A lot of the same

We have been doing a lot of the same around here.  Our normal day revolves around Brian and his eating/pooping.  Sad but true.  But look how cute he is! 

We went to see our doctor last week for his 2.5/6 month check up.  He needed his 6 month shots, so that was sad.  Poor buddy did the most pathetic little cry...but really just needed a hug and he was all better.  We found out that Brian is now in the 60% percentile for a normal baby his size.  YAY!  His last weight was 14 lbs and he continues to grow like a champ. 

Because of how well he is growing, our Doctor encouraged us to give Brian a "tube free trial."  Meaning, we took out his feeding tube and let him decide how much he wanted to eat and how often, kinda like a normal baby!  It went great for a few days...  I was doing daily weights and recording every teaspoon he ate.  But after about five days our little man got too tired.  He lost about 6 oz and his urine out put even dropped off.   Back in went the tube.  

So now we know he IS able to eat well at times, but just not quite ready to tackle everything on his own.   Feeding is such a big deal for our little guy.  Feeding means nutrition and nutrition means he is growing and healing.  We have another 4 weeks or so before we can try and introduce some solids and get him really going on the bottle.  If he still can't take in enough calories to grow, it would mean he would need surgery to place a more permanent feeding tube into his stomach.  We really hope we don't need that!

Brian is getting was more active these days.  He is smiling like crazy and only takes a few cat naps during the day.  

He loves to sit up with some help and look around at all the lights.  He is tracking his toys and loves going out for walks.  (It might really be his mom loving the walks, but we pretend he likes them too) 

Brian's girlfriend Juliet came over.  It is really hard to get a good picture of two 3 month olds! 

This is how he likes to sleep.  Silly boy. 

Hi Buddy!! Look at the smile :) 

These boys love each other.  Brian was doing tummy time and Carl figured he could get a little neck rub out of it.  They were both having fun!  It's a nightly occurrence now.  

He is outgrowing his cute plaid shirts.  I'm probably sadder about this than I should be.  

I think he likes me.  I really like him! 

Carl's mom came to visit this weekend.  So Brian got a LOT of extra snuggles over the past few days. 

Brian is not always thrilled with our weekly tube free photo shoots.  But we love them!  

Tons of pictures, I know.  But those are really the best part anyways!  We have no doctors visits or therapies this week.  Last week we have physical and speech therapy.  He is meeting all his milestones for a 2.5/3 month baby, so that is great news!  Brian continues to struggle with feeding, but we are planning on meeting with the speech therapists at least twice a month.  I was hoping they would be able to magically fix him, but they said to continue on with what we are doing.  Offering the bottle first then putting the rest down his tube.  Nothing can fix our issue but time.  Time to heal his reflux problems and time to get his muscles stronger and more coordinated.  

Patience Lauren, Patience! 

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.