Tuesday, January 31, 2017

A helping hand...

Since getting home we've had a lot of friends & family reaching out wanting to HELP us out.

First off, thank you so much...your willingness to reach out and help is amazing.  We truly know and can appreciate how lucky we are to have GOOD people like you.  THANK YOU.

Things are going well for the Degan clan, life has evolved slowly but surely into a new routine and the family members have re-calibrated to one another and found our embraced our adjusted roles.

Offering help is a great thing when you reach out --- but know that no matter how bad or tough you feel our road has been over the past few months know that we survived just fine, embracing it at times but never allowing it not to shape us.  We like to say our family is battle tested, we know when to put our shields up and come out bruised but certainly not defeated.

I could ramble like this all day, but the point I'm making is that the Degan clan is good ---- we are good.  There are others out there, that are not so fortunate.  If you truly want to help us, you would do so by helping the organizations that helped our boy come home, w/o them we would have failed.

Maybe our gift to the world is our resolution, strength and unity... and giving clarity to others who can't see it as clearly as we do in times of stress and crisis.  If you feel so inspired to want to help us, divert sending your gifts our way and send them where they will be needed so, so much more:

  • Levine Children's Hospital
    • The people that work here....there are few words to describe them, amazing doesn't seem to do it justice.
  • Ronald McDonald House
    • Being we lived outside of Meck county we could stay in at the RMH.  While we only were there to crash late night after lil man went to sleep, we got a solid meal every morning to start our days on a full tank.  It costs a lot of them to run the hotel like establishment and a lot of volunteers.  If you go through a lot of aluminum cans pop the tabs off, save them and give them to us whenever you think about it as RMH recycles those for $.
  • Camp Luck
    • Since we are new to this world of having a family member with a CHG we are just starting our adventure with them but this will be a great resource for us to draw upon as Finley grows up and needs his own support group of friends who know EXACTLY what he is going through.  
So.....the Degan clan is good, we promise but there are so many others out there who can benefit more than us and we can certainly work together to help those who are not as fortunate as we are.  

PS ---- If you want to help, Dana as you all know loves FOOD........... 😜

BATH TIME!!!

So fresh and so clean

"what....you gotta problem buddy?"

"I can't see the pictures O...."

Wednesday, January 25, 2017

Home

Wow....we are still in shock but made it home and Olivia got to FINALLY meet her little brother.  Holy smokes, I don't think I've ever seen her so very excited.

There aren't many words to describe this so I'll let pictures tell the story.

Finley ready to go home!



Papa Ron holding Finn for the 1st time while O reads a story




Helping mom w/ feeding Finn

O making Finn comfy with extra blankets


Together at last

EEEEEEEEKKKKKKK

Tuesday, January 24, 2017

Did I just hear "Going Home" ??


Whew the last couple days have been BUSY!  Besides getting minimal sleep (as all parents experience with a newborn), we have had a revolving door here at the hospital with getting started with the discharge process.  We have had lots of evaluations, watched safety videos, reviewed how to give Finley his medication (just Lasix - a diuretic), caring for his incision site, hearing test, scheduling doctor appointments that we have to come to over the next week and so much more.  I feel like my head is swimming and I am going to forget something.  But guess what?  It really doesn't matter because, we get to take our baby boy home after only TWO WEEKS post delivery!  How amazing is that?
The main goal to be released home was for Finley to gain weight.  He definitely held up his side of the bargain and has been drinking milk - about 2-3 oz at every feeding.  The requirements was about 1/2 - 1 ounce of weight gain in one day and Finley gained 3 ounces!  Wooo Hooo!  
We are so excited to pack up and start what we know to be our normal life as a family of four.  I personally cannot wait for Olivia to meet Finn.  She is going to be so excited!

I keep thinking to myself that his surgery was WEEKS ago, but really it was only 7 days ago?  Babies and children are amazing little things, that heal so quickly.  I am so blessed that I am able to supply Finn with lots of healthy antibody, calorie rich milk, there is no shortage of that right now! 
Here is a brief overview with pics of what we have been up to the last 24 hours:

Finn's first facetime video!  He was wishing his cousin Joe a happy birthday :)
Dinner at Luna's Living Kitchen - One of my FAVORITE places to eat!  RAW healthy, plant based food, YUM!  Kombucha as my drink of choice, of course!

Aunties are the best at manicures!  Finn was NOT a fan!

Speech Therapy evaluating Finn's drinking coordination

Occupational therapy working with Finn, he passed with flying colors!
Sweet Dreams :) 

Feeding Finn "side lying" to encourage safe swallowing. 

I cannot get enough of his sweet long fingers and hands.  He has me all wrapped up with both hands!
Time to burp!

