Questions for the Doctors

Omphalocele and Other Defect Questions

• Is it still a small omphalocele?
• So far, yes.  The doctors do not expect that to change.  The perinatologist told us the technicians all comment on just how small it is! 
• What are they looking for at the ultrasound appointments?
• Primarily they are looking for beastie's growth, to make sure everything is normal.  They also keep tabs on beastie's brain, heart, major arteries, etc.  Even though they keep looking just in case, they expect that any other physical abnormalities would have been visible by now.  
• Are any other defects visible?
• Nope!
• Are there defects that we won't be able to see on the ultrasound?
• There could be.  Ultrasound has limitations, and the primary defects that it cannot pick up are related to brain and bowel function.  There are no specific brain function issues (such as learning disabilities) that are related to omphalocele.  Beastie is at the same risk as any other baby.  On the other hand, bowel function could be a concern.  We just won't know until the baby is delivered and eating. 
• Are there any other non-routine tests that are recommended for babies with omphalocele?
• No.  Just the normal stuff (besides frequent ultrasounds).
• Is there increased reason to collect baby's cord blood?
• No, no change.

Pregnancy Questions

• Should Elizabeth change any habits, or continue to follow normal pregnancy guidelines?
• No change.  Elizabeth should continue following all the standard guidelines and advice.
• Are there any concerns with flying in the second or early third trimester?
• Nope!  Elizabeth is cleared to fly through the end of October.

Labor and Delivery Questions

• Is the baby more likely to be born prematurely?
• No.  Small omphalocele is not expected to cause preterm labor.
• At what point will a C-section be favored over natural birth?
• This is unlikely.  The surgeon actually prefers natural birth because of concern that the cut-down might damage the omphalocele membrane.  Of course, a C-section could be necessitated for other reasons.
• Will there be any changes to what drugs Elizabeth can take?
• No, not due to the omphalocele.
• Are there any differences to how Elizabeth and Chris should prepare for labor?  Will a regular childbirth class be appropriate?
• No changes.  We can do whatever we would have done without the omphalocele (which reminds us... we should schedule that...).
• How close will Elizabeth's recovery room be to the NICU?
• Across the hall, and she can go back-and-forth as much as she is able.

Surgery and NICU Questions

• How soon after delivery will the surgery be?  
• We don't know yet, and the surgery likely won't be scheduled until after the surgeon sees the baby.  What will happen very soon after delivery is admission to the NICU.  The surgeon said for a small omphalocele, surgery is usually 1-2 days after birth.
• How long should we expect the baby to be in the NICU?
• This depends greatly on the size of the omphalocele.  For a small omphalocele, we should expect 1-2 weeks (yay!).
• Will Chris and Elizabeth get any time with the baby after delivery?
• As long as the baby is stable, they will try to give us a little bit of bonding time.  No one was really willing to quantify it, so it seems like it will not be very long at all.  They want to get the baby over to the NICU and treated as soon as possible.  The baby will be wrapped to protect the omphalocele and keep it from bursting.
• Will we be able to have skin-to-skin contact after delivery?
• They encourage it, but it might not be able to happen right away because of admitting to the NICU.  They will do what they can to allow some after delivery, and then definitely in the NICU.
• Who can visit the baby in the NICU?
• Anyone!  But there are rules.  Chris and Elizabeth will have magic wristbands that let them into the NICU.  They can bring one additional visitor in (anyone), and there can only be two people at the beastie's bedside at any given time (Chris + 1 or Elizabeth + 1).
• What are visitor's hours in the NICU?
• 24/7 except for shift change.  Shift change is a 30 minute break when the nurses are coming in/out.  These shift changes are 7-7:30 a.m., 3-3:30 p.m., 7-7:30 p.m., and 11-11:30 p.m.  
• Are there any special programs, services, or classes for NICU parents?
• Can we sit in on rounds?  Is it parents-only, or can other visiting family sit in?
• Anyone who is bedside can sit in.  They encourage parents to be there for rounds (~8:45 a.m. and ~5 p.m.).
• How hands on can Chris and Elizabeth be with baby's care in the NICU? (Diapers, feeding, etc.)
• As hands on as beastie's condition allows!  They like parents to be hands on so we can learn how to take care of the baby, but they take care of everything in the beginning.
• What can we bring for the baby in the NICU? (Diapers, blanket, formula, breast milk, etc.)
• Elizabeth is encouraged to provide breast milk.  We can also bring any blankets, stuffed animals, etc. to have around beastie's bed.  The only thing that goes IN the bed is a blanket to swaddle.  No need to provide diapers.
• When the baby is ready to come home, what is the transition like?
• Elizabeth and Chris and beastie will stay in a "Parent Room" overnight to make sure everything is going OK and we get any questions we have answered.  Then beastie is cleared to come home!
• When should Elizabeth meet with a lactation consultant?
• Regular time.  After birth once beastie is ready for traditional latching / breastfeeding.
• Will Elizabeth be able to provide breast milk for baby?  If not right away, is there anything that the milk can be used for?
• Yes!
• Will Chris or Elizabeth be able to stay overnight in the hospital?  Limitations / cost?
• The parent rooms used for transition to home could be used in extenuating circumstances.  Usually these rooms go to parents who live far away (i.e. Modesto, which is over 80 miles away).  It is unlikely we will get this benefit since we live close to the hospital (and have amazing friends who live even closer!).  There is also an on-campus housing thing... but honestly we can't remember the details right now.  
• What sort of expense should Chris and Elizabeth plan for the surgery and NICU care?
• How many times has the surgeon performed the surgery?
• The surgeon has been Kaiser for 15 years (trained at Harvard).  She sees 3-4 babies with omphalocele each year (including all sizes).
• What types of additional testing will there be after delivery but before surgery?
• Probably just an x-ray and and echocardiogram (image of the heart).  There will also be a bunch of tubes (IVs, etc.).
• What has the success rate been for the surgeries performed?
• For small and medium omphaloceles, all of the babies did fine.  

Home Care

• What should we tell the day care provider about care for the baby?
• At that point, there shouldn't be anything special on day-to-day care.  
• What differences with diapering and handling should be observed while baby is healing?
• Generally none.  The stitches are dissolvable.
• How long should we "baby" baby with respect to healing?
• Not long!  Once the baby can come home, can be handled like any other newborn.
• Are there local support groups for families or babies with omphalocele?
• Have you considered a doula or other post-discharge care provider?  Would this be covered by insurance?
• What support is there after transition to home care?
• The NICU staff is our first line of support right after the transition, and eventually will hand us off to a pediatrician.  The baby should be eating normally (by mouth) by the time we go home, but there might still be some tube feeding.
• Are there any long term effects?
• Generally, no.  However, due to the omphalocele it is assumed that baby will have malrotated intestines.  This means there is a higher likelihood of intestinal blockage.  For the baby's whole life, if there is green vomiting - call the doctor.

Did we miss a question you think we should ask?  Please add it in the comments!