Jan 12

Shhhh….I’m hiding.

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What do I say about today?  This picture is how I found Greyson when I came in.  Looking all cute and sitting up in bed (again with help) eyes WIDE open looking at me.  Stacy took his temperature and it was great so we began to work on his diaper and found one VERY large diaper.  We have heard many diaper stories that you would call, “went up the backside” (you parents will understand that I’m sure!) well what we found was something no one warned us about, it can be “up the frontside” as well as the back!  Man what a mess. 

So we got him all changed and he got his breathing treatment, we tucked him in and Stacy left to go pump.  I was asking the nurse about his chest X-ray when I heard Greysons monitor alarm.  Nothing new here happens all the time.  Well when I looked up at the monitor I immediatly realized it was not his oxygen saturation.  Weird cause that is what is always alarming.  It only took a half a second to realize that it was his heart rate that was alarming.  Greyson’s heartrate shouldn’t be below 100 yet it was alarming because it was only 87.  I stepped over to his crib (about two steps at most) and began to massage his chest while continuing to watch the monitor.  I looked at Greyson and he still looked pink so I wasn’t worried.  Then I looked back at the monitor (by this time the RT who was right there was looking) and Greyson’s oxygen level was reading 23 percent (shouldn’t be below 87, under 80 is considered a de-sat)  his heart rate was still low and when I looked back at Greyson he was clearly not doing well.  I’m not sure I ever said that you can tell when his oxygen level is low by looking around his eyes and his lips.  If his level is low they will begin to turn a little blue.  Well I didn’t have to look at his eyes or his lips as his whole face was purple.  NOT COOL.  The RT gave him extra oxygen, unhooked his cpap and bagged him and soon his numbers came back up.  All of this took about 30 seconds, which doesn’t sound long until your watching this type of event.  Scary just doesn’t seem to capture the moment properly, but it’s all I have.

Greyson has had a few of these episodes lately.  This is kind of strange as he is old enough that he should have outgrown this type of behavior.  So what we believe is happening is that he is refluxing and when that happens it is not only painful and agitating to him but can cause all this other stuff as well.  I forgot to mention that yesterday they reduced his feeding to three hours worth of food given over one hour.  Today they changed it back hoping this might help with the reflux.  If it continues to be a problem or gets worse they will give him medicine for it, or do a study to make sure it is reflux.  Reflux is extremely common in preemies as the valve that keeps stuff in their stomach is weak and they have a tube down it that is keeping it open to put the food in with. 

Last nights blood gas was good, c02 of 60.  Tonights will be interesting as Greyson was on the nasal canula 2 different times today for a couple hours.  It’s late so I’ll stay up and get the numbers here in a couple minutes.  Sorry I probably won’t come back out to the computer and post them on the blog so you’ll have to wait till tomorrow.

Today was a somewhat brutal reminder that this is going to be a very long process.  Greyson’s due date is next wednesday and he will not make it home by then.  As of now we are hoping early February.  Even once he comes home he will not a “typical” baby.  He will be on oxygen and we will have to be EXTREMELY careful with him for the first couple of years.  I know it will have its difficult times, but right now we just desperately want to get to a place where we can bring him home.  Of course we only want him to come home when he is stable (no more episodes like today, especially without nurses right there to help him through it!).  Sometimes I forget that as good as he is doing he is still in the NICU, they don’t call it the intensive care unit for nothing.

Oh really quick, nothing significant about the X-ray.  Greyson has chronic lung disease which we already knew.

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Jan 12

Shhhh….I’m hiding.

january11-003.jpg

What do I say about today?  This picture is how I found Greyson when I came in.  Looking all cute and sitting up in bed (again with help) eyes WIDE open looking at me.  Stacy took his temperature and it was great so we began to work on his diaper and found one VERY large diaper.  We have heard many diaper stories that you would call, “went up the backside” (you parents will understand that I’m sure!) well what we found was something no one warned us about, it can be “up the frontside” as well as the back!  Man what a mess. 

So we got him all changed and he got his breathing treatment, we tucked him in and Stacy left to go pump.  I was asking the nurse about his chest X-ray when I heard Greysons monitor alarm.  Nothing new here happens all the time.  Well when I looked up at the monitor I immediatly realized it was not his oxygen saturation.  Weird cause that is what is always alarming.  It only took a half a second to realize that it was his heart rate that was alarming.  Greyson’s heartrate shouldn’t be below 100 yet it was alarming because it was only 87.  I stepped over to his crib (about two steps at most) and began to massage his chest while continuing to watch the monitor.  I looked at Greyson and he still looked pink so I wasn’t worried.  Then I looked back at the monitor (by this time the RT who was right there was looking) and Greyson’s oxygen level was reading 23 percent (shouldn’t be below 87, under 80 is considered a de-sat)  his heart rate was still low and when I looked back at Greyson he was clearly not doing well.  I’m not sure I ever said that you can tell when his oxygen level is low by looking around his eyes and his lips.  If his level is low they will begin to turn a little blue.  Well I didn’t have to look at his eyes or his lips as his whole face was purple.  NOT COOL.  The RT gave him extra oxygen, unhooked his cpap and bagged him and soon his numbers came back up.  All of this took about 30 seconds, which doesn’t sound long until your watching this type of event.  Scary just doesn’t seem to capture the moment properly, but it’s all I have.

