouble-maker as well. We would appreciate prayer for resolution of these issues and for wisdom for us and the doctor to know if any other changes need to be made. Of course one huge prayer would be to be able to get rid of the NG tube altogether. The speech therapist (who teaches him how to drink...not speak ;) ) has taken a bit longer than expected to come evaluate him and begin treatments...just because of the holidays. Lord-willing she will come this next Tuesday for her first visit.

These are strange days for us. As grateful as we are to be at my parents home (pray for them...I'm not sure we were ever actually invited to stay for a month!), we still aren't back to our home, so there is an aspect of still feeling/being unsettled. We are very weary of suitcases. And, though Jackson's care is far less strenuous now that the IV is gone, it is still very time-consuming and challenging to juggle the needs of one child...much less three! There is also an aspect in which coming home feels like a big let down. We were chomping at the bit for weeks to get back to friends and family--only to come home and immediately go into hiding in order to protect Jackson from germs. It is our prayer and desire that God would be more near in our isolation than He ever has been before. It is also our prayer that these trials would bear much fruit in our lives. The Bible speaks constantly of the "pruning" and "purifying" work that trials achieve in the lives of believers. But it doesn't happen by osmosis. Pray that we might learn the precious lessons God desires to teach us through these difficult days. And that at the end of our isolation we might be better companions than we've ever been before!

I see hurt all around me since Jackson was born. Usually it only takes the slightest prodding beneath the surface of any given person to uncover tremendous, deep scars and pain. I can't even begin to imagine what the friends and relatives of those lost on AirAsia are feeling right now. How I praise God, deeper in these days than I did before, that the Bible never puts a stamp on our world that declares it, "right". Or even "normal". No, sin has ruined everything. God calls it like it is, and then proceeds to assure us, "He will wipe away every tear from [our] eyes; and there will no longer be any death; there will no longer be any mourning, or crying, or pain." Revelation 21:4 I can't feel that right now...but by God's grace I know it is true and I will experience it one day.

Merry Christmas

Merry Christmas! God is good.

Monday

The big news of the day is that I just gave Jackson's last twice-daily shot...! They had originally planned to continue these till April, but changed their minds because Jackson's blood has been so thin and his IV line (ie source for easy blood monitoring) is coming out tomorrow. I never would've thought I could be so grateful for thin blood! Mason and I despise those shots...much more so than even Jackson. No more IV after tomorrow is also VERY good news. The IVs are a constant source of possible infection, keep us up for long periods at night, and also make dressing and bathing much more difficult. As long as he is weaning off the narcotics he'll still have medicine throughout the night, but those are a quick little push through his feeding tube. So tomorrow may have to be a celebration day and who knows--maybe he'll have his first real bath on Christmas Eve!

We continue to appreciate prayer for progress on his bottle. He hasn't lost ground but hasn't gained any either. Speech therapy should be starting to work with him at home within the next couple weeks. Also, an ultrasound of his venous system performed last Thursday in St Louis showed more clotting in his superior vena cava (the area that was originally blocked), as well as in his leg at the IV PICC line site. They don't plan to do anything to treat this right now but will repeat the test next month.

We adore having this little guy home.

The Jeremy Project

A few days before we left Children's Hospital, Darcie from The Jeremy Project graciously offered her time and services to come take Jackson's picture. What a gift she gives hurting and healing families! Enjoy...

Saturday

Our little buddy is doing so well in his new environment. I get the feeling that if he could he would give it an enthusiastic two thumbs up! The nurse who stops by from Home Health saw him for a second time on Monday (the first time was the evening we got home), and couldn't stop gushing about how much better he looked already. He really does look great! His belly had been really distended in the hospital for his last few weeks there--all that is gone now and some of the generalized swelling has gone down also. If we can keep from waking him up when we give him his medicines, he will often sleep for longgg stretches at night. But the biggest and best change we've noticed is little smiles and coo's. Heart. Melting. Jackson has worked his way into every inch and corner of our hearts. His care is SO demanding (so far we haven't been able to get any extra nursing care), but there certainly isn't a drop of bitterness in it...he is SO worth it.

