Standby. Patient not ventilated

Dear Samuel,

Just a quick update tonight....

Another "milestone" today. You were switched over to "high flow". So, instead of the CPAP machine now you just have a "high flow" of oxygenated air. (Wikipedia definition: Humidified high flow nasal airway respiratory support is a method of delivering a high minute volume of respiratory gas via nasal cannula. The respiratory gas is heated to near body temperature and humidified, usually to saturation vapor pressure.) This is slightly different than the CPAP you were switched to yesterday, in the fact that it's less invasive (so to speak). You are around 25% for your O2 levels on the new high flow method tonight, but were as low as 21%! 

Weigh-in tonight had you at approx. 2 pounds 3 ounces (I say approximately because there may have been some rounding involved).  

When I was there tonight, I experienced a "first" with you. I was there for slightly longer than one hour and you had Zero Alarms. That has never happened for me during your lifetime! It was pretty cool. 

Otherwise, not a ton of news today.....And No News is Good News. 

Love, 

Mom and Dad

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

One down.....Plenty more to come

Dear Samuel,

Hard to believe, it's been one month.......

This has been one of the longest month of our lives, bud. It's also been one of the shortest. I can't believe that you have been here for a whole month. It feels like yesterday that we were heading to the hospital, meeting you for the first time, holding you for the first time...... 

I can't wait until the day when I get to look back at this blog and say, "It feels like yesterday that (insert favorite memory here)". 

Today has been a little up and down. When Mom was down to see you this morning, you were having a great morning. Your O2 levels were all the way down to 34% with no chin strap and your O2 saturation was at 99%! The picture from up there is actually how she found you this morning and the nurse didn't take your strap off......

She also gave you another bath again today, so hopefully you won't smell like a foot anymore (You don't really smell like a foot). 

It was a different story when I came down to see you tonight after work. Your nurse told me that you had two big ABD's during the afternoon that required the use of a "Neo Mask" (Just a mask that goes over your nose and mouth to give you Oxygen). When I got there your O2 levels were set to 54% Your belly looks to be a bit "distended" as there is a lot of air in your stomach from the CPAP machine. The only way to reduce this is to "vent" your stomach using your feeding tube. 

Tonight, you have had two more spells of ABDs that required stimulation (rubbing your back/tickling your toes) to help you to remember to breath but not the "Neo Mask". Your O2 levels are still around 50%. 

You are SO close to having your 2 pound party. Weigh-in tonight was at 1 pound 15.8 ounces. About as close to being 2 pounds as you can be. 

Hoping the overnight goes a little better than your afternoon. 

Happy 1st month buddy. Here's to many more! 

Love, 

Mom and Dad

Short and Sweet

Dear Samuel,

Today was an awesome day. Because it was so awesome, I'm really tired...so I'm going to make this somewhat short.

Your infection. Gone.
Disclaimer: For the most part, its gone. We are past the 60 hour mark of having a negative culture. They are still keeping you on antibiotics for another 7-10 days though just to make sure we completely got it.

Your breathing. Like a Champ.
You are still on the CPAP machine and doing really well. When we there tonight, you only had about 5 to 10 de-sats...which, compared to the other night is a complete 180. You WERE on 60% O2 though, which is up a bit but your RR (Respiration rate) is down to 20 (When you were on the vent this number was up around 40 to 50).

Blood Sugar. Stabilized.
They took you off of your insulin drip today, because your numbers were reading in the mid 100s (Tonight was around 130).

Hemoglobin. Well, not quite sure but I bet it's up.
You had another transfusion today, because your Hemoglobin had dropped to around 9.0. I have a feeling this may be helping with your O2 saturation levels as well.

If you have a good overnight, your Mom may get to hold you again. We are praying that you do.

See you bright and early buddy.

Love,
Mom and Dad

You must be this tall to ride......

Dear Samuel,

I get the feeling you are going to like roller coasters.

Yesterday, you had us frustrated, emotional, nervous, excited.......and on and on. Today was, as the song goes, "Easy like Sunday morning" (Okay, kind of cheesy, I know).

