The Plan As We Know It Today

Today has gone considerable well for Dana and Finley.  Dana has been dealing with slight discomfort around her incision but a significant amount of pain in her back (leftover from anesthesia/gas bubbles...ouch).

Finley has been a rock star today.

We started the morning off meeting with Dr Schwartz (our cardiologist) and got a report on how Finn was doing.  Everything that he saw and reviewed from overnight and into the morning basically showed he was doing excellent and he was very comfortable referring Finley as a complete repair candidate!   BUT, the cardiologist needed to chat with the surgeons to make sure they too agreed and everyone is on the same page.

We walked down to the NICU to see little man and got the run down from the nurses and they lowered the amount of medicine he is getting that keeps his ductus open b/c he is getting enough oxygen naturally.  They removed the air tube incoming at this nostrils too as he doesn't seem to need that either now.  Lastly, they removed the tube going into his stomach as well.

Over the night they fed him Dana's milk and then topped him off with formula.  It was great that he took the bottle right away but it didn't all stay down.  It's most likely due from his stomach not liking the formula so we had a chat with our nurse in the NICU and we all agreed that we didn't want anymore formula being used as it was just to much for his gut right now and all he needs is mom's milk.

While visiting with Finn in the NICU, one of our surgeons Dr Maxey rolled by to check on Finn and he introduced himself to us and we got to talking about the plan for Finn.  Dr Maxey said Finn isn't like other kids in the NICU meaning he is stable and in good shape.  Finn also doesn't have additional things wrong with him.  His kidneys are good, his brain is good, there isn't anything else in his body thats wrong....just the a heart that isn't plumbed right.  Because he doesn't have anything else going on, that is why he is stable, content and being a good little boy.

This means the surgeons too have confidence in him that he is strong enough to handle a complete repair procedure and they don't think it's necessary to have to do a temporary surgery now and then another surgery 3-5 months from now.  This was amazing news and exactly what we've bee hoping for.  The only thing left is scheduling the procedure.  As of right now they haven't officially given us a date but it sounds like it'd be Monday...possibly Tuesday.

Lastly, we were lucky enough to get skin to skin contact between Finley and Dana.  This was the first time Dana got to hold Finley and it was something special to see.  Finley was upset as ever getting taken away from his warm cozy bed but moments after resting on Dana's chest he calmed down as if realizing right away this smell, the sound of the heartbeat was all too familiar and he was with Momma Bear again.  In seconds...he passed out, laying there with his mouth wide open....he was in heaven, and so was Dana.

Momma Bear Incoming!!!

UPDATED: 1047PM (w/ new pics)

Dana hasn't seen Finn since this morning (and outside of my pics/videos) and she has been working her tail off to get down to the 7th floor to see him.  Luckily she has passed many of her tests in order to get outta bed/eat solids/etc and she has passed them all and now that means she will be rewarded by getting downstairs to see lil-man.

I just got back from visiting him again, and every time i've been there i've gotten great reports by the nurses.  Only issue so far has been the side effect of the med's that will keep his ductus open which is apnea.  To help with that they are pushing air (nothing with elevated oxygen levels, just the same stuff you and I are breathing) through his nostrils.  That has made some extra air/spit in his stomach and we just needed to drop a line to his stomach to pull that out and make it not uncomfortable.

He has taken a pacifier which he hims to taken to nicely but he has also started to put his fingers around his mouth which leads me to believe he'll find his thumb eventually.  

They just started him on TPN (total parental nutrition), along with some additional items to keep his body going full strength.  

This all being said, things are going well ---- i'll update this later tonight with pictures once Dana visits with him b/c i'm sure you'll want to see them together.  

PS --- he had some poops today too!!!!

