Home Sweet Home

We’re home!  We actually arrived home on Friday.  If you were unaware of that, and found yourself unable to enjoy the NFL games today because you were wondering if we were home, or if I was still orangutan gazing, please consider following TwoIfbyFaith on facebook.  I just hadn’t found the time to get back on here!

Friday morning rounds went well, and we were home by 4:00 pm.  Both boys are still spitting up, but they are all in all doing well.  They stopped being contagious a while ago, we are just working on getting up to full strength.  With their pace, and overall weakness, that might take weeks.  We are continuing the breathing treatments 1-2 times a day as needed, and as mentioned before, are exclusively feeding via NG tube for now.   The boys are still very sleepy.  I know part of this is due to illness, but I also continue to believe part of it is due to the med changes.  We have follow-up neuro visits scheduled, and we should begin pulling back on Sabril soon.  I’m curious to see what other next steps they have in mind.

Nonetheless, we are all so grateful to be home and together.  Saturday started with a nurse visit, then turned in to a lazy day at home.  We ventured out to church today.  We are relatively new there, so many of our seat neighbors don’t know details about the boys.  There, just like anywhere I go with them in public, they are just cute twins, and strangers can’t help but comment on how well-behaved, quiet, and…sleepy…they are.  But generally no one has any idea there is more to the story.  Today the feeding tubes provided a clue.   And led to a question, which led to a discussion.  I saw sadness and heartache for the boys through the fresh eyes of a kind gentleman.  And it really hit home.  The last few days have been a mix of emotions.  I’m thankful the boys came out of their first illness related hospitalization like fighters, yet I’m scared to death of how the winter will go.  Truth be told, I’m scared fairly often.  But I think it’s acknowledging that vulnerability that gives us the freedom to live each day to the fullest.  I’m not frozen by fear, but I’m emboldened by it.  I’m not running in fear, but I’m challenged by it.  Challenged to make the most of each day, each moment.  Challenged to fight for these boys.  Challenged to allow my heart to wander around, also vulnerable.

“Making the decision to have a child – it’s momentous. It is to decide forever to have your heart go walking outside your body”
― Elizabeth Stone

Almost time to go!

Almost time to go!

Nolan getting some "fast food" before hitting the road.

Nolan getting some “fast food” before hitting the road.

EXIT!

EXIT!

Med time at home.

Med time at home.

Movie night!

Movie night!

Nolan was too excited to sleep.

Nolan was too excited to sleep.

Landon looking so big.

Landon looking so big.

We're doing a lot of laundry...

We’re doing a lot of laundry…

Sleeping N

Sleeping N

Sleeping L

Sleeping L

 

And finally, this one should have been captioned “3 wigglers”…

Spider Man PJ Party!

 

 

 

 

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Thursday Update

Well…we are still here.  But I swear we are making progress.

 

Landon is completely off of IV fluids now, and despite spitting up more than the medical team would have hoped today, he is still staying hydrated, and producing enough wet diapers.  Provided there are no setbacks…I think he will go home tomorrow.  I’ve thought that before.  I’ve been wrong before.  We’ll see.

 

Nolan and I got in to a good rhythm today.  The feeding tube is surprisingly easy to handle.  More on that another time.

 

I learned that I can see the zoo, and that the orangutan exhibit in particular is visible from my window.   Despite a lot of effort, there have been no sightings.   In related news, my productivity is down.  In other related news, the orangutans reported frequent sightings of an 8th floor mom hovering awkwardly in front of her window.

 

All in all, the day went well.  Nolan and I finally strolled down to the Ronald McDonald Room for dinner.  You can’t leave with the food, so I made a salad and a plate and sat down, feeling relax, then noticed Nolan spit out a mouthful of blood.

(don’t panic)

(well, panic a little, because I did)

I threw my food right in the trash, mumbled something to a stranger who is probably still talking about “that weird wasteful mom” and bolted back upstairs.  Is it his lungs?  Something wrong with his tube?   I asked one of the nurses to take a look, and another one confirmed he did that a few nights ago.  It seems he isn’t quite used to one of his bottom teeth, and keeps either nipping his tongue, or bumping his upper gums.

If I were to make a list of things I don’t need right now, Nolan coughing up blood would likely be on the list.  Nonetheless, it seems we are dealing with more of a wayward tooth.  I’m trying to get him to chew on a pacifier rather than himself, but he disagrees.

My conclusion is it is time for us to go, before I become a complete mom-ochondria, or Nolan finds another reason to get attention from nurses.

