Don't Blink

Dear Samuel, 

We blinked.At least that's what it felt like. All of a sudden the calendar says December 6th and you've hit another milestone. 1 year. 

On this day last year the thought of having a 1st birthday party seemed almost impossible. Your mom and I remember it like it was yesterday.....like I said, we blinked. It's hard not to think about all of our friends in the NICU unit at Gundersen. Without them, and their wonderful care, who knows where we would be today. 

You've met, and most often exceeded all expectations that the doctors set for you. We couldn't be more proud.

What an amazing journey it's been to this point little man. You've taught us so much about ourselves and our little family over this past year and I can't wait to see what you have in store for us next. For now, I'll try to remember to not blink....because tomorrow I'm going to wake up and you'll be graduating from high school. So, let's enjoy today and be thankful for all of God's blessings. 

Happy Birthday little one.

Love,
A Proud Mom and Dad

Breaking the Mold

Dear Samuel,

Today we had your 5 month doctor's appointment.....Has it really been 5 months??

The overarching theme from the appointment was the title of this blog "Breaking the Mold". Essentially, our doctor (who, by the way, see every baby that comes out of the NICU) told us/you that you are Breaking the Mold when it comes to premies that were born this small. Talk about proud parent moments!

Your doctor thought it would be fun to put your growth chart up against babies that were born at "full term" to see how you compared. While you are still in the 0 percentile, the way you are trending is what is most impressive. Your growth for all categories (head circumference, length and weight) are doing the hockey stick on the graphs. Long story, short.....if you continue to trend the way you are you will be on the full term baby growth chart when you around 1 year old (approximately). Which, in itself, is incredibly impressive (especially since you are really only being breastfeed and mom forgets to supplement with the Enfacare).

Once again, you have defied the odds. Beat the impossible. Broken the Mold.

You are now up to 8 pounds and 8.2 ounces (8.5 pounds). Based on that weight and your previous weight, you are gaining 34 grams per day. The goal was 20-30. #BooYa

What an incredible journey we have been on......We're ready for the next chapter if you are.

Love,
Mom and Dad

Due Date

Dear Samuel, 

Today, March 23, 2015, was your original due date. It seems crazy to think that today was the day we should have met you for the first time. That today was that day. What's weird is that the past 3 months have been kind of a blur and all too real at the same time. It just goes to show that things in life don't always work out as you plan....that someone else is in control....and even if that plan isn't what we wanted or didn't work out, in the end it's God's plan. And His plan is perfect. 

Look at how much you have grown in the past 3 months. Your mom and I have had the privilege of getting a "sneak peak", as it were. In reality, December 6, 2014, is your birthday; but in theory, today is that day. 

Photo by Kevin Schultz. Thanks bud. 

We are so happy to have you home. It feels like we have added hours in our days now that we aren't driving back and forth to the hospital. Did you know there are 24 hours in one day? Before, it only felt like 18 or so. Although, I think you got some of those hours messed up. Sleepy time should be from the hours of 8:00 p.m. until 6:00 a.m. and not 6:00 a.m. to 8:00 p.m. They must have forgot to tell you that in the NICU.

Other than not sleeping very well, life at home has been great. You are handling your brother's random outbursts of Thomas/Frozen songs well. He still hasn't grasped the concept of inside voices yet.

Overall, life has returned to a state of "normalcy" and I can't tell you how happy we are to have some. Even though we still have a long road ahead of us, I feel the worst of our journey is over. We can't wait to start the next leg of the journey that is life with you.

Happy Birthday, well sort of.

Love,
Mom and Dad

Home

Dear Samuel,

Today, you came home. Of course, I made a video:

Love, 

Mom and Dad

Testing...1....2

Dear Samuel,

What a difference a few days makes.....

Sorry that it's been a few days but we've had a lot going on! Your mom and I have been working on getting things ready for you to come HOME! Ever since reality has set in, we have been scrambling to get things ready at home. I think we are in a good place now but it's been a busy few days trying to get our live in order.

Last Friday, you were taken off of oxygen and have not looked back. I think it's safe to say that we shouldn't be needing it any longer! Then last night we removed your NG tube.

Your medical team thought it would be a good idea for mom to spend the night with you to help see if feedings would become easier with one person, instead of multiple nurses (And to prep for home). So she spent the night with you last night and you did pretty well (Mom is pretty tired today though). You also had a "hearing test" last night and passed with flying colors.

During the day today was another busy one! First, we had your "workout" with the Occupational Therapist. According to her, you are in the 50th percentile of all babies (not just premies) for muscle tone/movement/etc. (I'm not exactly sure how to explain it...I was just excited).

