Oct 25

October 25

October 25 009

Greyson continues to do pretty well.  The Dr’s and nurses tell us not to worry to much about his ventilator situation but it continues to be pretty nerve wracking to us.  His weight stayed the same today, 790 grams which is 1 pound 11 ounces.  Well that’s all I have for now, it’s very late and I just got home from work, we have to leave very early in the morning to be at the hospital in time for Greyson’s 8AM care time since I have to work tomorrow night.

Love you all,

Bob

PS–This is the first present Greyson received. I bought it for him the day I learned about him as I wanted to be the first to get him something.  I’ll send a follow up pic soon with the stuffed animal by Stacy or I so you can put the toy, and Greyson, in perspective.

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Oct 24

October 24

October 24 004

Greyson had a decent day today.  We found out he had to be bagged again last night and continues to have bouts of desating (where his oxygen saturation falls low).  This is a bit troubling but after talking to the Dr. tonight we felt encouraged.  The Dr. talked about how most of the fluctuations are probalby being caused by Greyson fighting against the vent.  They feel pretty strongly that this is the case.  While it is not good, it does show he is active and that his brain is functioning at a good level.  He also talked about his prognosis at this point and said some pretty positive things.  He was the Dr. that was in the delivery room with Greyson and told us he had a 5 percent chance of making it.  He’s not mean but is very guarded about what he says, especially about how well things will go in the future.  This made his comments tonight carry more weight.

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Oct 23

Good News, Good News

october-23-007.jpgGreyson’s second brain ultrasound came back normal!  Praise the Lord!  This means that he has no bleeding in his brain and at this point the odds are very unlikely that he will develop one.  This is great news as that was one of the major problems someone as young as Greyson faces.

He had some trouble last night with his breathing (read ventilator since he really isn’t breathing on this vent) last night.  As we know with this vent it only works if it is shaking him.  Well if Greyson decides to move around a lot or bear down and fight the shake the vent can’t work.  This seems to be happening on a semi consistent basis.  His stats were going kind of crazy this afternoon so they ran tests to see how his lungs looked and if he might have an infection.  Everything came back OK so it appears it is just about finding the right position for him and having him not move around a lot.  Hopefully that all made sense.  The long and the short of it is there is some question as to whether this vent is going to continue working for him or whether he needs to be put back on the other one. 

OK so on to his story.  When Stacy first came in at noon to see Greyson he was crying (always sad but happens).  What was signficant is he was actually crying tears.  This is the first time we have seen tears flow from his eyes.  He was upset because they had changed the tape on his face that holds the vent tube.  After it was over he settled down and was extremely wide eyed and active.  It was great to watch him as he looked all around and moved around quite a bit. 

He continues to handle the feeding OK.  He didn’t poop yet today but with two yesterday that is not to much of a concern.  Hopefully he will go sometime tonight.  His weight increased again slightly to 760 grams, or 1 pound 10 oz. 

Not much else is new.  I need to work on my school work so that will be it for tonight.  Continue to pray for his lungs as that seems to be the biggest issue at this point.

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Oct 22

Can you hear me? I’m getting bigger!

october-22-018.jpgoctober-22-008.jpgWell Greyson was doing pretty good today.  We sure missed seeing him yesterday!  Today he had his echo scan (for his heart) and he still has the PDA but it remains small at this point.  We would love to hear that it is completly closed but at least it doesn’t seem to be causing him problems.

He also had another brain ultrasound but we will not get the results back until tomorrow.  If he doesn’t have any bleeding on this one chances are pretty good that he isn’t going to suffer from those.  We are praying hard that this will come back normal.

Today we were there for the noon and 4PM care times.  When I went to change his diaper it was full, really full!  This is good because the last two times he has gone poop they had to give him a suppository before he went.  Today he went on his own without any help!  Then when I just called to get the update from the 8PM care the nurse told me he has gone again!  This is very good.  It means we get to talk about poop, but also that everything is working in his stomach right now. 

They have increased his feeds to 2ml an hour, tomorrow it will go to 2.5ml an hour.  His sugar concentration is at 12.5 which is where we have been wanting to get to and he is getting fat infused at a higher rate than ever. 

Now for the dramatic announcement that we have been waiting so long for……………….He has finally passed his birthweight!  He weighed in tonight at a whopping 750 grams which is 1 pound 10 ounces.  Now I do have to say this is a larger jump from yesterday than we would expect, so tomorrow it may vary a little but I am feeling confident that with his trend he really is now above his birthweight and will continue to pack on the pounds…..um I guess I mean ounces at this point! 