 

Being here leads to a lot of reflecting, so I’d like to do another “this time last year”.  Here is a post from October 14th of last year.  Held in the Storm.

Thanks as always for caring about these boys, come rain or shine.

 

Wednesday Update

Look who I have!

Guess who?

Guess who?

 

Well that isn’t a helpful clue in this instance.  It’s Nolan!

 

Wildcat Pals!

Wildcat Pals!

 

Nolan was discharged this afternoon.  He didn’t travel far.  For his first taste of freedom in nearly a week, he wanted to travel down the hall and visit his brother.  We toyed with getting a hotel room if we needed to, but the hospital staff was very supportive of us all staying together.  They get it.  In fact, they provided a place for Nolan to sleep so we can stay in Landon’s room!

 

Home away from Home

Home away from Home

We are getting in to the new routine.  You shouldn’t be surprised by this, but there is a spreadsheet.

 

image

Nolan was (and Landon will be) discharged as 100% NG fed.  We are to continue with that until they can pass a video swallow/Barium study.  I  have taken care of his last two feeds, and it went really well.  If I were having to feed him by mouth right now, I’m not sure how much he would wake up to take.  It is incredibly comforting to know we can keep him hydrated and fed without exhausting him during his few waking moments.

Mommy's first solo tube feed!

Mommy’s first solo tube feed!

 

I’m not the only one getting back to business.  Nolan is getting back in the grind as well.   We’re back to the stretch routine during diaper changes, and he’s exercising.  Here he is doing pull ups in his sleep.  Ok, so it’s more of a grasp.  But still cute.

Nolan is getting back to business.

Nolan is getting back to business.

 

It feels good to all be in the same room.  It also feels VERY good that Landon is making progress.  He has still spit up some today, but he is also keeping some down.  They have scaled back the IV, and are going to remove it soon if he keeps improving.  He has advanced beyond pedialyte, and is now drinking some formula again.  Progress.    And with a cheerleader like Nolan by his side, I know he will pull through soon.

Hang in there Landon!

Hang in there Landon!

 

Soon.

Tuesday Update

I mentioned on facebook last night that Nolan might get to go home today, and that operation Homeward Bound is officially on.  I was half right.

Nolan is here one more day, but we ARE in the final stretch.

After working a couple of days, I am back at the hospital, and hopefully leaving in the near future with two babies.

Nolan is doing great, keeping down formula, and going home tomorrow.  I practiced putting his NG tube in.  He barely coughed and smiled at me afterward.  It was the best job at putting in an NG that I’ve ever done.

Landon is doing much better!  He is keeping down pedialyte, (12 ounces so far today and starting a slow 6 more now).  I also practiced putting his NG tube in.  He coughed, gagged, and fought the whole time.  It was the worst job at putting in an NG that I’ve ever done.

So…soon!  Soon we will all be home!  I still have a lot of questions.  When can we start trying milk with Landon?  How long do we give them to get back to eating by mouth before we have to consider a more permanent option?  What will we do if Nolan outweighs Landon?

I’ll let you know when I learn more!

 

L

L

N

N

Goals!

Goals!

 

Sunday Update

Not a lot of changes to note for the boys.  As I predicted earlier, feeding is going to be their ticket home.  Nolan is now back on NG (a tube through their nose for feeds) and getting most of his feeds that way until he can more consistently keep them down.  Landon has an NG now as well, and we are trying to work our way  back up to where his stomach can handle ANYTHING and stop relying on IV for hydration.  We finally got his meds to stay down fairly consistently.  We’re working on small amounts of pedialyte.  So far today he’s kept down…2 ounces.  So needless to say we have a long way to go.  Just in case we go home with NG tubes, J received his training today, and got to practice on each boy.  I will get my training another time.  But we can’t even go home on an NG until Landon keeps more down.

Depending on how I word things, it could sound like they are still just fighting a virus, and we’ll be out of here any day as soon as they eat well.  OR…it could sound like we aren’t leaving here soon, and without G-tube surgery scheduled.  We’re just all that unsure about where things are headed.  I’ve been worried about loss of function in Landon since before we even made it in to the ER.  But loss of function doesn’t necessarily explain his intolerance of even an NG tube feed.  So there’s still a chance this virus is wreaking havoc and his system just needs more time.  Only time will tell.

We like the medical team.  They are working hard, are thoughtful, and they value and include me.  In fact, I am going to start splitting my time between here and work for now, trusting they understand our goals and concerns.  That will allow me to be more free later on if we need some time to reacclimate at home, or if we end up with a G-tube surgery.

