You've come a long way [3 months] baby!

Are you kidding me?  Our baby boy is now 3 months old!!  Its amazing how time flies and yet goes soooo slow.  Ryder is a regular world traveler, having already been to the fetal health center, the NICU (2 different pods), PICU 9, 17A, 20 and 16 AND has been to radiology.  THREE times!  He has been a pretty busy guy lately...he alternates his free time between crib, infant positioner thing that looks like a foam carseat,  mom & dad's laps, and his bouncy chair.  Just don't turn the vibrating function on because in his opinion that is just NOT right.  He has come down by 1/2 on his milrione (heart function medicine) and is down even more on his oxygen help.  He is playing with toys (kind-of), smiling more and has already perfected his fake cry, which means - excuse me, I'm awake - somebody throw on an isolation gown and come and talk to me! 

I just watched this amazing baby boy try to drink a bottle for the first time.  Verdict - bottles are also NOT right!  Seriously - poor guy - was starved from birth and never had anything in his belly until a week ago and stick a bottle in his mouth?  He was hungry, did like the taste of milk but he looked at the occupational therapist like she was a crazy woman when something CAME OUT of that weird looking pacifier in his mouth.  He did eventually swallow it so she's going to let him try again this afternoon.  I was anticipating this would take a while though, Mr. Warrior likes to take his time with new things.  A lot of time.  But in the last month...no major setbacks.  That is awesome; you have come a long way little warrior!


3 months

A little blurry, mom is funny without camera but with camera is a scary alien.

So what else is new?  Addy is a fiesty three year-old.  Super fiesty.  Good thing she is still adorable and funny.  Last weekend was the first time I had to be at work all day Sat and part of the day Sunday so Ross held her hostage in Ryder's room for much of the time.  A brave soul.  She played nurse, wiped down all the furniture with sani-wipes and watched a whole lotta tangled (Thanks, Kate & Norah!). 



Daddy, I hear baby Wyder's shunt murmur!

Friday is the big day for work - I start with my last fellowship month of consults at KU 6/1-7/1...not really sure how that's going to work yet.  Figure if I can get home by 6 something, will still have 2 hrs with Addy and then spend nights with Ryder?  This is the most awesome childcare you could imagine, though.  It will be just like Addy's first week of daycare, only instead of a sheet going home with the number of bottles and wet diapers I can get report on Ryder's venous oxygen sats and respiratory rate.  Pretty thorough.  Ok, back to my chart review...wish us luck for the next 4 weeks...praying for Ryder to come home, Addy to stay healthy, and for the world not to run out of caffeinated beverages.  And if you work at Mercy - the pound of chocolate covered espresso beans I have stashed in here are not food FYI (food is not allowed in the PICU) - they are medication.  Please don't take them away!  We've come a long way - but there is still a ways to go...

Mr. Handsome

Mr. Ryder has had a good last few days...some milestones:
- Finished antibiotics.  All 42 days of them.
- Down on his milrinone (heart med) - a HUGE step to turn it down even a little.  Has been on this one since 3/6 post-surgery
- On bolus feeds - now getting food over an hour into his lil belly.  That's almost like drinking a bottle...really, really slowly
- Sat in a bouncy chair.  And fell asleep in it.  Without dropping his o2 sats!
- Can grip onto paci with his hand...and take it out of his mouth...and get really mad when he can't put it back in his mouth...fairly typical baby-ness. 
Anyway, there is only one certainty...he is really stinkin' cute!

Wow, am I really that handsome?!?

Yeah I am!

Say what?  There's a hint of double chin there? And what is the deal with this excessive tape on my face?



Mom enough...

So very greatful to be a mommy this week.  Just couldn't get enough of Ryder's smiles on Sunday - he knew he was a handsome little guy, too and flashed his new smile at everyone who came in his room.  By the evening, he had a big gummy grin.  He wore himself out though....

Mother's day night, tired little angel...keeping guard over the paci

So, he went back on the dreaded bipap mask overnight through Monday.  Smiles [temporarily] on hold.  He had a quiet few days back on the Sipap, then to CPAP yesterday (acronyms for various breathing apparatuses). 

More elephant nose.

Yesterday evening, more smiles again!  Today he made it back to his nasal canula and has had a great day so far.  ENT came and scoped him and his vocal cords appear to be working.  He also had an upper GI and does not have any reflux on that so he is officially cleared to try oral feeds - not sure when that will be though - was too excited to ask! 