Greyson has had a few of these episodes lately.  This is kind of strange as he is old enough that he should have outgrown this type of behavior.  So what we believe is happening is that he is refluxing and when that happens it is not only painful and agitating to him but can cause all this other stuff as well.  I forgot to mention that yesterday they reduced his feeding to three hours worth of food given over one hour.  Today they changed it back hoping this might help with the reflux.  If it continues to be a problem or gets worse they will give him medicine for it, or do a study to make sure it is reflux.  Reflux is extremely common in preemies as the valve that keeps stuff in their stomach is weak and they have a tube down it that is keeping it open to put the food in with. 

Last nights blood gas was good, c02 of 60.  Tonights will be interesting as Greyson was on the nasal canula 2 different times today for a couple hours.  It’s late so I’ll stay up and get the numbers here in a couple minutes.  Sorry I probably won’t come back out to the computer and post them on the blog so you’ll have to wait till tomorrow.

Today was a somewhat brutal reminder that this is going to be a very long process.  Greyson’s due date is next wednesday and he will not make it home by then.  As of now we are hoping early February.  Even once he comes home he will not a “typical” baby.  He will be on oxygen and we will have to be EXTREMELY careful with him for the first couple of years.  I know it will have its difficult times, but right now we just desperately want to get to a place where we can bring him home.  Of course we only want him to come home when he is stable (no more episodes like today, especially without nurses right there to help him through it!).  Sometimes I forget that as good as he is doing he is still in the NICU, they don’t call it the intensive care unit for nothing.

Oh really quick, nothing significant about the X-ray.  Greyson has chronic lung disease which we already knew.

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Jan 10

Is all well that ends well?

I think I’ve had it.  As I have already stated Stacy and I have been feeling pretty weary lately.  Well today I just felt like the world was coming to an end.  Stacy called me at work just after 9am to give me the nights report (we didn’t wait up and she said she’d call and find out for me).  I could tell something was wrong by her voice, but didn’t say anything because I could have been wrong and didn’t want to borrow trouble.  Well she told me that Greyson’s c02 for the night was 83.  What!!???  How can he jump 22 points in one day while still on steroids?  I felt like someone had kicked me in the stomach.  All I could think about was that he must have an infection or a collapsed lung.  What else could explain such a dramatic jump in his gas?  Stacy told me that they were going to recheck the gas at 10am and see where he was at that point.

Well if you didn’t know this about me unfortunately I can be a bit single minded.  I didn’t really get any work done until after 10.  My mind was racing and I was stuck with the feeling that this lung issue is only going to get worse, not better.  Finally a bit after 10 I finished up what I was working on (well trying to work on anyway) and headed home.  When I got home Stacy hadn’t called yet so I waited with her to hear the report. 

Oh today we also had a tree removed from our house so that was going on while all this was happening as well.  When I got home the tree which used to lean towards our neighbors house (the reason for having it taken down) was now leaning much more towards our house.  They got it down OK and it was really cool to watch how they did it.  Sorry this is not a blog about tree removal…I’ll get back on course.

So Stacy called and at 10:30am his c02 was 61.  Yep, it was really good again.  So what happened last night?  Who knows.  They are doing a chest X-ray tomorrow to see if it shows anything, but since his numbers came back so much better it could have been something that was just happening at the moment they drew his midnight gas. 

So the moral of the story?  I’m not sure but the truth is God is a good God and worthy of our trust.  He has assured us time and time again that He is in control and not to freak out, so what do I do when a bad number comes?  Freak out!  I’m hoping we don’t have to test whether or not I’ve learned that lesson. 

So here are two more pictures to show just how far Greyson has come. 

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the first picture was taken at the end of October, the one on the right was taken today.  Yes the lungs are frustrating, but God is still growing an amazing boy right before our eyes!

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Jan 10

Missing Pieces

We have updated our blog to include the previously missing entries from Sept. 25th, Greyson’s birthday, to November 7th.  These entries came from emails that we sent to our family over those first stressful days.   Now we look back and rejoice over what God has done!

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Jan 09

Don’t hate me because I’m beautiful

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Today was a great day.  We went early as we had prearranged to give Greyson a bath.  Since we knew ahead of time I was able to bring my video camera and record the experience.  The boy loves baths!  Stacy really enjoyed giving him one as well.  He needed one as he had quite a time with his milk today. 

Apparantly earlier today Greyson’s feeding tube started leaking and got milk all over his bed.  So they cleaned him up, changed the bedding, and got him going again.  Then when the nurse went to lunch Greyson decided he’d had enough food and pulled his feeding tube out.  This left it to leak all over the new bedding!  After both these episodes it is very posible that he is going to be really hungry but they are doing all they can to get him caught up.

