Spring is coming!

The past week has been pretty good for our little Brian.  We've ventured out of the house three whole times, and only one of them was for a doctors appointment! 

Here he is at the cardiologist last week.  He weighed in at a hefty 13 lbs!  Look at those chub rolls.  I just love them.  We had to see a heart doctor because of his ECHO results last week.  We found out that our little man has slightly elevated right ventricular pressure.  So, the chamber of his heart that pumps the blood into the lungs is working a little harder than it would on a normal baby.  She said that this is fine and expected for a baby with Chronic Lung Disease.  We will do another follow up ECHO in about six months when he is (hopefully) off his oxygen for good.  All of these things - the oxygen, feeding issues, elevated heart pressures - are things that are expected to heal with time.  We need to be patient and wait, encourage good nutrition and keep him healthy.  But man, being patient is getting hard!  

Our baby getting some snuggles... and Carl brewing beer in the background.  Nut Brown Ale coming soon.  Yummy! 

He fell asleep during bath time  :) 

And our big boy is starting to smile!!  It has just really started in the last week or so, just a few times a day.  My mom was trying so hard to get him to smile when she was here, but of course he had to wait just two days til after she left to break one out.  It is so cute and fun.  Baby smiles are the best! And very hard to get pictures of.  

  

Sometimes he gets hot and just needs to chill out in a onesie.  Or a diaper. 

Hi baby. 

It's finally warm enough for some walks outside!  We just pack up his monitor and oxygen tank and off we go.  It felt SOO nice to get out of the house.  Brian and I even went by ourselves today.  He's the best little walking partner.  

Carl takes a picture a day of our little man.  It's fun to see how much he changes!  And he uses our fancy camera.  I tend to just stick to my phone.  

He LOVED this book.  I think the red truck really caught his eye! 

Carl bought these baby Air Jordans when he was in high school, I think.  He insisted on trying them on our guy, just to check and see if they fit.  :)  I think it's going to be a little while yet!  I know Christmas jammies are out of style now, but I needed to do some laundry...

Sweet boy. 

This guy is going to need lots of sunscreen. 

Love you buddy!!  We have another well visit doctors appointment tomorrow.  We have a weight check and get his six month immunizations.  Here's hoping the doctor has all good things to say! 

6 Months!

Yes, that is right, our little man is 6 months old today!  We celebrated by having Grandma and Grandpa come and visit.  Along with our monthly tie photo.  We added Elvis in too!  Look how small he is getting, he used to be bigger than his head.  And that tie the first month was longer than his body.  I think his diaper ended right about at the top of the number.  This guy is a little miracle!  

Here is the one month picture for comparison.  Keep growing little man! 

Brian and I had quite the week.  We had two visits to the hospital.  Life with a preemie is never boring I decided.  He keeps me busy all the time.  The first appointment was Tuesday with our lung doctor.  We got a lot of good information from him.  We now have a game plan, which is nice.  Brian will be on oxygen for at least another 2-3 months, until he is 5-6 months old "corrected" age.  They want his lungs to heal and grow, and the only way to do that is with time and good nutrition.  He insisted on us getting a swallow study and chest x-ray done as well.  He wanted a base line picture of his lungs to see how they are healing and to have something to compare to just in case our little man were to get sick in the future.  Second part of that day was a heart ECHO to look at the function of his heart.  It took about 20 minutes and our little man was awesome through the whole thing.  He just sat on my lap, sucked his paci and stared at all the new lights.  

We went back on Thursday for our chest x-ray and swallow study.  The picture is Brian all set up and ready to go in the radiology department.  They put him in that fancy chair and have him eat all sorts of different combinations/thickness of formula (think in terms of honey, pudding, or nectar thick) mixed with barium so that you can see him swallowing the food in real time.  Good news: Brian eats the normal thickness formula well!  He does have something called a delayed swallow, but that should get better with time.  Carl and I need to encourage the paci to build up some muscle strength and be sure to make feeding an "enjoyable experience" to avoid the possibility of a food aversion later on.  We just laugh at that, this baby is from the Moberg/DeGroot line.  There is no food aversion here!  And look at his rolls...

I made these little footed leggings.  You know, in my spare time.  There are so many cute girl things I had to get creative for my boy!  I love sewing, it's a nice break when Carl is home to help with the babe. 

All the boys had some quality time together this weekend.  Carl is holding the syringe that helps us feed Baby Brian.  First, we feed him from the bottle like any normal baby.  Then the rest of his food goes into the syringe and down his tube into his stomach.  We can't really let him just be done when he is tired because nutrition is so vital for him.  He needs the proper nutrition to keep growing and to get his sick little lungs to heal.  Our primary doctor called me Thursday night and we chatted for half an hour.  We talked meds, therapies and every thing else Brian related.  She said we have another 6-8 weeks for him to really catch on to eating before we seriously talk g-tube.  Let's pray that is not needed. 

Grandpa is so comfy. 

We sure love our Grandma and Grandpa! 

Brian doing some tummy time.  He loved it at first!  

