Wide Eyed. Bushy Tailed. Oh, and a HUGE day!

Dear Samuel,

Wow, what a BIG day!

This morning, respiratory therapy wanted to test you without having to give you breaths (Respiration Rate). You did really well, although you still had some of your apeanic episodes (Your Mom and I sort of expected a whole lot wouldn't change if they took you off of the respiration they were giving you).

Then this afternoon, you were switched over to CPAP (Continuous positive airway pressure).  So, your Mom and I were wrong about what you were on before..we thought it was CPAP but in reality it was Nasal intermittent positive pressure ventilation (or NIPPV). In laymans terms, NIPPV gives your breaths, where CPAP does not. Got it? Good. 

This, in itself, is a HUGE milestone buddy. 

You are no longer having the machine doing any of the "breathing" for you. You are receiving some pressure though, to help keep your lungs inflated in the event of apnea. Regardless, I think it's awesome. Another note; you haven't had your chin strap on since 11 p.m. last night (And now that you are off of the NIPPV, I don't think you should be needing it anymore). 

The other BIG news from today:

RSV is GONE!

You were tested for RSV today, and the culture came back negative! You are no longer "quarantined" (The nurses has to gown up every time they came into your room). 

Another thing we are monitoring now is your head shape. Because you spend a lot of time on your tummy, your head is on one side or the other. Because of this, premies can develop what the nurses call "Toaster head". The goal is to try avoid this, by putting you on your back and today you spent a lot of time on your back. 

When I was there tonight, I caught you on video being wided eyed and bushy tailed. Check it out: 

Discussing with your nurse tonight, she said to expect a lot of big changes/strides in the coming weeks. I really hope she's right bud. 

Love, 
Mom and Dad

Rolling Along

Dear Samuel,

Another good day....

Not a ton to report today, which are days that we like.

Your O2 levels were trending down again today (25% when Mom was there). Your Pip levels were also down to 22 (The intensity of how much oxygen/air is pumped into your lung). Also, your Respiration rate was moved 25 RR. You still had a number of alarms today, but you are trending in the right direction to start breathing on your own. Tonight, respiratory therapy came and did essentially a NediPot in your nose and got a bunch of "goobers" (Yes, that's a medical term.....Okay, maybe not) and since then you haven't had any ABDs; only a few de-sats.

The urinalysis came back today as well and it was determined that the level of bacteria was too low to treat.

Other than that, not a busy day for you. We are thrilled with how well you are handling the RSV and starting to breath more and more on your own without the vent.

Sleep well Sam.

Love,
Mom and Dad

Superstitions....Confirmed.

Dear Samuel,

I'm beginning to think you may have some sort of supernatural effect on Wisconsin sports teams while being held by your Mom or I.

Exhibit A) Wisconsin Badgers. News Years Day. Outback Bowl. We didn't get to the hospital until late in the game and the Badgers were actually losing at that point. Well, once I was able to hold you the Badgers tied the game up and forced OT.....You know the rest.

Exhibit B) Green Bay Packers. Today. We didn't get to the hospital until halfway through the third quarter. Down most of the second half, Mom started holding you, and it all turned around. (It's too bad we didn't stay for the Badger game tonight, they could have used our help.) We will for sure be there next Sunday though, we have another game to win.

GameTime for Sammy

Enough about my theory....

Today was another good day. 

Your alarms were far less today. The blood culture they drew on Friday came back negative at the 48 hours mark (they'll culture it for 5 days total). Also, your O2 needs were significantly less (or maybe it just seems like it, because it's lower than 30) than yesterday. When we were there today, you were set at 27% (And remember, "Room Air" is 21% aka the air the rest of us are breathing right now). Tonight, when I called down, you were set to 25%! 

Weigh-In today was even; you are still at 2 pounds 2 ounces. 

Your eyelids were getting heavy....

Your nurse today mentioned how much more comfortable you looked today compared to yesterday. I'm hoping that means that we are "Out of the Woods" with the RSV, especially with your O2 needs being lower.

Here's to another good night. 

Love, 

Mom and Dad

Party Time! (Excellent)

Dear Samuel,

Two! Pounds!

Unfortunately, the rest of the day wasn't so exciting.......

