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??