Charles in Charge

Charles is definitely in charge of our days and our nights. He is however a really good sleeper. The one thing I wanted him to take after me- score! He slept straight from 11 pm- 9 am earlier this week. Hope I'm not jinxing it but we have found the silver lining to having a feeding tube that can pump him full of milk while he sleeps!

While we're getting a little more sleep, we are still very much off our game. We have lost all ability to keep track of keys and close doors. We've now gone to bed with our keys hanging in the door multiple times including once where Aaron's were in the front door and mine were in the back. We've also left our door wide open while we've gone for walks, left multiple car doors flung open for hours and I've closed the trunk with my keys inside at least twice. There's only so much brain power left for these things when you're trying to keep a brand new human alive.

Aaron went back to work last Wednesday so I've survived a full week of days with Charlie on my own. We've made it out of the house quite a bit (while leaving our house and car exposed to theft) and are starting to slowly fill the calendar with social outings here and there since the weather has been so nice!

Charlie now weighs almost 11 pounds. In fact, he has grown so much that his doctors have now put him on a diet! We're hoping the diet will result in us finding our son's long lost neck. Charlie has also been making some progress on the feeding front and is taking a bottle/nursing up to 4-5 times a day. Still taking it slow until we do a swallow study at Seattle Children's Hospital next week where they'll take an x-ray video of Charlie taking a bottle to examine his swallow mechanics and to see if there is any danger that he's aspirating any milk into his lungs. Depending on what they see, they'll recommend how quickly we progress his feeding plan. Fingers crossed we can keep charging ahead!

And here are the latest photo highlights...

Someone has been giving us a smile every once in a while. 

Doctor said its 50/50 whether he's smiling at us or at his own gas. 

Turns out Charlie has a dimple hiding in his cheeks!

Pooped from watching the Auburn Spring game. 

Charlie hosted his first Easter brunch and had lots of fun with multiple outfit changes! What a diva.

Outfit 1

Outfit 2 (Thanks Mindy! It ain't Easter without some smocking!)

Outfit 3/one too many- (also care of Mindy)

Staying warm with his cool new hat from Stephanie!

 Testing out a pee pee tee pee (also from Aunt Steph)! 

Sorry Charlie- your mommy has no shame. 

Beating Dad at a staring contest.

Cry babies on their second date. 

 Not feeling so good about that second date 

(even in his nautical best from Aunt Emily and Uncle Bob).

Cheered up by some toys!

RIP biggie smalls (care of Uncles Erik & Andrew in SF!)

And lastly, here are some photos from Charlie's newborn shoot-  including some more bunny pics!
http://ashleyaguillard.com/2014/04/charlie/

Charlie is home!

Well, actually he's been home for a week and a half. Turns out that taking care of a baby without the help of nurses 24 hours a day is a lot of work and doesn't leave a lot of time for blogging. 

I'm happy to report that we have managed to keep our child alive for a full 10 days! We haven't even forgotten to feed him. We have however forgotten to change his diaper quite often which is why his entire wardrobe has been washed several times over now.

We love having our little boy at home and the NICU already feels like a thing of the distant past. Charlie is spending a lot more time awake now and is very alert and expressive when he is. He's still pretty cute when he sleeps too which is the majority of the time. Aaron and I are still getting used to all of his equipment. We did end up coming home with the feeding tube as well as oxygen to help Charlie with his oral feeding. We take turns knocking over an oxygen tank each day and cursing his feeding pump. The good news is that everything comes in portable form so we were able to get out at least once, sometimes even twice a day in the amazing weather we had last week in Seattle. The nice weather also allowed us to be a little more social than we expected to be our first week home. Charlie loves riding in the stroller and getting fresh air and by love, I mean he instantly falls asleep.

We just got back from a marathon of appointments at Seattle Children's Hospital today to meet with Charlie's feeding therapist, pulmonologist and nutritionist. They'll all follow Charlie as long as we need them. They think it will take anywhere between 2-6 months for Charlie's lungs to develop enough for him to be able to eat without the feeding tube so we better learn to love all of Charlie's accessories for now.

Thanks to everyone for all of your love and support. I don't know how we would've made it through the last 3 months of hospital living without you. We have a lot in front of us still. I'll keep posting about all of the adventures ahead. For now, here are some pics of our last days in the NICU and our first week home as a family!

Love,
The Brady Bunch!

Did you know Maggie Simpson is a resident of the University of Washington NICU? 

Modeling his mom's hand-knit goods!

Celebrating 2 months before Grandma Lee & Aunt Grace had to leave. 

Milk does a body good. 

 Last room shot. 

