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

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

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

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

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

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

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

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

Everybody Poops

Dear Samuel,

What a HUGE day you had! From our perspective, two really BIG milestones.

1. BM (Poop for the layperson)
The doctors were beginning to get concerned that you had not a BM yet and upped your suppositories to try and help things along. Well, apparently it worked because your nurse said it was a pretty big one.

2. Weight
At your weigh-in this morning at 2:00 a.m. you were back to your birth weight of 1 pound 6.2 ounces!

I think both of these milestones may have something to do with the fact that you are now receiving 5 ccs (milliliters) of breastmilk every 3 hours (up from 3 ccs).

We did have a Scare today too. This morning as the radiologist was reading your X-ray, they called up to the NICU nurses to alert them that they saw something in your lungs and that it was possible that lung could collapse. As soon as that happened your vitals started to drop. The nurses started suctioning some "gunk" out of your lungs, moved you around to get some further X-rays and started prepping to put in a chest tube. As the new X-rays were being looked at by the radiologist they weren't able to see the gunk in your lungs anymore. As the day wore on the nurses left the equipment for the chest tube in your room to ward off any "evil spirits" and so far it seems to have worked. They also started some Chest PT (essentially a little massager/vibrator) to break up the gunk in your lungs. Ever since that little scare this morning, your vital stats have been great and you have been resting for most of the day.

Here's a picture of when your Mom and I came to visit tonight.

Never thought I would be so happy for someone to poop, but I guess that's what happens when you become a parent. Sam, we are so excited and proud to be your parents and looking forward to the journey ahead. You have defied the odds so far, let's keep it going.

Love,
Mom and Dad