But, man, is it exhausting :) 

He slept like this for probably 20 minutes.  And I let him because he seemed comfy.  This week will hopefully be less busy.  We have no appointments planned, but now I just need to figure out all his therapy schedules and new meds.  We have also added cardiolgy and feeding therapy appointments onto our long list of specialists that we see.  Keeping them all straight is seriously a full time job.  Good thing I have a Google calendar. Love that thing.   Carl is currently reading "Going on a Bear Hunt" to Brian right now.  It's adorable, and I need to go watch.  

A post in pictures

We are not very exciting around here.  The highlight of my week usually includes my weekly trip to Costco/Target when I get a latte and walk around by myself.  Or bath night or Fridays when I change out all his tubing.  No complaints from me though!  Our little one is growing and thriving at home.  

Our little buddy is now big enough for the "facing forward" option in the Baby Bjorn.  He loves it!  We hang out like this for at least a few hours every day. 

Bath time is his favorite thing.  He loves to look out the window and do crazy amounts of kicking. 

This is how he spends his mornings.  Face planted in my chest. He loves it! This has always been his happy place.  I think it goes back to those very first holdings in the NICU.  Love this baby.  

He was doing some bicep curls during our afternoon exercises.  

Carl reads little books to him at night.  He's currently being taught how to use the Ipad.  

This was during our "tube free" time.  The outfit is a hand me down from Cousin Charlotte.  So cute.  It only lasted about 30 minutes though...

Carl and Brian wore matching plaid shirts.  SO cute. 

Thanks for the shirt Auntie Gracie! 

Brian is strangely content lying on his stomach with his hands straight down by his side.  Whenever he's crabby we do this and we have a new baby.  

We put Brian in the Bumbo!  He thought it was great.  His head control is getting so much better.  Our little man also LOVES the lights. 

Picture overload, I know!  Brian and I have two doctors appointments this week, both on Tuesday.  We see the lung doctor first then we go visit the cardiologist for a heart ECHO.  I'll be very interested to hear what the lung doctor has to say about his oxygen and how long he thinks we'll be on it.  Brian is doing pretty good I think, but it sure will be nice when we get to lose our tails.  :) 

He's Huge!

We have had quite the busy week!  But first, a picture :) 

This is our little man last Friday.  Once a week I always change out his nasal cannula and feeding tube for new, clean ones.  Friday is the day.  And I usually pick a cute outfit and do a little photo shoot while he is tube free.  He was SO CUTE and content.  Brian did so well with his oxygen off, he lasted about 20 minutes and was maintaining his oxygen saturations in the 90s (that's perfect) for the whole time.  We even managed a few facetime chats to show off his tube free face.  

Here's our little wiggle worm this afternoon.  This is outfit #4 people!  He goes through them like crazy lately, for multiple different reasons...  I don't really mind, it lets me use all the outfits we got for him, and baby laundry really is the best kind.  

We've been busy with our first round of therapist visits.  Last Thursday we have a Physical Therapist and an Occupational Therapist come to our house to evaluate our little buddy.  Overall, they think he is doing great!  He tested right on for a normal one month old!!  He was behind on some things, but ahead on others.  They were very impressed with his head control and could tell that we have been doing our exercises every day.  So that is great news!  They will continue to come to our house and visit our little guy once a month to watch his progress.  

On Monday, we had a Speech Therapist come to our house.  Their job is to watch his feeding and see how he is tolerating everything.  Obviously our chubby little man is getting his food, but we would like more of it to go down by mouth and less and less through his feeding tube.  He loves to eat but has been dealing with some pretty significant reflux.  We started up on some meds to hopefully help and we will get something called a Swallow Study done.  Brian and I will go to the hospital and have him eat in the radiology room with some special formula that will allow them to see if he is spitting up or having any of the food go into his lungs.  Hopefully we are all good, but better safe than sorry.  

 

We also had our second doctors visit on Tuesday!  Brian is up to a hefty 10 pounds 14 oz.  WOW!  That is 10x his birth-weight, people! Our Dr was very happy with his progress.  Based on how well he has grown this last month, if he continues on this trend he will physically be caught up to "normal" by his actual 1 year birthday.  So, if things go according to plan,  Charlotte and Brian will look the same by Labor Day.  To keep up with this crazy growth curve,  Brian gets fortified breast milk and needs to eat 3oz every 3 hours to get the needed calories.  That is alot to eat for a little 7 week old baby!  So we let him take what he likes from the bottle first, then continue to put the remaining down his feeding tube.  We hope that he needs that tube less and less, our Dr said that we have about 6-8 more weeks for him to totally catch on before we start talking about placing a G-tube.  That's a surgery that would involve putting a tube right into his stomach for him to get food that way.  Let's hope that doesn't happen!  

Carl and I are enjoying our time with sweet Brian.  He is much more alert and interactive now.  It's so fun!  He's constantly looking around lately and seems very curious.  It is definitely a fun, new stage for us.  He is on the brink of smiling on purpose! Not quite yet, but I think we are getting there.   I have one more week home then I head back to work next Friday night.  I've had a whole six months off, my work has been awesome.  At least I only need to do one day a week, and an 8 hour shift at that!  And then Carl is able to stay home and take care of our little buddy so there will be no day care for him.  We don't want any extra germs around here.  :) 

Sweet boy fell over, and didn't even mind.