His blood gasses continue to be just OK.  We are continuing to pray that they will show marked improvment so he can be weened off this vent and put back on the other one.  This will allow us to return to the kangaroo care and will be a step in the long term process of eventually getting off the vent altogether.  It was a good day and he looked really good today.  Lord willing tomorrow will be good as well!

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Oct 22

Can you hear me? I’m getting bigger!

october-22-018.jpgoctober-22-008.jpgWell Greyson was doing pretty good today.  We sure missed seeing him yesterday!  Today he had his echo scan (for his heart) and he still has the PDA but it remains small at this point.  We would love to hear that it is completly closed but at least it doesn’t seem to be causing him problems.

He also had another brain ultrasound but we will not get the results back until tomorrow.  If he doesn’t have any bleeding on this one chances are pretty good that he isn’t going to suffer from those.  We are praying hard that this will come back normal.

Today we were there for the noon and 4PM care times.  When I went to change his diaper it was full, really full!  This is good because the last two times he has gone poop they had to give him a suppository before he went.  Today he went on his own without any help!  Then when I just called to get the update from the 8PM care the nurse told me he has gone again!  This is very good.  It means we get to talk about poop, but also that everything is working in his stomach right now. 

They have increased his feeds to 2ml an hour, tomorrow it will go to 2.5ml an hour.  His sugar concentration is at 12.5 which is where we have been wanting to get to and he is getting fat infused at a higher rate than ever. 

Now for the dramatic announcement that we have been waiting so long for……………….He has finally passed his birthweight!  He weighed in tonight at a whopping 750 grams which is 1 pound 10 ounces.  Now I do have to say this is a larger jump from yesterday than we would expect, so tomorrow it may vary a little but I am feeling confident that with his trend he really is now above his birthweight and will continue to pack on the pounds…..um I guess I mean ounces at this point! 

His blood gasses continue to be just OK.  We are continuing to pray that they will show marked improvment so he can be weened off this vent and put back on the other one.  This will allow us to return to the kangaroo care and will be a step in the long term process of eventually getting off the vent altogether.  It was a good day and he looked really good today.  Lord willing tomorrow will be good as well!

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Oct 20

Untitled

october-20-002.jpgWell It’s 9:22PM and we just got home from the hospital.  We went for the noon and 4PM care times but met up with the youth pastor and his wife and went to dinner with them so we are getting home late.  I need to keep this short as I am preaching tomorrow and need to review my material.  Should be an interesting sermon as with the exception of Greyson I don’t think I’ve carried a coherent thought for more than about 10 minutes.  We’ll see how it goes.

Greyson had a good day today, really nothing much to talk about.  He didn’t gain any weight, but didn’t lose any either.  He remains at 690 grams, 10 grams shy of his birthweight.  While we were hoping he would get above it today he had two blood transfusions between last night and this morning and they give him a dieretic that causes him to pee a lot when he gets the transfussions, so usually his weight isn’t that great on those days. 

So far so good with the feedings, they increased him to 1ml an hour of breastmilk.  Tomorrow it will go to 1.5ml an hour if he continues to do well.  His blood gasses were OK today, they changed a couple settings on his vent and they seemed to be doing better when we called a few minutes ago.  He has been sleeping most of the afternoon peacefullly which is a great thing as he needs to chill out and sleep so he can grow. 

Monday will be a big day as he is having his second brain ultrasound as well as another echo to check his PDA (small artery that should be closed with his heart that has been open for those who may just be joining this discussion!).  Please keep him in your prayers as he really needs the PDA to close and also that his brain would be OK with no bleeding. 

Well that’s all I have for tonight.  We will not get to see him tomorrow as I am actually working again and with church and a meeting I have to lead I can’t fit in the drive to see him.  Monday is my day off though so we will spend extra time with him then to make up for it!

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Oct 19

October 19

greyson-on-tummy-2.jpgSo last night I didn’t send an update because when we got home the power was out.  There was a major wind storm yesterday that wrecked havoc on much of the pudget sound area.  Anyway Stacy and I camped out in our sleeping bags in front of the fireplace and stayed nice and toasty all night.

Basically the most important thing from yesterday was that right before we left Greyson had managed to get his thumb into his mouth and was sucking on it pretty good.  It was really fun to watch him.

Today he continues to do OK although his blood gas numbers are higher than we would like them to be.  They will check them again at midnight and make adjustments as they need to.  His blood sugars were high this afternoon but when they checked them again tonight they were in a much better range.  The big news for today is that they started him on actual feeds!  He is on a continuous feed where he gets 0.5ml of breastmilk every hour.  As long as he continues to do well they will increase that a little bit each day until they get to 4.5ml a day.  We are praying he takes it well and thrives on his mom’s milk.

