Feb 15

Mommy and Daddy miss Greyson!

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We are already planning our early start to the hospital tomorrow.  Bob is feeling much better and I never had more than a tickle in my throat and that has been gone for more than 24 hours now.  I took a supplement called ColdMD which gives you a big dose of Vitamin C and Zinc.  It really seemed to work well.  We are excited to cuddle our little guy.

Greyson had some bad blood gases both at midnight and noon today.  We are praying that they come down soon.  From reports of the nurses it sounds like he is doing ok as long as he is being held.  He is quite comfortable in someone’s arms but a little cranky when he is left in bed.  He had some very good naps today, lets hope that leads to good healing.  Please continue to pray for the healing of his lungs, we need to see some progress soon.  The pic is from Feb. 1st.

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Feb 14

Happy Valentines Day!

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Greyson celebrated his first Valentines Day by getting a picture of his heart!  Pretty fitting day for an echocardiogram don’t you think? 

Bob and I both stayed home today.  He is still coughing quite a bit and even though I don’t have any symptoms I am just too worried about transmitting something to Greyson to take the risk.  Bob may have RSV which is extremely contagious and can be transmitted even before you know you have it.  We have been working hard to keep me well with lots of handwashing and by generally avoiding each other.  It made for a kind of lonely Valentine’s Day but we can talk to each other on the phone from opposite ends of the house. 

We have been calling in at the middle and end of each shift today to see how things are going with Greyson.  He has been sleeping a lot and has been cuddled by lots of baby rockers and nurses today when he was fussy.  The doctor called tonight to give us the results of the echo.  It looks like the right side of his heart is still the same as it was a month ago, a bit thickened due to increased work load from the Chronic Lung disease.  The left side is changed as it is showing some thickening also due to the steroid use.  They plan on keeping him on the CPAP full time and when his CO2 levels are good they will decrease the steroid use and try to correct this problem.  Then we will just play the waiting game for him to get off the CPAP.     In the big picture we know that God has Greyson in his care, that he is there with him all the time, and that he has a plan for all of this.  When I get discouraged about spending more and more time in the NICU I try to remember that God’s plan is bigger than I can see.  I pray that the Lord will use this time, Bob, me, and Greyson to reveal His love to those we meet there.  He is already revealing it to us through His amazing, sustaining grace.

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Feb 13

Prayers for a better day were answered!

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Thank you all for joining me in praying for Greyson’s comfort.  Today was a much better day, he was able to rest despite all of his irritations.  I got there in time to see the PH study start.  It was quite interesting watching the man callibrate the PH machine by placing the probe and Greyson’s hand into a very tall (about 1 foot) tube of yellow liquid and then repeat it with a pink liquid.  He placed the tube, which is a little bigger than a piece of spaghetti,  down Greysons throat with his feeding tube until it was just above his stomach.  They took an xray to be sure it was placed correctly.  Now for 24 hours it will monitor the PH of that little spot.  The machine had buttons to push that indicated when the infant has a desat or is upset.  I just sat and held my boy and pushed the buttons when needed for quite a while today.   We pray that it helps find out the problem soon!  

He was mostly content and quite sleepy.  He even had a short break from the CPAP tonight as we weighed him and gave him a little sponge bath.  He seemed happier after that and when I left he was looking contentedly at his mobile.  We have such wonderful nurses that I never worry about him being alone in his miserable moments.  There is always someone there to pat his tummy or take him out of the bed and rock him.  I cannot sing their praises enough.  If I ever hear them talking about things that they wished were different in the NICU it is always about how the babies can be even safer and more comfortable.   What a blessing each and every one of them are to us.

And now for two exciting and fun tidbits.   First of all Greyson is now 10lbs and 1 ounce.  That really snuck up on us!  Secondly Greyson has very fitting plans tomorrow to celebrate his first Valentines day.  Tune in tomorrow to hear about it!  Thank you all for your prayers for Greyson and for Bob who had to stay home again today, and also for your encouraging words to me.

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Feb 12

grumpy day

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Bob was sick again today and couldn’t visit Greyson.  I think Greyson must have missed his daddy a whole bunch because he just wouldn’t settle down.  In actuality he was just very worked up today over everything that annoys him, CPAP, gas cramps, steroid creepy-crawlies, and heartburn.  He didn’t get any canula time today because his blood gas number was too high.  Poor little kid just couldn’t get a break today, everytime I got him settled down and calm he would last about 10 minutes and then start fussing again.  Some of his fits were quite dramatic and he had mommy crying along with him.  The good news is that he didn’t desat with these episodes even if they were prolonged.  He was awake for most of the day so I expect he will sleep good tonight.  With all the activity I didn’t get a picture today so this one is from yesterday.  Please pray for Greyson to have a comfortable day tomorrow.

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Feb 11

and I kept my thumb out just like you taught me when I punched her….

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So Stacy told me (yep I’m sick AGAIN and didn’t get to go) that she heard from the nurse a funny story about today.  Apparently when she got there Greyson woke up and was upset.  So she picked him up and said the only part of his body that was touching her was his stomach as he was arching so much.  He was also swinging his arms and kicking.  “He’s got a pretty good punch” she said.  He’s naked in his bed in this picture because he was throwing such a fit the nurse was unable to put clothes back on him, although it’s hard to imagine from this picture.

