The Big Day

Heard from the OB today, and Baby Degan will be born via C-Section on January 11th, 2017.

This is great news as that puts us having the baby on a Wednesday allowing the Dr's & teams to review/prepare/etc the next steps needed to take and hopefully do the surgery the following Monday (again, IF the scans show we can proceed with surgery to fix the heart).

Meeting the team at CHS-Levine

This email was broadcast on October 20^th after we met with the entire team at CHS-Levine, it was quite a bit of information to chew on for us but the one take away was how good of hands we are in.

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Yesterday, Dana and I spent majority of our day with Katherine Reeve’s of CHS-Levine.  She is our point person for everything connected to our upcoming “event”.  Katherine is a Fetal Cardiac Nurse Coordinator and knows a lot and if she happens to not have our answers, she knows exactly who does.  We spent our time visiting with each unit we’d be interacting with as well as viewing them and talking to the folks in charge.  Overall, it was a ton of information and we have so many notes that it’s hard to wrap our heads around it all.

The overall update would be we know we are in fantastic hands, they do this a lot and their success rate is very good.  The baby is growing and is extremely active as Dana can attest too (STOP DOING SUMMERSAULTS!). 

Timeline: 

• ·         As of today we still aren’t sure what our exact timeline is for when we would have surgery.  We won’t fully know until the baby is born and they do an Echocardiogram directly on the baby.  From there, they will be able to review imaging, notes and information to see exactly what it is they need to do/fix.  The cardiologist (Dr. Bensky) would consult this information to the pediatric cardiac surgeons (Dr. Kirshbom).  The surgeons will then be able to plan out the surgery and schedule it in the system. 
• ·         From what we are anticipating today, we are expecting the surgery to take place 4-7 days after birth.  This will allow the baby to have plenty of time to recover from the birthing process and have more strength for the surgery.  We could have it sooner, we could have it later…won’t know til him/her is born.
• ·         If we take the birthing timeframe, add in a complete repair recovery time as well as pad it a bit we are looking at staying at CHS-Levine for around 20 days.  That of course could be more and it could be less, again we won’t know til we get there.

The Big Day: Currently Dana is due January 16^th so being it’s a c-section they usually schedule a week in front of that so that puts us at January 9^th.  Again, nothing has been set yet but that will be up to Dana’s OB Dr.

Recovery Times:

• ·         If we go into surgery and they deem they can’t do a complete repair then a shunt will be installed and we would have another surgery to do the complete repair 3 months from now.  Recovery time of a shunt surgery is 7-10 days.
• ·         If we go into surgery and they do a complete repair the recovery time would be 7-10 days.
• ·         If we review imaging and deem the baby just isn’t ready for the rigors of surgery then we will wait a while (several months) and then come back later in 2017.

Departments & Units:

• ·         Once admitted into the hospital for the planned c-section/delivery we will work through the following units at CHS:
• ·         Dana: Maternity Center is where baby will be born (just like Olivia).
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• ·         Baby Degan will go here:
• ·         Neonatal Intensive Care Unit (NICU) –  Meet w/ Nurse Manager Mary Whitson who went over what to expect, etc).This group will be present in the delivery room and once the baby is born they will give us “a minute” to be with the baby then take him/her away and care for it while we wait for surgery.  They will also take care of getting the echocardiogram done ASAP and starting a IV line into the baby for the Ductus medicine so we are sure it stays open and free flowing until we are ready for surgery.  Side effects of this drug happen to be increased body temperature and sleep apnea.  Doesn’t happen to all babies but it’s possible those side effects could occur.
• ·         Pediatric Cardiac Surgery – Met w/ Dr Kirshbom who went other possible surgeries, risks, recovery times, etc.
• ·         One risk that could occur are needing a pacemaker due in part if we accidentally severed a “electrical” line that provides our charge to pump the heart.  If that were to occur, a pacemaker would fix that issue. 
• ·         Valve being used will most likely be a biological valve, ie – from a cow’s neck artery (comes full circle for Dana and growing up on a dairy farm).
• ·         Cardiovascular Intensive Care Unit (CVICU) – This group will take care of the baby after our surgery (Met w/ Dr Saxonhouse who went over what to expect, etc).
• ·         Progressive Care Unit – final portion of our stay.

10/21/16 Echo Results: We had an echocardiogram yesterday which will be the last imaging done til they do it directly on the baby after birth.  The bone density of mom+baby is getting too thick to get great images and we know we are at the point where we are packing on weight for the baby instead of development.  Notes from that imaging was:

• ·         Confirmation ductus was being used for majority of blood flow to the lungs
• ·         Pulmonary Valve had limited blood flow to the lungs
• ·         Heart rate was 137
• ·         Noted that it was a strong heart, just plumbed the wrong way.

