Twice as Nice

Dear Samuel,

It's official.

You now weigh twice as much as you did when you were born....2 pounds 13 ounces.

Otherwise, there hasn't been a whole lot of other changes. Feedings have been bumped up to 25 ccs every 3 hours. This is almost 1 ounce (Approx. 30 ccs in 1 ounce according to momma). Probably why you have been packing on the pounds!

Oxygen is still set at 1 Liter per hour, and around 30% O2.

On Tuesday we got to meet with the Speech Therapist. She will be working with you to help with sucking so that you can eventually start eating without the use of your feeding tube!

Now we just need to keep working on getting bigger!

Love,
Mom and Dad

Movin' on up.....

Dear Samuel,

You keep hitting milestones.....

Yesterday, you were moved into a new home! While it's still an isolate and has the ability to regulate the temperature it does not produce any humidity like your other one did. Why is this important? This is important because it's a step towards regulating your own body temperature. In terms of looks, it's almost the same as your other "home" but with a few subtle differences.

Your weigh-in last night had you at 2 pounds 11.2 ounces! You are also growing longer too.....On Sunday you were measured at 15.5 inches; up 1 inch from last week! Your Mom said to mention that your head circumference is up 1 cm from last week too. 

Oxygen needs were a bit higher today (1 liter per hour at 30% O2) but overall you have been lower (around 0.5 liters per hour at 21%-25% O2). Your feedings have been bumped up to 23 ccs per feeding. 

Otherwise, not much change over the past two days. You just need to keep growing! Before you know it, we will be heading home....keep it going bud. 

Love,

Mom and Dad

Milestone Weekend

Dear Samuel,

What a great weekend!

We reached another milestone over the weekend....Your feeding tube was moved from your mouth to an "NG" tube down your nose. This, is supposed to be, much more comfortable for you. If it were me, and I had to choose I would definitely choose nose over mouth. Check it out:

Your oxygen needs have been dropping too. You were down to 0.5 liters of wall air and were sitting at 21% (or "Room Air" aka what the rest of us are breathing right now) for most of the day yesterday. The doctors and nurses were toying with the idea of doing a test with taking you off of oxygen to see how you would do. We never got to that point, but still an encouraging sign that they would even consider it! You still struggle with feedings a bit, so they have to bump you up to 1 liter of wall air around 25%-30% O2. 

Now that your NG tube is in, You and Momma have started practicing with nursing and also taking a nook. Today was the first practice and you did really well! 

You dropped about 30 grams today (Sunday) but your weight is still doing really well. You're at 2 pounds 9 ounces. 

Overall, everyone in the NICU is amazed at how far you have come and how well you are doing. You are ahead of schedule for A LOT of things (Most of them listed above) for your gestational age. Needless to say, you amaze us everyday too. Keep fighting buddy! 

Love, 

Mom and Dad

Opposite Day and Misadventures in Mini Hot Tubs

Dear Samuel,

Each day throughout this journey, you continue to impress us.

Today was another good day. Your weight is now up to 2 pounds 9.6 ounces. It's actually the same as your weigh-in from Thursday night, but is up 40 grams from the last post. You keep heading in the right direction for weight....pretty soon you are going to be a chunker!

Your "high flow" oxygen was taken down to 1 Liter per hour (the lowest setting for this particular device) and are around 30% O2. The next step down from that would be what's called "wall air"; which essentially is just a lower flow of oxygenated air OR removing all ventilation/air altogether. If that were to be the case, it would be a HUGE milestone for us AND an earlier than expected one at that.

Momma gave you your first real bath on Thursday. She said you were wrapped in a towel and submerged into a "mini hot tub" (as I call it)....and each arm and leg were taken out separately to be washed. This process is called a swaddle bath and apparently you either REALLY liked it or REALLY didn't. Let's just say that your leg's and bottom had to get washed twice because there was some not so nice stuff ALL over the place, according to Mom.

Tonight when we came down to see you, you were backwards in your isolete. Maybe it was opposite day in the NICU or something, but it threw us for a loop.

I got to hold you for a little bit tonight, before they started your feeding. It was the perfect way to end my day.....

Love, 

Mom and Dad

Making Gains, 'Brah'......

Dear Samuel,

Not a whole lot of change over the past two days, save one:

Monday Weigh-In: 2 pounds 5.4 ounces

Tuesday Weigh-In: 2 pounds 6.8 ounces

Wednesday Weigh-In: 2 pounds 8.2 ounces

Making Gains! It's almost 3 ounces in 2 days! AND it's halfway to 3 pounds! 

Otherwise, not a lot has changed. You have learned how to pull your nose prongs out of your nose. You did it twice tonight, while we were there. 

Still on the high flow oxygen and at 25% to 30% O2. 

