Wednesday, May 27, 2009

Ho Hum... Hallelujah!

After an extremely "ho hum" week, this past Sunday busted us right back onto the speeding rollercoaster! You see, compared to previous weeks, we had a very normal week... no high peaks and no dipping lows... just coasting right along. It was kind of nice to just enjoy normal baby stuff :)

During our "normal" week, we even went out to dinner for the first time with the babies! It was great!! Of course, we went with reinforcements in case things got out of control :)

Then, on Sunday, it happened! We are soaring once again! Samuel came off the ventilator!!! We are so excited!! He has come off of the ventilator before, and I have had a hard time getting too excited because we've been there and done that... but I have decided I've got to just let go! I can't worry about tomorrow. I have to celebrate today :) And today, our littlest baby is off the ventilator! YEA!

Above: On the ventilator... sleeping :)

Below: OFF the ventilator (on CPAP! Looks more painful, but much better for the lungs!)

I couldn't choose between these two - so you get to see them both!

George and Olivia have had a great week too! Olivia has started giving smiles on purpose! And George is right behind her with one or two :) If there was a way to bottle that feeling of the first time your baby smiles at you and means it someone could make billions! It is absolutely incredible! (Side note - one of the cutest things I've heard - when they smile involuntarily they're not having gas... they're just still new enough to remember and dream about heaven :) Wish I could remember who told me that so I could give credit where it's due. I love it!)

Once you are able to see past the red pants, check out this cutie patootie!

Dad is officially wrapped around that tiny little pinkey finger :)

Lovin' life!

Sunday, May 17, 2009

Light and Fluffy

After a rough week, it's time for some "light and fluffy" stuff :) We can't forget all the fun, sometimes more fun-ny, stuff that's happening too!!!

Olivia's first dress! She looks like such a little girl!! We're more of a onesie-and-socks type of family, so it was fun to get dressed up :) The occasion? I was waiting for an occasion, and meanwhile she was going to grow right out of this dress without ever wearing it! ha ha!

Winking at her favorite cousin, Maddy :)

Poop shooter. Yep, we had our first poo that literally shot out! I've heard stories, but we hadn't experienced it until today :) Mom wasn't quick enough with diaper and the changing table paid the price! And from such a cute little boy...

Oh wait... now do you believe it?

Brown Bear, Brown Bear is officially Samuel's favorite book! He loves looking at the Red Bird, the Yellow Duck, and the White Dog the most. It is absolutely incredible to watch him "read" this book!!!

Weight checks - we are officially getting some chunky monkeys! Finally! Samuel is 5-lbs 13 oz, George is 8-lbs 4 oz, and Olivia is our big girl at 8-lbs 13 oz! G & O have both outgrown most of their preemie clothes, and all three are out of preemie diapers!

The dress AND the cute jumper are newborn sizes :)

DB and I have officially each exercised at least once since G & O came home! I've gotten in a couple of swims (ouch!) and DB some bike and treadmill (gotta get ready in case there's a surf opportunity!).

Both Olivia and George went almost an entire day without their monitors on!!! Of course, Olivia refluxed, dropped her heart rate, and turned a tad blue this morning... but we'll go back to focusing on yesterday when they didn't need them :) (I think I've mentioned it, but they are both on monitors that go off if they either stop breathing or their heart rates drop too low. Kind of a pain, but GREAT for peace of mind when sleeping!)

The stroller is starting to get some good use and we get more and more comfortable taking them out and about for walks! The dogs couldn't be happier! Not quite back to our pre-pregnancy two walks a day, but we went at least a handful of times this week :)
Scout and Olivia after a good walk :)

DB and I went to Charleston together for the first time since O & G came home a month ago! Omi and Aunt Nancy watched the babies and we took the 6-hour trip together! Funny, we're both used to turning up the music and cruising... but this time we had to compromise on the type of music we listened to :) It was really nice to be together on this visit... we met with Samuel's doc's for probably 45 minutes!
Getting better every day! These are the photos I hate taking... but good to have for when he's older :)

BTW - Samuel is doing well! He is very stable at this point, which was not the case a week ago, and he looks SO much better! Samuel is responding well to the sedation and the morphine, so now that he is resting peacefully, we are talking options to get his lungs to heal. There are lots of ongoing meds and tests, but in regards to why he crashed they are also following a recommendation from endocrinology regarding his cortisol... and it seems to be working! In short, due to the high doses of the very potent steroid he was taking before, his adrenal gland appears to think it does not need to produce it's own cortisol, which we all need, especially in stressful times. So, we are looking at a 10-week slow weening dose of hydrocortisone - which is 25-80 times less potent than the other steroid he was on so less side effects! As I mentioned, there are other things we're always looking at - glucose, potassium, calcium, diuretics, heart, head, inhaled steroids, and especially nutrition.
We appear to be headed in the right direction! He even gets to have his music, mobile, and physical and occupational therapies back! YEA! The best news - I just got word that he is stable enough for us to hold him!!!! Tricky with the ventilator, but SO worth it!!!

Wednesday, May 13, 2009

Samuel's No Good, Very Bad Day

There's not really any candy coating this time... to tell you the truth I'm just too sad to think of any. On Monday afternoon the bottom dropped out for Samuel.