Next, we had your Car Seat Test where you sat in your car seat for an hour and a half to see if you had any de-sats. While you did have a few de-sats, they weren't bad enough for a failing grade (You must get that from me and not your mom.....You get the passing with flying colors from her).

Then you had your "procedure", for lack of a better term, which wiped you out for the rest of the day. You did really well during and after......you're one tough little guy.

Tomorrow, is the last "test day". You have an eye exam scheduled.

Pretty much, if that goes well we will be DISCHARGING on Friday. Yes, we will be coming HOME! We are beyond excited...and nervous....and anxious....and a lot of other emotions. There is so much more to say about this whole thing coming to a close, but we will save it for other posts. Hopefully my next post will have our whole family under one roof.

Love,
Mom and Dad

Reality setting in.....

Dear Samuel,

2 steps forward; 1 small step back.

Since coming off of O2 on Saturday, you had to go back on to a VERY small amount on Sunday afternoon. You have been off and on again throughout the week (mostly during feedings). However, when you are "on" O2, it's not the same as you were before. The O2 you were on up until Saturday was 1 liter of pressure but now you are all the way down to 0.02 liters of pressure. I believe one nurse said that you could actually blow air at you and you would get more O2 (which really isn't true but you get what we mean).

Feedings have been continuing to trend in the right direction. I believe the number that was thrown around today was that you are taking about 70% of your feedings by mouth. Tonight, when mom was down to see you, you took a "Full Feeding" while nursing. You've really had no learning curve whatsoever to taking feedings by mouth (Proving the doctors wrong, yet again).

Reality set in over the weekend for your mom and I, pal. On Sunday, your nurse told us that during rounds that your doctor started to talk about the possibility of you coming home. This weekend. Now, I don't think it's going to move that fast (because you are back on oxygen) but it still reinforced that we will be bringing home a baby. It's almost surreal; because we have gotten into our "new normal" routine and haven't really had time to get ready to bring a baby home! We figured we would have plenty of time to get ready! It was only the beginning of December......the Best laid plans, right?

Your mom had a cool "pay it forward" experience today too. I won't steal her thunder though, I'll let her explain:

Experienced a wonderful display of the good that is still present in the world. I am a part of a contest group on Fb, mainly for cloth diapers and baby items. A few weeks back a mommy noticed my profile pic and asked about Sammy. Last night I entered a contest for a baby carrier valued at $150 but lost. Woke up to find that the woman that won gifted it to me and bought one for another mommy with a sick infant, PLUS another woman sent money to the admin of the page to send me the newborn insert as well so that we can use it sooner. Needless to say I cried for a few minutes. I most definitely will find a way to pay it forward!!!!!

After all of the kindness shown to us the past few months, we plan on incorporating "Paying it Forward" into our lives as well. As parents, we hope that we can teach you how great it feels to Pay it Forward because let me tell you....We won't ever forget those who paid it forward for us. 

Love, 

Mom and Dad

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

The Best part of my day

Dear Samuel,

Somewhere between the hours of 5 p.m. and midnight, is the best part of my day. It's the time when your mom and I get to spend with you everyday. It's never for very long but we try to make the most of the time we have. There's just not enough hours in the day.......

For me, your hospital room has transformed from the time you were born until now. It's really weird to think about a place that we never wanted to be in, has almost become a place of solace and relaxation. Granted, it's still not home but since you have been progressing so well your room has become our home away from home. Last night, you and I feel asleep in the chair watching TV. No Alarms. No Nurses. Just you and me. Just like home.

Trust me, we're ready for the real thing and you are almost ready too. Soon enough.

As of last night you are up to 4 pounds 6.4 ounces! Before you know it, you will be 5 pounds! 

Today, they have been playing with your O2 needs as well. You spent a good portion of the day on 0.5 liters instead of 1. You also spent some of the day on 21% O2.....Room air. 

The past few days you have been taking more and more feedings by mouth instead of your NG tube. Feedings are up to 37 ccs and you took 2 of those FULL feedings today by mouth. 

Oh, and you peed on me today.....You would think this was my first rodeo and that I would have figured this whole thing out by now. Not so much. 

Already looking forward to what tomorrow will bring when we come see you. I can already tell you, it'll be the best part of my day. 

Love you, 

Mom and Dad

Putting things in perspective

Dear Samuel,

What a great way to start a weekend!

Today, you are officially apart of the 4 pound club! Which still feels nuts to me....Think about how much 4 pounds is, really. Considering where we began though....4 pounds is humongous. Talk about a proud papa moment if there was one!