Last view shot. 

 All dressed up and ready to go home! Last pic with Charlie's physical therapist, Danika!

Impossible to drive any slower.

First stroll!

Daddy time on the couch.

First park outing.

First date with Ada Jacob!

Feeling like his first date went really well. 

So happy to be home!!

Baby Jail

Charlie's 5 star room with a water view has now become Alcatraz. He has outgrown his bassinet and has moved into baby jail. He even has the stripes and an ankle bracelet to complete his criminal look. p.s. I'm still on the hunt for an orange baby jumpsuit for the full effect. 

This place is starting to feel more like prison for me and Aaron too. After 13 1/2 weeks of living in a hospital, I am officially over it.  Charlie is still a happy camper and growing chins by the minute (he's now 8lbs 13oz!), but its been a rough week emotionally as we're going on almost 8 weeks in the NICU and wondering why we're still here. Its especially confusing when all the doctors have been telling us that he's doing great, its just a feeding thing and every baby is just different. Well, we finally asked the doctors and staff to sit down with us so we could ask some more questions and got some answers that were frankly surprising. Turns out that Charlie's lungs are more premature than a "typical" preemie born at his age because he was without fluid for so long after my water broke. So while we are here because of feeding, its his immature lungs that are making it so challenging. They also told us his lungs will never be equivalent to a child born at full term which the doctor explained by saying "he'll never be Michael Phelps". Well Dr. Doom, we don't care because Michael Phelps is a douche and Charlie will also never have arms freakishly long enough to do that gross back slapping move- thank goodness. Sorry to be crass but if you tell a mama bear that her baby can't do something, you better watch out! We did ask if he could run varsity track in college like his dad and they said yes. We forgot to ask if he could play high school tennis and win the "sportsmanship" award like his mom so the jury is still out on that one. They also told us it will take a year or more for his lungs to catch up which means no flights, no daycare, no crowded places and very strict screening of visitors for a year because even catching the slightest cold could be a pretty scary setback.

While its great to have answers now, it felt like a slap in the face to hear all of this for the first time and this far into our journey. The next year of our life will be totally different than we expected. We assumed that we'd need to take things slow but surely we thought we could take him to St. Louis to see Aaron's family for the 4th and to his first auburn football game in the fall. Not even an occasional boozy brunch on the weekends? Thats question #1 for his first pediatrician appointment. I guess we'll stick to walks and hikes in the summer with our bubble boy. This kid is already so Seattle, I'm seriously questioning whether he is mine.

A lot of you have been so nice and have asked about coming to see Charlie. There are no hard and fast rules that the doctors are giving us about that. They just toId us that we have to live our lives and do what feels right. I'm not sure what that means yet for us. I'm dying to introduce Charlie to all of you but most of you know that Aaron and I both suffer from chronic paranoia. Once we get home I know we will want visitors but we'll need to wait until flu season is over and take it slowly. I'll apologize now if we bathe you in sanitizer as you walk in the door! I'm sure we'll become less crazy as time goes on so maybe we'll even be up for some al fresco dining this summer. We can always dream...

As for when our new life outside of the NICU will start, the doctors are basically fine with us going home at any time but it means going home with the feeding tube. At first we said no way because we would have to be able to thread it through his nose and into his stomach by ourselves if he pulls it out which seemed terrifying. But knowing that we need to take things slow to let Charlie's lungs develop and let him make feeding progress on his own timeline, the best place for all of us is home so we can get on with our lives. Right now we are looking at being discharged in the next 2 weeks so in the meantime we're working with a pulmonologist to see what we can do to help Charlie make safe feeding progress. One thing we're trying is giving him a little oxygen to see if it helps with feeds which is why he has his nasal cannula back on in some of the pics. If it seems to do the trick we may go home with that as well.

Thanks for bearing with me through this long post. You're almost to the picture portion! But first, we have to tell you how grateful we are for the continued support and encouragement. We've needed it now more than ever. We know we'll get through this and will be so happy when we can finally bring our little man home!

Charlie's first birthday is going to be a rager and you're all invited!

Taking his new bouncy chair for a ride!

Finally got to meet Aunt Grace this week!

Is this the same baby that loves to give stink eye? 

Touchdown Auburn!

Binky time with Dad

Grandma snoozin on the job

Top of the morning to ya!

This little leprechaun would like to wish you all a Happy St. Patrick's Day!

