Westfall Web

 Last night his blood gas c02 remained at 56 which we were very happy about.  I got that update when I called in this morning and was very excited to see him when we got to the hospital.  I hurriedly washed up and walked to his room.  As I rounded the corner I was greated with …………..empty space!  Greyson was gone.  Apparently he had jumped out of his crib and crawled away some time during the night.  I know the feeling as a couple weeks ago when Stacy got up to pump I woke up just enough to look at the recliner and scream out, “where’s Greyson!?  Where’s Greyson!?”  Stacy calmly replied, “well he’s still in the hospital” “Oh”, I replied, “that makes sense” and I went back to sleep.

OK so Greyson in fact did not jump out of his crib and is not crawling anywhere just yet, but in fact he is no longer the pillar of room B.  I went into the hall to tell Stacy that they had moved him and ran into the Dr. who took me to find him.  He led me into room E saying he had just seen Greyson a little bit earlier and was very pleased with his progress.  Well he wasn’t in room E but we did track him down in room C (don’t blame the Dr, they see a lot of babies and they usually move around a lot!  Greyson has been very unusual by the fact that he has stayed in the same place for so long).  Room C is OK, it’s a little more cramped but is a step towards the door and moving upstairs.

I am also very happy to report that Greyson’s 1pm blood gas found him with a c02 of 50!!  That’s my boy!!

Wow what a great day!  Do you notice something different about what Greyson is wearing on his face, or at least trying to wear?  Yes he got to spend a couple hours on the Nasal Canula today.  Most of the time he actually had the prongs in his nose.  Something went a little awry for right before this picture was snapped.  He is naked because in addition to getting to be on the nasal cannula for awhile, he also got a bath today.  Boy did he need one!  I’m not trying to be mean, but he was really getting ripe!  He started throwing a fit as we were getting him ready for the bath, and really started to cry when we first put him in the water.  After splashing him a couple times though he settled right down and enjoyed it.  I’m not sure who enjoyed it more, Greyson or his mom, but it really was fun for the whole family.  Now if only we had a rubber ducky…..

Greyson’s midnight gasses had a higher c02 last night.  It was up to 66 which made me a little nervous.  I was worried he might be starting to trend upwards again.  Not good since he is on the steroids.  My fears were put at ease this afternoon however when his 1pm gas came back with a c02 of 56.  We haven’t seen a c02 that low since he got off the ventilator.  There are other factors with his gas than just the c02, and all of them looked really good on this last gas.  We are very proud of him for doing so well and working so hard at a time when he should still be just chilling inside his mom. 

Our family has an old tradition where Mrs. Claus visits on Christmas eve and gives all the kids a present.  The present is always new pajamas.  Well this year Mrs. Claus visited Greyson and gave him a new pair of pajamas too.  They were a little to big for him but matched his cousin Jon’s so Greyson thought it was really cool to have the same pajamas.

Greyson had a great day today.  He wasn’t to upset and did well with all his care times as well as with Stacy and I holding him (we took turns since we were there for so long today).  His blood gas numbers for midnight was 60, and at 1pm he still had a c02 of 60 so he seems to be doing much better now that he is on the DEX (steroid).  Hopefully he will continue to show improvement and will be able to advance further toward coming home.

Greyson had fun today suprising his mom with a special Christmas present.  When we arrived today and looked in Greyson’s crib we found a gift wrapped lying next to him.  On it was written, “To mommy, love Greyson”.  Stacy opened it and there was a necklace of a mother and child with a saphire (Greyson’s birth stone) in it.  I’m not sure how he got out and shopped for it, but I think he may have used my debit card, smart boy!

*To play video select it by left clicking on it, then right click and select play. 

Well Greyson has been back on the steroids for about a day now.  I decided to post this video since I never posted one of him crying.  As you can see he was a bit fussy at times today, yet his cry is getting louder!  Greyson’s midnight gas was still bad (75) but his 1pm gas today found his c02 down to 62!  Way to go Greyson!  We were very happy about the numbers as just before the gas results the Dr. on today came by and told us that they were giving him a very conservative dose of steroids and we might have to up the dose in order to get things started in the right direction.  Hopefully tonight’s gas will continue to be good if not better!

So I am thinking Greyson is going to be an actor when he gets older.  I didn’t capture it in this video, but at about the same time he was being extremely dramatic in his cries.  He would let out a cry while he raised one of his hands like he was quoting Shakespear, then he would turn his head a bit and do the same thing with the other hand.  It was so funny!  Stacy finally told me it was probably not nice to stand over him and laugh while he worked so hard to let us know he was not that happy, but I just couldn’t help it, it was really funny!

Tomorrow we will spend the day at the hospital with Greyson, although we gave him his present today.  We bought him an mp3 player (or r2d2 player as my mom likes to call it   ) and a mini speaker.   We loaded the mp3 player with a cd my mom bought Greyson that has his name inserted into all of the songs.  His face was funny when I played it for him because he started looking around like, “Hey I hear a person’s voice but can’t see anyone, yet they have to be right here!”.  I think he will really like hearing the music.   We also learned today that he is liking his toy so much it needed new batteries,  so all things considered he is doing pretty good.

Merry Christmas Everyone! 

