Good news!

The ups and downs of this preemie mom life are crazy.  It is an emotional roller coaster that's for sure.  Just two weeks ago we were back to stage one.  Well,  Brian and I went to the hospital and had some tests done.  

The results from this heart ECHO were excellent, not perfect, but much improved.  In February Brian's ECHO was abnormal.  They were watching the pressures in his right ventricle (the chamber of the heart that pumps blood into the lungs).  His number was 41 and normal is 25.  The Cardiologist said they expected an elevated number for him.  Because Brian was born so early he had chronic lung disease, so his right ventricle had to constantly work harder than normal against his sick lungs.  That made his number higher - 41.  This week his number was 31.  Down 10 whole points!! His lungs are healing! I got a call from our lung doctor late Thursday and he gave us the OK to go off oxygen officially! So we have been oxygen free for six whole days.  YAY! Let's hope this time it lasts.  

 

Our two additional night time feedings seem to be paying off as well.  Brian is up to 16 lbs!  I've been sending weekly weight updates to our pediatrician.  She's pretty happy with the results.  Now the challenge will be to keep him gaining weight while off oxygen.  You can do it little buddy!  

 

Brian's been working on his selfie face.  Usually after we do our floor exercises and read some books I let him play with the phone.  He loves it and tries to eat it!

 

I've been staying up and doing the late feed - about 11 or so - and then Carl wakes up early and does the 5 am feed then heads straight to work.  Staying up late lets me have time alone and it's been great!  I've been sewing up tons of leggings for our GingerCrafts show this fall.  Rachel and I are pretty excited, and hoping it goes well!  We both have quite a bit invested in this. And that lovely bowl of peaches is from the tree in our front yard.  Delish! 

 

We're starting him early with the CAT equipment.  :)

Poor buddy was exhausted, I laid him down to quick go to the bathroom and I came back to a sleeping baby.  

This baby is just so happy and cute!  He laughs and giggles all the time and he's really starting to talk.  He talks the most when he's really tired. He'll just rub his face back and forth in our chests while going on and on about who knows what! 

We also had our first appointment with the Neuro-developmental doctor this week.  Turns out she goes to our church and she knew about Brian through the prayer list!  Brian really impressed her.  She had only great, positive things to say about our little boy.  We talked a lot about his progress and milestones and what a miracle he is for a 23 week baby.  

Here's just a short list of all the things she couldn't believe: 

He has no problem with his vision.   He can track and follow everything even after his grade 3 ROP and eye surgery.  We go back to the eye doctor next week. 

He never had a g-tube and will eat from a spoon.  Most preemies have oral aversions and need to be tube fed. 

He is sitting up! Still a little wobbly but we work on it everyday.  

He has never had any seizures and has proper muscle tone.  He had brain bleeds in three parts of his brain and never suffered from any of this. 

His head shape!  I go on about this all the time, but the NICU at Helen DeVos Children's Hospital is amazing.  A lot of preemies have an odd shaped head, or a "toaster head".  Google it. :) 

He is meeting milestones on time.  Brian grabs for toys and will make eye contact and smile.  All good things! 

 

I'm sure there are more but she was very impressed.  She told me just last week she saw a baby born at 23 weeks and weighing 500 grams (the exact same as Brian) and that baby has a trach (breathing tube in neck) is ventilator dependent with a g-tube for feedings (tube into the stomach) and totally not interactive.  We really are so lucky to have our little boy.  But what made me feel the best...She told me he is doing so well because he has me for a mom.  I sorta got tears at the appointment.  That makes all the hard work worth it!  Then this nice lady doctor took my baby and had to show him off around the office.  It was wonderful, and sweet baby boy just loved all the attention. 

These are the wonderful NICU ladies!!  We love them.  Thanks for coming out to the lake you guys! 

Charlotte loves Brian.  Sometimes she gets a little too excited and gives him some "love pats".  Soon Brian will be able to give some love back! 

We are heading up to Minnesota this weekend to visit Carl's family and go to our friends wedding.  It is a 7 hour drive with our little man, let's hope he sleeps the whole time.  Say a little prayer!

Too good to be true

The title says it all, everything around here was going too good to be true.  Preemie parents never get a break.  We've had a few doctors appointments the last couple days and it just seemed like nothing was going as well as it should.  Our pediatrician says that Brian looks great, he is meeting his milestones (YAY!) but...he is not gaining weight.  The first thing she said when she came in the room was that she is "concerned".  Never fun words to hear.  Our little guy's weight has been the same for the last three months.  His head and length are growing (good signs) but he doesn't have any left over.  The growth curve for him is more like a flat line, pointing towards the "failure to thrive" baby.  So, we upped the calories in his formula and added in two more feedings over night.

Our little guy turned 10 months!  There were 1,000 cute pictures ... and I think he has red hair :) 

Lung doctor visit was today.  I went in excited that we would finally get the OK to go off oxygen completely.  Turns out we're back to square one.  The pulminologist says we should go back on O2 full time.  Along with now needing another swallow study and a heart ECHO.  UGG...  Swallow study to make sure his food is properly going into his stomach and to rule out reflux and to make sure it is NOT going to his lungs.  And then an ECHO to see if he still has pulmonary hypertension (high pressure in his lungs) that might be putting extra work on his heart.  The thinking would be that if his heart and lungs are working extra hard maybe the oxygen back on will give him a much needed rest and finally let him gain some weight.  So we would be putting all those extra calories to weight gain instead of breathing harder.

He's starting to sit up and play during walks instead of sleeping.  

Snuggle time with Daddy

It makes sense, it all does.  It's just frustrating and tiring for us as parents when we were finally getting to the "normal" baby stage.  Now we're back to the newborn phase it seems, every three hour feedings with full time oxygen.  (Sigh) But...everyone still says how awesome he is doing!  Our little champ is sitting up, playing with toys and wonderfully interactive.  No one would ever know he started out at 1 lb if you looked at him now.  He laughs and he "talks" and he is just the sweetest thing ever.  We really are so lucky to have him doing as well as he is.  Again, we just need patience! A few years from now we will look back and this will all be a blur.

We went to a birthday party/4th of July celebration on Saturday.  Brian got all decked out and was really excited to see his girlfriend Juliet... Two babies are hard to take pictures of.  :) 

We also took Brian to church for the first time!  He had on a way cuter outfit but needed a wardrobe change about 10 minutes into the service.  These super cute babies both had accidents (floor cleaning required!) during the 1 hour service.  What are friends for if you can't make messes together. 

 

Bath time outside. 

We are all heading up to the lake again this weekend.  All of our old NICU pals are coming out to visit on Satuday!  It will be so nice to see all the nurses who took care of him for so many days.  He has changed a ton!