He was extremly fussy when we last changed him, more than we have really ever seen him.  He was crying a lot (no sound, which breaks your heart but you can definately tell he’s crying) and kicking and even moving his arms.  This coupled with a face that just yells, “I”M NOT HAPPY WITH THIS RIGHT NOW!!!”  We thought it was because he had been moved off his stomach and had somewhat settled down by the time we were done and decided to head for home.  Stacy called when we were just about home to see if he had settled in and the nurse told her that she had went in and tried to bundle him up to make him feel better as he was still being a little fussy when she realized he had made a pretty good poop.  This is great news as he has only had “smears” since his significant poops last weekend.  It was also good to hear that after she changed him again and tucked him in he seemed to be settled in a lot better.

His weight tonight was 690 grams, which is only 10 grams less than his birthweight!  With the breastmilk feedings, his IV nutrition, and the fat he is getting I am very hopeful that tomorrow he will be above 700 grams and will never dip below it again.  So really things were good, we are just praying his blood gas numbers improve with his next check.

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Oct 17

October 17

october-17-015.jpgOK so I wrote out the whole story, read at your own risk.  In the midst of it all Greyson still took some pretty cute pics.

So today was the big day for me to hold Greyson.  Unfortunately it was not the greatest day.  We got to the hospital and learned Greyson did not have a great night.  His blood gas report was not good but they said I could go ahead with the Kangaroo care.  Well I held him for about half an hour when his oxygenation level fell (for the second time during me holding him).  I asked the nurse if we should put him back in his isolete (we had talked about needing to do that if they dropped after the first time).  She thought we should so we put him back in his isolete.  Well that’s when his oxygenation level really fell.  We’ve seen this before so at first it wasn’t that dramatic.  She used the vent and gave him some extra oxygen and some manual breaths (you can do this by pushing a button on the vent).  Well he didn’t respond and his saturation level continued to fall.  This was soon followed by his heart rate.  Greyson’s heartrate shouldn’t be below 120 beats per minute.  As I watched the stats I saw his heart rate drop down to 43 before the monitor no longer recorded anything.  Now Stacy and I were watching as they took out his vent tube and breathed for him through a bag.  I’m not really sure why but none of the monitors that we usually look at read anything.  By this time there were about 5 nurses close by and the neonatalogist was in.  Soon some readings came back up on the monitors and they were in the normal range.  The dr. said they would have to intubate him again (place a new tube down for the vent).  We went and waited in the waiting room until it was done.  The Dr. said it was obviously not a good situation, but does happen at times if the vent tube moves or gets blocked for some reason.  All in all he felt it was not related to me holding him, or really anything but unfortunately is just one of those things that can happen with someone as small and fragile as Greyson is.

So he recovered pretty well from that except his blood pressure was running really low and when they took his blood sugar it was really high.  They decided to give him his blood pressure shot early but ended up waiting to see what happened as his blood pressure was going up and down a lot.

So after lunch when we got back for his care Stacy changed his diaper and the nurse had done all the other stuff she does.  One of those was to draw another blood gas.  This one came back even higher than the one before it which meant it had gone from “bad we can live with” to “we need to do something”.  This led to them changing him to a new vent known as the “jet vent” because it makes alot of noise.  Basically it is a high frequency ventilator that keeps the lungs inflated and vibrates the air really fast which forces the oxygen in and the co2 out.

OK so Stacy and I finally went home to take her to the Dr. to get her infection looked at (still having some trouble with that, although getting better).  when I called to hear how things were going I got a pretty good report.  Greyson was on room air again (21 percent oxygen which is good) and his stats were all really good.  His blood pressure was holding steady at a good level.  His blood sugar was down to 126 which is good for him.  His blood gass showed improvement so hopefully things will be OK now.  There is no way to know at this point how long he will be on this vent, they said it could be a couple days or a couple weeks.  Basically he will have to get weened off this one and put back on the other one and then weened off of that before he will be vent free. 

So while it was very tramatic to Stacy and I, Greyson seemed to handle the whole day fairly well.  He had some moments but recovered far quicker than we did.  They tell us all the time that there will be good days and bad days, we are really praying for a lot more good days.

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Oct 16

October 16

october-16-006.jpgoctober-16-003.jpgGreyson officially turns 3 weeks old in a little less than an hour.  He had a good day today.  He has grown about a centimeter in his head, is a little longer, and weighs 650 grams (1 pound 7 ounces).  50 more ounces and we are back to his birth weight which will make Stacy and I pretty happy.  They increased his sugar in his IV solution again so he is now at 11.  The nurse yesterday said they would like to get him to 12.5 so we are praying his blood sugars continue to do well.  They were good when we were there and he has been over a week without insulin so that is positive.  Lord willing he will do well tonight and I will get to hold him for his Kangaroo care tomorrow.  He looked good tonight.

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