Westfall Web

So we got to the hospital at 11:30am and learned Greyson hadn’t had a very good night.  His blood pressure had dropped very low and some other readings were not very postive.  After running a bunch of tests it looks like the problem was they reduced one of his meds (it’s a steroid type but I can’t remember exactly, hydrochrodezone or something like that).  Anyway yesterday they had cut the dose in half because he was doing so well and the goal is to get him off of it.  Well it looks like he didn’t care much for that and has insisted he be put back on it, at the dose he was getting before.  They did this before we got there and he had a pretty stable day.  Due to this tramatic night he was taken off the “feedings” he was getting.  Amazingly he was “fed” again at 4PM as he was doing much better.  His blood pressure readings seemed stable the entire time we were there.  Hopefully that is all there is to it.  The next time they go to cut his dose they will do it much more gradually and hopefully get him off it slowly over time.

He didn’t gain any weight today, but didn’t lose any either.  He remains at 630 grams right now.  We would really like to see him get above his birth weight as tomorrow it will be three weeks.  They have upped the amound of sugar he gets in his IV and his blood sugars have remained stable so that is good and should help him get the extra calories he needs to put on some weight.  They also did another echo on him and the cardiologist said that while his PDA is still open, it is small and does not seem to be causing any problems.  They will check it again in a couple weeks.  Well that’s about it for now, the plan is for me to get to do the Kangaroo care on Wednesday as long as Greyson remains stable enough to do it.  Stacy will not be able to buy me off with a pickle this time, although for an iphone maybe…..

Well Stacy gave me the sad eyes and therefore got to hold Greyson again.  Next time I’ll get to do it.  He seems to still be doing really pretty well.  He was pretty pale today but had a blood transfusion while Stacy was holding him which helped his color.  He went poop sometime while Stacy was holding him (no poop when I changed his diaper right before, and quite a bit when I changed it after).  This is a good sign that things are moving as they should be. Not much else to report for today, remember no real news is usually good news!.  Here is a picture while Stacy was holding him.

Well today was another busy day for Greyson.  They started giving him some breast milk again this morning at 8AM.  He gets 1cc every four hours and before giving him any more they suction out his stomach to see what happened.  As of Noon and 4PM they didn’t get anything which means the food has left his stomach and we will have to wait and see what happens now.  When we went to change him at Noon we received a BIG suprize.  Stacy pulled back his diaper and gasped really loud and said “Oh my goodness”.  She immediately called his nurse over and as soon as she looked down she also gasped really loudly and said “Oh my word!”.  Another nurse called out “Is everything OK over there?”.  Well it was, in fact it was a good thing it was just that  Greyson had mad a MAJOR poop.  It was black and tarry (it’s the maconium or however you spell it) and was more than I would have thought a kid his size could have made.  Pretty much what the nurse said too, especially since he had the stomach perforation just last week.  This is a good sign that things are starting to work so it was exciting.  When we went to change him at 4 he had made another fine mess.   Not quite as dramatic but considering what he’d done just four hours earlier it was quite impressive.  Not much else to report things look good.  He’s probably going to have another blood transfusion in the morning as he is looking a little pale but everything else looked pretty good.  We still have a long way to go, even with the stomach issue as the Dr. said even if he gets to full feedings we could encounter a problem in a couple weeks all related to the perforation.  We will just cross that hurdle when and if it comes.

Stacy bought me a pickle for lunch trying to bribe me into letting her hold him again tomorrow.  I was hoping it would be my turn but decided I’d yield and let her do it again so as long as Greyson is doing well in the morning she will get to hold him for a few hours again.  We continue to be amazed by him and praise God for the incredible blessing he is to us.  Enjoy the pics (Greyson’s hand is covering his face I believe because he knows what we are about to find when we undo his diaper!)

Ok so here is the update for tonight.  I’m tired and just finished my school paper so this has to be quick.

Greyson has had a pretty good day today.  They had to turn the rate back up on his vent (not great but to be expected, this will go up and down the whole time it is on it).  We really have to pray for his little lungs as the vent does damage to them.  The doctor was talking to us tonight and said, “well it does some damage just by being there, his lungs really weren’t meant to have air in them at this point”.

Other than that things are going good.  We learned tonight that they will introduce small amounts of food (1cc of breastmilk) to Greyson starting tomorrow and give it to him every four hours.  This is a HUGE step that he needs to get past.  Being able to take food in, process it, and send it out the way its supposed to go is one of the major hurdles Greyson has.  This will also show if his stomach has healed, and eventually will show if it has healed appropriately or if he will need surgery.  Pray this goes well and he can build up to full feedings without problems.

That’s about it for tonight.  The pics are kinda grainy tonight because they had the lights down, but this one is still pretty good

So today turned out to be a pretty big day for the Westfalls.  I decided we should go to Tacoma early in the morning so we could see him, leaving the rest of the day for me to work and finish a paper for school.  Well we got to the hospital and after doing Greysons care the nurse asked if we had time to stay around.  See Greyson’s isolete gets changed every two weeks.  It was time for his to be changed so the nurse said we could stay and help, holding Greyson as they wheeled his isolete out and the new one in.  Then the nurse said she had to go ask the Dr. a question.  She did and when she came back she said the Dr. said it was OK to do Kangaroo care, which is holding Greyson skin to skin on your chest.  We jumped at the chance and Stacy was able to hold Greyson for almost three hours!  He loved it!  As did Stacy let me tell you.  In doing research about kangaroo care it seems it has dramatic benefits for premature babies.  All in all it made for a great day!  In this picture Greyson is under all the blankets on Stacy’s chest.  I’ll send another e-mail with a better picture of this monumental event.  If Greyson is doing well we should be able to do this about every three days or so, and I can even do it at some point!

