A follow-up with our cardiologist

This past Tuesday AM we had a regularly scheduled followup with our cardiologist, Dr. Greene of Sanger clinic with Carolina's Healthcare System.  Finn has been growing like a weed, sleeping great, eating great and overall a content and happy baby, but there's always that doubt in the back of your mind about something that you are maybe missing.  The first thing that they checked was his oxygen level, since he was all cozied up and napping when we arrived, the nurse just took his oxygen reading on his wrist, of course it fluctuated up and down... kinda scary seeing a reading in the 80s... but then as it was consistently in the 96/97 range, I was reassured that anything 97 and over is normal... phew!
Then, I stripped him down to his diaper and weighed him.  He came in at 13 pounds on the button and 24" long.  He's definitely getting his baby rolls and the scale is showing it!  The next thing we did was an EKG.  Finn got all hooked up with sticky electrodes and he was such a champ.  He didn't make a peep.  I'm pretty sure he was thinking, "Seriously is this all you got... I've been through way worse!"

#notimpressed

After that, the nurse took the EKG results to the doctor and we waited for a bit.  Finn was all smiles and coos and really is a great mood.  I was preparing him for a possible echo, he was nice and milk drunk with his paci on standby and super cozy in his blankie.

Look at that scar!  Healing up quite nicely!

 Dr. Greene came in and asked how Finn has been doing at home.  Overall, I feel like his is a regular baby without any special needs.  He's been eating every 3-4 hours, has been sleeping 6-7 hours straight through the night, is content a good majority of the time, a little high maintenance in the diaper department (surely doesn't like a wet diaper and he lets us know about it!)... overall a regular 3 month old baby!  Dr. Greene said that the EKG is exactly what he would expect with the specific heart defect that Finn has.  He hears a small murmur, exactly what he would expect to hear.  He also said that to do a complete fix on this specific defect in a newborn is not that common, but he believes that our surgeon, Dr. Maxey did an outstanding job and just as we have been expecting, Finn should not need another procedure until young adulthood (late teens/20s).  Since there are no problems or anything to be concerned about, there was no need to do an echocardiogram on Finn today! yay!!!

Dr. Greene said that he is in great shape, plumping up nicely and if he wouldn't have known he had surgery, he would think that Finn is just like any other baby out there.  

Since the cold and flu season is coming to an end, Dr. Greene said that we can loosen up on our visitation, unless of course you are currently ill with sneezing and coughing every couple minutes.  We are so excited to finally let friends and family meet Finn!  If you wanna schedule a visit, please let us know!

I hope everyone had a blessed Easter!  Finn's 1st Easter was uneventful, he didn't even get to see the Easter bunny, but we will make that happen next year I think, I'm sure he will be terrified! LOL

XOXO

Dana

We have a 'normal' baby boy on our hands!

The last week the Degan household was non-stop!  Olivia continues to love her baby brother, she has not asked us when he is leaving yet.

February is Heart Health month and along with that, Feb 7-14 is Congenital Heart Defect (CHD) awareness week.  Did you know every 1 in 100 babies is born with a heart defect?  Isn't Finn's scar looking quite nice?

Finn met his the cardiologist that will be his lifelong doc this week, on Valentines day actually.  It was a great visit, more on that in a bit....
This week was not only a celebration of those we LOVE, but also Finn's big sis, Olivia's 3rd Birthday!  We had a super fun celebration at her school, with all of her school friends.  Mark and I brought a treat to school and Mark read a book to the class.

Then Olivia's Auntie Cindy, threw a "surprise'" birthday for Olivia at her house.  Since we have been restricting visitors at our house, we got a sitter for Finn and we celebrated with family and one very close family friend at Cindy's house.  Olivia felt very special with lots of pink and purple balloons, her favorite meal of cheese burgers and mac and cheese (with veggies of course), kids bop dance party music and lots of gifts.

Olivia enjoyed her special crafting time with Papa Ron making valentines for her classmates for their school party this week.

We made a special trip to MegArt, a pottery shop, to get a special plate made with Olivia and Finn's feet and hand prints.  Olivia was a pro and knew just what to do, she said she had lots of practice at school.  Finn on the other hand... he did not enjoy the paint on his hand and would not unclench his fist to get a hand print.  Talk about stubborn already!!!  We went back later in the week and got one when he was sleeping!