Jackson had his first follow up visit yesterday with a cardiologist in Columbia. It turned out to be the one I mentioned in our initial story who so gently explained to us all that was wrong with Jackson's heart! He indicated that he has kept up with Jackson's progress ever since then. It was such a relief to know we will be in very good hands for follow up care.

Our next follow up appointment is in St Louis next week and may be the point at which the IV can come out...! We continue to cherish your prayers--we all started getting sick with bad colds almost as soon as we got home. It has been hard to recover because of limited time to rest. So far Jackson hasn't caught it, and we are praying he wouldn't catch ANY sicknesses this winter. Here are a few recent pictures--including Bethan wearing a mask during her sickness. :)

Home

Jackson did so well on the trip home! He loved the bumpy ride and only cried during stops. And he has continued to do well at home also. He is hardly using his oxygen, and seems to do just fine without it. His biggest problem is those awful, horrible, terrible narcotics. He still has times of withdrawal (sometimes several times a day) where his belly hurts, he breaks into a cold sweat, and he starts having a bit more trouble breathing. We ache to see him totally off those medications. Would you pray for him for no more withdrawal symptoms and the ability to wean quickly? Right now the doctors predict it may take as long as six months to be rid of them completely.

The transition to home has been...really, really tough. Though there were several team members working fervently to ensure we had all we would need when we got home, it didn't quite work out that way. I think the biggest missing piece of the "will this work" question was the fact that we weren't bringing home a machine but a child. So when you do finally manage to get twenty three medicine doses administered over 24 hours, and the tube feeding hung, and two shots given...there is still the most vital thing to attend to--the baby. He pees, he poops (sometimes on your lap), he withdraws, he gets tummy aches, he gets cold, his pabby falls out, and sometimes he just needs a good snuggle. We are very, very tired. But--you all must still be praying for us, because somehow today doesn't feel quite as hard as yesterday or yesterday as hard as the day before that. Praise the Lord! Jackson had his first visit with our pediatrician yesterday (picture below), and she worked feverishly to try to get us qualified for at the minimum 12 hour nursing care each day. Unfortunately it was Friday so it didn't happen yesterday, but we are expecting to hear more on Monday.

In other news, Jackson chugged almost a whole ounce from his bottle this afternoon! That's the most he's ever taken and the quickest he's ever taken it.

Grateful and in need of grace...
Rachel for the Vanns

This guy

We heard tell that this little guy is free to a good home...I think we'll keep him!

Discharge is tentatively scheduled for 1 pm! My parents have graciously offered to share their home with us while our foundation repair is wrapping up. That will be such a help!

In going home we continue to appreciate prayer for protection from seasonal viruses going around at this time of year. Jackson is still very fragile. Along those lines, and because he will have an IV line with the potential for infection (for 4 weeks), we plan to stay at home as much as possible for at least a month (or more). Jackson is itching to meet all the dear people who have loved him from afar, but unfortunately he will have to wait a bit. :( I highly doubt it needs to be said, but we would appreciate that anyone wanting to stop by call ahead of time and please avoid us if you don't feel well or have sick family members. Lord-willing we'll be headed home soon....!!!!!!!!!!!!

Wednesday?

God-willing, Jackson will be discharged from Children's on Wednesday! He had an extremely busy and un-fun day (a vaccination, practice run of me inserting a new NG tube, circumcision, etc.), but surprisingly enough his oxygen levels were the best they've ever been...on room air! A medical equipment company delivered our home oxygen today--maybe we won't need it! They talked about discharging him tomorrow, but we all ended up agreeing an extra day would be best. His car seat is ready and his diaper bag is packed. Is this really happening??

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

Monday

Well, we had a full weekend! We decided late last week to go back home for a couple days over the weekend. It was wonderful to see so many friends and family.

