Our first round of questions

It's been almost a month since I've been to CHOP and, in that time, we've learned a considerable amount about truncus arteriosus, open heart surgery, recovery, and loving your way through the process.

But there are still a LOT of questions on our minds. 

So far, these are the ones we're bringing with us for our second consult on Monday.  There might be a few last minute additions, but generally this is where our headspace is right now. 

Prenatal

Who follows our prenatal care for:
1.     gestational diabetes management
2.     tracking growth
3.     non-stress tests
4.     regular OB appointments

Are there opportunities for assessments to happen at satellite sites (e.g., Exton CHOP)?

Our OB failed to order a spina bifida test at 16 weeks and does not recommend doing so now that the anatomy scan is complete.  Is there any risk of spina bifida not already being discovered?

How do we find out whether we will be able to deliver at the SDU?

Are there any new risks for pre-term labor/delivery because of the heart condition?

Are there changes that could happen in utero that would alter his diagnosis and/or prognoses?  

This pregnancy has been qualitatively different than the last -- more fatigue, earlier swelling, earlier and continued headaches.  Are there precautions I should be taking to help avoid preterm labor differently than last time?

Delivery

When will the c-section be planned?

Will the c-section differ at all from a "normal" section, e.g., incision location, recovery time?

Will family be able to see us in the SDU recovery room after delivery?  Will they be able to see the baby?

How long is the typical leave for disability authorized after c-section? 6, 8 or 10 weeks?

How much are we going to actually hold him between birth and surgery? How much will our contact with him be restricted?  

What efforts are made to establish early bonding between mother and child like skin-to-skin contact, breast feeding?

How is pumping handled?  Are there diets recommended for Mom during those first weeks while pumping to boost the nutritional value of the breastmilk?  Are hospital-grade pumps available for rental?  Cost?

Is there research that indicates a line of study using cord blood and/or cord cells relevant to his condition?  What is your recommendation re: cord blood and/or cord cell banking?

Surgery + Recovery

How soon after birth will the surgery likely take place?

How will they keep him alive between birth and surgery?

How long is surgery?  How long will he be on bypass?

What is the typical recovery time frame between surgery and release from hospital?

What are the more common complications from this surgery?

Of the deaths for those being treated for TA and similar procedures at CHOP, what have been the causes of those deaths?

What is the likelihood that an additional surgery(ies) will be needed again in the first year?

What feeding issues might he face?  What approaches are used to minimize those risks?

Will family members (daughter, grandparents, aunts/uncles) be allowed to visit the NICU before surgery?  After?  Are there restrictions on these visits (duration, times of day, etc)?

0-6 Months

What will those first two weeks look like?  How do families plan ahead for care for older sibilings?  

How do parents who both work typically manage the first 6 months?  Is it reasonable to expect to have Mom return to work after a 3-month maternity leave or is the timeline longer?  

Will he be able to attend daycare?  Generally, when would he be first able to be cared for in a daycare situation after his discharge from the hospital?  Are there questions we should be asking our facility about their training, experience, etc?

After his return from the hospital, is there any period of time the doctors will recommend his older sister be removed from daycare?  If so, usually for how long?

What do we need to do to make our home safe for him to come home (e.g., air purification, special monitors, etc)?

Living with CHD

How does this heart defect affect his life expectancy?

Will he be on long-term maintenance medication?

Will he have any type of monitoring implant (e.g., pacemaker)?

Are there secondary effects of OHS and/or CHD on his development?  e.g., language acquisition and speech, ADHD, cognitive, fine motor skills, etc.  

Would he have worse outcomes if diagnosed with more common problems like asthma, allergies, etc?