Monday, August 6, 2012

UPDATED: First Round of Questions w/Answers

Just for future reference, here's what we learned from our visit...The fonts are all messed up, but you get the idea.


Who follows our prenatal care for:
1.     gestational diabetes management continue with Main Line perinatal care
2.     tracking growth will be part of monthly visits during regular ultrasound (distinct from echo)
3.     non-stress tests this will be ordered by local OB and like to begin around 32 weeks; frequency each week will be determined by status of diabetes management; can be done at Paoli hospital through Main Line perinatal care
4.     regular OB appointments continue with local OB until week 37; also continue to see CHOP OB for monthly visits (at same time as echo/ultrasounds); exclusively see CHOP OB starting at 37 weeks

Are there opportunities for assessments to happen at satellite sites (e.g., Exton CHOP)?  No.

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? Not a concern - ruled out in ultrasounds

How do we find out whether we will be able to deliver at the SDU? Today -- yes, approved for delivery.

Are there any new risks for pre-term labor/delivery because of the heart condition? No.

Are there changes that could happen in utero that would alter his diagnosis and/or prognoses?  Yes, but no changes at this moment.  Likelihood of surprises being seen on later ultrasounds grow more and more unlikely as weeks progress.  Doctor made it seem like an outside chance.

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? Did not get to ask this question -- our OB exam was cancelled and moved to next month, when we'll see a midwife/nurse practitioner


When will the c-section be planned? 39 weeks; no specific date yet

Will the c-section differ at all from a "normal" section, e.g., incision location, recovery time? No.

Will family be able to see us in the SDU recovery room after delivery?  Will they be able to see the baby? Did not ask.

How long is the typical leave for disability authorized after c-section? 6, 8 or 10 weeks? They will work with what we need for employment purposes.  Seemed to think that 10 weeks disability would not be unreasonable.

How much are we going to actually hold him between birth and surgery? How much will our contact with him be restricted?  Possibly.  Really depends on getting him stable and the number of tubes that he'll need to be connected to and what method of connection.  If the tubes allow for holding, there is a priority for parent contact. 

What efforts are made to establish early bonding between mother and child like skin-to-skin contact, breast feeding? This is driven by what his immediate medical needs are at the moment.  If tubes and IVs allow, direct contact is encouraged for both parents.  Lisa (program manager) acknowledged the importance of kangaroo care and its health benefits.

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? These are questions for the cardiac lactation consultant (she is PhD level and extremely knowledgeable).  We will have a pre-delivery consult with her as the delivery approached (timing?) and then work closely with her after delivery.  There are pumping rooms and machines available throughout hospital and lots of support.

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? No.  Research is limited in this area and existing research does not point to the usefulness of cord blood or cells.  Future research could very well lead to other areas of harvesting (e.g., bone marrow, blood cells).  The cardiologist did not recommend banking at this time for this reason and the fact that banking for future use in growing valves would need to be done in a more highly regulated way than available in current banking standards.

Surgery + Recovery

How soon after birth will the surgery likely take place? Within one week.  Cannot tell if this means 2 days or 7 days.  Still unclear.

How will they keep him alive between birth and surgery? He will likely be able to be stabilized without use of considerable intervention because of the nature of his defects.  He may be on oxygen and have IV lines placed, but the majority of the lines attached to him will be for monitoring purposes, rather than the administration of medication. 

How long is surgery?  How long will he be on bypass? This will be discussed with the surgical consult, later in the process (when was unclear).

What is the typical recovery time frame between surgery and release from hospital? 2-3 weeks post surgery (not delivery)

What are the more common complications from this surgery? Feeding issues, bleeding, infection, and change of heart rhythm

Of the deaths for those being treated for TA and similar procedures at CHOP, what have been the causes of those deaths? Typically poorly functioning truncal valve or an infection secondary to the surgery

What is the likelihood that an additional surgery(ies) will be needed again in the first year? Assuming nothing unexpected, additional procedures is unlikely. 

What feeding issues might he face?  What approaches are used to minimize those risks? We didn't dig into this topic yet, but cardiologist said it's unclear why CHD open heart babies struggle with feeding, but many do.  His feeding issues will likely be the reason why he might have a longer stay after surgery (assuming no medical issues like bleeding or infection).

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)? Yes, depending on his health and our preference.

0-6 Months

What will those first two weeks look like?  How do families plan ahead for care for older sibilings?  Didn't get a chance to really ask this question, mainly because the program manager was pushing the process forward because of time.  Sense that this could be discussed more with the social worker in the future.

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? A 3- or 4-month return to work (and full time daycare) would be reasonable, but depends highly on his progress.

Will he be able to attend daycare?  Yes. Generally, when would he be first able to be cared for in a daycare situation after his discharge from the hospital?  3 or 4 months, depending on progress Are there questions we should be asking our facility about their training, experience, etc? He might need to go home with feeding tubes, so experience with this is helpful.  The doctor also mentioned medical daycare as an option, which was confusing since they tend to be for those children who have much more complex needs.  Will continue to follow upon this, possibly with the social worker. 

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? Not clear on the answer for this.  Our notes have that "yes," she could be pulled out, but I don't remember the timing or circumstance for pulling.  Should re-ask this at our next visit... .

What do we need to do to make our home safe for him to come home (e.g., air purification, special monitors, etc)? No. 

Living with CHD

How does this heart defect affect his life expectancy? Hard to say because only recently (~ 40 years) started doing the surgery.  Cardiologist didn't see any reason why this would necessarily shorten his life expectancy, so long as nothing emerged that was unexpected.

Will he be on long-term maintenance medication? Unlikely.

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

Are there secondary effects of OHS and/or CHD on his development?  e.g., language acquisition and speech, ADHD, cognitive, fine motor skills, etc.  Quite possibly, but unclear exactly what.  There are generalizations that can be made about behavioral and learning development in children who have CHD and in children who have OHS at an early age.  The cardiologist explained that it's unclear right now whether these are differences due to the defect (or any underlying cause of the defect) or the impact of surgery and/or bypass.  I feel this is going to be a line of questioning that will continue to evolve and likely need some research on our end, as everyone in the room wanted to stay away from specifics.  (Which I understand, since any differences can manifest in each individual child, well, differently.)

Would he have worse outcomes if diagnosed with more common problems like asthma, allergies, etc? Unlikely, but treatment of those conditions might be different based on his cardiac status at the time the issue arises.  For example, albuterol may not be a medication that he could use for asthma maintenance in the same way as others because it might interfere with electrical signals across the heart tissue.  But generally, he'll tackle illnesses like any other HH child.

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