Keep making those gains little man...If you keep this pace up, we will get to move you to a crib and it won't take an Act of Congress to hold you! DISCLAIMER: It doesn't really take an "Act of Congress" to hold you but it does take some advanced planning. Your mom and I aren't used to not being able to hold our own children. 

Love, 

Mom and Dad

Channeling the Magic

Dear Samuel,

Well, our Wisconsin sports magic may have run out.....I think you may be channeling it back to yourself.

Two really good days. You are still on high flow oxygen at 2 Liters per hour and at 25%-32%. You have a fair amount of your apnea spells which lead to alarms/de sats but this is still "acting your age", as your nurses say.

Weigh-In last night had you at 2 pounds 5.7 ounces, up 40 grams from the night before. Saturday night you were up 30 grams from the previous night, as well. A trend the doctors want to see continue (20-30 grams per day).

On Sunday nights, they measure your length as well....You are up to 14.5 inches. Last week you were at 13.25 inches. Growing bigger each day.

One change of note is that you have been getting whats called Enfacare instead of Prolacta (These are fortifying agents added to the breastmilk). The Prolacta was overworking your kidneys, as it's chalk full (pun intended) of protein. Therefore, your doctors thought it would be wise to switch to the Enfacare which has a lower concentration of protein and calories.

You've started working with Occupational Therapy to help with muscle and bone development, as well as your head shaping. Essentially, it's a workout for premies.....A workout you WOULD have been getting inside mommy with all of the pushing and kicking you would do. We just have to simulate it now since you are here. So far, so good. 

Love,

Mom and Dad

P.S. I love that picture above where you are smiling. 

Go with the Flow

Dear Samuel,

Sorry for not posting last night....we didn't get home from the hospital until late.

Not much change though. You are still on the "high flow" oxygenated air.....the only change is that you have gone from 4 liters on Thursday down to 2 liters, today. Liters refers to the amount of air pushed through your house in 1 minute. So, the fact that you are down 2 liters in one day is pretty amazing.

The other piece of news was from last night. You have finally reached the 1,000 gram mark (1 kilogram)! You were actually 1010 grams. In pounds, this translates to 2 pounds 3.6 ounces! This was an increase of 30 grams from Thursday night. Your doctor wants to see you gaining anywhere from 20 to 30 grams per day; so when you hit 30, your mom and I were pretty excited.

Otherwise, not a lot to report. We got some skin to skin time this afternoon and have been getting plenty with mom over the past few weeks. Looking forward to your mom holding you tomorrow during the game...I'm thinking that will be the magic we need to swing the momentum to the Green and Gold.

Sleep tight little man.

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

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

Dilated Pupils

Dear Samuel,

Today you had your very first Eye exam. It only consisted of dilating your pupils to make sure all of the blood vessels in your eyes are growing properly. You passed with flying colors. Everything looks normal for your gestational age.

The rest of the day consisted of you recovering from said eye exam. As you can imagine, for such a little guy it takes a lot out of you! Because of this you had quite a few alarms (mostly de-sats, but some ABD's) today.

The GOOD news is that your O2 levels were all the way down to 23% tonight! And how much is room air, again???? That's right. 21%.

There is some talk about switching your vent machine and your nose prongs, as well. The new machine would only supply you with what's called "high flow". It would NOT give you breaths like your current vent but rather supply you with a high flow of oxygenated air. I know, it sounds kind of like the same thing but they are different.

Other than that, not much change today. Mom is going to give you another bath tomorrow.

Sleep tight little one.

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

Lightning Round

Dear Samuel,

Not a lot of change today (If this continues to be the case, I may skip a night or two).

Weigh-In you are back to 2 pounds 2 ounces!

You continue to have your "alarms" (de-sats), but have been MUCH better since you had your transfusion. That's what the staff seems to be chalking this all up to; is low hemoglobin and acting your age (somewhat typical in micro premies).

Al of the tests have come back "clean" so far from Friday morning. The 24 hour mark of the blood culture came back negative (and hopefully continues to come back negative), as well.

Overall, you've had a much better day today than Friday. Wish I could say the same about myself. Remember how Mom and Isaac were sick last weekend and I was healthy as a "horse". Yeah, that may have caught up to me....

Have another good night buddy.

Go Pack Go,
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.

Chin Strap. Optional.

Dear Samuel,

Another good day with no changes.

Mom got to hold you for 2 1/2 hours today. You didn't have your chin strap on the entire time! When I got there this afternoon, you didn't have it on either! Your O2 levels were turned up a bit higher (Around 48%-50%), because you didn't have it but I don't care....I'm sure it's not very comfy. 

Weigh-in tonight was a tad bit down. 1 pound 15.4 ounces (down .4 ounces). 

Our first care conference is tomorrow with your doctor. Hoping we will find out what our next steps are! 

See you tomorrow. 