Cold & Flu Season:  This was one of the harder things to accept as during the birth and surgeries will be cold & flu season.  The Intensive Card Unit’s are both insanely (in a good way) passionate about limiting human contact with our baby.  This means the following:

• ·         No visitors under the age of 16 will be permitted
• ·         Anyone who has been in contact with someone who has a cold, virus or “allergies acting up” (PS --- you don’t have allergies in Jan, you’re SICK) will not be permitted in.  Sure someone could say, I haven’t been in contact but if you have the thought you may have, it is best to play it safe for the health of the baby.  We have enough to worry about with the heart surgery and can’t throw something else in the ring at that time.  This will be a huge concern for us simply b/c we have a 2 year old and she is in pre-school…..I haven’t a clue how that is going to work.

Visiting: Besides Dana and myself, we can only allow 4 other people to visit the baby.  We can remove names off the list but we can’t replace names with new names.

• ·         Will require check in at the CMC main desk as well as the CMC-Levine desk.
• ·         Visitors are required to fill out consent form every 24hrs stating they have not been in contact with cold/flu/viruses. 
• ·         No visitation at 130-230 am & pm as well as 630-730 am pm (quiet time & shift changes)

Travel:

It would be in our best interests to stay close to Charlotte just in case something occurs and we go into labor early.

Child Life Specialist, Keri Stephenson: Child Life Specialists help children and families cope with hospitalization.  Katherine thought that Keri would be able to give us some insight with what to expect with Olivia, and may have some ideas to help her with the transition to sisterhood.  Keri’s email is Keri.Stephenson@carolinashealthcare.org, and her office is 704-381-8257.

Ronald McDonald House: Being that we live in a different county, we will have the ability to stay at the Ronald McDonald house which is 2 blocks away from the hospital.  Obviously Brian & Jacqui know how nice it is to have that resource and Dana and I will investigate the use of this.  Although our scenario is different seeing we live closer to the hospital than they did and we have a 2 yrs waiting for us at home. 

Camp Luck: Supports heart families by connecting them with families who have children with similar heart conditions.  It’s a great tool for parent support network: www.campluck.com

Genetics Counselor, Lauren Masso: will call sometime soon to discuss possible post-natal genetic/mutation evaluations the baby.

• ·         If we wanted we could do some testing for mutations and if any were found I (Mark) would get the same test to see if I held onto the mutation (pin pointing the cause of this).
• ·         Knowing this would essentially aid baby Degan later down the road and being 100% informed of any possible issues that could arise if wanting to have children.
• ·         If we decide we’d like some other CHD (Congenital Heart Defect) family connections we will ask Katherine and she will put us in contact with people who have very similar effects.

Getting up to speed

Best way to get you up to speed is for us to share the original email broadcast out to family and friends, may be a little redundant from the Beginning post but regardless: 

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Family & Friends,

Seems like it was just yesterday we started an email chain talking about Breast Cancer with Mom, or starting a email chain for Dana's Cavernous Angioma......or maybe it feels like just yesterday we started an email chain for Porters and his heart defects.  Regardless of what it all feels like, time suit up your armor and paint your war faces gang ---- shits about to get real again.

First off, know and understand that Dana is doing just fine.  I'm doing just fine.  Considering what we've learned in the last few days i'm sure it would be understandable to see us buckling under the immense weight of this terrible situation, but know that we are standing tall and facing it directly soaking up as much information as we can and encouraging you all to talk about it.  The more we talk about it, the more know about ---- the better we all are.

Also, I think it goes without saying to feel free to forward to other family & friends.

I'll do my best to explain whats going on and attached are 2 diagrams.  One is a slick we got from Carolinas Healthcare System - Levine (CHS-Levine) and the other is from Troy (thank you bud, great detailed info).

What do we know?

• Today after having a echocardiogram at CHS-Levine, Baby Degan was diagnosed with something called, Tetralogy of Fallot (tetra meaning 4 and Fallot is the guy who came up with this term).  There are not 4 issues with Baby Degan's heart, but actually 3.  
• Referencing the CHS-Levine Diagram of Tetralogy of Fallot you will want to concentrate on the Suvalvar or Valvar Pulmonary Stenosis and the hole between the Right & Left Ventricle walls as well as the Overriding Aorta (the 4th thing on the diagram is Right Ventricle Hypertrophy however we were not told the baby has this however we will reconfirm with them this is the case). 

• The Pulmonary Artery valve that pulls blood from the right ventricle is very very small.  So small that not a lot of blood is getting pulled in.  Luckily the Baby is utilizing the Ductus Arteriosus located above the Pulmonary Artery to bypass this poor connection and get all the blood it needs to the lungs and elsewhere.
• The hole between the right and left ventricle walls is quite large and this occurred while the heart was being developed.  Think of two points coming together and in a healthy heart the points meet dead on and they fused together correctly.  In our baby's heart the two points did not connect dead on and instead did not meet and are now off centered, resulting in a hole between the two ventricles.
• The overriding aorta is supposed to be on top of the left ventricle however our baby's heart the aorta is in the middle between the left/right ventricles.

