Westfall Web

Tuesday is always weight and measurment day.  So we had to see just how big his little head is now, how long he is, and how much he weighs.  Man is his head getting big!  We are not entirely certain if it is just baby growth, or if it is because he knows he can make us jump by holding his breath until the alarms go off.  Either way he does hold his breath quite a bit.  It gets frustrating as you look at him turn beat red and then you hear the alarm on the ventilator and you wait……..and tonight we waited………….and waited………….and start saying “Breath Greyson”………and we wait………and we say “stop holding your breath buddy”………and we wait………….and he breaths.  Well when he holds his breath to much (like just described) then he sets of the saturation alarm because of course he’s not oxygenating his blood when he’s holding his breath for so long.  He will probably have to be grounded for this when he is a teenager.

His weight continues to go up to fast.  He gained 100 grams from yesterday.  This is way to much.  He still looks quite puffy.  The nutritionist yesterday told Stacy she thought they were giving him to much food (something we have talked to the Dr. about already) and made the recomendation that they maintain his feeds where they are for a few days to see if it helps the puffyness and his CO2 levels.  Well they stayed the same for a day and then tonight they upped the feeds again.  We are questioning this but don’t know what will become of it.  Obviously the Dr’s have their reasons, but we don’t like seeing him so puffy or gaining weight more than he should (which coincidentially makes him puffy!). 

So yesterday I changed his diaper and he hadn’t pooped.  Then we were weighing him and he was a bit fussy before finally throwing his arms up over his head like “l did it!”.  Well I went to adjust his diaper because I thought I had gotten some wires caught in the diaper and I realized he had made a major poop.  I celebrated, changed his diaper again and weighed him one more time hoping he was less after expelling some of the poo, but nope, still weighed a lot.  They are sedating him a little bit more in an attempt to ensure he doesn’t extibate himself again so he was not very active tonight.  I guess that’s about it for tonight. 

Greyson was looking much better today.  He is still edemic but doing better.  All of his numbers came back fine and since he is looking better we are not worrying to much.  They are also giving him two doses of Lasic (a dieretic) which should help him get rid of the excess fluid he has built up.

His weight tonight was 2 pounds 15 ounces.  While it sounds weird we are hoping he goes down a little or stays the same for tomorrow since some of this weight is definately not real weight but due to the fluid retention.  Overal though he is definately putting some meat on his bones.  They have increased his feeds yet again so he is now getting 8.5 ml an hour (seems like only yesterday we were hoping we would make it to 4.5 ml an hour (which was full feeds at the time). 

Tomorrow will probably be a big day as Greyson will have his first eye dr’s appointment.  Since he is a special little guy he will just stay where he is and let the eye dr. come to him.  The dr. will be checking the blood vessel development in his eyes.  By watching this closely as they develop they are able to intervene if there is a problem to prevent blindness.  If they don’t stay on top of it the and something goes wrong, once the problems cause blindness there is nothing they can do.  Complete blindness is very rare these days as they know a lot more about treating preemies than they used to.

Other than that it was a pretty normal day.  Greyson wasn’t all that active so we pretty much just did his care and left him alone to rest. 

As stated yesterday, Greyson is gaining to much weight.  This means he is retaining fluid.  He was definately looking a bit puffy today, we are uncertain as to why.  He is still peeing and pooping (while Stacy was changing his diaper today he shot poop out, graphic I know but kind of funny!) so that is good but we are hoping we can identify what is going on.  They will check his lites tonight and see how that is doing.  He is on extra sodium because his numbers have been a little on the low side.  We’ll see how they look tonight and if that helps explain things.  The nurse tonight also started weighing his diapers again so we can see how much he is putting out in regards to how much he is taking in.  This coupled with watching his blood pressure closely should help us “keep an eye” on things till it goes away or we find a reason for what is going on.

As for the lungs, they reduced his vent settings by two (yep Dr. Bob called it!).  Unfortunately his noon blood gas was bad so they went back up.  They ran another gas at 6PM and it was good again but they will wait to see what his midnight gas is before they make any more changes.  So pray for his lungs as always and for whatever is going on with this fluid bulid up.

Well it’s 1:14 AM and we just got back from the hospital.  Not to worry nothing bad.  They talked to Stacy about holding Greyson today when we got there (4pm) but she was hesitant (we both were) because of how he’s been doing lately.  Well after talking to a few nurses and the Dr. we finally decided it would be OK and talked about doing it tomorrow.  Well he had a bed change due tonight so we then started talking about how tonight might be good since he had to be disturbed to change out his isolete anyway and………yada yada yada Stacy held him starting at 8PM till midnight.  We had one little scare where they had to hand bag him while she was holding him but basically he did really well.  He seemed to sleep pretty soundly even amidst all the comotion going on around him (a new baby came in and they had to get that one situated, right after a baby who was breathing on their own crashed and had to be intubated)  This kept things hopping all around us but Greyson just slept soundly on all tucked in on his mom.  We just called and got his midnight blood gas (usually we have to wait till morning cause we are asleep!) and it was down to 54 (less than 70 is acceptable, 40’s are fantastic, 30’s and below is overventilated).  This could mean they can slowly begin the process of weening him again.  I don’t know that they will for sure, this is simply the Dr. Bob report.  Please keep in mind I’ve only been going to med school for just over 6 week.