As of yesterday morning, Jackson is now officially step down status. Praise the Lord! He didn't actually move to the floor until this morning. His blood levels were low this morning so he received a small blood transfusion just a bit ago. He has done well with that. Unfortunately he has gotten progressively more swollen over the weekend. They are looking into possible causes for this. The increased swelling seems to be directly related to somewhat labored breathing and decreased oxygen saturation levels. It is our prayer that any underlying causes of these little complications might be thoroughly identified and thoroughly dealt with before we go home. God knows every detail about our little man...we are looking to Him for His help! Speech therapy is planning to get involved today to begin assessing his ability to take a bottle or nurse. We'll keep updating! Thank you for every prayer.

Friday

Jackson must have worn himself out with all that soul-gazing yesterday, because he has been sweetly snoozing almost all morning. Even this is a real answer to prayer. He is on a medication called dexmedetomidine, and has been for most of his life. This drug has the potential to cause withdrawal when it is weaned, and he has shown signs of this in the past when they have turned it down. Yesterday they cut his dose in half (the largest amount they've ever tried to wean at one time)...he has shown no signs of withdrawal or discomfort! We are so thankful. His attending physician right now is one of the two heads of the CICU. He reiterated during rounds this morning how absolutely shocked they all are that the pacemaker infection responded to antibiotics. Praise God! He also said Jackson will be on an oral antibiotic for a little over a month then will be on a suppressive antibiotic for as long as he has his pacemaker (potentially his whole life). The doctors have said it is still possible he could regain proper conduction of his heart, making the pacemaker no longer necessary. We are praying this might be the case, but in the meantime we're all very thankful for that lifesaving device. We moved again today but just to the other, more spacious, side of the room. It's been another good day.

A new sort of surprise

I came in this morning to a lot of good news! Jackson's fever had not returned, his white count was good, and they planned to move him back to the annex room...the last stop before step down. Praise God!! Jackson's surgeon (the one who performed the pacemaker clean out and rigged the antibiotic device just for Jackson) came in and looked noticeably shocked when he heard the report. He then proceeded to do a half-dance across the room and said, "THANK GOD!" He looked like he was about to tear up, and I know I sure was. His kindness and skillful care have meant the world to us...to see him care so deeply about Jackson's welfare was very moving.

So now Jackson is in 14-A, and he has had a good day. I've never seen him so alert and attentive! Staring and staring at me while I was holding him! The nurse asked him what he was doing. I told her I was pretty sure he was gazing into the depths of my soul. :)

THANK YOU for praying us through this latest complication. All praise to the Giver of life!

Nurses

This picture is a couple weeks old, but these are two of our favorites--Aunt Nikki and Aunt Sarah. World-class! Thank you two for all you've done for us...we are so blessed to have met you.

Jackson's room

Our current address is as follows:

Jackson Vann
St. Louis Children's Hospital
CICU Room 3
1 Children's Place
St. Louis, MO 63110

And if you've ever wondered what CICU Room 3 looks like...here it is! The second picture is cards where we write things we're thankful for (even some of the nurses and staff have written notes) about Jackson. The last picture is the view from his room.

Wednesday

Jackson is as cute as ever today. The final results of his pacemaker infection came back this morning--it is not MRSA. It is a staphylococcus aureus ("staph"), but it is not resistant to antibiotics. We were delighted to hear this...much more treatable than MRSA. The infection is in the pacemaker pocket in his abdomen, as well as in his blood stream. He spiked another high fever last night (almost 103). He did not have a fever today, and we're waiting to see how he does tonight. In the morning they will recheck his white blood cell count. Jackson's surgeon said if he continues to spike fevers and his white blood cell count is up then they will consider the pacemaker infected and go ahead with the plan to replace it. We are praying this might not be necessary. He was obviously uncomfortable this morning--squirmy and having trouble relaxing, even though he loved being held. They gave him some extra medicines for this and they worked wonderfully. We are praying this discomfort would resolve. It is most likely due to the new location of his pacemaker--hopefully his little body can quickly adjust to the change. One very encouraging detail is Jackson is only on one liter of oxygen now and his oxygen saturations are perfect! It is so wonderful to see him breathing comfortably and without extra effort.