Mom hanging out with Finn --- he was a bit upset but after hearing Mom's voice he calmed down very quickly

Feeling good now that mom & babe are reunited

1st Meeting w/ Cardiologist Team

Here's an update regarding our 1st meeting with the Cardiologist Matt Schwartz & Nurse Coordinator Kathleen Reeves.  May not be in the right order as it was just me writing down everything as fast as I could!

• Dana and I are in Room 8410 for those who want to stop by and visit.  Dana will be in here for 2-3 days most likely recovering from the C-section.  We're here but the baby is not as it's in the NICU so plan a visit with us if you'd like.
• Echocardiagram was done right after Finn got to the NICU and settled into his new home and Dr Schwartz came to our room to explain what exactly they saw so here it is: 
• Confirmed there is a hole b/w the left/right ventrical walls and the pulmonary valve has limited blood flow to the lungs.
• Reason why the pulmonary valve is having this issue is that the muscle tissue that was supposed to be apart of the wall between the left and right ventricle walls shifted during development and it shifted over to where the pulmonary valve is causing the limited blood flow.  Because the muscle blocked the valve during development the valve didn't grow tot he proper size and is now undersized.
• We can fix this by going in and removing this extra muscle tissue exposing the underdeveloped pulmonary valve and then splaying open the valve and placing a patch on the valve so it's much wider in diameter.
• This fix would be good until early/late adolescence.  
• We would know when to do a valve replacement after doing annual checkups and watching the level of blood backflow into the heart chamber (pulmonary valve regurgitation).  Because the valve is underdeveloped that means blood will be trickling back into the chamber (and it's not supposed to do that).  It's not a terrible thing this is happening but eventually the chamber in the heart will begin to have too much blood backflow and things will start slowing down (Finn will be slugish) and getting less oxygen.  This will be the determining factor of when we will do the upgrade so until then we just do check ups and live life like any crazy boy does growing up.
• Based off the limited bloodflow levels, the Dr's feel if we turned off medicine that is keeping the dutus open, the oxygen levels would go down.
• Surgery will be schedule for sometime early next week (will know tomorrow after speaking to surgery team).
• NICU will start feeding baby later tonight/tomorrow with moms milk
• Based on on the proposed procedures coming up, Dr's told us to anticipate planning to stay for 3-4 weeks in hospital 

Chilling in the NICU..toasty warm and being a good little boy

Auntie Cindy visiting w/ Finn

Holy TOES!!!!!

Pic's pic's and more pic's

Figured we'd get some pic's together of Finley while I'm working on the larger update after meeting with our cardiology team.  Things are going well, we've been briefed and basically waiting on confirmation of things with the surgical team.

Hello, my name is Finley, what's yours?

Updated again w/ birth stats / 508pm
Update / 847am

Hello, my name is Finley James Degan, what's yours?

• Born around 820am
• 7lbs, 4oz (47%)
• Born 816am
• Length, 20.5" (84.7%)
• Head Circumferance, 13.78" (63.5%)
• Eye Color: Unknown still...
• Hair Color: Dark Brown

Waiting on weight/specs but Dana is doing great I am with Fin in the NICU and I'll have spec's. be in touch once I have those, NICU staff let him be with us for longer than we thought as he was very good shape

More to come later today once we learn more about the initial scans and get a better idea of what the game plan will be.

Holidays have passed and now..... baby in 1 week!

Merry Christmas and Happy New Year! 

We were told that after Christmas and New Years passed, it would be BABY time and here we are....ALREADY.  I had my last OB check-up today (38 weeks) and all is well.  The baby had a normal heart rate - it has been fluctuating between 145 - 132... that leads me to believe it is a boy (Olivia's had been in the upper 140s to mid 150s), but I've heard the other way around too!  50/50 chance, right??
I had an ultrasound 2 weeks ago and the baby continues with 50th percentile size, the growth continues to be spot on.  They had estimated about 6.5#s at that time and with an estimated growth of about 0.5# per week, we could be dealing with an 8 pound baby, which is FANTASTIC news!  Olivia was just over 8#s at birth, so that would not be out of the question.  When we told the surgeon that our family usually produces large babies, he said that he could just kiss us!