Little warrior, not quite keen on the camera yet

But onto the mom enough topic...timely title, Time Magazine...I ask myself this question every night before I fall asleep.  And usually again when I wake up on the hospital couch and go home and go back to sleep or wake up on Addy's floor and then get up to go back to sleep in our bed.  Who really knows if this is good enough, right?  Last week I officially started back to work, but luckily I am doing an online chart review this month that I can conduct for the most part sitting here in Ryder's room with my bedside table-converted desk.  I have no idea how people really "work" from home, by the way, this seems close to that and it is not easy - lots of visitors, insane beeping, and so I am just trying my best to keep plowing through charts while intermittently tending to Ryder when he is fussy.  I hope I am doing enough.  Ross is on service this week which is even more crazy...it's nice that he has been able to come back and forth to visit so he can keep updated.  Since everyone knows where we are his team can also come down and do check-out rounds outside Ryder's room - weird, perhaps...but that works well enough too.  So are we enough?  The house seems clean enough, we have enough food in the fridge, and we are sleeping enough to be able to show up every day...

and Ryder is making enough progress.  Still very slow progress, but if you think about what he is up to today compared to a week ago, and the week before that and so on, it seems even more amazing.  So hopefully, for today, I am mom enough, or just plain enough.  With regards to the whole parenting "style" discussion, I am not sure of most things but I am pretty convinced that no matter how noble, outstanding or interesting your mommy skills are - if you make it to the cover of Time Magazine, you may be too much.  For now, enough will have to be good enough and we can be thankful that He is enough even if we fall short.

The only thing left to think about this weekend, then, is if Addy is fed enough...probably so, Miss still 95th percentile.

Addy's daycare sheet...note how many breakfasts and lunches she ate...

It just keeps getting better...

Mother's Day Blessings:



Mother's Day 2009 - Addy coming home from the hospital



Mother's Day 2010 - Addy learning to walk



Mother's Day 2011 - Addy playing w/her new toys with family in town for her 2nd bday



Mother's Day 2012 - Need I say more?



Happy [Early] Mother's Day!

Ryder is having a fantastic day today.  In fact, he's had a great week!  He has been doing well on his antibiotics (less than 2 wks left to go on those) and blood thinner and will be off IV nutrition tomorrow and on fortified milk only.  Will be so fun to see 2 more things gone off his IV tower.  To think - he will soon only have half of one of these towers...when he started there were 4 of them!!!

Ryder has made it all week on his SiPAP (breathing mask) going down slowly each day on the rate, and today he has made it all day long on a nasal canula.  He is probably working a little harder and a little piece of lung isn't fully expanded on his chest xray but overall he looks AWESOME, his blood gas looks better than the last one on the ventilator and can't tell you have good it is to see most of this little warrior's face again.  I have been grinning like a crazy lady at him for a couple of weeks, hoping to see one in return once he got some of the tape off his face...coming close - what do you think??? 

Hopefully we'll get a better family pic soon (w/o the electrical outlets or Ryder's trail of IV tubing) but a very Happy Mother's Day indeed!

Only 2 more words:  SO THANKFUL!  But I mean them so much they deserve to be repeated a few times...SO THANKFUL!  SO THANKFUL!  SO THANKFUL!  SO THANKFUL!  SO THANKFUL!  SO THANKFUL!  SO THANKFUL!  SO THANKFUL!  SO THANKFUL!  SO THANKFUL!  SO THANKFUL!  Happy Mother's Day!!

Happy Birthday to Addy!

Since it's now 1am, Ryder has officially made it 6 days without his ventilator!  He is still on a breathing tool called Sipap which consists of a tiny nose mask that gives him some help but he is doing a good deal of the work on his own...now just some waiting and hoping that he can just get a little bit stronger.  Just enough to do it on his own...

All else is very stable, still on blood thinner, antibiotics and TPN + milk to keep his calories up and of course just as sweet as can be!  The world's cutest little warrior.

In other news, Addy is now THREE!  Three years old, I can hardly believe that she's so big.  Being three, she has a lot to say and a whole lot of personality.  More than she knows what to do with most of the time.  We have been spending some free time in time out, and so have Addy's babies.  It turns out that they also sometimes have trouble listening.  She surprises us with new things every day.  She likes to find As in books and on packages and asks "Why is there an A here?  A is for Addy."  She also looks for Rs for "my baby Ryder".  She can now draw a person with a head, legs, and arms and can swing by herself!  She had the best weekend ever with her two favorite people - her cousins Blake & Kelsey and a trip to the zoo, swimming in the hotel pool, visit to the aquarium, the twain westauwant and a backyardigans birthday party complete with her 4 boyfriends - Cohen, Luke, Nicky and Logan and a bouncy house followed by chocolate cake!  The only thing missing was her baby Ryder... 
 


Pure bliss!

Whoa!

Chocolate cake with green icing!

  

Party hat for our little warrior - now 10 weeks old! 

 

2000 words...

It's a good thing pictures say 1000 words because I certainly don't have that many...and impossible to put into words how much joy and heartache can come in a 3.7 kilogram package...

Ryder, this morning - age 9 weeks, first time in a shirt (thanks Auntie Sonja!)



Ryder post-extubation [#2], ativan-napping, sweet beyond words...

 Ryder is 6 hrs post-extubation now and hanging in there, but still working hard to breathe; he is pretty fussy and doesn't seem to like the feeling of doing all the work himself yet...thank you for all the prayers thus far; please pray he can keep up his strength and stay calm enough to weather through this next little storm!