Wow, it is hard to believe that Greyson is two weeks old tonight!  We just got back from visiting him and I thought I’d get this sent off before I go to bible study.  Greyson is doing well tonight.  He looked very cozy when we got there and made it through his handling without any problems.  His drain site looks OK and his stomach seems to be about the same.  Time is the important factor now that the drain is out and should tell us whether or not his stomach has healed, we of course are praying it has.  His PDA continues to be quiet which hopefully means it is closing or has closed.  Blood pressure and blood sugars continue to be doing well so that with his breathing seems to indicate all is well with the PDA, that to will be determined by time.  His weight continues to fluctuate which is frustrating at this point because it is really hard to tell if the differences are because he was not weighed the same, or other factors.  Tonight he was 1 pound 3 ounces.  For awhile he was 1 pound 7 ounces but we are starting to believe that those numbers were not accurate, possibly due to extra things he had going on but who knows.  Lord willing over the next week we should see a definate pattern of weight increase develop which would be really good.  Well here is a pic from tonight (I actually remembered the camera!).  He still has a long way to go but we are praising God for the good day he has had so far today.

Well we just got back from seeing Greyson.  He looked pretty good today.  Not much new to talk about other than the nurse went to pull out his drain a little bit (if you haven’t heard they pull a little out each day) and there was so little left that the whole thing came out.  This is really neither good or bad but will mean the next couple of days are important.  They will watch him closely and see if anything drains out of the hole that remains before it seals up.  If nothing drains out of that and there are no problems as that hole heals it should mean that his intestine has healed and is no longer leaking into his belly.  That of course is what we are hoping for.  Time will tell and it will be a couple more days before we know anything definative.  If it is healed we will try feeding him again in a few more days after he is all healed up and see what happens then.  This is a major hurdle for him to overcome so we are praying that everything has healed correctly and that this episode did not create any new problems.

Other than that everything is looking OK.  The nurse couldn’t hear his PDA which is good and his blood pressure remains up.  He hasn’t required insulin since Friday night.  So we are just thankful that today seems to be one of the good days.  I don’t have new pictures because I forgot the camera yesterday and today, but I’ll include one from Saturday that you might not have seen.  I forget which ones I send so I’m sorry if it is a repeat.

So we received some good news today.  Greysons drain was pulled out a little today (they take it out little by little) and the Dr. felt it was doing OK.  They also said that his PDA had shown marked improvement.  It could open back up again but for now it seems to be closing.  We had a bit of a scare while we were there, Greyson has a nurse and a nurse resident (nurse who is still receiving further training).  The resident nurse was suctioning Greysons lungs and there was a kink in the hose or something that had buzzers going off and clearly was not very good for Greyson.  The other nurse was gone because there was an explosion in Tacoma and the hospital was put on alert in case there was mass casualties.  Anyway another nurse (there are lots in the NICU at all times) came over and helped get things fixed.  It probably wasn’t as bad as it seems but it is very nerve wracking anytime something isn’t going quite right.  They have lots of buzzers and other things that go off and it really gets my heart going.  We are trying to learn what things not to be alarmed by, but this was clearly something to be alarmed about, although something that was fairly easily and quickly resolved.  Apparently there are some things you want to double check before you start suctioning so you can quickly fix it if there is a problem.

Stacy is doing OK with her infection.  It will take another day or so to see if the antibiotics are working.  Her incision doesn’t seem to be any worse so that is a good sign.  It will be so nice when we get her back to normal!

So we just got back from seeing Greyson, got this picture I thought was pretty good with both eyes open.  He continues to hang in there, nothing really new to report.  They changed the tape around his vent which is nice so now his little face looks better.  They actually took a picture for us without any tape that is really nice becasue you can really see his face better.  I’ll try to hookup my scanner before to long and send it to you all.  His drain output was not much again so hopefully that means it is well on its way to healing.  Now he just really needs to fatten up!  His weight has been pretty steady the last couple of days, but we haven’t seen the real gaining we want yet.  Hopefully the next two days or so will show a steady tend upward.  Well that’s about it for now.  Hope you enjoy the pictures.

Well we haven’t made it over yet to see Greyson, but he did get his first official document in the mail today.  He received his insurance card.  Man he seems so grown up to have his own.  I don’t think I got one till I was in my 20’s, or maybe mom just hid mine from me.

Anyway the report is that he is doing OK.  His drain didn’t seem to be putting out anything much today which is good.  Not much else to report at least at this point.  We will take off to see him in a few minutes.

We were delayed as we had to take Stacy in to see her Dr. again.  She seems to have a little infection around her incision so we are getting her on antiobiotics to clear that up.  I’ll tell you between Greyson and STacy we are certainly taking a lot of antibiotics, good thing I’m not bacteria or I’d be done for.

Well since Debbie was giving me grief about no pictures today, here is couple new ones to hold you over until we go see him today.