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

Quick Update

Dear Samuel,

Another good day.....So, I'll make this short.

Your weight went down an ounce to 1 pound 13.6 ounces but you are getting longer. You're up to 13.25 inches long.

Mom got to come down in the morning and hold you for your feeding. I went back to work today, so I came down after Isaac went to bed. Tomorrow we have our first care conference with your doctor to talk about where we have been, where we are and where we need to go.

Your O2 levels were at 30%-40% all day. Hopefully we can keep bringing those numbers down (Magic Number is 21%).

You also got your Hep. B shot today, as you are 4 weeks old!!

Hopefully we can get these good times rolling....

Love,
Mom and Dad

More Good Days than Bad

Dear Samuel,

Not a lot of change today again.

The one thing that was notable was your weight. You rocketed right past the 1 pound 13 ounce mark and went all the way to 1 pound 14.6 ounces! This is the heaviest you have ever been! You were clearly excited about it when we were there today, so I took some shots:

Eyes wide open! This is probably the widest we've seen your eyes open so far.

And a little tired. 

Mom got to hold you again today for almost 2 hours. You had some hiccups that sounded kind of funny, so I grabbed a video of it! 

Keep it up pal. 

Love, 

Mom and Dad

The "Seinfeld" Post

Dear Samuel,

I want to pitch you an idea for a blog post...... It's a post about......Nothing.

One day you may get my attempt at REALLY subtle humor. I thought it was funny (If you have to ask, you may not have lived through the 90's). And If you think that's bad, wait until you meet Papa Steve. 

This post won't really be about "Nothing" (referenced above), but it will be short because there hasn't been a lot of change. 

For the most part, everything remains the same as yesterday. O2 levels have been between 30% - 40% all day. Only 1 Brady tonight so far and the usual de-sats and "re-sats" (I just made that up, we'll see if it sticks). 

Your weight did go back up to 810 grams today (1 pound 12.6 ounces)!!! 

I got to hold you again today and we both caught some Z's. 

Your mom and Isaac are still trying to fight whatever this virus is they have. Isaac was running a fever now tonight and has a lingering cough. Hopefully, we can all get healthy before the weekend is over. 

We did have a rather lengthy discussion about you tonight with Isaac too. He says that he is excited for you to come and live with us and will share his toys with you (He says that now....); even his beloved "Stephen" train. He said that he is excited to be a big brother (I may have been leading the witness a bit, but regardless it was cute). 

Get some sleep tonight buddy and get that weight up! 

Love, 

Mom and Dad

How do you spell Amoxicillin, again?

Dear Samuel,

Not much change today. I wish I could say the same for your Mom, Isaac and Schatze.

Mom woke up feeling even worse today (sore throat and congested). We cleared it with your doctors to have her take some Amoxicillin to try to help her get rid of this nasty cold. She asked me earlier today if she "looked as bad as she felt"......I didn't answer. Your brother Isaac is still fighting something too. He has more of a cough and runny nose. Schatze is just Schatze. She's sitting across the room from me and I can hear her stomach making all kinds of noises (The temp is going to drop this weekend). For now, I'm healthy as a horse (knock on wood). 

You had a really good night last night. Your nurse said that from 11:00 p.m. until 5:00 a.m. she was in your room twice because of de-sats. Today, however, you were a little naughty (as your nurses like to call it). Only 1 ABD but a lot of de-sats. Good news is that you recover on your own when you do de-sat. 

Tonight, when I came down to see you, your O2 was at 32%. 32%!!!! That's the lowest you have been in weeks! I'm pretty impressed, because I would think that with the RSV that you would require more O2. Guess you're just a little champ. 

Your weight was down 20 grams last night to 790 (1 pound 11.5 ounces). This is going to be our next milestone; getting your weight up. I threatened you with Hans and Frans before....don't think I won't do it......

See you tomorrow buddy! 

Love, 

Mom and Dad

Good Mojo

Dear Samuel,

Not much to report today. Mostly status quo.

I got to hold you again today and you seemed to tolerate it very well. I think you just wanted to watch the Badger's game with me. I got to hold you right when the game was heading to OT. We sent some good mojo their way, that's for sure. Can't help but think we'll have some come our way too.....

Mostly a good day today, only a few random ABDs and de-sats. Your O2 levels have been as low as 37% and as high as 50%. Being on your tummy is still your favorite....when the nurses put you on your side or back you like to ABD or de-sat, so your tummy it is. During one of your ABD/de-sat the nurses were able to suction some gunk out of your nose, and were impressed by how much "gunk" you had in there. I guess I would take that as a compliment, but I'm not real sure buddy?!!? 

Your weight went back up to 810 grams (1 pound 12.6 ounces). 

Happy New Year pal. Here's to a happy and healthy 2015! 

Love, 

Mom and Dad