Today Greyson, and Stacy, got a suprise visit from Stacy’s old college roomate Julie.  Julie has always been wild and fun so I’m sure they had a great visit.  While Stacy was holding Greyson today she said he kept lifting his head up and turning his head to the other side like he was getting uncomfortable and deciding to switch sides.  He was able to do this all on his own with Stacy only helping with the cpap hoses.

Well we’ve been talking about it for awhile but today was the day Greyson is restarting steroids.  His c02 was 79 last night at midnight and was still in the 70’s when they checked him again at 6am.  The trend in his numbers has not shown improvement like we had hoped so he will start another short round of steroids to give him a push forward.  This will not be as strong of a dose as before but should be enough to help him enough to progress.  We may have to enroll Greyson in anger managment classes if he starts having “roid rage” (yes Debbie that is roid as in steroids, not road as in while driving ). 

A couple weeks ago in my men’s bible study we were going through Joshua ch. 4 and how God commanded Joshua to set up stones as reminders of the miracle crossing of the Jordan river.  I was talking about how we should erect some form of markers in the midst of our circumstances to serve later as reminders of all God has done for us.  Anyway I’m looking for a 700 gram rock if anyone has one.  It has to be exactly 700 grams and I will use it some day to show Greyson how much he weighed when he was born and to tell him his story of how God has worked in his life.  Anyway any help would be great.

 Also Stacy and I are becoming more and more aware that there are a lot of people reading these updates.  We would love to have you leave us a comment if you haven’t done so already so we will be able to get a better idea of everyone who checks in here.  Just click below on “view comments” and you will see a place to add your own.   **When you first leave a comment it will not be added to the website until I approve it in order to prevent spam.  Once I approve one of your comments the next time you post it should go right through.  Anyway thanks for reading and keeping us in your prayers, it means the world to us! 

Unfortunately Greyson is still begging us for a wii for christmas, the good news is he really doesn’t know what a wii is so I think we may be able to pull a fast one on him.  This could be a problem later as he gets older, but for now we should be OK. 

Greyson did not have good gas numbers last night.  At midnight his c02 was at 76 so they ran another test at 3am and it had gone down to 69.  Still a long way from great but they will continue to let him ride the line and test him again at midnight tonight.  We are so looking forward to the days when he is consistently running better numbers than this. 

Today he seemed much happier than yesterday.  I held him for over 3 hours and aside from dealing with the incredible stink he was putting off it was a great time.  I don’t want to be one of those parents who won’t admit it, my kid stank today!  This was largely due to the gas he was, shall we say, blowing off while I was holding him as well as the extra large diaper he was producing.  After changing his diaper at 1 he seemed much more comfortable.  He was running higher on his O’s today (that’s the easy way of saying oxygen at the hospital) but did not de-sat very many times the entire time we were there which was an improvement.  As always we just need more time.  He is a remarkable young man and has overcome a lot more than I have in my 34 years.  It’s amazing how much easier life can be when you start out at on the normal time table.  Amazingly Greyson is still on track to be a regular sized newborn by his due date.  At this point it doesn’t look like he will make it home by then, so he will just be one of those “late” babies that comes home a few weeks after the expected due date. 

Well I hope you have all your christmas shopping done by now, if not you might want to think cash or gift cards as it is getting crazy out there!  Not that I would know personally, we’ve been done since thanksgiving (is my wife on top of things or what!?).  OK have a great Saturday night and we’ll update you on what Stacy finds tomorrow (I’ll be at church confessing my jealousy in not being able to go see Greyson on Sundays).

Well today wasn’t that great of a day.  It started off good as I called in to get Greyson’s blood gas numbers.  His c02 was down to 65 and he was still tolerating his new feeding schedule.  We were excited to get there and celebrate how well he was doing.  When we walked into the NICU and I first saw him I had the funny feeling something was up.  Basically this came from the fact that he was requiring more oxygen than normal.  This didn’t have to mean anything major, it could just be that he was holding his breath or fussy and was bumped up for just a bit.  Well while I was waiting for our nurse to come over and talk about how his day had been going the Dr. stopped by.  He asked if we were aware of Greyson’s “episode” that he had earlier in the day.  Turns out Greyson had stopped breathing for a long enough period that he not only de-satted but his heart rate fell very low as well (called a Brady).  Greyson is really old enough now that he shouldn’t be having these, and since he never really has had them it was a bit troubling.  The Dr. couldn’t provide any real reason as to why it happened but said if it happened again he would like to start Greyson on the steroids again for a short time to help ensure he is breathing OK. 

Well after all that we had a great care time with Greyson and got some fantastic pictures.  Yes I am biased, but come on look at the pic for today.  Awesome isn’t it?  Anyway Stacy held Greyson for a couple hours and then we put him back in bed for his care.  He was extremely fussy during the care time, so much so that we didn’t even get him dressed.  We finally left his shirt half on and just bundled him up with blankets to calm him down.  He was calming down and the nurse said she would dress him after a bit.  It was just hard to have him have this “episode” and then have to leave knowing he had been so upset just prior to our leaving.  I guess we haven’t had a bad day in awhile and if this is the worse we get from here on out it won’t be so bad.  Still we are hoping tomorrow he is feeling better and forgets all about having any more of these episodes.

For those who are curious, the tube going into his mouth is his feeding tube.  He normally wears the cpap mask but we get to take it off while we weigh him.  He broke 6 pounds today can you believe it?