We're hoping its a lucky day of good eating for our little fella. Charlie has definitely made some progress. The good news is that he has taken at least one full feed orally each day for the past 3 days. The bad news is he needs to do that 7 more times a day before we can leave. He's weighing in at 7 lbs 9 oz. and we're 3 days out from his due date or as my dad likes to say he's "negative 3" days old. The whammy is that because he is growing so much, his feeding goal increases each day, so our new strategy is to ask the nurses to wait and weigh him after his biggest poop. I don't know if they're gonna go for it.

Charlie is still great at giving us the stink eye. Case in point, here's the look he gave us during our photoshoot before we got a smile.

 

In other news, the nursery is complete! Just waiting on a chair to arrive that was not only stupidly expensive but apparently takes 8 weeks to make. It better be magical!

One of Charlie's new favorite things to do is yank his feeding tube out so his crazy hands are now on lock down. We did manage to get a shot of his tube free face before it had to go back in.

Grandma Lee is still here and Aunt Grace arrives next week but sadly Grandpa Lee had to head home yesterday. I think Charlie managed to make a pretty solid impression.

Here are more photo/video highlights from the week:

 Doing the sprinkler...

More fake baby training. This week's lesson- swaddling.

Taking his first ride in the mamaroo swing! 

Slow and steady wins the race...

Today is Charlie's 5 week birthday! I have been wanting to post sooner but sleep deprivation has left me with no ability to form complete thoughts or sentences so its taken me a while to muster the energy to put my fingers to a keyboard. A lot of you know what a champion I am when it comes to sleeping. Just ask Aaron- there's nothing I do better or enjoy more. This is probably one of the reasons why we put off having a child for so long. Actually, it definitely is a reason why. So just when I think I've reached my limit, the little man gives me a face like this and all is forgiven:

He also takes after his mom and is quite the champion sleeper himself.

So the NICU update is that we're still here. We're 10 days out from his due date of March 19th and we can't say if we'll be home by then or not. Charlie is still doing great and has really filled out, weighing in at 6 lbs 14 oz. He also has quite the personality and continues to give us some serious stink eye. Granted you can't blame him when his mommy likes to treat him like a doll and stick birthday hats on him every week. This is from his one month celebration:

In good news, the nasal cannula (the tube with prongs in his nose) came off a while ago and hopefully is gone for good. Charlie has made himself quite at home and has become very comfortable with food being shot straight to his stomach through a tube. Apparently he also takes to laziness and bed rest as well as his mom does. So we're focused completely on transitioning him to oral feeding where he's definitely made some progress but its been slow. He's learned to take up to about half of his food orally in a single feeding (which means by bottle or breast- I will apologize now for the use of the words "breast" and "pump" in this and future posts and will do my best to limit their frequency). Eating on his own can definitely wipe him out so some feeds we just need to let him rest and gavage feed him (which means feeding him completely through the tube in his nose). Sometimes I feel like we are going to be here until he's 18 but everyone here reassures me that Charlie's progress is great and things are moving along just the way they should. This experience has really taught me the virtue of patience which I didn't have much of before.

Also related to his feeding, Charlie had a big day Friday when he got his frenulum snipped. That's the tissue that connects your tongue to the bottom of your mouth. Charlie's was a little tight and affecting the range of motion of his tongue which is important for feeding. Apparently its a hereditary thing and not a preemie thing. Anyway, there is a very experienced doctor here at UW that specializes in treating them and assured us it was a simple procedure with no real downside so we went ahead with it. It was a little more traumatic than we thought but Charlie recovered well after looking like a little vampire with blood dripping out of his mouth for just a minute. And now we do mouth exercises with him to teach him how to use his newly freed tongue.

Charlie has quite the entourage here in the NICU- multiple residents, a fellow, an attending physician, a day nurse, a night nurse, a nutritionist, a respiratory therapist, a physical therapist and several lactation consultants. They're all amazing baby whisperers and make me want to come back in my next life as one of them.

Thanks for all the well wishes and kind thoughts for Charlie! Please cross your fingers for us that he also takes to eating as well as his mom does. Here are some pictures and videos from the last few weeks with the biggest highlights being Charlie meeting both sets of grandparents and his Aunt Emily for the first time!

Man Yue is a one month celebration in China. Apple tart is Charlie's favorite dessert.

 Celebrating with the Brady family!

Charlie and his Nai Nai (Grandma).

Thanks for the money Nai Nai. I'm rich!

Charlie and Aunt Emily. He can't wait to visit the Lou. Look at him reaching for the arch! 

Speaking of the Lou. Charlie loves his Nelly face bandaid look. 

Charlie & Grandpa Brady.

Sweet little foot. 

Charming Grandma Lee even when he's asleep. 

Melting Grandpa Lee's heart. 

 Baby obsession

Working on a present for mom and dad. 

Snorty baby with crazy arms.