I won’t report on his weight tonight, we’ll just say he gained to much.  How can that be you ask?  Well he should only gain about an ounce a day.  Today’s was more than that.  The nurse said not to be to concerned but  he is probably retaining a bit of fluid.  They will keep an eye on this (they keep an eye on everything so we are not concerned about that!).  Basically he needs to pick up his peeing a little and everything should be fine.  Well it’s late and I’m going to bed.

Well Tuesday was not the best day.  As I said Greyson was requiring extra oxygen and they were unsure the cause.  Turns out he had a partially collapsed lung.  During his noon handling he also dsatted pretty bad requiring hand bagging twice as well as some chest compressions to get his heart rate to come back up.   Last night they gave him a blood transfusion and started him on some asthma type inhalers as well as some chest therapy.

 Through it all he was a trooper though and today he is doing better.  This has cancelled the orders to reduce the vent settings every 12 hours so at this point he is not on his way to being weened off the ventilator.  He continues to grow and gain weight, both things which should help him outgrow the lung issues he has been having lately.

ell today is a new day and a better day at that.  Greyson received another blood transfusion last night as well as got started on a couple asthma type inhaler medicines.  This with the chest therapy (mini massager used over his lung) all seems to be helping.  His oxygen requirements were lower today and they say they can hear better breath sounds from his right lung (the one that had the partial collapse).  There is a lot of junk in both his lungs (read secretions) but with the therapies and a lot of suctioning it seems to be getting better.  He had a couple episodes of dsatting coupled with brady’s (oxygenation going way low followed by a significant drop in heart rate) but nothing like yesterday and all was made better simply by giving him more oxygen for awhile. 

Today while Stacy was cleaning his face she touched the q-tip to his tongue and he made the funniest face.  His eyes scrunched down (not his mad face, but kinda shocked) and he closed his mouth in a funny way.  As she cleaned the goobers (medical term) from his face it was almost like he was playing with her.  This coupled with his wide open eyes made for a great time of interaction in the midst of all his episodes.

His latest “trick” is to hold his breath, usually when he is stretching or moving about.  This is something that we do naturally when we move around but with Greyson being hooked up to a ventilator it makes an alarm go off everytime he does it.  The alarm is for the vent and asks “tube obstructed?”.  As soon as he stops holding his breath the alarm goes away.  It’s amazing to me how many alarms the little guy can set off at one time.  Yesterday he managed to have four alarms going off all at once.  One for low oxygenation, one for obstructed tube, one for being cold, and while all this was going on he ran out of food which set of an alarm for that.  It’s a crazy world he lives in sometimes.

Well as always there is rarely a dull moment with Greyson.  We’ll see what tomorrow holds!

Greyson continues to grow and put on weight.  He is now 2 pounds and 5 ounces!  What a difference that makes.  He is filling out and actually has some meat on his bones.  Today he is requiring quite a bit of extra oxygen so they are running tests to try to determine what is going on.  We will see what the rest of the day holds for us. 

Well today we got back on the horse so to speak.  I got to hold Greyson again.  This time went MUCH MUCH better.  His blood gasses were good last night and at noon and I was able to hold him for almost four hours.  He was a bit squirmy at times, but we really enjoyed the time together.  Stacy liked it to because she was able to look at him and touch him a lot while I held him. 

We were blessed today to hear two great words while we were at the hospital.  The first came when the nurse was talking to another nurse (for the shift change).  She told the oncoming nurse that Greyson was doing really well, and this is how it should be for every baby in the NICU.  The second was when the Dr. made his rounds and talked with us.  He talked about the setbacks the first couple weeks but how Greyson was “thriving” now.  We love that word thriving!  As I said his blood gasses have been good and they have now instituted orders to lower his ventilator rate every 12 hours providing his blood gas is good after the change.  The Dr. said that there may be bumps in the road where he has to stay at a setting for a little while, but he expected Greyson to ween off the vent pretty quickly at this point.  Only Greyson and God know for sure but it was such a word of encouragment that this could happen fairly soon.  It has always felt like it was something that was not even discussed because it was so far in the future. 

PS–For those that are concerned, the nurse assured me Greyson didn’t mind the hairy chest at all!

Well here is a shot of the fam.  All together.   Not to much to report on today.  I was planning on holding Greyson when I got to the hospital today, but they called before we came in and told me his blood gas was not good last night and we should probably hold off.  They made a couple vent changes and his gasses have been much better for the rest of the day.  I might get to hold him on Monday, we’ll see how he’s doing.

He got a little cold so the Nurse put him in this little outfit.  It’s for a Premie but was way to big for him.  I thought he looked like a puppet the way his little arms where moving the fabric which was about an inch or two past where his hands stopped.  We stayed for 3 care times today which made for a long day but it was fun as he was very alert for two of the care times.  He continues to gain weight and is now 2 pounds 3 ounces, or 1010 grams.  Pretty amazing that he is now over 1000 grams and growing steadily. 

Well enjoy the pic and I’ll send one other picture from today.  Stacy will go see him tomorrow afternoon, unfortunately I can’t as I have to work (quite the bummer!).