CHS-Levine Diagram of Tetralogy of Fallot

What can we do to fix it?

• We can have surgery in order to fix all three of these issues.  The hole between the ventricles and the overriding aorta can be patched up right away.  
• The thing we aren't 100% sure of is the pulmonary artery valve.  As the baby grows in the pregnancy we will see if the valve is getting tighter or stays the way it is.  As of today, there are 3 possibilities....but keep in mind all these will change over the course of the pregnancy and how things develop til birth.

• If it stays the same, chances are we could repair it without a man made valve and thus it would be a one surgery fix.  
• There is a similar chance that we can't repair it and also can't input a man made valve meaning we'd have to install a short term fix, ie - shunt.  This would last for a couple months until the baby grows larger so they could fix it.
• If it continues to close up more we most likely won't be able to use that valve at all and need to install a man made valve which could be good til the child grow to early teens.  They would then go in and upgrade the valve for higher flow rate for adult hood.  In some cases that upgrade can be done by going up an artery through the leg (which would be awesome but everyone is different).

When do we fix it?

• Once the baby is born, chances are they will elect to do the surgery 4-7 days after birth.  Normally the ductus closes up and goes away shortly after birth however the Dr would give medicine to baby Degan that would keep this passage open and working so plenty of oxygen is getting where it needs to go.  When exactly the surgery takes place is unknown as this all depends on the babies health.  The good news is we do this on our timeline and it won't be a surprise and we won't wait til the baby is cyanotic.

What else are we waiting on?

• As of right now we have the majority of the information needed to move on, however we are waiting results on a Chromosome test that could uncover the reason why this happened.  In the event the baby is missing a Chromosome then that could explain this.  If the baby has all the Chromosomes then that just means it was simple by chance this happened to both my brother and I.

Where are we doing it?

• We will be doing everything at the same facility that Dana had her brain surgery at, just in a different wing: CHS Levine Children's Hospital.  It's one of if not the best Children's Cardiology & Heart Surgery facilities in the country.  Not to be over confident, but we are the best of hands..  

Who are our doctors?

• Cardiology Pediatrician: Andrew Bensky / http://www.carolinashealthcare.org/body.cfm?id=8061&action=detail&ref=275
• Fetal Cardiac Nurse Coord: Katherine Reeves
• We will get to meet the remaining members of the team (neonatal nurses, surgeons, etc in Oct

What's next?

• Waiting for Chromosome test, have around 8-12 days left.
• UPDATE: we received word the baby has all the Chromosomes so there are no issues there, this is a big win for us!
• Oct 20th is tour & meeting with rest of team and another echocardiogram.
• UPDATE: met with everyone and wow, we gained a ton of information and will share in future post.
• Continue to do everything as we have so far, grow the baby and do our best to have a full term pregnancy (as long as the baby is in the womb the hearts issues aren't going to affect ANY development).

Long term?

• If everything goes as planned and we have our successful surgeries it will grow and live a long and healthy live (just as Porter is doing today).

This all being said, I'm sure i've missed some things here and there but for the meantime this will have to suffice.  Keep us in thoughts but know we are keeping it positive and considering all the negative things we could key on we have a very good opportunity to fix this and allow our child to go through life without restraints.

In the end, we're going to be just fine.    

Love, M/D/O/L+Baby Degan

The Beginning

I was at a trade show for work, 600 miles away when I got the phone call.  Dana was calling to tell me the news from a scan done at the Women's Center in Charlotte.  It was debilitating.  Panic and numbness ensued ...we had read this book before and it sucked, I never wanted to even look at the book cover again.  

Our child who was around 24 weeks old had been diagnosed with a congenital heart defect...

Seems like it was just yesterday we started an email chain talking about Mom having to battle breast cancer, or creating a blog for Dana's brain surgeries for her Cavernous Angioma......or maybe it feels like just yesterday we started with Porter's (my nephew) own journey with having a congenital heart defect.  

Regardless of what it all felt like at the time, I stood in the middle of a convention center 600 miles from home staring into the nothingness of it all considering if it was possible this was a dream or not.  Due to the previous events in our lives and knowing how cruel life can be, i knew it was too easy for this all to be a dream.  

Life is hard and requires good work, mother earth giveth and she taketh away.  You have to be able to see the bad in this world, in order to appreciate and respect the good in this world.  Too often we all get wrapped up in the day to day BS of needing material items, showcasing & one upping on social networking, taking our kids for granted, holding a grudge on a family member/friend.  When a tramadic event occurs, all of those unimportant things fall by the waysides and a few things remain standing like family and friends.

This is our story, these are our unfiltered thoughts, published for those family and friends wanting to be in loop as we go through this event.  It's time suit up your armor and paint your war faces ---- shit is about to get real, again.

I figure the easiest thing to do is bring everyone up to speed with the email we broadcast out and then start from there.

Baby Degan - 19 weeks old