It was also a big day for me, personally, because today was the first day I was able to feed you by bottle. You were a champ buddy....You took 28 ccs of milk by bottle and the last 5 through your feeding tube. This is becoming a more common occurrence, as you have been taking "Full" feedings by mouth over the past couple of days. 

Otherwise, not a whole lot of change. You still need to become less reliant on your Oxygen but that will come with time. Most of the time, I don't think you need it OR that it's really helpful to you. I really think you do all of the heavy lifting and the O2 is just a placebo. 

I caught a video of you being wide awake today....something else you have been doing more of :) 

4 pounds. 

Hard to believe. 

Still so small, but when you put it in perspective, so huge. 

Your Mom and I couldn't be more proud buddy. Keep on fighting. 

Love, 

Mom and Dad

Live from Samuel's Room....It's Tuesday Night!

Dear Samuel,

So, consider this a first.....I am writing this to you while sitting in your room. I just realized I haven't ever done that; a "live" blog if you will. Right now you decided to hold your breath and de-sat making the nurse come in and check on you. Something you have come to be known for around here....you don't like to be left alone for too long (OR you get too comfy when you are on momma).

As of last night your weight is up to 3 pounds 10 ounces. Your weight gain has slowed some after being put back on Enfacare; so today your dietician wanted to put you back on HMF (Human Milk Fortifier....where you were when you were making some BIG gains). You are also up to 17 inches long.

How we found you when we arrived

Your O2 levels tonight are down to 22.2%. And we all know what the magic number is by now, right? Hint: The number you want in Blackjack (21%). Like I said earlier though, you are being a little stinker right now and getting to comfy on momma and alarming. Then you wake up and shoot up to 100% O2 saturation. 

From a few days ago; Eye Wide Open

You've taken a few more bottles since last Thursday when I last wrote but no more than 2 per day (1 every 12 hours). It's either a bottle or nursing with momma that counts, so the nurses have been working with us to coordinate feedings. 

Occupational and Speech Therapy have been working with you for the past month or so and the results have been fantastic. OT has done a lot with "positive touch"; meaning that you have been conditioned all of your short life that when someone else touches you, usually resulted in pain (i.e. blood draw, shot, etc.). We have learned about how to "read" your signs that you give us and if we are pushing you too hard, too fast. Speech Therapy has done wonders and is part of the reason why you are taking bottles now (Mostly, I think this is all you, but I may be biased).

Otherwise, not a lot of change in the past few days. You just need to keep growing bigger everyday and not get too comfy on momma when she is holding you. 

Okay, well it's almost time to leave so I'm going to come and talk to you for a little bit before we leave. Love you pal. 

Love, 

Mom and Dad

Proving MD's Wrong - Since 2014

Dear Samuel,

Sorry for not writing the past few days....life has been a little crazy.

Well, would you expect any less? You keep impressing not only the doctors and nurses but your Mom and I. This week has been another memorable one.

For your 2:00 a.m. feedings the past two mornings, you have taken them by BOTTLE. Yes, you read that right....BOTTLE. It seems like you have picked this whole eating thing up very quickly. I think a lot of it has to do with being moved into the crib. It's A LOT easier to get you in and out and because of that the nurses or Mom and I are able to hold you for your feedings. Now that we are able to hold you, we give you a nook to suck on during the feeding, a bottle, or you get Mom.

The other night when Mom was holding during your feeding, she let you try to latch on and you did for about 5 minutes! She said you got tuckered out pretty quick but it's just incredible that you were able to latch on and eat!

We had another care conference with your doctor/nurse practitioner last night and they could not be more impressed. It was a pretty short meeting because you are doing all the heavy lifting. They told us that every time they don't think you are ready for something, you do it and do it well. When you had your breathing tube removed, they thought you would need another one (Not so much)....When you had clothes put on for the first time and moved out of your heated isolate, they thought you would have to be put back (Nope).....When you weren't supposed to stay in your crib and be moved back to an enclosed isolate (Thank You, may I have another?).

Now, we only have a few more hurdles. I'm not going to lie though, they aren't going to be easy. It all boils down to two things: Oxygen and Feedings. The Feedings might not prove to be such a hill to climb, since you are beginning to take bottles and latching with Mom. Before you come home, you need to take 50% of your feedings by mouth for 2 days straight (if we choose to leave the NG tube in) OR you need to take 100% of your feedings by mouth for 2 full days if we want to discharge with no feeding tube. You also need to be completely OFF of oxygen before you can come home. This one may prove to be the challenging one.....but you know what? Your doctors think this will be difficult for you. You know what to do.

You keep making gains in the weight department too. As of tonight you are 3 pounds 7.7 ounces! You are now 16 1/2 inches too.

