Feb 08

Sorry Dad.

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Today was a fun start as Greyson was chillin in his bouncy chair when we arrived.  He is really enjoying it now that he has gotten used to it.  I keep telling him that it is his and it will come home with him when he comes home, and also that we have a swing for him here so he won’t have to miss the one he likes at the hospital.  Anyway I picked him up as he was wide awake and held him for awhile.  Then we put him in his crib for a second for some reason.  When Stacy picked him up he coughed like he might be refluxing and she asked him if he was going to throw up.  “No” I said, “he’s fine”.  So she handed him to me and I was holding him and talking to him when all of a sudden….yep.  Projectile vomit!  I was pretty impressed as he shot it straight out about 4 feet (all across my chest).  Poor guy then kept smacking his mouth like he had a terrible taste in it.  I’m sure he did as it smelled bad.  After getting him some sugar water to suck on so he could get the bad taste out of his mouth I had to run to the store and buy a new shirt.  I was smart enough to buy two so now I have a backup to keep in the car for future emergencies.

We saw evidence again that Greyson’s lungs are getting a little stronger.  When the RT put him back on the cpap he started screaming and thrashing around like we were killing him.  It made the RT feel really bad.  Stacy and I finally got him settled down and he went back to sleep (he’d just fallen asleep prior to having to go back on cpap).  Then he was picking his head up and turning on his side like he wanted to roll over so I flipped him onto his back.  Not a wise move let me tell you!  Once again he was screaming like the world was coming to an end.  A little while later when he had settled back down we realized that he did all that screaming and thrashing around without a major de-sat.  Pretty impressive. 

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Feb 07

Good Grip!

*To play video make sure it is selected, right click and select play.

Today Greyson got two consults.  The GI doc came and evaluated him.  Basically he ordered a study called a ph study (or something like that) where they will put a tube down Greyson’s throat that stops just above his stomach.  This tube has a probe on it that will record all the reflux that Greyson has over a 24 hour period.  It will tell how much he refluxes, how acidic the reflux is, how long it lasts and so on.  After the study they will be able to make a plan for how to deal with it.  This study will be done early next week.

Greyson also got his second consult with the speach therapist.  He was awake this time which was good so she could better see how he was doing.  She was pleased with where he was at and encouraged us to continue with some “excercises” that will help prepare him for eating some day in the near future (we hope!). 

His nurse today told us that she put Greyson in his bouncy chair today and he seemed a little uncertain.  So she taped his mobile to a chair and put it over him.  This with his pacifier made for a magical environment that he loved.  Apparently he was quite happy for a long time.

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Feb 06

Got my own bouncy chair, hay-eey

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Today we took in Greyson’s own bouncy chair for him to use.  One of the nurses said he might like the vibrations that it has as apparently kids with chronic lung disease often really like shaking.  He seemed to like it although he did have that “OK now what is THIS!” look on his face for almost the whole time he was in it. 

Today we got to talk to a couple that we met in the NICU.  Their baby has progressed to the point where they have moved upstairs so it was nice to have the chance to see them and talk about how things are going.  It is sad that you meet people while you are in the same room, and then they move and you don’t get to see them or how they are doing.  Unfortunately it is also a reminder that Greyson doesn’t move much!  To date he doesn’t hold the record for the longest NICU stay (although we are certainly on the long timer list) but might hold the record for the fewest moves.  In 19 weeks he has only been in three different spots, and one of those he only stayed for a day.  It leaves you with the feeling that everyone else is moving and you are not.

We met with the Dr. today and talked about Greyson’s progress and prognosis.  Basically the answers were what we were expecting, it is just going to take him a lot of time.  The one new thing was that they ordered a consult with a gastrointestinal specialist.  It appears Greyson is having more reflux and they want to have him evaluated to see if there is a need to treat him more aggresively.  Reflux can have an impact on respiratory function, and even on the lungs ability to heal.  Even if it doesn’t help with Greyson’s breathing, it would be nice to get it under control as it is very clear when he refluxes as it causes him a great deal of pain.  It is horrible to watch as there is nothing you can do and he looks at you with eyes that say, “why aren’t you making this extreme pain go away?”.  He’s a brave and tough guy to endure all that he has to on a daily basis.  We continue to pray that God will place his healing hand on him, but also that God will be with him to comfort him until he gets better (well of course we pray Greyson will always know God’s presence but you get what I’m saying). 