In the past few days you have had an increasing amount of de-sats. They chalked this up to the RSV at first, but now they aren't so sure. Today, the doctor ordered a blood transfusion, as your hemoglobin was low on your blood gas. They also drew some more blood for a culture to see if there may be another infection. It's not the fact that they think anything is wrong, but they just want to make sure they aren't missing something by believing the RSV is the cause of your issues. 

So, you have another IV in your arm again, but at the moment you don't have anything going through it. Just a precaution. 

You also have a little catheter in to try and get a urine sample. They want to see if there is any bacteria in your urine. Of course, you keep spoiling any sample because you happen to do a certain something else (It involves the number 2). So, as of yet, they have not been able to get a reading on this. 

When I was down to see you tonight, the nurse told me that all of the "initial" tests came back clean. The number they use to see inflammation/infection was low (which is good). 

Your O2 levels were around 30% for most of the day, but went as high as 40%. I'm hoping they won't have to take that level up because of all of the de-sats. The good thing is, that you seem to do really well at 30%....when you remember to breath. 

So, I guess all things considered it wasn't THAT bad of a day. One cool thing was that you were able to suck on a pacifier today. Momma gave you one today when you were getting your IV put in. This will come in handy later on ;) 

Hoping you can get some sleep tonight, buddy! 

Love, 

Mom and Dad

A Conference of Caring

Dear Samuel,

Not much change again today.

We had your first ever Care Conference today with your doctor. Here is the Reader's Digest version:

• You are doing awesome for being so little and having RSV. 
• Only about two things that the staff is paying attention to (Well not really, but two BIG things):
• Weight - You need to get bigger!! The goal is about 20 to 30 grams a day. The bigger you get, the more we can turn down the humidity and temperature in your isolette and put clothes on you finally! This way you can show us how well you can regulate your own body temperature, meaning you can be switched over to a crib; meaning we can hold you whenever we want when we are in the NICU
• Respiration - The goal is to wean you off of your vent that gives you respirations (There's a highly technical term for this that is escaping me right now) and eventually move you to a different contraption that would give you JUST O2. After that, we want to wean you off of the oxygen and have you do this whole breathing thing on your own. Once that happens in conjunction with your weight we can get you in a crib and ultimately take you home (There's obviously a lot more to it than that before we can take you home, but I said it's the Reader's Digest version). 

Your O2 settings were down again today! This was the first time since you were born that you were in the 20%'s....You were set as low as 27% today, and were sitting around 30% for most of the day/night. We are moving in the right direction, pal. 

As of this post, your weigh-in hasn't happened. Hoping we will be pleasantly surprised tomorrow and can have your 2 pound party. 

I'm sure I may have forgotten something from the care conference, but your Mom will remind me and I can edit the post. That's why we keep her around, she lets us know when we forget to do something ;) 

Love,

Mom and Dad

P.S. - Seems you are becoming quite the escape artist lately. Today's picture shows how momma found you when she came to see you today. You are doing really well without the chin strap when you are on your tummy and sides, but when you are on your back you tend to let your mother hang open. As they keep weaning down the pressure on your cpap you should be able to wear your strap less and less.

1 Step Back....

Dear Samuel,

2 steps forward. 1 step back.

Today, we may have found the cause for the recent ABD's. Since none of the tests came back positive for anything, the nurses decided to test you for RSV (RSV Info). The test came back positive. They didn't think you had this due to the lack of "secretions" from your lungs but unfortunately you do have it.

The working theory is that you have had this since Sunday or Monday, which would explain the ABDs you have had this week. The good news is that you seem to be tolerating this very well, as your oxygen needs have not really changed (You were at or around 50% O2 when we were there today). Having said that; our nurse did tell us that it may get worse before it gets better and that it peaks around 7 days (We are on day 3).

So, while this is not ideal it IS at least an explanation to all of the ABD's and hopefully you will be able to kick this sooner than what the nurses expect.

Your weight was down slightly today to 1 pound 11.9 ounces. Your weight is now "on the radar" for the doctors. Not a concern yet, but you need to start gaining some weight bud. But for now, we need to focus on kicking this RSV.

Get better little one. Sleep well.

Love,
Mom and Dad