For the first time it feels like there is a light at the end of this long tunnel. It's been an incredible journey so far and will continue to be; I'm sure of it.

Love you pal,
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

As Big as Your Head!

Dear Samuel,

It's been a few days since I last wrote, so I thought I should send an update. Not much has changed since Monday so this might be short.

Your nook looks a little big....

Your weight is up to 3 pounds 1.6 ounces! Feedings have been bumped up to 27 ccs per feeding!

So far you have been regulating your body height very well and your isolete has been turned to 28 degrees Celsius (Pretty much room temp). We are hopeful you can be moved to a crib over the weekend (or sometime in the near future). It would be an absolute HUGE milestone, because it would mean that when we come to see you we can pick you up without having to take you out of your isolete. Needless to say, we are pretty anxious and excited for this to happen. 

Your O2 has still been at 1 Liter per hour and anywhere from 25% to 32% for the past few days. 

You had labs today and they found that your hemoglobin was down just a bit BUT they did not want to start a transfusion because you are now starting to produce your own red blood cells. Because of this, they won't start a transfusion because they want you to keep doing this on your own! 

Tonight, when we were there you really seemed to be interested in your pacifier as evidenced by the pictures above. Then when we put you back in your "home" you actually held your "paci" in your mouth! 

It was definitely tuckering you out....hope you fell asleep and stayed asleep....you need to make some more gains! 

Love, 

Mom and Dad

Milestone Monday (Better than Taco Tuesday)

Dear Samuel,

It's only Monday and you've had a huge week!

This morning, you made your Television debut. Check it out: Look Who's 8

Tonight, your Mom and I were there for weigh-in. We were hopeful you could get to 3 pounds because Sunday night you were 2 pounds 15.6 ounces. Well, not only did you get to 3 pounds, you rocketed all the way to 3 pounds 1.2 ounces!

So, two milestones in one day buddy....That's a pretty good Monday.

Love,
Mom and Dad

An Important Lesson

Dear Samuel,

2 months.

8 weeks.

56 days.

Any way you say it, it's the measure of time that we have been witness to such a wonderful miracle from God. Where did the time go?

Most days in life feel like they are routine, normal, mundane. Very rarely does it feel like our days have a profound impact or meaning on our lives. But, maybe we are just looking at it all wrong....maybe it's the mundane things in life that stick with us the most? The things we remember most about people.

That's yet another lesson you have taught us..... For these first 56 days, 8 weeks, 2 months to never take anything for granted. What may feel like normal to some is anything but for us. Something as simple as giving a bath, holding, or putting clothes on, many new parents get to do within the first few days. Your Mom and I have had to wait to do these things. Now, my point isn't "Oh, woe is me"; my point is that these seemingly normal, routine or mundane things have become so much more.

You're teaching us how to become better parents. To never take any moment that may seem small or normal or routine for granted. These moments are a gift from God....don't let them pass us by. Because before you know it, those moments will be gone.

What's really cool is when you realize that you are in the middle of one of these profound, mundane moments. Today was one of those days.

Momma started out with getting to hold you through your feeding and then it was tubby time.

We were able to give you what's called a "swaddle" bath. Essentially it's wrapping you in a towel and submerging you into a tub (in your case a small rubbermaid tote). Apparently, it's very stimulating for you because right when we put you in the tub....poop......everywhere. Our nurse went and got another one for us to use and we didn't have any problems from there (Funny aside though, as she was cleaning up the "soiled" tub, her phone fell out of her pocket right into the tub-o-fun.....Quite the scene. Folks at Gundersen, just put it on our tab; we've got one going).

After we got you all cleaned up, we wrapped you up like a tiny burrito. Of course, we had to take more pictures. 

After your bath, I got to hold you for your next feeding. You handled it much better than the other night when I tried holding you for a feeding. You hardly alarmed at all. 

Earlier in the day, your doctor decided it was time to try and put you in some real clothes to see how you would handle regulating your own body temp. Your bed still has the ability to control the temp, but they will be turning it down gradually (once you pass your test) to help you do all of this on your own. After your 5:00 feeding it was time to try some of your clothes on. Here is the shot of you with clothes on for the very first time! 

Needles to say, this was A LOT for one day! You were zonked out pretty good but didn't alarm: 

As of tonight at 11:00 p.m. you are now 2 pounds 14.8 ounces and still haven't alarmed much since we left around 6:00. 

What an incredible day, buddy. I'm starting to think that what they say about parenting is true; that parents try to teach their kids but really it's the kids who teach the parents. So far that has been the case. 

Love, 

Mom and Dad

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