O2? No, thanks.

Dear Samuel,

It seems like all of your "milestone" days come on the weekends. Which, don't get me wrong, works out best for your mom and I.

Today, yet another milestone (So far...I don't want to get ahead of ourselves but we are feeling confident). The medical staff decided it was a good day to give you a trial of removing your oxygen cannula. As of 10:30 a.m. this morning, you have been handling all of your breathing on your own!

You've also been taking more and more feedings by mouth. Overnight, you took 2 "Full Feedings" by bottle and today you nursed with mom and took about 31 ccs (39 cc is a "full" feed now). I also got to give you a bottle at your 5:30 feeding and you took about 29 ccs by bottle for me.

We are now halfway to 5 pounds too; 4 pounds 8 ounces!

Reality has sort of set in for your mom and I. It finally feels "real" that you will be coming home soon.....and I don't think we are ready. Well, we are ready, but you know what I mean.

Another big weekend for you buddy....if you keep up the trend of having big weekends maybe we will be talking about taking you home next weekend??? At this rate, I can't say for sure that we WON'T be talking about it.

Love,
Mom and Dad

Blowin' the lid off.....

Dear Samuel,

Another weekend. Another milestone.

We walked into your room today and found quite the surprise:

I can't even BEGIN to tell you how BIG of a milestone this is, buddy. Every time your mom and I come to see you now, we can just pick you up....Instead of having to open your isolate. Now, before we get too excited, there is a chance that you may not handle being in a crib. If you are unable to regulate your body temp., we will have to put you back in your isolate. 

Yet again, you have forced the doctors hand with this. Normally, they don't like to move babies out of their isolates until they are around 1800 grams (Around 4 pounds) or at LEAST 1500 grams. Last night, you were at 1485 grams (3 pounds 4.4 ounces) and were "hot" in your isolate. They had no choice but to move you out of that and into your crib. Needless to say, you keep amazing all of us. 

You are now up to 28 ccs per feeding. Now that you are in a crib the meds and supplements you get with your feedings are no longer "weight-adjusted" (The dosage of the meds/supplements were adjusted based on your size). The plan now is to allow you to out-grow the dosage meaning that your body will start producing these things on it's own (sodium, caffeine and aldactazide). 

Your O2 needs have been about the same. Today you were right around 25% at 1 Liter. 

At this pace with all of these milestones, we will be home in a few weeks! (Probably not, but it would be cool!)

Love, 

Mom and Dad

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

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