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Feb 05

I wonder if my ballot for the presidential primary will get in on time.

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Being the deep thinker that he is, Greyson often ponders about the presidential election.  Obviously health care is something he is very interested in with each of those running.  Greyson continues to fill us with joy with every visit, even when he sleeps almost the whole time.  He continues to grow, gain, and do well in every area with the exception of his lungs.  Being a micro preemie born at just under 24 weeks is hard work, and he continues to just hang out with high gas numbers.  The good news is they are not outrageously bad numbers, the bad news is they are not good numbers and continue to bounce between OK and not very good.  Stacy and I are hoping to get a chance to talk to the Dr. tomorrow and get up to speed on what our plan is now.  We have been just holding steady and waiting, but want to have a discussion with the Dr. so we know we are up to speed on what the plan is and how they think he is doing.

I don’t think I’ve mentioned how much Greyson likes to pull out his feeding tube.  He’s almost to the point where he does it once a day, sometimes more than once just on one nurses shift.  Today we changed the shapes on Greyson’s mobile, man does he love that thing!  He stares at it like it is the most facinating thing in the world.  Today he even seemed like he was reaching up to try to touch it. 

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Feb 04

Keep lookin up

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Well we only took one picture from today, and it wasn’t great so I’m using another one from the big photo shoot the other day.  As you can see Stacy got some good ones of him, made even better by the fact that he didn’t have any of his tubes or wires on at the time.  Of course he still needs them, he just got a quick break for the photo shoot.

To answer some peoples questions about how my sermon went, well I’ll tell you after this Sunday.  Tammy got the weeks a bit off so I’m preaching this coming Sunday, not last week.  Also for those who weren’t clear, both Stacy and I got pulled over the other day (Stacy in the morning, and me at night as seen in the picture). 

Greyson had a good day today, he was pretty sleepy for the time we were there.  I had to get back for a study I lead on Mondays so we left before he was put back on his cpap.  His gas numbers are slightly better but still a cause for some concern.  I’m not reporting on numbers for a couple days since they are bouncing around so much.  We’ve become way to focused on them and are trying to step back a bit and see the bigger picture.  What is the bigger picture?  Well click on the picture for today and you can see it pretty clearly!  Greyson is still only on the nasal canula for 4 hours and then on the cpap for 8 hours.  He looked good today while he was on it and his oxygen requirements were good the whole time we were there.  He is quite the delight to his parents, and continues to draw attention from the nurses as well.  Several come in and check on him since he is in room E and not in a high traffic location.  It is fun to see all the “visitors” who stop by and check on how he is doing and hear how they talk to him.  He loves them all and when he is awake he will look at them intently until they leave.  One of the nurses he has had a lot (we keep forgetting to ask if it is OK to use her name, and don’t want to use it without her permission) had him again today and he was really gazing at her with love in his eyes. We can already see how much love he has to give to others, and it is obvious he appreciates those who care for him.  I think he even appreciates those who have to put his cpap back on him, although he definately lets them know he doesn’t care for it!

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Feb 03

Ha ha I left no evidence!

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OK Greyson didn’t get into anything, but we did put ink on his hands and feet and take prints.  We wanted to have a copy of them at the “newborn” stage and thought we better do it before he grows anymore!  It was hilarious to watch Stacy and Ashlie (Greyson’s nurse) try to get him to open his hands and get them on the paper.  They did it though and Greyson was a pretty good sport about the whole thing.

He stayed awake for the longest time today.  He woke up around 3 pm and didn’t go to sleep until about 8 pm!  We had a great time playing with him and watching him look at us and everything around him.  He even held on to his little frog toy for a couple minutes.  It really made for a great visit.  His oxygen requirements were pretty good as well during the whole time, and when he went back to cpap he was at 21 percent oxygen for about a half an hour or more. 

