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

The Honeymoon's Over

Dear Samuel,

They told us this would happen.......

2 steps forward, 1 step back. We didn't want to believe them but in the back of our minds we sort of knew it would come.

Luckily, it's nothing "serious" although it can get a little frustrating. The past few days now your O2 saturation drops for no apparent reason especially while laying on your back. I guess this is not an uncommon stage with Premies with the O2 sats dropping and their oxygen intake on their vent going up (You are up to 60% oxygen....when you were first born you were at 21%). While it's good to know this isn't uncommon, it still doesn't make it any easier when your alarms go off every few minutes......

As far as we know, your infection is still there as well. The blood culture that was done on Wednesday was "clean" today, but so was the one from Monday at 24 hours of being cultured. It's once we hit the 48 hour mark is when it comes back positive. They have started treating this infection more aggressively by upping your antibiotics.

We still are chasing your blood sugars all over the map. Tonight's reading was 237 (They want it to be around 100). They have upped your insulin again to try and regulate it.

There was some GOOD to today though....

You did open your left eye just a bit today. It's about halfway "unfused". My guess is that you will have it fully open tomorrow morning when we come and see you. We can't wait to see both of them open!

We are all in for a long haul buddy.....but I think we have a pretty good thing going. You keep fighting and so will we.

See you tomorrow pal.

Love,
Mom and Dad

A Short Report.....

Dear Samuel,

Not a ton to report today.......

Your weight is up to 1 pound 10.5 ounces!

You are still battling with "de sating" (O2 dropping unexpectedly). During Rounds today, your doctor told us that they do NOT think it is your PDA opening up. So, for now, we can rule that out. I think we are still going with the assumption that this is being caused by the infection.

Speaking of your infection, they took a blood culture on Monday that came back today and was positive for an infection. They also drew one today to be cultured for 48 as well. You are still on antibiotics to help stave off said infection.

Blood Sugar has been better today.....not so many big swings (150-180). You are still on insulin but have held steady at a very low dose. Hoping we can get this under control, so there can be one less thing going into your IV.

Your IV was also switched to your other leg today, and you are now in a "board" so that you can't flex your ankle too much where your IV is. This is good and bad, as the foot that didn't have the IV is in is used for testing your blood sugar and is getting sort of raw.

Otherwise, the doctors are very impressed with the progress you are making. Let's kick this infection and start working on getting you porked out!

See you tomorrow buddy.

Love,
Mom and Dad

An "Eye Opener"

Dear Samuel,

Today, your mom and I saw you open your right eye for the first time. It was pretty cool, because we were there for the very first time you did it. You SHOULD have some big blue eyes, but it was a little difficult to tell. You keep working on the left one, but aren't quite there yet....hopefully tomorrow. I wish I would have grabbed my camera, but I was kind of caught up in the moment (I think you will understand).

Otherwise, it was kind of a rough day.

We are still fighting to keep your O2 saturation (sats) to stay within the acceptable range. The theory, before today, was that this was being caused by the infection you had/have. Now the hypothesis is that it may be your PDA in your heart that is open (More info here). Now don't worry, this is a very common thing seen in premies and a lot of the nurses and doctors were surprised this wasn't open right after you were born. There are a few options to treating this: 1) Do nothing and see if it closes on it's own again. 2) Treat with medicine (you actually had this after the first few hours of being born). 3) Surgery (which would occur long down the road).

You are also still struggling with your blood sugar spiking. This morning when we were there your blood sugar was at 80 but when we saw you tonight it was up around 290. The working theory on this, is that the infection is still causing these spikes. However, they drew a blood culture yesterday and so far after 24 hours it came back negative......EXCEPT when they found the infection the culture came back negative after the first 24 hours and did not see it until 48 hours.

Overall, though you are still doing really well and we can't wait until you open that other eye!

One thing you do need to know is that there are A LOT of people who are thinking and praying for you buddy. To give you an idea, this blog now has over 11,000 page views in a little over a week.....That's nuts. It's really kind of overwhelming. Just know that you have a great family, great friends and a great community all rooting for you.

Sleep tight little man.

Love,
Mom and Dad

Up and Down

Dear Samuel,

Today was a bit of a struggle. Not bad, just a bit.

You are fighting off an infection in your blood stream (They can't tell us exactly WHAT this infection is, just that it is one) that is messing with your Blood Sugar and O2 sats. They feel that this infection is what was causing your blood sugar to spike from high to low.  You were started on antibiotics every 18 hours

For now, it sounds like your blood sugar has leveled off and you are no longer on insulin. Which is great, but you have been struggling with your O2 sats, as they will now drop unexpectedly from your optimal range (88-94%). However, when it does drop you are able to recover quickly which is a good sign.

