Sunday, January 22, 2017

Sunday Afternoon Magic

Sooo......Finley has declared he no longer wishes to be here in the CVICU and thus is being moved to the last stage of our hospital stay, Progressive on the 8th floor.

This happened much faster than we were thinking it would due to his recent lung collapse, but in the past 24 hrs he has managed to power through that minor set back and plow ahead!  The biggest task today was removing his final drain tube from his chest, which means he will sleep a bit better now.  And the other was accepting milk from a bottle.  So far, he's drank two times from the bottle today and kept it down just fine.

By this evening, we will be watching some playoff football (american football for our family/friends across the pond) enjoying our new digs.  The progressive floor will have a nurse but they are not dedicated like here in the CVICU as they will have 3-4 patients meaning Dana and I may need to start spending the night in his room now.

That all being said, this is all great news and now enjoy some pic's!


Lil man's war wound...not as bad as it looks guys!
 
Finally!  I got to hold my son....12 days old

Grandma Rita!
Feed me woman!

Bebe holding Finn for the 1st time as well

Grandma Rita enjoying time with grandchild #10

Dr Wilkes was a apparently big fan of Kringles so we pulled one from the freezer for him to enjoy!

Finn is showing us his strength!!

Finn had a great day yesterday and continues to look, feel and do so much better overnight and into this AM.  Mark and I have been attending 8:30 AM and PM rounds everyday in the cardiovascular ICU, where we are able to get the "big picture" of what's going on and a solid plan for the goals of the day.  Yesterday they decreased the amount of oxygen needed by removing the CPAP mask/head gear and switched back to the high flow oxygen.
Finn on CPap --  I was so happy holding him!
They continue to wean the oxygen and his stats are holding strong (for you medical minds out there - he is currently on 3L at 20%-- Much improved from his 9L at 100%).  This AM he had another scan of his lungs and it showed the right upper lung lobe has been re-inflated, mainly from the positional changes and chest therapy (basically the RN "pounds" his back and chest every few hours).  Though there is now a bit of fluid/gunk that has moved down into his left lower lobe.  The doctors and nurses do not seem very concerned about this and encouraged Finley to be out of bed (aka we get to hold him!!!).
They plan to take his last chest tube out today and that should really decrease any of his pain.  He will continue to only receive tylenol for pain management.  His IV in his wrist was also removed, this one looked the most painful to me, so I am so happy that one is gone!!
AND the BIGGEST news.... He has been getting breast milk in a tube for the last 24 hours and today they are going to trial feed him with a bottle very slowly to be sure that he is swallowing safely.  If he doesn't choke or cough, we can also try to nurse.
Taking his first bottle after surgery, he did great!!!
That is going to be one of the biggest hurdles prior to us going home.  Finn has to show weight gain from eating before he is allowed to leave.
We will be moving up to the step-down unit (8th floor) later today, which means less one on one care from the nurses and we have been encouraged to stay and sleep at the hospital so that we feed him just like we would be doing at home. It has been shown that babies being fed by their parents versus by a different nurse every few hours go home much quicker.
The nurse and doctors reminded us that we need to continue to limit his exposure to the cold and flu bugs that are rampant right now.  Of course we are going to LOVE to have visitors, but if you have been sick or been around sick kiddos, we ask that you visit at least a week after you have shown symptoms.
All in all, tons of positive improvements in the right direction.  I must go now... I need to go hold my baby and do "normal" baby stuff now.... Eeeeekkkkkk :) so excited and in LOVE!
A few more pics :)
Finn has a STRONG scowl.... wonder where he gets it from...


Switched to a big boy crib this AM! He looks so tiny in there!

Please continue to pray for strength and quick recovery!
xo
Dana

Saturday, January 21, 2017

Morning Rounds Update

Just had morning rounds with the Dr's and sounds like things are moving in the right direction.  Lil man's blood gases are better, cpap machine is doing it's thing however they did switch out the mask so its not as abrasive on the nostrils, skin color looks good and his heart functions continue to be solid.  Xray over the night was still showing a good amount of crap in that upper lobe lung however its getting better just taking it's sweet time.  Will continue with PT therapy (karate chopping his chest to loosen up the gunk) as well as continue lasiks.  The best part of the night was the fact he isn't in pain, he didn't have any morphine overnight and hasn't had any since lunchtime.  Only getting a bit of Tylenol which is awesome.  Shortly we will continue to whine off the flow/O2 coming from the cpap machine and we are starting his gut back up with dropping a tube past his stomach into his intestines to place some moma's milk in there.