Last but not least, Finn's amazing doctor visit.  Honestly I was super nervous to come to this visit.  We had mostly transitioned Finn to 100% breast feeding versus bottle feeding (exceot when Mark feeds him) and it's just so hard to know if he is getting adequate calorie intake, especially since he always falls asleep mid-way.  If anyone has advice on how to keep a newborn awake through a feeding... I'll give you $20!  The first thing they did was check his oxygen saturation, a test that measures the amount of oxygen being carried by red blood cells.  Most commonly they use a device that shines light, usually strapped on his foot or wrist.  The device measures the amount of oxygen in the blood based on the way red blood cells carrying oxygen absorb and reflect light. This always makes me super nervous, since this was one of Finn's main problems that they had to fix in the pulmonary valve output of the heart.  BUT Finn continues to show us how awesome he and the AMAZING surgeons skills that fixed him and his level was 99.  Really cannot get better than that (unless he was at 100)!
Next was his weight.  Two weeks prior Finn had weighed 7 pounds 1 ounce, not even to his birth weight yet of 7 pounds 4 ounces and he was almost 1 month old.  She weighed him and I had anticipated maybe a 1/2 pound gain.  Then she said, 8 pounds 10 ounces.  WHAT???  I said "Are you sure? That cannot be right."  The nurse said "Yup, he's a big boy! He gained 1 1/2 pounds over the last two weeks!  Keep doing what you are doing!"  What I was doing, was getting lazy and not wanting to pump, so I had just been breast feeding whenever Finn cued that he was hungry. YAY!  Go Finn! And YAY, I don't have to pump anymore!
Last, we had a mini echocardiogram done, an ultrasound of his heart.  They had done one right before he was discharged from the hospital to have as a baseline for comparison sake.  They were looking for fluid around his heart, and another win... it was not there!  Yay again!  We had continued on lasix medication (a diuretic) since leaving the hospital and since there was not any fluid, we were able to stop that medication altogether!  Now he really is a NORMAL baby!  No meds, able to gain weight and breastfeed as he requests and of course waking every three hours (to a T) through the night.  Some people may get upset and exhausted when they hear that cry in the middle of the night (and I do as well at times), but I was told by a very wise mother of 2 grown boys, that I should soak it all in, enjoy the middle of the night feedings when it is just Finn and I.  Is is so quiet and I love to hear his baby coos, it really melts my heart.  Also when life feels overwhelming and crazy, stop and love the madness because I will blink and they will be grown.  That is such truth and it is really such a blessing to be reminded of this every once in a while!

Grandma Rita and Papa Ron have been at the house helping since Finn was born!  Life savers!

We experimented with allergy friendly baked goods this week, egg free cookies!  Perfect for eating raw cookie dough! 

We love to embrace Olivia's curly locks, which we think Finn might also have some curly hair too, I swear I've seen some 'wings' when I give him a bath and wash his head :)  Here Olivia was fluffing her hair.  Cindy is convinced that she will be the perfect stand-in for the musical Annie one day with those fluffy curls!

We continue to thank God that he placed us exactly where we are with the exact little family that we have.  Olivia, though we fully see the 'terrible 3s' from day to day, makes us laugh - like deep belly laughs- daily and Finn, well he is just perfect and has so many more lives to influence with the journey he has already been through! It is so easy to go through the motions and take life and all that we have for granted.  I hope that this is a small reminder to hug those sweet babies (yours, your grandchildren or nieces/nephews) that are in your life.  Life is too short to take these little shining lights for granted.

xo-
Dana

Getting check-ups and breezin' through!

Today was check up #2 since we have been home.  Last Friday, we went to see Finley's pediatrician, she mentioned that she was thoroughly impressed with his progress and when she listened to his heart, she could *barely* hear a murmur, really only knew it was there because she knew to listen for it.  He has gained weight since leaving the hospital **SCORE**!!!  She emphasized limiting Finley's exposure to large crowds, no kids at our house until mid-March and if anyone has any cold symptoms to stay away.  She said even the slightest cough, creating airborne droplet germs, could land Finn in the hospital and on breathing treatments.  We have been overly cautious, especially mama-bear, but after cold and flu season, game on!  We want everyone to meet Mr. Finnster

Today was our surgical consult, to check on his incision.  We got the go ahead to fully bathe him, I'm so excited ... it's the little things.  Our Nurse Practitioner also told us that we need to treat him like a normal baby, no restrictions -- tummy time, normal pick-ups (we were not able to pick him up under his arms or pull his arms overhead when dressing), breast feed as much as I would like because he continues to gain weight (we were limiting to 1-2 times per day and the rest bottle feeds).  The best music to my ears today was "And when he gets older if he wants to play football or soccer, or any sport, let him.  He is in no way restricted.  If he tires quicker than other kids, that is just Finley."  He's a normal boy and that just makes me so very happy!
While I was at the hospital, I dropped off a little treat basket for the nurses that gave us outstanding commitment and care while in the NICU at Levines Children Hospital in Charlotte.  We had thought to bring doughnuts or other unhealthy treats, but with nurses working 12+ hour days, they need healthy foods to fuel their bodies.  Sometimes they rarely even get a second to grab a decent meal, so we stocked them with some healthy Shaklee treats and healthy energy boosters (versus turning to coffee for a caffeine boost).  Of course we had to throw in some dark chocolate treats too!  I hope they enjoy it!

On the home front we are adjusting to everyday life. My mom and dad (Ron and Rita) are still here helping out with the kiddos.  Dad has been taking Olivia to school and picking her up, Thank goodness because I am barely out of bed by the time they leave for school since Finely is very diligent about waking up to eat every three hours day and night.  Olivia enjoys helping from time to time.  We are working on being gentle and Lana is very protective of the newest Degan...

Finn's cousin are so excited to meet him, but we are holding out just a little bit longer to be sure we are not introducing any extra germs.  Kipton made Finn his very first valentine.  So sweet :)

We are anticipating Finn to be a BIG boy when he grows up.  You should see the feet and hands on that boy!  Take a peek at these fingers....

All in all, life is good, life is grand, life is great!  We have our little family of four at home and loving every second of the chaos, crazy, sleepless nights.  God is so good and we are so very thankful for the unending support from family and friends.
Until next time.
xo
Dana

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...."

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

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

 

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