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.