All in all, we are moving and moving in the right direction just slow and steady but that's the way we like it.

Will continue to keep you all posted, thanks for all the notes/emails/texts/ph calls/visits and well wishes....our family will never be able to repay you all but we vow to never forget and always be there for you all as well ---- love you all.


Friday, January 20, 2017

2 steps forward 1 step back

Last night was a little rough for Finley...we were battling him being comfortable (kinda has a lot of tubes/wires sticking out of his body currently), making sure he wasn't in a lot of pain and of course him being hungry since he hasn't eaten since Tuesday night at 9pm.  Our goal coming into today was getting him back on moma's milk.  This AM upon arriving here we quickly saw his skin tone, O2 levels and overall comfortable level was not good.  We pressed on by starting off with removing a number of tubes/IV's from him in order to easily get ready for feeding then things kinda went south.  You could begin to hear a gurgling sound when he breathed, then his skin tone started going from a pinkish hue to blueish purple then after running a blood gas test he started becoming acidic.  They ordered up the mobile xray machine to check out his lungs and quickly saw his right lung (upper lobe) had collapsed due to liquid in there.

This sounds awful I know, but its not a terrible extremely bad thing...just means things are changing for Finley but the team here can adapt and work on fixing these issues.  They've swapped out his O2 tubes at his nose with a CPAP device in order to better force O2 down into his lungs as well as offer more pressure to expand that lung back open.  As for the fluid in there, they are doing some therapy on his chest which looks/sounds worse than it is to get him to loosen up that gunk and get him to cough it out as well as some deep suction.

As of right now, he has responded positively to the CPAP device as his O2 levels are much better however we're still working on that fluid in the lung but that will take a little longer so we just need to hold tight.

So, in closing we have to appreciate he just had major surgery only a day and half ago....this is going to take some time to heal.  Yes, it's difficult to see him not in the best place right now.  For a parent, it's the perfect definition of being "helpless".

It would be naive of us to celebrate after having the surgery b/c it was a success....we have some way to go and we need to get back to where we were yesterday afternoon now before we can move forward again.  Cruel I know but we will get there.

lil man swaddled w/ new fancy cpap breathing device

Thursday, January 19, 2017

Finn-ster (nicknamed by his surgeon).... on The Up & Up!!

The last 24 hours have definitely been an emotional rollercoaster for us, but the nurses in the cardiovascular ICU have tremedously helped calm our nerves.  Finley is continuing to be a strong, rockstar!  He has made lots of progress over the last 24 hours.  After an exhausting morning and afternoon yesterday, around 2pm we were brought in to see Finley.  It was a definite shock but was something that many of the medical staff had prepared us for. There were so many monitors, pumps, drips, bags of fluid and wires....his little body seemed to get lost in it all.


The nurse assigned to us was thebomb.com!  She went over every little thing when we came back to see Finn, described all medications, all IV line sites (he had 4) and went over the procedure for us again.  She had told us "goal" numbers that we were hoping to acheive on the monitors.  As we sat....and watched... and listened.... every beep and ding made me look at the monitor numbers and ask the nurse "Why is it dropping?" "Is he ok?" "Is this normal?" "Is he comfortable?"  As Mark likes to say, I was trying to be the doctor and driving myseld MAD!  Mark had suggested that we head home around 7PM and of course mamabear resisted until around 8pm.  As I was falling asleep in the chair, I finally agreed and boy did that bed feel good!
I got up to pump around 2AM and called the RN for an update and she had said that all was well.  Finn had an okay night, he does not like to be turned or fussed with (it makes his stats drop unfavorably).  They did a chect X-Ray to check on the placement of the endotrachial tube (which is what is helping him breathe while sedated) into the lungs as well as the placement of the chest tubes that are draining blood and fluid from the surgical site.  Everything had good placement on the scans and his lungs appeared to be fully expanded without any fluid (amazing!).
Mark and I arrived back to the hospital this AM just on time for team rounding, which was awesome to hear from all the specialites involved with Finn's case (Cardiology, ICU Doc, ICU Nurse practitioner, Respiratory, Lab, Pharmacy and the nurse on for the shift).  It was awesome to hear all the medical jargon, it made me feel like I was back in my dietetic internship!  The goals for today were to wean Finley's ventilator and get him extubated (pull out the breathing tube).  The Doc and Cardiologist were VERY pleased with Finley's lab values, respiratory status and heart sounds.  There is a very small pin hole opening where the surgeons stitched up the hole between the chambers which could result in a murmur (very common), but all staff reported that they where not able to identify any murmur or other abnormal sounds when listening with a stethoscope.  Great news!!!
After rounds, Mark and I went home to reload our clothes and to of course see and spend some time with Olivia.  She was SOOOOOOO excited to see us and was just the sweetest thing ever!  Olivia has recently gotten into building things with legos, so Mark sent Olivia a package from "Finny" (as Olivia calls him) of a starter lego kit and she was so excited that Finny got those for her.  She was excited to build with her daddy!