We’ve enjoyed some family time the last two days.  I was able to run home, visit with J, K, and J’s grandparents, and sleep in my own bed.  Today K enjoyed being mistaken for a doctor, delivering balloons, and visiting the local children’s museum.  All things considered, it was a good day for all.

 

Thumbs Up Doc!

Thumbs Up Doc!

His favorite exhibit...in the lobby.

His favorite exhibit…in the lobby.

One happy dude!

One happy dude!

Dinosaurs!

Dinosaurs!

Crazy maze!

Crazy maze!

Awkward Balloon Delivery Crew

Awkward Balloon Delivery Crew

Saturday Update

I don’t have a lot of new news yet today, but one bit is interesting enough to go ahead and share.  Nolan isn’t going home today either.  He ended up spitting up most of his late feeds yesterday, and has already been sluggish with his early feeds today, spitting up a lot of mucus with one of them.  I’m not too alarmed by that.  We’ve seen that with pretty much any illness that causes a lot of mucus.  He needs a little more time, but he’ll get there.  He also pulled/sneezed out his NG tube – so he is choosing to fly without a net!

Landon is off of oxygen AGAIN, and has been increasingly alert.  He is still only taking his meds by mouth, and is otherwise staying hydrated via IV.  He managed to keep his meds down last night and this morning.  So we are going to try a small amount of pedialyte by mouth within the next couple of hours.  Hopefully he can keep a few ounces down today, and increase how much he is taking by mouth tomorrow.

I am running home later this afternoon.  I want to visit the rest of the family.  I also need to grab more Sabril, since I had packed for one boy for a few nights, and now have two boys for several more nights.  We use the hospital medicine for everything else, but Sabril is a hassle to order and keep on hand, so they always use our home med for that one.

In terms of how things are looking overall, the boys are making progress, it is just very slow.  But that is very normal.  They have their own pace and we’ve grown used to that.

Nolan sends a kiss

Nolan sends a kiss

Landon looking bright eyed and precious

Landon looking bright eyed and precious

Friday update

Hello again!  We had some guests today to offer up extra hands and more loving arms.  Papaw and Nana drove up for the day. They cuddled the boys, and we enjoyed a late lunch to get some fresh air.  J also drove over for the day to check in on us, and bring me a few supplies since we are here longer than I had anticipated.

 

THE BOYS!

Nolan: He is off of oxygen.  I hear that his lungs sound better, then someone else talks about a new crackle, so that is essentially a changing status.  He continues to get breathing treatments every 4 hours.  In general I think he’s doing better, moving phlegm, and getting his appetite back.  He is spitting up less.  His volume is not up to 100%, but he’s doing better nonetheless.   He still has an NG tube in, but we haven’t had to use it today.  I still think he might get to go home tomorrow, as long as his lungs aren’t getting worse.

Landon: He was off of oxygen, and now he’s back on.  His heart rate is more regular, and his temperature is holding a little better, but late this afternoon he kept letting his oxygen level drop.  Nothing drastic, but enough he earned a nasal cannula again.  Like Nolan, the sound of Landon’s lungs changes frequently, and he gets breathing treatments every 4 hours.   Early this morning, Landon spit up a mucus-y brown substance. We had planned to feed by mouth, but that made them tap the breaks.  He did it a few more times today.  One of the times, I was able to catch some so we could run a sample.  They do not suspect it contains blood, but want to check anyway.  I think it is a combination of mucus and stomach bile.  Anyway – Landon hasn’t taken anything by mouth today except his meds.  Rather than NG, he is still getting fluids via IV.  Landon is clearly feeling better…his eyes are open more, his color is back, he is awake more.  But we have to make a lot of progress on feeds before he will get to go home.  So, it’s up to Landon now.  And today, he was content with a slow pace.

 

It will be interesting what becomes “good enough” to get sent home.  We have handled a lot at home.  Much of the boys life we’ve been acting as nurses just as much as their parents.  So if we’re down to breathing treatments, and watching fluids to ensure hydration until they get back to full health, we can take over.  And quite honestly, heart rate dips, oxygen level dips, and temperature regulation issues are daily issues for the boys more so than a regular patient.  So their baseline for “healthy” is far different than the norm.  I think the key is getting Landon drinking more volume, and at least part of it being milk as opposed to just pedialyte.  So…we’re praying tomorrow is the day Landon gets an appetite, and that his belly can handle the introduction of feeds again.

 

Snuggling L

Snuggling L

L had his eyes open!

L had his eyes open!

N Snoozing

N Snoozing

L peaking out at me again this evening

L peaking out at me again this evening

Daddy holding N

Daddy holding N