A Harsh Reality

I don't even know where to begin...

I guess first of all, Jeff and I want to thank all of you for your support the past few weeks.  We have had so many prayers offered in our behalf and so many wonderful people who care about us and ask how we are doing everyday.  We really appreciate every kind word and positive thought you have sent our way.  It really helps us keep going.  So thank you.

Well, the past few weeks have been full of waiting.  Waiting for Boston to review our case.  Waiting for our cardiologist to call us and tell us what he's heard.  Waiting to have all the information necessary to make the next decision.  Over the past few weeks I had made calls to our cardiologist, but heard nothing back.  So Tuesday at my non-stress test (NST) I was able to visit with our hospital's "program coordinator."  (Her name is Megan and she has been so helpful for us.  She is basically a go-between for us and all the doctors and hospital staff.  She also sits in on the cardiology conference every week where they talk about cases/families like us.  She is in these meetings with cardiologists, neonatologists, the cardiac surgeons, etc. so she really knows what's going on.)  She told me that when she asked our cardiologist about Boston, he still hadn't heard anything back from them and he had been trying to get a hold of them with emails and phone calls daily.  Megan was really concerned for us because she knew this was time sensitive with me being 32 weeks along and them wanting to perform the surgery by 34 weeks.  Anyway, long story short, because she was so persistent, we were able to hear back from Boston on Friday.  I talked to our doctor over the phone Friday afternoon and get a little bit of an idea about what they thought.  He wanted to have us come in asap to get another good look at Ethan's heart and discuss our options.  We set up the appointment for Tuesday morning (yesterday).  [Side note:  I already had an ultrasound appointment later that morning and an NST that afternoon and I wasn't sure how long our cardiology appointment would be.  I called Megan to hear her thoughts about what I should do and her reaction was, "Don't worry, I'll take care of it."  See how wonderful she is?  She totally re-scheduled all my appointments for me and I didn't have to do anything.]

So, Tuesday we headed to the cardiologist.  My mom met us there to give me a ride home, since Jeff was going straight to work after the appointment.  We are so grateful that she was willing to drop everything and be there.  After talking to our doctor Friday afternoon, I kind of knew we would not be having an easy conversation and the more ears hearing the information, the better.  We had a fetal-echo that was actually only about 40 minutes long this time!  I think they were really just focusing on a few aspects of his heart this time.  The sonographer was able to take some cute pictures of Ethan for us and show us the "hair" on his head, his cute chubby cheeks, and we were even able to see him playing with his toes.  :)  He was moving around a ton... she commented that he was being a "wild man" in there.  It was so fun to see him doing so well.

After that it was time to have "the conversation."  Megan came in to see us and actually offered to stay to hear all the same information we were hearing.  That was such a blessing.  She would hear the information otherwise, but this way she heard it first-hand without me and/or the doctors having to relay everything over again.  Our cardiologist first told us that Ethan's anatomy is the same as what they saw last month.  The pressure in his decompressing vein has not gotten any worse, but it is still bad.  He still has hypertension in the left atrium, which is causing damage to his lungs.  He said that this is what is causing the most problems and what will ultimately determine how long Ethan will be able to live.  (Kind of ironic that his lungs are the real problem, not his heart.)

We talked about Boston.  Their success rate for doing this fetal intervention surgery is not good.  It's 50% at best, and they use the term "success" very loosely.  What it means to them is that they baby didn't die right away.  If the baby made it through the surgery okay, only to live a month or so longer, that was still considered "successful."  Also, in some cases they were able to make a hole in the heart and place the stent successfully, in other cases the stent did not get placed correctly, and it really didn't make a difference in the overall health of the baby.  Some babies with successful stent placements died, while other babies with un-successful stent placements lived longer.  All things considered, it really isn't a good option for us.  Jeff asked some great questions that I wasn't thinking of like, "Would it at least stop more damage from happening to the lungs between now and then?"  Our doctor says that they have tried to study that, but there is no real solid evidence that it even does that.  The hard part is that this is so rare, that there are not enough statistics to really know anything conclusive.  Boston is the #1 hospital doing this fetal intervention and their most recent study only had 9 cases to look at.  We talked about every one.  None are very hopeful.  We decided that Boston isn't for us.  It would require moving there for several months (leaving next week) while we did the intervention, made sure I didn't go into labor early, deliver there, and stay (for who knows how long) until Ethan is stable enough to come home.  It just wouldn't be the best situation for us.

So then we talked about Ethan's overall prognosis.  It is not good.  Other babies that are born with this type of anatomy and lung damage do not live long.  Their best guess is that Ethan has a 5-10% chance of living to the age of 5.  That is our best-case scenario.  Even then, his life will be filled with constant hospital stays, numerous medications, and very few "healthy" moments.  This makes me so sad for him.  I wish I could give him a better life.  Most likely we will have him for a few days? weeks? months?  We really don't know.  It really comes down to how healthy or sick he is when he is born. So, the state of his lungs and his oxygen levels.  Good oxygen levels for Ethan would be 50-60%.  At this level, they would actually consider some cath lab or surgical options.  But he may come out with only 30% oxygen levels, in which case, he would be too sick to operate on.  So the better his oxygen levels, the more time we can have with him.

Our after-birth options really come down to deciding between giving him comfort care and letting his body pass on its own, or trying to do anything and everything possible to prolong his life.  To say this is a difficult decision is an understatement.  How do you even choose?  Jeff and I have talked about our initial feelings on this decision and have discussed them with the doctors and with our families.  But please forgive me for not writing them publicly on the internet or sharing them with everyone who asks.  It's just too personal.  It's not easy.  Things can change.  Nothing is set in stone at this point and our feelings may change.  For now we are discussing it as a couple, listening closely to the Holy Ghost and constantly praying to know if what we are thinking is right for Ethan.

Our feelings at this time are very tender.  We are very sensitive.  These are the kind of conversations and decisions you never thought you'd have to think about.  Yet somehow, here we are.  This is our reality.  We know Heavenly Father performs miracles.  Last night we were talking that Ethan's decompressing vein is a miracle.  They have no idea why/how his body grew that vein, but it is his one small chance at life right now.  They are hoping that they can stent it after birth in the cath lab, if he is born with good enough oxygen levels.  But... we also know that we are a forever family, no matter what.  Jeff and I have been sealed in the temple and we know that no matter how much or how little time we get to spend with Ethan, that he will be ours forever after this life.

We understand that you may not know what to say.  I wouldn't know what to say if I was on the other side of this either.  Please know that just saying something is better than nothing.  You can't say the wrong thing.  And really, right now all we need to hear is that we are loved.  Please don't hesitate to send a note, text, call, etc.  It really helps to keep us going.  Thank you.  We love you.