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Feb 02

I think I may throw up.

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Yep, I’m definately going to throw up!  While holding Greyson to comfort him he apparently got a little upset as he vomited all over himself and me.  Being a child who threw up on literally everyone I came into contact with growing up I felt a bit of pride in his ability to coat the both of us.  It was quite shocking as he didn’t make any movement like he was going to throw up or anything, all of a sudden it just shot out of his mouth. 

Greyson’s numbers were a little better today and we are thankful for that.  His c02 was down to 66, although some of the other numbers weren’t quite as good as they have been.  Hopefully his c02 will stay low and the rest will balance out.  Stacy worked with Greyson today by letting him taste some milk (since it goes down a tube to his stomach he really doesn’t taste anything at this point).  He seemed to like it.  He was pretty upset at the end of our time there (is this becomming a pattern?) but the DR. allowed him to have a supository after we requested one.  When the nurse (Ashlie again) put it in Greyson finally decided to let some loose.  Sorry Ashlie!  He will get a few supositories over the next 24 hours to make sure things are moving properly and hopefully help his stomach to feel better. 

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Feb 01

I’m crawling outta here!

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Well actually Stacy made some arrangements to take some baby pictures of Greyson.  We decided we wanted to try to get some without all the cords and tubes before he was no longer a little baby.  After all, he is over 9 pounds now!  Hard to believe he was a 24 (well 23 weeks and 6 days) micro preemie who was 1 pound 9 ounces. 

Well the recap is pretty much the same.  c02 was 72.  Still about the same on his oxygen needs.  His ph was down as well as his bicarb (don’t worry I’m not going to drag you through all those numbers, but they are a part of his gas that I am learning about) so I think that is somewhat positive.  He saw the speech pathologist today, so before we left he was able to say simple things like “mom” and “dad”.  Next week they will check in on him again and work on harder words like “Mississippi” and phrases like “I was really hoping someone would buy me a wii”. 

OK just kidding.  Actually the speech pathologist evaluated how he was doing and worked with us to give us some tips to help prepare him to eat.  This is important because Greyson is over 4 months old and has had a lot of bad things to associate with his mouth.  None of them were related to getting food.  So we will be working with him to ensure he is having associating postive touch when it comes to his mouth and hopefully that will prepare him for when he has to use his mouth to feed himself.

He was quite a bit puffy today, so the edema problem is back.  The Dr. put him on a very strong diruetic for 4 doses and it seemed to be helping him pee off the excess fluid.  Hopefully this will help his numbers tonight.

**Warning–graphic story to follow**

OK so aside from getting a bath and the photo shoot (both of which I was gone for), Greyson slept most of the day today.  Well at his final care time we had changed his diaper and taken his temperature and were getting him put back in his sling (thing that holds him up on the wedge that he has to be on for his reflux).  His diaper was wet and he had a streak of poop on it.  Anyway he started getting really agitated and then Stacy and I (mainly Stacy) noticed he had pulled his feeding tube out a little bit.  So his nurse Ashlie (she’s commented on here before and said I could use her name!) came over to put it back.  She had it almost in when he pulled the whole thing out.  Then he was throwing a major fit.  Screaming and thrashing around.  I tried my best to get him to calm down but after several minutes nothing was working.  Finally we put him down and checked his diaper.  It was a major blow out!  So Ashlie got the tube back in and we started in on the diaper change.  As I’ve mentioned before Greyson is pretty stinky due to all the additives they put in his milk.  Well while I was getting the wipe wet, Stacy opened up the diaper.  The smell was so bad that Ashlie actually started to gag.  After arching like she was going to spew a couple times she hurried over to the trash can where she continued to arch back.  Her face was SO funny as it was obvious the smell was just way more than she was going to be able to handle.  She never did vomit but it wasn’t long before she told went to help another baby and told us she’d be back later to check on us.  It was bad so I don’t blame her!  After we got him all cleaned up he was very calm until we put him back in his sling.  Then the whole things started over again (without the pulling of the feeding tube).  Yep, he’d gone again.  Ashlie missed out on that one as she was still “helping” the other baby.  I think she was just standing closer to an open door where she could get some oxygen!  She’s a great sport and we were laughing about the whole thing before we left.  Largely because Stacy and I were getting out of there and she had to stay and deal with anything that happened for two more hours.  Come to think of it we were talking earlier in the night about doing something significant to “impress” Ashlie, wonder if making her sick qualifies?