His gas was good last night, c02 of 61 (yes mom my prediction was very close.  His ph went down, c02 went up, and the other numbers I follow were better).  God is touching his lungs even though it is a slow process. 

His last ultrasound came back good.  They did find something of “insignificance” on this ultrasound.  Basically they found some mini cysts in his brain.  While this sounds bad it is possible that this was the result of a grade 1 bleed that happened a long time ago (which means it didn’t and won’t cause any problems).  Even if that was not the case they are in a part of the brain that is only dangerous while the brain is growing.  Apparently since his brain has developed past this section it does not present any type of concern and was just something they noticed on this scan.  So he is now done with the brain scans and is OK in that area!  Praise the Lord! 

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Jan 09

Don’t hate me because I’m beautiful

january9-002.jpg

Today was a great day.  We went early as we had prearranged to give Greyson a bath.  Since we knew ahead of time I was able to bring my video camera and record the experience.  The boy loves baths!  Stacy really enjoyed giving him one as well.  He needed one as he had quite a time with his milk today. 

Apparantly earlier today Greyson’s feeding tube started leaking and got milk all over his bed.  So they cleaned him up, changed the bedding, and got him going again.  Then when the nurse went to lunch Greyson decided he’d had enough food and pulled his feeding tube out.  This left it to leak all over the new bedding!  After both these episodes it is very posible that he is going to be really hungry but they are doing all they can to get him caught up.

His gas was good last night, c02 of 61 (yes mom my prediction was very close.  His ph went down, c02 went up, and the other numbers I follow were better).  God is touching his lungs even though it is a slow process. 

His last ultrasound came back good.  They did find something of “insignificance” on this ultrasound.  Basically they found some mini cysts in his brain.  While this sounds bad it is possible that this was the result of a grade 1 bleed that happened a long time ago (which means it didn’t and won’t cause any problems).  Even if that was not the case they are in a part of the brain that is only dangerous while the brain is growing.  Apparently since his brain has developed past this section it does not present any type of concern and was just something they noticed on this scan.  So he is now done with the brain scans and is OK in that area!  Praise the Lord! 

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Jan 08

Now look what you guys started!

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Actually Greyson (and the rest of the family) love hearing from you all.  Your posts help us know that there are others who are sharing in the miracle that God is doing in and through Greyson’s life.  So thank you very much!  Not to mention the laughs we are getting, which help keep our spirits up when we face tough days.

Today was close to a fantastic day.  Greyson’s c02 was down to 59, he was awake a bit while we were there.  His weight, head, and length numbers were all good (his weight is now 7 pounds 4 ounces, his length is 20.25 inches, and I can’t remember anything about the head measurement except when the nurse tried to do it a second time to make sure she had it right, he squirmed so much she couldn’t do it!).  The only downside was Greyson had another Brady last night.  In case you forgot, Brady’s are what they call it when their heart rate drops lower than it should be.  We are not sure of the cause but it is possible that Greyson has some reflux issues starting to show up.  This is very common in preemies and if he was refluxing and coughing it would probably explain the brady.  Again time should answer these questions and solve the problem. 

Tomorrow Greyson will have another head ultrasound.  This is because he is now over 38 weeks gestationally.  If it is normal this will be the last one as he is now full term gestationally! 

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Jan 07

Title contest

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OK so we decided to have another little contest.  This one is to give this picture a title, or caption that sums up what Greyson is thinking in this picture.  The winner will receive many laughs and possibly a picture of the little guy himself.

Today was a good day, Greyson’s c02 stayed the same at 64.  He was awake and alert for about an hour and we really enjoyed looking, talking, and interacting with him.  I think we are getting better at identifying when his oxygen level is low, which is encouraging as someday he will not be hooked up to monitors and we will have to be able to tell that by looking at him. 

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Jan 06

Happy Birthday Stacy!

Greyson came through and gave Stacy the exact present she wanted.  His c02 last night was 64.  Due to the fact that his gas was under 70 Stacy got to hold him on the nasal canula, which is much easier and more pleasant than on the cpap.  She had a great visit with him and he was even alert and looking at her for over an hour.  We are praying he will continue to keep his c02 lower so he can progress. 

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Jan 05

Hey, what happened?

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Greyson again lost his nasal canula time today.  His c02 last night was back up to 73 and with the new orders that means no nasal canula time at all until they are below 70.  This was very frustrating to us as it feels like we are just not making progress with his lungs.  We know this is all part of the NICU dance but would just really like to see him stay out of those high numbers.

Stacy and I both held him today, he was quite a bit cranky throughout the whole day but did enjoy being with us and as always we certainly enjoyed our time with him.  Tomorrow is Stacy’s birthday and she told Greyson all she wants is low gas numbers, so we are praying he can come through.  Not much else to report for today, as always we’ll see what tomorrow holds for us.

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