A long day...

Hey all,

Sorry for the delay in posting- has literally been so busy the past few days- Jackson's had a lot going on with procedures, tests, etc.

Before I give an update, here are some pics as I know everyone loves to see those first... :)

Below is Jackson zonked out. :)

Reading with Daddy... :)
Chillin' with mom....I like to look out the window!!
Daddy thinks I look like Elvis in this outfit!
My daddy's Elvis impression...he's funny!

So now the update:

Yesterday Jackson had his swallow test. It didn't really go as well as we had hoped but it could have been worse. Basically the test is a radiology procedure where they view the swallowing activity through a continuous x-ray as Jackson is fed different consistencies of barium through a bottle by occupational and speech therapists. Below is Jackson strapped in to the chair where he will be fed the various botles. The X-ray machine is to the right. We're excited to report that he is trying to feed and that he wants to feed orally and that he was actually taking the bottle, which is good. However, due to Jackson's lengthy illness and being intubated for so long (and potential damage and swelling in the throat), he was not able to direct all of the milk down the correct pipe quickly enough at the lower consistencies of thickness. This means that at times he was aspirating (allowing some liquid past his vocal cords, potentially going to his lungs). This had been their concern with attempting oral feedings prior to the test. This is the screen we watched as it tracked the progress of Jackson attempting to swallow.

Therefore, they have decided that the best course of action to follow is to proceed with attempting oral feedings, but using an extremely thick, chilled syrup gel added to breastmilk in order for Jackson to be able to process this appropriately. This consistency was the thickest one that they attempted in the exam. We were really hoping that he could tolerate the thin consistencies for better overall future feeding, but we are thankful he was at least trying. Also, he needs a lot of assistance while feeding with support and different techniques to encourage him to swallow and breathe appropriately, which occupational therapy is working on with us.

We would really covet your prayers over the next few weeks. While we are really thankful at what the Lord has all done and continues to do, and continue to praise Him, we are also getting a little discouraged at times. We initially thought this may be the week we would be heading home and now it appears it may be quite a bit longer from the sounds of it. Please pray for endurance and strength for both of us, and for Joe to balance work and being at the hospital for different tests and treatment discussions as well. And pray for perserverence as from the sound of it, this is something that we will be dealing with for a long time. They cannot repeat the barium exam at least probably for another 6 months, and depending on how he is progressing, this could be something we could potentially deal with from 6 months to a year, but that all depends on how Jackson responds and if his vocal cords improve, etc. Please pray that he progresses quickly and that is not the case. Either way, we will just realign priorities as Jackson is top on our list right now, and we will do whatever it takes to provide what he needs.

As of now, depending on how Jackson does this week as they begin to attempt feedings, they will monitor his nutritional intake, and possibly gradually increase the number of attempted feedings and see how he does. Down the road we may move to an actual hospital room, which would be a blessing as we would be able to stay overnight with him (at least one of us) and take occasional naps, and we would also have a private room, a phone, etc- all of which would be a huge blessing. It is difficult living at the NICU at times without access to things like a phone on a regular basis (the phone for parents is in a resource room shared with everyone and use is limited, so any private phone calls are difficult). Also, we are only allowed to have two people at Jackson's side at a time, which gets difficult when we have people who want to visit him. It would be so nice if we were in a room where we wouldn't have to deal with all of that, as thankful as we are for his wonderful care in the NICU. The nurses have been truly wonderful and so sweet to Jackson.

If Jackson can continue to tolerate these thickened feedings, we may be able to take him home (possibly with a feeding tube if he is not up to full feedings). We also will have home care coming to help us with things and providing assistance and the necessary materials for all his continued needs. We will also have physical and occupational therapy in our home probably once a week or so in addition to a lot of follow-up visits continually at Children's Mercy to monitor Jackson's progress. When we leave, Jackson will most likely continue to feed around every three hours, and we will be adding the thickener to the milk and serving it chilled and providing his care from home hopefully.

Thank you for your continued prayers- we really and truly need them. While we are so thankful for the Lord's work, it is so easy to get discouraged and begin to worry about the future. We trust in our God that He is big enough to handle all of this and give us the strength that we need. We also want to be real and honest with you, our body of support, as we lean on you all through this time. We definitely don't have it all together all of the time and struggle with being discouraged at times as well. It has been a long haul and we are starting to get worn out and need your continued prayers. Thank you for being there for us and continuing to encourage us. We love you all so much.

Joe, Miss, and Jackson