Wednesday, August 28, 2013

"Time to Prepare and Pray"

Those are the words of our cardiologist from our appointment yesterday.  Do you see why we love him?  He is very straightforward about things (so I feel like I know exactly what is going on), but he his very loving at the same time.  I feel like that is a hard thing to find in a doctor.  I am SO grateful everyday that he is the doctor caring for Ethan.  (Because I want to keep this blog public, but would like to have some anonymity, we'll call him Dr. B.)


Yesterday's appointment was good... well as good as it can be these days.  We did an echocardiogram on Ethan's heart to see what his status is now.  The pressure in his decompressing vein has actually gone down a tiny bit.  (YAY!! Prayers are working!!)  It is still not good, but it hasn't gotten worse.  At this point, we'll take that as a blessing.  He still has hypertension in his left atrium and they can still see that this is causing blood to flow backwards to his lungs, which is not good.  But, to me, this is an answer to our prayers.  And your prayers.  And all the thousands of prayers that have been offered for us and for Ethan.  My mom was saying yesterday that there are SO many people praying for us right now.  People we know and love, and also people we don't even know.  That is amazing to me.  We are so blessed.  With the way Ethan's anatomy looked yesterday, Dr. B is hopeful that Ethan will come out with 50-60% oxygen levels, which means we can have a little more time with him.  He says that we will be intervening with urgency, but it won't have to be emergent.  This is comforting to me.  This means we will have the chance to hold him and be with him for a few minutes before they take him off to the cath lab.  I think I will feel a lot better sending him to surgery if I at least have had the chance to hold him.  We aren't going to act on that "hope" though.  Obviously we will still need to be prepared for what might have to happen if he comes out sicker than we think and things need to happen right away.

This brings me to the wrench that Dr. B threw into our plans yesterday.  Ethan's birth date... this requires a little bit of a back story... After our last cardiology appointment (two weeks ago), we came home knowing that at the next one we would be talking more about delivery dates for Ethan.  After thinking about that for a couple days, we realized that it was only about a month away and we needed to know sooner, rather than later, when this was all going to happen.  I had an appointment the next day with my OB and planned to meet with Megan (our hospital coordinator) afterwards too.  I planned to ask her to see if she could at least get a delivery date nailed down for us.  So that Friday, I went to my appointment and talked with Megan.  She had already come to the conclusion that we had (that we only had about a month left before everything happened) and she had planned a meeting that afternoon with all the doctors involved (our cardiologist, my OB doctor, one of the neonatologists from the hospital, the cardiac surgeon, and the cath lab doctor (or is he a surgeon?)).  She planned on talking through scenarios with the doctors, informing them of our wishes, and having them decide on what type/date of delivery would be best for Ethan.  I was so happy when she told me about this meeting.  She is wonderful.  I asked her to please call me and let me know what date they decided on so we could plan accordingly.  She called me that afternoon and said that they had all agreed on September 23.  On that date I would be 39 weeks, so Ethan would be a good size baby to operate on.  They would induce me to deliver vaginally.  (Babies delivered via c-section typically have more respiratory problems and that is the last thing Ethan needs.)  And my job is to keep him inside me, nice and cozy, until then.  We promptly called our families and let them know that if they wanted to meet Ethan, they would need to be here that day.  Flights were booked right away.
Now here's the wrench:  At our appointment yesterday, Dr. B tells us that he thinks the best day for Ethan to come is on September 30, my actual due date.  His opinion is that one more week means one more pound on Ethan and a better chance for his ability to make it through surgeries.  (Great, but where was that opinion two weeks ago?!)  It really does make sense, and I actually feel really good about that, but it is now a logistics issue.  Today, Megan is running around and making phone calls to see if all those doctors will agree to this new plan.  She has to check with my OB, the cardiac surgeon, and the cath lab doctor to make sure they are on board.  (We already talked to the neonatologist about it, more on that later.)  So I should get a phone call from her this afternoon and then we can have all our family members change their flights.  The small risk about this plan is that I could go into labor spontaneously.  But, since it's my first baby, I feel like that is less likely to happen before my due date.  And if it does happen, we will have several hours of labor to wait through before Ethan actually makes his appearance.  And really, if the doctors thought I'd make it to the 23rd, then there is really only one week of "risk" of me going into labor spontaneously.  So if that becomes the new plan, that last week we will be avoiding spicy food, castor oil, and walking of any kind.  :)  So I would be induced for a vaginal birth, the night of the 29th.  Dr. B said I'm going to be mad at him that whole last week, thinking that we could have gotten him out a week earlier, haha.  But really, I feel like Ethan's health is far more important than my comfort level.  And currently, at 35 weeks, I'm still relatively comfortable.  (Now all you who have made it to 40+ weeks in your pregnancy can tell me how bad it gets at the end... just kidding, please don't.)

After our cardiology appointment, Megan took us over to the hospital to meet with one of the neonatologists.  He is one of the doctors who will be caring for Ethan in the NICU.  There are nine doctors on his team and while Ethan is in their care we will be in contact with one of them every day.  (Another reason why we decided on this hospital... we will not be talking to residents and fellows.  We will be talking with Ethan's actual doctors on a regular basis.)  He talked us through how Ethan's care will be handled after birth.  When I deliver Ethan there will be one or more of the neonatologists in the delivery room.  Right after he comes out they will intubate him and see if that helps his oxygen levels to go up.  This doctor has personally worked on two other cases (in his 11 years of practice) of babies with an intact atrial septum, like Ethan.  Both babies died.  He said that the problem is that the lungs fill up with fluid so fast, and there is no way to get it out.  Since Ethan has this anomalous decompressing vein, hopefully he has a little bit more of a chance.  But only time will tell.  There are so many question marks.  He also said that things change so much once the baby comes out and takes his first real breath.  After that, things can be very different from what they saw in utero.  So we will prepare and pray.

I think that is all the highlights from yesterday.  While writing this post, Megan called me and told me that everyone's on board for a September 30 delivery date.  Yay!  So that is the plan... for now.

1 comment:

  1. Laura, I am holding you in my thoughts and I will dedicate the night of the 29th and all of the 30th to prayers for you! Stay well!

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