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Feb 01

I’m crawling outta here!

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Well actually Stacy made some arrangements to take some baby pictures of Greyson.  We decided we wanted to try to get some without all the cords and tubes before he was no longer a little baby.  After all, he is over 9 pounds now!  Hard to believe he was a 24 (well 23 weeks and 6 days) micro preemie who was 1 pound 9 ounces. 

Well the recap is pretty much the same.  c02 was 72.  Still about the same on his oxygen needs.  His ph was down as well as his bicarb (don’t worry I’m not going to drag you through all those numbers, but they are a part of his gas that I am learning about) so I think that is somewhat positive.  He saw the speech pathologist today, so before we left he was able to say simple things like “mom” and “dad”.  Next week they will check in on him again and work on harder words like “Mississippi” and phrases like “I was really hoping someone would buy me a wii”. 

OK just kidding.  Actually the speech pathologist evaluated how he was doing and worked with us to give us some tips to help prepare him to eat.  This is important because Greyson is over 4 months old and has had a lot of bad things to associate with his mouth.  None of them were related to getting food.  So we will be working with him to ensure he is having associating postive touch when it comes to his mouth and hopefully that will prepare him for when he has to use his mouth to feed himself.

He was quite a bit puffy today, so the edema problem is back.  The Dr. put him on a very strong diruetic for 4 doses and it seemed to be helping him pee off the excess fluid.  Hopefully this will help his numbers tonight.

**Warning–graphic story to follow**

OK so aside from getting a bath and the photo shoot (both of which I was gone for), Greyson slept most of the day today.  Well at his final care time we had changed his diaper and taken his temperature and were getting him put back in his sling (thing that holds him up on the wedge that he has to be on for his reflux).  His diaper was wet and he had a streak of poop on it.  Anyway he started getting really agitated and then Stacy and I (mainly Stacy) noticed he had pulled his feeding tube out a little bit.  So his nurse Ashlie (she’s commented on here before and said I could use her name!) came over to put it back.  She had it almost in when he pulled the whole thing out.  Then he was throwing a major fit.  Screaming and thrashing around.  I tried my best to get him to calm down but after several minutes nothing was working.  Finally we put him down and checked his diaper.  It was a major blow out!  So Ashlie got the tube back in and we started in on the diaper change.  As I’ve mentioned before Greyson is pretty stinky due to all the additives they put in his milk.  Well while I was getting the wipe wet, Stacy opened up the diaper.  The smell was so bad that Ashlie actually started to gag.  After arching like she was going to spew a couple times she hurried over to the trash can where she continued to arch back.  Her face was SO funny as it was obvious the smell was just way more than she was going to be able to handle.  She never did vomit but it wasn’t long before she told went to help another baby and told us she’d be back later to check on us.  It was bad so I don’t blame her!  After we got him all cleaned up he was very calm until we put him back in his sling.  Then the whole things started over again (without the pulling of the feeding tube).  Yep, he’d gone again.  Ashlie missed out on that one as she was still “helping” the other baby.  I think she was just standing closer to an open door where she could get some oxygen!  She’s a great sport and we were laughing about the whole thing before we left.  Largely because Stacy and I were getting out of there and she had to stay and deal with anything that happened for two more hours.  Come to think of it we were talking earlier in the night about doing something significant to “impress” Ashlie, wonder if making her sick qualifies?

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Feb 01

Why not to take two cars.

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Aside from the price of gas, it’s nice to only have one of your vehicles pulled over by the police.  Of course by having two cars, if one gets done with the cops early in the morning they will be able to photograph the other person as they have their interaction later that night.  Only in the Westfall house do things like this happen!  Oh and by the way, neither Stacy nor I have been pulled over in the last 6 years, how ironic was today?

Posted in Current | 2 Comments