Baby Degan 36 weeks, Looking straight up, forehead and nose at top :)

Baby Degan continues to move ALOT, especially when we read stories before nap and bedtime with big sis Olivia.  As Olivia is sitting on my "side lap" beside my belly, the baby starts moving and kicking and Olivia feels it and giggles, it might be the sweetest thing I've witnessed so far, but I'm sure more amazing moments are about to arise!

We tried our best to enjoy friends and family over the holidays and really cherish these special moments as a family of 3 going on 4.  We were so blessed to have almost our ENTIRE family here over Christmas (unfortunately, Darrell, Dana's oldest brother and his family could not make the trip from WI this year).  The WI crew (Dana's family) pulled in the Thursday before Christmas and Mark's dad and his brother and fam, came in from Eastern NC.  All the guys (+ Jacqui) enjoyed a Friday night bball game, Charlotte Hornets against the Chicago Bulls.  There were a big group of 15 and the kids LOVED it!

   
On Christmas Eve, Mark smoked a whole hog for Christmas dinner, that was quite a feat.  He had been wanting to do this for a long, long time, so he built his own cooking area, got a whole organic hog from a local farmer and he enjoyed the nice weather with visitors through the day out at the pit in our backyard.

That evening we enjoyed a beautiful church service at Lake Forest, Cindy (Dana's sister's) church.  I just love singing Christmas songs!  The kids opened a few presents from their cousins that night, before the "Big Guy" came with the good stuff the next AM!

Olivia and Violet (cousin from WI) sorting babydoll clothes

Christmas Day was so exciting for Mark and I.  It started off with typical present opening, stockings first.  Olivia got her first big girl bike (balance bike) from her Grandpa Don this year.

But then the crowds came... it was out first time hosting an actual holiday in our house!  We had 22 people over for dinner, we served Mark's pork and all the others brought dishes to pass.  Since I'm not the cook, Cindy and Mark organized the meal.  I just made the table setting look pretty and transformed our foyer and sitting room into one big eating space!  It worked out pretty well! 

Everyone is looking!!!

Cindy was talking to the babe and feeling some kicks :)

The day after Christmas we celebrated Baby Degan while the family was in town!  A big thanks to Cindy for hosting, Mom (Rita), Barb (Mark's mom), Jess (Dans's sister-in-law) and Jacqui (Dana's sister-in-law from Mark's side) for helping with organizing the sprinkle the day after Christmas!  We had a great time with friends and family.  Everyone colored a piece of a mandala coloring page and Barb made a collage with everyone's picture for the nursery .... I LOVE it! 

All the guests coloring their mandala coloring square

Girl or Boy??? What do you think

 I LOVE my tree of life that Barb created with everyone's mandala pieces.  Such a special keepsake for the nursery!  After all the festivities were over, Barb molded my belly to make a belly bowl out of clay after the baby is born.  This is such a special piece of art that we have from Olivia (all of her birth stats were etched into the bowl), I cannot wait to see the bowl for Baby Degan!

Mark enjoyed the entire week after Christmas off work and we spent some quality time together.  We went on a trip to the Lazy 5 Ranch in Mooresville (a drive through animal park) featuring animals from 5 different continents, so much fun!  

 We had a pretty low key New Years Eve.  We celebrated at a friend's house with a few other couples and their kiddos.  We did not see the ball drop this year, but still made special memories!

I hope you have started off your 2017 with positivity and meaning!  I have been challenged to pick a word that will describe my 2017.  Below are our stocking hangers from the mantle this Christmas, I thought that FAITH would be an appropriate word for my 2017.  I have faith that Baby Degan and our family will be in the best of hands this year, MANY hands will be guiding and leading us through this journey.  Until we talk again, have Faith that ALL IS WELL!