You are really impressing the doctors with how well you are tolerating the CPAP. It's been 36 hours since you had the tube taken out and so far you are showing no signs of having to re-intubate. When we were there tonight, your vent settings were at 46% O2 and 55 RR (Respiration Rate). The respiration rate is a bit high, but you need to start doing some of this breathing stuff on your own buddy.

They are going to weigh you again tonight or tomorrow morning, but at your last weigh in you were at 1 pound 11.9 ounces. Your mom wants you to be at 1 pound 13 ounces (Just remember, she gets what she wants....so I suggest being at that number).

One noteworthy thing is that you are being started on an additional antibiotic because your vent tube tested positive for an infection. Now, it's not definitive if you have another infection for sure but the antibiotics you are on would not fight this new possible infection (Hope you followed all of that).

Blood sugar has been sort of settling down a bit (Upper 100's) and your insulin has been taken down to about a drop an hour.

So, if today was the "drop" on the roller coaster I hope we don't have a "climb" tomorrow. Let's stay on the fun part for a while.......

Love,
Mom and Dad

Patience

Dear Samuel,

They say that patience is a virtue......

We are a generation of "instant gratification". Movies and TV shows are OnDemand, answers to trivia questions are found instantly with our phones, 1-click ordering on Amazon. I think because your Mom and I have been conditioned to this in our everyday lives makes this seem all the more difficult. We just want this to be done. For you to be healthy. For you to come home.

With that said, you have not ceased to amaze us with your incredible strength and will. It's that strength and will that keep us going; day by day, hour by hour, minute by minute.

Today was a a "milestone" day. Your vent tube was extubated and replaced with a CPAP machine. Just so you know, your tube was gross.....It's no wonder there was some sort of bacteria growing in there. It was a weird shade of yellow when they pulled it out. This was also the first time your mom got to see you without any vent in your mouth (and I snapped a picture):

They did try using the lowest level CPAP machine (only gives off oxygen) but you did not react well to it and had a lot of de-sats. They switched you over to a CPAP machine that gives you both oxygen and respirations, so that it helps you to remember to take breaths on your own. With this machine, you seem to be doing "OK". We are still seeing some de-sats, but your mom and I think that there weren't more tonight than there was last night. Either way, the staff tells us that it's a win just to have the tube out! There is still a chance that you will need the tube to be put back (a different one obviously) but there will be a lot of variables that go into this decision (blood gases, skin color, etc.).

Blood Sugar has been down today/tonight as well (Last reading tonight was ~90). Your mom and I think this is related to getting your vent tube out and whatever bacteria/infection was in there (But we aren't doctors...we only play ones on TV). We're hopeful this will be the cure to chasing your blood sugar numbers.

Patience. A lesson you are teaching us. One of many, I'm sure, you will teach us. Hopefully, we can repay the favor. 

Stay strong little one. 

Love, 

Mom and Dad

Honeymooner's Once Again

Dear Samuel,

Just when we thought the Honeymoon was over......

Today, was a much better day than yesterday bud. First, your blood culture that was taken on Wednesday morning still has not grown anything. Meaning that your infection MAY be gone.

During rounds today Dr. Gozi (Not her actual name..I think its spelled Ngozi) decided to take your vent settings down to help prep you for possible extubation (A $10 word) tomorrow. Now, this will hopefully serve two purposes; 1) The culture on your vent tube came back positive for bacteria which can mean a possible infection in your lungs or simply just bacteria in your tube; and 2) TO GET THE TUBE OUT!! They would switch you over to a CPAP machine, obviously, but this would be a huge step forward!

We are still chasing blood sugar levels but were able to stabilize them tonight a bit. The last reading we had was around 180 tonight when we were there.

They had to switch your IV from your foot into your forearm and now you have a "board" on your arm. This makes your arm semi-immobile but you are dealing with it well.

One thing your mom and I got to witness today was tummy time. You LOVE being on your tummy (At least your O2 loves you being on your tummy). We also saw you push with your legs today and raise your butt in the air, almost like you were trying to do a push up. I think you are A LOT stronger than what you lead us to believe.

Your left eye is also pretty much all the way open (You can see his right eye in the picture above).

Hoping you have a good night pal so that we can maybe take your tube out tomorrow.

To be continued........

Love,
Mom and Dad