This morning was busy. It was decided that your "Central Lines" needed to come out and it was OK that they came out because you got up to "Full Feeds" today (9 ccs of calorie fortified breast milk every 3 hours). First, they drew some blood for a culture to check the infection, as well as a fungal culture. Then, they placed a peripheral IV in your leg to take the place of the Central Lines that were in your belly button. Next, they removed the Central Lines from your belly. So, two fewer tubes but one more went in.

During all of this commotion you were a champ. Your sats only dropped once when you were getting poked and prodded. I think it was because you got to hold on to mommas hand during the whole thing.....but I might be biased.

Get some rest tonight buddy and fight off that infection.

Love,
Mom and Dad

In a Holding Pattern (Pun Intended)

Dear Samuel,

Today was one of those "once/twice in a lifetime" kind of days. Today was the day your Momma got to hold you for the first time. It took 4 nurses to take you out of your incubator and get you over to momma, but I think it was well worth it. I was lucky enough to have my camera ready to capture some of these moments:

You also got to experience your very first Packer's game (With No sound....thank the Lord). Unfortunately, I shouldn't have mentioned anything about a "streak" in a previous post. So, I'll take this one....my bad. 

After a few minutes on momma's chest I think you were all snuggled up and fell asleep for about 30 minutes.

They finally got to the bottom of why your Blood Sugar has been spiking. The did a blood culture on Friday and finally this morning were able to tell that you have some sort of infection in your blood stream so you were started on antibiotics immediately. Hopefully, that will fix this problem we've been having.

You continue to have really gross looking diapers (which is a good thing, because it means you are getting rid of all of that bilirubin).

Your feedings were upped again to 8 ccs every 3 hours. Our goal is to get you to 10 to 12 ccs every 3 hours. If you can get there, we may not have to do the PICC line (which would be awesome).

Hopefully, we will get a chance to give you a bath tonight....That's where we are heading right now!

See you soon.

Love,
Mom and Dad

Rolling Along

Dear Samuel,

Another good day today buddy.

This morning you had a respiratory test where they removed the ventilator to see how you could handle breathing on your own. You made it about a minute and a half before you got too tired to breath on your own. It was sort of expected that you wouldn't "pass" this test yet, but we need to start prepping you for life without the vent. They are going to do this "test" every few days from here on out.

You had another head scan today that you passed with flying colors. This lifts the IHV protocol (keeping your head still and your body "midline") that helped prevent any brain bleeds.  Not that anyone is going to jostle you around now, but there isn't as much fear about causing any damage to your brain.

We are also still chasing your blood sugar as it keeps spiking in opposite directions (high to low). As of tonight, you were at 292 (which is in the acceptable range). They are working on finding the right mix of nutrients and insulin to keep your blood sugar in a good place.

Your feedings were upped to 7 ccs of breast milk today as well.

We aren't trying to get our hopes up, but they did tell us that we might be able to actually hold you tomorrow. I can't begin to tell you how happy this will make your momma (and me, of course). If you are having a good day and your vitals are still good, we should get to hold you! I'm bringing my camera with tomorrow just in case so we can capture some shots.

Sleep well tonight pal, big day tomorrow.

Love,
Mom and Dad

P.S. Since you were born both the Packers and Badgers (Mens Bball) are undefeated. Let's keep that streak going......

The Blood Sugar Chase

Dear Samuel,

Today was another good day......Momma and I came down and did a little photo shoot for you (I'll post another page after I edit them) but for now, here is one unedited.

The only thing that the nursing staff has been fighting with for the last 24 hours was your Blood Sugar. It has been fluctuating from low to high and back again. Finally, this morning they slowed down the game of giving you insulin and then switching back to sugar water and it seemed to stabilize your blood sugar (Around 150 is where they want you to be....you were spiking at 300 and dropping all the way down to 50). 

Your bilirubin was up again today, so they brought back the "bili" light (This time your eye covers had sunglasses on them). Hopefully, this will be one of the last times we have to have the Bili light because you had 2 more BM's and that will help get rid of all that bilirubin. 

They also upped your food intake today as well to 6 cc's every 3 hours. Now we just need you to start getting bigger and stronger....We need to PUMP...you UP! 

Also had one more blood transfusion tonight because of all of the blood draws they have been doing. Your hemoglobin was around 11 (which is about twice as high as momma's right now). All in all the transfusion went well. 

Overall the doctors are amazed at the progress you keep making. Keep it rolling buddy! 

Love, 

Mom and Dad