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