Much Love, Dana

Baby Luck Holiday Party

We are so blessed to have the BEST nurse coordinator, Katherine Reeves at Levine Children's Hospital.  She makes sure we are 100% in the loop, meeting all the people that will calm our nerves, giving us a tour of every floor and hospital room that we will encounter during our stay at the hospital in January 2017, willing to connect us with families in our area with similar stories as ours, and making sure we know 100% what our options are for community support and other services that the hospital has available to families and patients, BUT all of this ONLY when we are READY to proceed at our comfort.  SHE. IS. THE. BEST.  When I mention to others that work at Levine or have gone through a similar CHD (congenital heart defect) experience, they always ask if we are working with Katherine, she's a super star.  

                                                     (Katherine in the white top)

Okay back to Baby Luck...

Levine has MANY non profit organizations, the one that we have heard tons about within the heart community has been Camp Luck.  This is a 6 day Summer camp for children ages 7-14, of course Baby Degan would qualify and then a sibling can attend too.  I am so excited about that because I have been having some thoughts about how Olivia might feel left out with all the extra attention and "services" that the baby is going to receive.  Speaking of feeling left out, it was so the OPPOSITE when Katherine invited us to Baby Luck, a great service that brings families of the youngest, under 7 years old, heart patients together.  I met the family, Sara and William (heart patient) pictured on the Baby Luck web header, at the Baby Luck Event (what a true breath of sunshine and positivity.  Seriously she was so nice and of course we have a few contacts in common, it sure is a small world!).  We had a fantastic time, Olivia had a ball playing with the other kids.  It's pretty amazing that you cannot even tell that many of these children have been through one or two or more heart surgeries.  They live a full, often unrestricted life, so again we are super hopeful that this will be the same story for Baby Degan.  

Mark and I met multiple families that were in our shoes just a few short months/years ago.  They shared stories and advice with us.  It is nice to hear other peoples experiences, but one definite similar point that was made was that the staff at Levine, from the RNs to the doctors and sugeons, were out of this world and so WONDERFUL.  That is always very reassuring to hear!  I had asked Katherine at the event if any other families had a similar diagnosis as we did and she didn't think that any of the families that were attending with heart kiddos did.  But then I met Jessica!  Her and I have the SAME STORY!  She is currently pregnant, due January 2017 with their second baby (who has the heart defect Tetrology of Fallot) and their first is 2 1/2 years old, sweet Charlie.  Olivia and Charlie hit it off at the party, I have a feeling they will be seeing each other again!  Pictured below is me and Jessica and Olivia and Charlie, so sweet!  I had a great time chatting with Jessica and learning more about her story and she about mine.  It's nice to have someone with an instant connection when attending these events, because you can walk in feeling a bit isolated.

The staff that was present at the party was wonderful.  Each of them introduced themselves to us and one of them even shared that she was a heart patient herself, being born with a heart defect that they watched for years which she then had heart surgery as a teenager and she was able to enjoy her teenage years as a competitive gymnast.  It is so comforting to know that our baby has the possibility to live a "normal" minimally restricted life, so many shared with us that their kiddos do and it's possible! 

We are so happy that we took the time out of our hectic schedules this holiday season to drive down to Charlotte for a mid-morning holiday gathering!  I look forward to going back and attending the bi-monthly "play groups" to meet more families and hopefully I can help ease another new moms scary transition into this world of CHD. 

The party was hosted at The Ronald McDonald House in Charlotte, just a short 5 minute walk from the hospital.  It is very possible Mark and I may be taking advantage of those accomodations (considering our drive is about 30 minutes **in normal traffic**, rush hour could set us back 1-1.5 hours... eeek).  It sure is hard to say and plan exactly what we can expect, but for now, we have our mind at ease with family, friends and tons of community support.  We will just continue to pray that God provides us with peace over this situation and Mark and I both continue with a heart FULL of Faith and Hope!

xoxo, Dana