AND last but not least a 90 minute car seat assessment to monitor Finn's oxygen stats while sitting in the car seat prior to the drive home.  He passed!
We are all exhausted!  Time for bed! 
xoxoxo Dana

 

Monday, January 23, 2017

Finn's first slumber party!

Last night we moved up to the 8th Progressive unit floor at Levine's Children's Hospital.  This is our LAST step prior to being discharged home.  The nurses up here have multiple patients in varying areas of the unit and they strongly encouraged us to stay with Finn as much as possible so that we are doing as much of the cares and feeds as possible to get prepared for going home.  Sooo.... Finn and I had a slumber party last night!  I was so excited to be able to stay with him, hold him, pat him to sleep, change his diapers and feed him, ya know normal parenting stuff that we normally take for granted!  Their biggest goal that has been expressed to us is weight gain and adequate amounts of feeds at each feeding interval (basically every 3 hours).  Finn started stirring at about 2 1/2 hours through the night and he has expressed a HUGE dislike of wet diapers, so I would wake him up and he would exercise his lungs during his diaper change and then he drank his bottles like a champ.  They had said that they usually have a feeding tube in the babies after surgery to feed remainder of bottles that they do not drink.  Unfortunately/fortunately Finn pulled his feeding tube out before he was trasferred up to the 8th floor.  The team they had strong faith in Finn to be a great eater, so they held off placing another feeding tube to see how he did with the bottles presented to him.  They basically have to treat him as a brand new newborn at this point and slowly increase his feeds since his tummy is not the true size of a 10-12 day old. Finn drank 30 ml (1 oz) or close to it, like a champ all 3 feeds last PM.  We have officially avoiding the need for a feeding tube!

This AM during morning rounds with the Nurse Practitioner, Cardiologist and Nurse, we had more good news!  Another chest x ray was taken and Finn's left lower lobe was much improved, still a little junk in there, but improved.  We were able to take off the oxygen and he is starting to look more and more like our sweet baby boy with less and less "accessories"!!!  Finn's overall continuous stats have been great (heart rate, blood oxygen levels and respiratory rate-- all monitored 24/7).  Speech therapy came to evaluate Finn's suck/swallow/breathe coordination.  She said overall he is not at risk for aspiration when he drinks (liquid going into his lungs when he swallows), but his breathing does get shallow and he fatigues before he is done drinking, so we need to work on his endurance.  We changed him to a slower flow nipple for his bottles and this should help him actually coordinate his suck / swallow better and then also decrease fatigue which in turns gets him to drink more.

Late this AM we went home for another refresh of clean clothes and we were in time to go and pick up Olivia from school.  She was so excited to see us and had so much to tell us!  It is so refreshing to see her and talk with her about everything she has been up to the last few days, oh to be a 3 year old again!  Olivia definitely tried to persuade her daddy to stay with her at home, "Mommy can go take care of baby Finny, right daddy?"  It is very sweet to see their bond!  While we were gone this afternoon, Finn continued to be a rockstar milk drinker, he downed a 45ml (1.5 ounces) bottle!  They also did another echocardiogram of Finn's heart today to get a baseline to compare to when he continues with his cardiologist follow ups in the future.  If Finn continues to eat (I have been advised to wake him up every 2.5 hours through the night to be sure he eats enough to gain weight) like the strong ox that he is, he just needs to have a consistent 0.5 - 1 ounce weight gain daily over the next few days to qualify as "nutritionally sound" and "safe for discharge".  I have faith that we will be home with Finley before the end of the week!

Similar to his sister when she was a baby - Finn has a very solid scowl - and he's not afraid to use it.

SCOWL!!!!!!

xoxoxo - Dana

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.

Tuesday, January 17, 2017

Our Surgery Time

As of this morning we have a surgery time for Wednesday at 630am.  Of course things can change but if it does we will relay it accordingly.

Dana and I will be able to see him off tomorrow AM.  That will surely be a difficult thing for us, but knowing he is in the absolute best possible hands is paramount.  His Doctors and Nurses are the BEST.  Once surgery is completed we will get transferred to the Cardiovascular Intensive Care Unit.

We are gonna try our best not to get ahead of ourselves with how long will recover take, how long will he be connected to a large array of machines, etc......baby steps.  Lets break this down in small incremental steps and not get ahead of ourselves.  Things pop up that we cant see coming during our planning process and we have to trust in this staff they are doing the best for him.

If anything changes we will relay ASAP.


Sunday, January 15, 2017

Timeline has been pushed back

First off, apologies for this post as when I originally was putting this together it apparently didn't save and thus an anonymous post with no content...alas technology is great but it doesn't always work.

That being said, the surgery date for Finley has been pushed due to him being in great shape and other kids in the NICU not being in great shape.