It sounds like they had a great visit today.  As soon as Stacy got there Greyson woke up and was really social and happy, just loving visiting with his mom.  His GI study is going to be on Wednesday so it is good to know that we will possibly have some results from that soon.  While he was awake most of the time he did fall asleep in Stacy’s arms and just snuggled in really well.  Stacy can’t really describe it she says, but it was definately a great moment from what she can get out.  Basically she describes it by smililng and holding her arms like she is holding him and looking down where he would have been.  So it was one of those moments!

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Feb 11

and I kept my thumb out just like you taught me when I punched her….

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So Stacy told me (yep I’m sick AGAIN and didn’t get to go) that she heard from the nurse a funny story about today.  Apparently when she got there Greyson woke up and was upset.  So she picked him up and said the only part of his body that was touching her was his stomach as he was arching so much.  He was also swinging his arms and kicking.  “He’s got a pretty good punch” she said.  He’s naked in his bed in this picture because he was throwing such a fit the nurse was unable to put clothes back on him, although it’s hard to imagine from this picture.

It sounds like they had a great visit today.  As soon as Stacy got there Greyson woke up and was really social and happy, just loving visiting with his mom.  His GI study is going to be on Wednesday so it is good to know that we will possibly have some results from that soon.  While he was awake most of the time he did fall asleep in Stacy’s arms and just snuggled in really well.  Stacy can’t really describe it she says, but it was definately a great moment from what she can get out.  Basically she describes it by smililng and holding her arms like she is holding him and looking down where he would have been.  So it was one of those moments!

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Feb 10

Mobile’s are cool.

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Stacy got this great picture of Greyson today while she was visiting.  She said Greyson had a good day and stayed awake for about 4 hours.  They played all kinds of games together.  I got the report from her but nothing really stood out to share.  His c02 was up again last night, a bit higher in the 70’s but the Dr. didn’t seem to concerned.  I think they are just waiting to see what the GI study shows.  Hopefully that will start tomorrow or very early this week.  I think my sermons went OK today, if you’d like to listen to it you can check out our church website at www.bremertonnazarene.org.  I’ll probably have it posted by Tuesday afternoon.  Other than that there is not much to say so I’ll close for now.  Tomorrow is a brand new day with new challenges and blessings in store for all of us!

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Feb 10

Mobile’s are cool.

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Stacy got this great picture of Greyson today while she was visiting.  She said Greyson had a good day and stayed awake for about 4 hours.  They played all kinds of games together.  I got the report from her but nothing really stood out to share.  His c02 was up again last night, a bit higher in the 70’s but the Dr. didn’t seem to concerned.  I think they are just waiting to see what the GI study shows.  Hopefully that will start tomorrow or very early this week.  I think my sermons went OK today, if you’d like to listen to it you can check out our church website at www.bremertonnazarene.org.  I’ll probably have it posted by Tuesday afternoon.  Other than that there is not much to say so I’ll close for now.  Tomorrow is a brand new day with new challenges and blessings in store for all of us!

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Feb 09

and after playing with the frog lets play…..

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Greyson was in a very playful mood today.  We played all kinds of games including touch dad’s nose.  He would touch my nose (with mom’s help) and then I would sit back and cover it up.  Greyson would just stare at me like he was trying to figure it out, and often like he was almost going to smile.  He played several other games with us as well.  It was a lot of fun.

Greyson got his nasal canula time extended to 6 hours today.  So he is back to six on canula, six on ncpap.  This was NOT because his blood gas numbers have been good, as they have continually been high 60’s to low 70’s.  Last night his c02 was 75 so it was a bit shocking that the Dr. ordered a longer canula time.  We’ll see how he does.  It will be very interesting to get the gastorintestinal ph impedence study done next week and see exactly what is going on with the reflux.  He seems to de-sat in relation to the reflux (as best we can tell) so this could help get him on track.  They have slowed his feeds down to 2 hours and put him on some medicine for reflux twice a day.  All of these things seem to help some, but don’t get us closer to comming home.  After 138 days in the NICU, we want Greyson home more than words can express.  Right now we are hoping he will make it home before 6 months, which would be March 25.  We’ll see as he’s got a lot of work to do before then.

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Feb 09

and after playing with the frog lets play…..

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Greyson was in a very playful mood today.  We played all kinds of games including touch dad’s nose.  He would touch my nose (with mom’s help) and then I would sit back and cover it up.  Greyson would just stare at me like he was trying to figure it out, and often like he was almost going to smile.  He played several other games with us as well.  It was a lot of fun.

Greyson got his nasal canula time extended to 6 hours today.  So he is back to six on canula, six on ncpap.  This was NOT because his blood gas numbers have been good, as they have continually been high 60’s to low 70’s.  Last night his c02 was 75 so it was a bit shocking that the Dr. ordered a longer canula time.  We’ll see how he does.  It will be very interesting to get the gastorintestinal ph impedence study done next week and see exactly what is going on with the reflux.  He seems to de-sat in relation to the reflux (as best we can tell) so this could help get him on track.  They have slowed his feeds down to 2 hours and put him on some medicine for reflux twice a day.  All of these things seem to help some, but don’t get us closer to comming home.  After 138 days in the NICU, we want Greyson home more than words can express.  Right now we are hoping he will make it home before 6 months, which would be March 25.  We’ll see as he’s got a lot of work to do before then.

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