After getting re-energized by the sweetness of our almost 3 year old and our sweet (neglected :( ) pup, we headed back to Charlotte for another 4 day stay.  When we arrived to the hospital we were greeted by a baby boy that looked a little more like our son, his breathing tube was out!!  He has a very swollen face from all of the fluids, but that should go away in a day or two.

He now has oxygen pumping though his nose, but he is maintaining his stats great!  Multiple other meds have been stopped and he is mainly receiving pain meds to stay comfortable.  The next hurdle is feeds.  They are going to restart his IV nutrition this evening (TPN and Lipids) and when the 830pm rounds happen tonight, we will be asking about placing a tube into his tummy to start dripping some milk to start up his gut juices!  Usually the biggest hurdle of sending heart babies home is the feeding after surgery.  We are so very lucky that we were able to bottle feed Finn prior to surgery for almost a full week.  That truely was HUGE and put him WAY ahead.  We are hoping that he will recall that suck swallow motion and then possibly be able to start with bottle feeds shortly.  It is hard work getting milk out of a bottle and much harder to breast feed, but we will get there eventually.  We always say, slow and steady wins the race.
Lastly, THANK YOU so much for all of the uplifting messages, texts, visits, prayers and SUPPORT. I do not think that we would be able to hold it together without having a major nervous breakdown without all of YOU!  As we continue down this journey, please help us by keeping us in your positive thoughts and prayers!  God has shown us that he is so so GOOD.  Finn's strength is a true testament of that!
Signing off for now! xoxox
Dana

Wednesday, January 18, 2017

Deja Vu

So here we are, playing the waiting game......again.

It was quite an eerie thing for me this morning as we walked through the ICU, pre-op room and watched our son be carried away from us.  Flashbacks were occuring from when was in those similar rooms with Dana's brain surgeries.  Feels like an eternity ago but actually only 4 years.  The end result for Dana has been nothing short of amazing.  I trust in my heart that this will produce the same result.

We prayed, we cried and we witnessed the world stop around us.
We have to remember this is a process and we are at step 3.  There are plenty of steps to go still but we are working in the right direction.

Can't help but think of one of my favorite books right now for Finley and working towards this a long time from now.

 "You have brains in your head. You have feet in your shoes. You can steer yourself any direction you choose. You're on your own. And you know what you know. And YOU are the one who'll decide where to go..."


If you want to read the whole story:


Congratulations!
Today is your day.
You're off to Great Places!
You're off and away!

You have brains in your head.
You have feet in your shoes.
You can steer yourself
any direction you choose.
You're on your own. And you know what you know.
And YOU are the guy who'll decide where to go.

You'll look up and down streets. Look 'em over with care.
About some you will say, "I don't choose to go there."
With your head full of brains and your shoes full of feet,
you're too smart to go down any not-so-good street.

And you may not find any
you'll want to go down.
In that case, of course,
you'll head straight out of town.

It's opener there
in the wide open air.

Out there things can happen
and frequently do
to people as brainy
and footsy as you.

And then things start to happen,
don't worry. Don't stew.
Just go right along.
You'll start happening too.

OH!
THE PLACES YOU'LL GO!

You'll be on y our way up!
You'll be seeing great sights!
You'll join the high fliers
who soar to high heights.

You won't lag behind, because you'll have the speed.
You'll pass the whole gang and you'll soon take the lead.
Wherever you fly, you'll be best of the best.
Wherever you go, you will top all the rest.

Except when you don't.
Because, sometimes, you won't.

I'm sorry to say so
but, sadly, it's true
that Bang-ups
and Hang-ups
can happen to you.

You can get all hung up
in a prickle-ly perch.
And your gang will fly on.
You'll be left in a Lurch.

You'll come down from the Lurch
with an unpleasant bump.
And the chances are, then,
that you'll be in a Slump.