We could look at this as a bad this and be sad we can't get this process started but that doesn't really help the situation.

Instead, we need to think about this being a good thing.  It's good that Finley will be able to get more momma's milk, more time to grow, more time with us, more time with mom via skin to skin, etc.

As of now, it sounds like the surgeon is passionate about doing surgery while Finley port is still in and functional at his umbilical cord.  That cord is accessible for around 7 days so that would put us having surgery no later than Wednesday.  It's certainly not required to do surgery with that port as there are plenty of other options available but if it's there then why put another port in if you don't have too.

Today Finley was great once again.  Eating his milk very quickly and napping throughout the day.  This evening, Dana and I checked into the Ronald McDonald house of Charlotte and this will act as our headquarters for the foreseeable future.   The facility is amazing, the people are generous and we can't be more thankful than we are for the ability to stay here during this crisis in our lives.

Before calling it a night, we went to hang out with little man and there he was waiting up for us chilling in bed.  He had just finished eating, getting his bed sheets changed and was all tucked in and cozy eye's wide open.  From what we could tell...it's looking like this guy has Blue or Green eyes but I suppose things could change still.  Olivia's eyes were blue from the get go and they never changed so i'm going to guess it will be the same for Finn.

Here are a bunch of photo's from the past 24 hrs...sorry the posts haven't been as plentiful but trust me when I say that is really good news.  Everyone in the NICU loves it when babies in there are uneventful.....Finley is that to a "T" and we are thankful for that.

Keep the prayers coming, keep the heavy doses of happy mojo coming ....we'll take whatever we can get.  It's going to get a bit harder soon but in the end, this little man has what it takes to get through this with flying colors.  I look at him and just know in my heart he is going to be just fine and it helps me to know he will never remember this ordeal.

Hopefully Monday and Tuesday are very uneventful and i'll try and get more pictures out then as well.




Olivia drew Finley a picture for his bedside

Classic Degan Sleeping Pose...

Smiles for Uncle Brian

Finley's cousins Porter & Joe made a couple pictures too


Pretty sure his eyes are blue!



Friday, January 13, 2017

Friday Night Update

Today was another great day.

While being here in the NICU we've been taken care of so well....I can't express how flipping amazing these nurses are.  The skill, the care and "want to" in being able to help us constantly has exceeded our expectations.  Big shout out to our favorite nurse Ashlie...she is the bomb-b.

Now, onto Dana's status.  She has started feeling much better and hasn't been experiencing the pains she was having yesterday.  We aren't really sure if it was from overdoing it and walking around too much or if it was just the anesthesia side effects and now is wearing off finally.  Regardless, we are very thankful for that.  We're still working on getting some other minor things fixed up on her but long story short the doctors are confident she'll be just fine.

As of right now, it's looking like Dana will get discharged tomorrow sometime as a patient so that means we will be migrating from a room 1 floor above Finley to a room 2 blocks away from Finley at the Ronald McDonald House in Charlotte.  Today, we found out we have a room and we should be able to check in on Sunday.


Now onto the main event, Mr Finley James Degan :).

Little man (or I should say Long man...his hands and feet are very long....wonder where he gets that from?!?!) had another great day.  After Dana was able to finally get skin to skin contact with Finn yesterday she has experienced a milk explosion which is awesome.  Finn has taken a big liking to his momma's milk too and crushing the bottle very quickly only to do a swift burp followed by passing out via milk drunk.  AWESOME.

Had more chats with cardiologists today and they are still very happy with his condition and love that he is stable and just enjoying his nice heated bed, sleeping a lot and drinking momma's milk.  Today we replaced an intravenous line that was supplying the medicine/nutrients to him located at his belly over to his lower leg in order to gain the ability to pick Finn up easier.  Previously it took quite a lot of work to make sure we didn't disturb the line at his belly and now being that its on his foot it shouldn't be as much of a risk.  Hopefully no complications arise from that new line b/c things can always arise weather it be risk of infection, clotting, etc when doing a new line.  Regardless, a new line was going to have to go in b/c his belly line was going close up due to the umbilical cord drying up.

Still no firm date for the surgery but expect it to be Monday/Tuesday AM.

Lastly, our pastor from DUMC came by to visit us and see how we were doing and we had a great visit.  Towards the end of the visit we decided now would be a great time to go ahead and have Finley baptized.  So, Dana, Sally and I were able to have a special little baptizm in the NICU.  Thank you so much Sally!!!

Picture time!!!!!!!  All these were taken from today =

So cozy!

Story Time with Dad

Milk time

Pastor Sally Langford @ DUMC


Happy Time With Mommy
Dad feeding Finn w/ some momma milk
Finn sucking down 10ml in 1 min with a heck of strong suction