Our little guy has really bad lungs - there's no way around it. They just can't keep up with him yet. He finished his fourth round of meds for his lungs (steroids) a week before, and by Monday afternoon they wore off. I know it's not true, but it feels like Samuel is back to square one. He is back on the ventilator after 57 days off of it, but this time he is bigger so they also heavily sedate him in order to get him to relax and allow his body to just breathe and heal. They also don't want him to feel any pain. I understand all of this, but I hate seeing my little boy just lying there in the NNICU - not moving his little arms and legs, not lifting his head and peeking out at the world, not interacting, and not enjoying his music and mobile like he used to. I think the worst part is that we can't hold him. I know this is temporary, but right now my heart is breaking.

A friend emailed me this verse a while back, and I have really tried to keep it on my mind - especially now: 1 Samuel 2: 26-- "and the boy Samuel grew strong in stature and in favor with God and man."

I so want my little boy to grow strong! I've never wanted anything so badly in my entire life.

The goal, for right now, is to get him off the ventilator in one week. We are praying for this every day! The problem is, there isn't any type of prescription that will just "fix" his lungs. His BPD (Bronchopulmonary Dysplasia) is chronic and severe, and there's not a pill that just makes it better. There are lots of things we can try, most of which we already have... it's just a matter of finding the right mix of things to make Samuel better. His right side has also collapsed a bit, so we are using the ventilator setting to try and pop them back open. The docs are really thinking outside the box, and double checking his heart, getting a consult from endocrinology, and trying new things with his ventilator settings and nutrition. But, it sounds like the bottom line is that the bigger and stronger he gets, the better his lungs will get.

The doctors and nurses are amazing! They so obviously love Samuel, and that brings us such joy. He is in the best possible place! There is always a silver lining :)

But - it doesn't seem fair. I know he'll get better, I'm just not sure when that will be.

Here's our little guy the day before things got bad - with his mac daddy set-up :) Sorry, I just can't bring myself to take a picture of him right now... I know I should, so that one day I can show it to him. Maybe I'll get the courage tomorrow.

Thursday, May 7, 2009

Day of Life 100

Yes, really! It has been 100 days since the babies came!

I am so torn. It is amazing how far our pumpkins have come... but I'm not going to lie - it breaks my heart that our little Samuel is still in the hospital. He is doing really well, and is almost five pounds! (Just a reminder - he started at 1 & 1/2 lbs!) But his little lungs are just not good... they still need more time to heal. How much time, we're just not sure. If everything goes perfectly, he could be home in a matter of weeks... if not, it could be a couple more months. We are so ready to have our family together! The great news is that he likes to eat :) The more he grows, the stronger he gets and the more avioli his lungs grow. These are both great things!!!

I miss him so much. I needed to take a minute today to encourage my spirits... here is what I saw...

93 days ago...

5 days ago...

93 days ago...

5 days ago...

104 days ago...

5 days ago...

(You didn't really think I would post a belly photo?! :) )

Brother and sister chillin' :)

Friday, May 1, 2009

From Us

Hi everyone! Olivia and George here! I know what you're thinking... man, aren't kids tech savvy these days! And yes, we are :)

Mom keeps going on and on about needing to post on the blog, but not knowing where the time goes... we're not sure what that means - we can tell her exactly where the time goes! And dad is busy between hanging with us and the kids at school. So, we thought we would do our part and update the blog!

It's been three weeks since we came home! Man, do we love it here! So much to tell, and we have some cool photos to share...

First, we really miss our brother! Samuel is still hanging out with the nurses at the NNICU - we've tried to get a message to him that it's WAY better at home, but we're not sure he got it. (He's a little spoiled with all of the attention he gets :) ) Mom, dad, Omi, and "aunt" Sarah go to visit him every day, and it sounds like he's doing well! If everything goes perfectly, he could be home in the next 4-6 weeks. We are hoping his lungs stay strong! Mom will have to update you with the specifics... all we know is that we can't wait for him to come home.

We have had lots of visitors! First, cousins Elizabeth and Gary came to visit us in the NNICU and were here when we got home! They were GREAT! Mom and dad weren't sure what the heck to do with two babies at home, so it was really nice that they were here to help out :) Dad had our rooms organized, and Elizabeth did our laundry and organized all our stuff... man, do we have a lot of stuff! Who knew babies could go through so many burp cloths in one day?! Luckily, mom sure seems to enjoy the laundry room - she's in there all the time! Gary helped put a lot of our things together and it turns out he is a great cuddler :) They even took infant CPR and got trained on our apnea monitors - mom and dad got to leave the house at the same time to go see Samuel!

Our Omi lives down the street, so we get to see her all the time! Every exchange between her and our mom and dad seems to include "love you" and "thank you" :)

Our "aunt" Brooke came to visit too... she stayed with us and helped with our 2am meal time. You would be amazed at how much energy our mom and dad had that weekend!

We're pretty sure we live in a really cool town! Lots of people come over to help mom and dad feed us, and they all seem awesome! We each take anywhere from 20-60 minutes to eat (we're getting better!), and we eat every three hours, so all these incredible people helping out allows us to spend some quality time instead of always feeling rushed. Plus, most nights mom or dad is with Samuel, so it's really nice to have some company :) There are also people that bring yummy dinners - we may not be able to dig in yet, but our noses love it - and some who even walk the dogs! (Huge thank you to our church and school families for coordinating AND volunteering!!!!)

Check it out, we have two cool dogs too! Who knew?! They're really funny - Belle likes to sniff us a lot and then sit right next to us and stare :) (In this photo, we're going for our first walk!)

Some other fav's...

First doctor's appointment in Beaufort! Above, George - below, Olivia. We love Dr. Kurt!
There's bath time at home too - and Olivia loves it! YEA!!

George just chillin...

Olivia reading with cousin Kelley! (She just got here today - yea!)

Dad and George :)