Day 37...and counting. :)

Sorry it's been a while, folks.....finally getting to post a quick update.

First of all....we got moved...! This is a good thing, and happened rather quickly. We moved to another area of the hospital with kids who are more stable and actually have our own room! It is still considered the ICN I believe, but is for the more stable ICN patients who only have a few issues. This is an incredible blessing because there is a place where we can take naps and stay overnight if we choose to, as well as some chairs and a bathroom! Woohoo! Both Joe and I stayed overnight here last night so that we could do Jackson's cares, feeds, temp checks, etc. and work on establishing some sort of continuity for him. The first day (Friday) when I was here was rough as it was quite different for Jackson. It was very quiet, first of all, compared to the openness of the NICU and he had difficulty. But we are pleased to say that he did better last night. They are having us stretch his overnight feedings to 4 hours if he is sleeping, and Joe and I sort of rotated taking naps when possible throughout the night on the cushions by the window (we can sort of both fit there but it's difficult, so we kind of alternate). All in all, we are so thankful for this room, because it saves us so much travel time and allows us to sit, sleep, eat in the room, and use the restroom without having to leave the floor or hospital for long periods of time.

Below is a pic of the room. I'm in the background helping the nurse with her hourly assessment, diaper change, temp check, etc. Jackson doesn't mind those so much, but he absolutely HATES
his blood pressure being taken, so that's always fun. :)

So Joe had to snap a picture of our bathroom- we are nerds. It's just so nice not to have to wait in line after 6 weeks of it!! =) Here is Jackson getting weighed...he also hates this process, but actually did quite well last night!
And last but not least, bathtime! Jackson is growing to tolerate this better, and actually even kicks his legs a bit. He is so cute!!
Looking at dad.....notice his little baby acne that showed up a couple days ago- it is already getting better. Kinda funny!
All wrapped up in my ducky bathrobe! We brought this one from home because it was a little softer than the hospital towels- Jackson was a cute little quacker. Thanks Aunt Tara!! =)

Mama's little ducky...
Daddy's little buddy....

Sooo...long and short of it...I have to run but here's the low-down.

Prayer Requests:

~ Jackson's oral feedings- that he would continue to increase. We got him to take his first 100 ml orally today, which was a HUGE praise and took a lot of effort on the part of Joe and I to keep him awake but he finally made it through. As he builds his endurance and gets more coordinated with the suck, breathe, swallow mechanism, this will become easier hopefully! They want him to be attaining close to his full feedings on a fairly regular basis for several days before we talk about discharge. Although it's very sporadic (100 one time, 30 the next), he is gradually improving. If he cannot handle it before we leave, we will maybe be looking at going over training for tube feedings. But hopefully that won't be necessary!

~ Other NICU parents who have lost their children this week- so heartbreaking and our hearts go out to them. Please be in prayer for them. We've gotten to know several families during our stay here who mean a lot to us, and are hurting for them in these difficult times.

~ Healing for Jackson's vocal cords- that he would continue to improve and his followup visits would be positive and show improvement, possibly allowing us to go to thinner consistencies of liquid for feedings.

~ Insurance- Although we have jokingly referred to Jackson as our "million-dollar baby" we didn't realize how quickly the costs would add up! :) We are blessed to have good insurance but please pray there are not issues with this. We know there is a possibility some things may not be covered and are hoping that we won't hit our lifetime insurance maximum before all is said and done, so continued prayer for that would be wonderful.

~ Our marriage and strength and endurance as we walk through this together- that we would continue to grow closer to each other and the Lord through this and praise Him for all that He has done.

~ My follow-up OB appointment in a couple weeks. I've been feeling a bit funky, but I am hoping it is just exhaustion and not recurrant infections. Pray that I can stay healthy to be with Jackson and take a load off of Joe. Pray for strength for Joe as he works and tries to balance all of this.

~ Continued good results for Jackson's motor development follow-up- babies on ECMO can exhibit later signs of hearing loss, motor skill development loss, etc... These are things the doctors will be watching for.

~ Continued health and immunity for Jackson when he gets to go home and wisdom for us in dealing with his specific needs during this first year. We had been planning on me staying home with Jackson, but with all of this, that will definitely be the route we are taking. Pray that he continues to stay healthy and amazes everyone!

Praises:

~ Jackson's oral feedings going well!

~ Jackson's alertness and how much more he is interacting with us.

~ That we have insurance!! Praise the Lord!! Phew. :)

~ Encouragement and strength from the Lord as of lately- you all have been such a blessing and encouragement, thank you!!

~ Continued health thus far for both of us!

~ Jackson doing well last night as far as sleep, etc. He is starting to adjust and get his nights and days straight, which is difficult for NICU babies. And he can actually sleep without loud noises, which is a great improvement- his first night over here with it being quieter was very difficult for him.

~ Having a room in which we can sleep, eat, etc. In addition to that, we don't have to sign out in order to have people visit him, which is nice.

~ And of course, thankfulness for Jackson's miraculous recovery- we are so thankful knowing all of the complications of ECMO and what the Lord has brought him through. We don't take this miracle lightly.

Thanks so much! We will keep you posted.

Love to all!
Joe, Miss, and Jackson :)