Ready for my close up!!

Ryder is having a good day today - he had a big morning, with a full professional photo shoot!  He was a ham, lots of smiles and clearly liked being the center of attention (as he does every day).  His big sister for the first time today realized she may have to share the spotlight and was not too keen on the idea, but she did great holding her baby brother once the camera was back on her.  Not suprising.  After all that activity, and doing a fantastic job laying on his tummy for 15 min without screaming, he is pooped and is taking a nap, with NO oxygen on!

His blood cultures ended up growing enterococcus again (same as last round) but for now this is being called a line infection and he is on ampicillin for a couple weeks at least, final plan TBA.  He hasn't had any more bloody stools or fevers so for that we are very thankful!

Ryder's pictures should be up later today on http://www.happychickphoto.com/, password is our last name.  Enter at your own risk - obviously Ryder & Addy are adorable but Ross and I ended up being in some of the pictures too and we are considerably less cute.  Well...Ross would say "speak for yourself" :)

Love you handsome...

Ryder updates:
Ryder's second surgery has been "penciled in" for August 13th...if you are in a praying, wishing or hoping mood, we will be hoping for:
- No more fevers (temp this morning of 38.4, no urine infection or pneumonia so hoping for negative blood cultures and he is back on antibiotics for now)
- To FEEL better, poor guy - so fussy today
- No more blood in the diapers, no matter what the reason
- The surgery to still be able to happen, and the surgery to go well
- Our baby boy to be able to come home after that surgery

We are very excited Ryder will be getting his official pictures taken on Tuesday (you know, I haven't taken very many) and for his baptism on August 4th here in his home away from home!  If he is doing better, there may be another field trip in his near future!

Goodnight sweet boy...I love you my handsome warrior

Ryder's first walk...

Sometimes it feels like you are just stuck.  It doesn't matter how hard you fight to move, or whether you are fighting against something or for someone, you just tangle yourself up further...unable to go anywhere.  This feeling is so frustrating because it seems like you should do something, anything, something more, better, stronger, faster, and all those things you try end up being useless.  Or worse, they are counterproductive, and they don't take you to any place except a state of disappointment.  Sometimes it is best to stop fighting.  When you do this, some amazing things can happen.  When you stop trying so desperately to go somewhere, you may just end up with an opportunity to move...



Out of your prison...



with eyes wide open to see some amazing things are happening all around you...

and when you aren't so stubborn you have more time to be thankful for them.

When you learn a little to stop attempting to control everything, you will be given the chance to walk somewhere!  Even if it is only in a circle around the PICU...

Happy Sunday!

The BIG meeting...

...didn't happen.  We have been waiting since Friday to for "the discussion" about when to do Ryder's next surgery.  There were some calculations that were left to do after the heart cath on Friday, then he was on the docket to be discussed at the cardiac conference today - this is where the cardiology consult doctor(s), nurse practitioners, surgeons and critical care attendings meet to discuss upcoming/potential surgical cases.  Apparently all along Ryder's surgeon was going to be out of town today.  He knew that but apparently nobody else did.  So, that sucks...we were both sitting here for rounds hoping to hear something/anything regarding ideas on his next surgery or at least the next step but nada for today.  Maybe will be tomorrow, or maybe he will be discussed at the next official conference on Friday...

In other news Ryder finally was on the weight upswing yesterday weighing in at 4.6 kg (10.12 lbs).  He got restarted on enteral feeds again today at a low rate, so hopefully these few xtra calories will help put back on a little weight.  His oxygen is doing great - he is now only on 0.5 L via a nasal canula - for those of us in adult medicine - I know!!  Half a liter sounds goofy - but sometimes they even will put little kiddos on a quarter liter.  He has been a little crabby today - hopefully he is just hungry and will soak up those calories.  Funny on rounds yesterday apparently a message got passed along that mom didn't want him to have any more "sweetease" - this is a sucrose solution that you can stick on pacifiers to calm babies before you do something mean to them, basically.  The interesting way this made it to the team was the night before I told the ICU fellow I was going to stop giving him the sweetease and start dipping his pacifier in butter.  Hmmm.  I am slightly concerned that they now not only think I make [probably] inappropriate jokes but that I am actually insane.  Anyway, for today will be trying not to worry about this discussion tomorrow/Thurs/Fri ? about the little guy's surgical fate and concentrate on the occupational therapy and enjoying the cuteness...look for another update on the for-real big meeting later this week!



Has been all too long since we had an [almost] naked baby pic!!

Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own. -Matthew 6:34

Baby's first heart cath

Ryder just got back from the cath lab and seems things went pretty well considering he is a complicated little guy.  His lower extremity veins are occluded from his prior clots etc. and they had some trouble getting into the vein in the R neck so went in via L.  Despite some trickiness getting the catheter where it needed to go there were able to get most of the measurements they wanted.  There were no arternial stenoses stented - they were thinking about trying to balloon the R pulmonary artery (which is narrow near his BT shunt) but they couldn't get the catheter quite there so this was deferred.  It may have provided some temporary help with his oxygenation but in the long term probably not a huge issue as this is in an area he will theoretically have surgery later.  He still has a fair amout of tricuspid regurgitation but pump function overall is good.  His pulmonary vein pressures look low enough to go for the next surgery but there are a few other calculations that still have to be made on the measurements taken today.  We won't know anything more about any future potential surgeries until after the next heart conference (Tuesday).  So if you were wondering if he is going to have this Glenn, when it could be, etc. we won't know until next week...

We are very thankful most off all that so far no complications - he didn't have any arrhythmias or require additional vasopressors during the procedure!  For now, Ryder is still intubated, waiting for a paralytic and some sedation to wear off...he did just take a couple of his own breaths though so we are on the right track!  If you are in a praying mood - pray for him to get off this ventilator again soon before it becomes another permanent appendage!!  All in all a good [Friday the 13th] so far for this little warrior!!


Dinosaurs make you big and strong, in case you didn't know that.



Heart cath tomorrow

Ryder's big news is that he is having his heart cath tomorrow.  In other news this week:  he hasn't had any more bloody stools, so has been on a little milk + his TPN and IV lipids.  Still trying to take it easy on his gut so all of his medicines are also IV for now with a plan to go back to oral eventually once this procedure is done (assuming all is otherwise well).  His oxygen is doing well though and he has been on a regular nasal canula all week (the kind you could actually take home if you needed to).  His CXRs are still good.  As far as we know his heart is doing ok too!

The scariest part about this heart cath I think is he has to be re-intubated for it.  I am personally hoping nobody from anesthesia notes that he has had trouble getting off the vent so they will just pull the tube when it's through without a second thought...we'll see.  A close second to that is to find out what it this will actually show...basically we are looking for the pulmonary pressures to be low enough for the 2nd surgery (the Glenn) to be an option soon.  We are hoping for no arterial narrowing elsewhere that would have to be intervened upon or if it is there that any interventions can be done easily.  So...we wait!  Procedure is scheduled for 9:30 am tentitively...

We will be praying for all to go well tomorrow and would appreciate any/all help in those prayers!!

Melt my heart...

Not sure what to say tonight...but these are my a few of my favorite pictures of the week...

Happy 4th!

Taking a swig of the nasal canula humidity.  Certainly probably some sort of infection risk here.  But funny and incredibly adorable.  Even after you pull it out of his mouth 7 million times and put it back in his nose.  Those eyes..."What mommy?" 

 
 



Ok, not the best photo I have ever taken, but just LOOK at his face...pure joy!  Seriously!!  Don't you think he knows that's his big sis?  I don't know whether to laugh or cry thinking about their little moment...probably both.



Sitting up so big in his bumbo chair (& he could not come close to sitting up like this just a week ago!)







Ok, this picture is Addy from 3 years ago this week...but just proof that it is sometimes totally worth it to save a random bib for three years...



Time stands still

The update on Ryder:  he is back on milrinone - Friday his BNP (heart failure marker) was sky high -- it's back down to close to normal now...I want to believe that it came down so dramatically and so quickly there is no way he really needed milrinone to do that.  Seems I am wrong though.  Ryder had a bloody stool last night; then one more blood streak in the diaper.   His INR (blood thinner level) is in the appropriate range, so it wasn't from that.  The thought is that he may have had poor blood flow to his intestines when the BNP was high - when his heart was not pumping as strongly.  He is off his feeds today and on TPN and lipids again.  His xrays look fine, and hemoglobin is stable.  Not sure how long he will have to be on TPN yet, don't know when his cardiac cath is yet, and certainly don't know why his little heart was worn out last weekend, so please don't ask.  Some things just are.

He looks great though.  You would really have to see him in person to believe that this little warrior survived ECMO, etc. etc.  He likes to sit propped up on his boppy in his crib and watch everyone walk by his room...he has favorite toys - his red bird and now his baby einstein lion, who he likes to pet.  He has figured out that if he pulls his nasal canula down into his mouth and sucks on that instead of a pacifier he gets a drink of water (from the humidity).  It is incredibly adorable.  He flirts with all the girls.  He likes to read books , elmo is his favorite to look at - because his favorite color is red.  He is fine with not eating today, but felt like he didn't need his NGT so he yanked it out when daddy wasn't looking.  Sneaky guy. 

Well for now we aren't going anywhere.  Weird, it just feels like time has stopped in this room.  Everywhere else it keeps moving--we have gone through winter, spring and now are in the dead of summer.  Ryder seems perfectly content in his little 5x5 ft. world though - it is after all the farthest his oxygen can stretch.

"What do you do when time stands still?
Should you pray for another moment to kill?
Where can you go when there's no place to be
But sitting right here watching you watching me."

Ryder, 4 mo, working out with Mo, his occupational therapist