And when you're in a Slump,
you're not in for much fun.
Un-slumping yourself
is not easily done.

You will come to a place where the streets are not marked.
Some windows are lighted. But mostly they're darked.
A place you could sprain both your elbow and chin!
Do you dare to stay out? Do you dare to go in?
How much can you lose? How much can you win?

And IF you go in, should you turn left or right...
or right-and-three-quarters? Or, maybe, not quite?
Or go around back and sneak in from behind?
Simple it's not, I'm afraid you will find,
for a mind-maker-upper to make up his mind.

You can get so confused
that you'll start in to race
down long wiggled roads at a break-necking pace
and grind on for miles cross weirdish wild space,
headed, I fear, toward a most useless place.
The Waiting Place...

...for people just waiting.
Waiting for a train to go
or a bus to come, or a plane to go
or the mail to come, or the rain to go
or the phone to ring, or the snow to snow
or the waiting around for a Yes or No
or waiting for their hair to grow.
Everyone is just waiting.

Waiting for the fish to bite
or waiting for the wind to fly a kite
or waiting around for Friday night
or waiting, perhaps, for their Uncle Jake
or a pot to boil, or a Better Break
or a string of pearls, or a pair of pants
or a wig with curls, or Another Chance.
Everyone is just waiting.

NO!
That's not for you!

Somehow you'll escape
all that waiting and staying
You'll find the bright places
where Boom Bands are playing.

With banner flip-flapping,
once more you'll ride high!
Ready for anything under the sky.
Ready because you're that kind of a guy!

Oh, the places you'll go! There is fun to be done!
There are points to be scored. There are games to be won.
And the magical things you can do with that ball
will make you the winning-est winner of all.
Fame! You'll be as famous as famous can be,
with the whole wide world watching you win on TV.

Except when they don't
Because, sometimes they won't.

I'm afraid that some times
you'll play lonely games too.
Games you can't win
'cause you'll play against you.

All Alone!
Whether you like it or not,
Alone will be something
you'll be quite a lot.

And when you're alone, there's a very good chance
you'll meet things that scare you right out of your pants.
There are some, down the road between hither and yon,
that can scare you so much you won't want to go on.

But on you will go
though the weather be foul.
On you will go
though your enemies prowl.
On you will go
though the Hakken-Kraks howl.
Onward up many
a frightening creek,
though your arms may get sore
and your sneakers may leak.

On and on you will hike,
And I know you'll hike far
and face up to your problems
whatever they are.

You'll get mixed up, of course,
as you already know.
You'll get mixed up
with many strange birds as you go.
So be sure when you step.
Step with care and great tact
and remember that Life's
a Great Balancing Act.
Just never foget to be dexterous and deft.
And never mix up your right foot with your left.

And will you succeed?
Yes! You will, indeed!
(98 and 3/4 percent guaranteed.)

KID, YOU'LL MOVE MOUNTAINS!

So...
be your name Buxbaum or Bixby or Bray
or Mordecai Ali Van Allen O'Shea,
You're off the Great Places!
Today is your day!
Your mountain is waiting.
So...get on your way!

Surgery Updates / Its Time

SURGERY UPDATES

348pm
Final update for this post.
We are in with Finley now and he is resting comfortably.  Ill share a pic later but i wont lie and say we werent shocked walking in and seeing our son.  Shock has worn off and we are just fine, the nurses are amazing and he is the absolute best possible hands now.   There is a ton of information they are going over with us but we will pour over it and be just fine.  Were headed in the right direction guys!!!!


1201pm
One of our surgeons just walked into our waiting room and supplied us with some very good news.  Finley is out of surgery headed up to CVICU for recovery.  The procedure of the complete repair went without any issues or complications and there were no unexpected events.  There was a tremendous amount of muscle tissue blocking the pulmonary valve that they removed and they patched up the hole with his own body tissue instead of a foreign material (like Kevlar).  Not sure what they used to increase the size of the pulmonary artery but will know once we get up there.  Our Dr said he is "rock steady" and did terrific.  Not outta the woods yet but another step in the right direction.

1037am
3rd check up call just told us he is off the pump meaning his fixed heart is working and they are going to start closing things up 😂😂😂😂

940am:
Just got another update right now saying they are still in there and all is going well.

824am:
Just received word that they have begun "the fix".

730am:
We got the green light and things are in process.  Finley is in preop and surgery should begin within the next 30 min.

will keep you all up to speed as it trickles our way.