Unexpected Options

(Originally posted on 2/21/13)

Where to begin?

Well yesterday we went in for our final ultrasound at the OBs office.  Both our mothers were with us and we were excited to see little Elliot!

During the ultrasound after every measurement the ultrasound tech would mention that he had grown.  It wasn’t anything out of the ordinary because he always grows a little, but when she finished the number 1629 popped up on the results graph.

That is the number, in grams, that Elliot is estimated to weigh.  1629 (roughly 3lb 9 oz). That is significant because it means he grew almost 400 g in three weeks.  Not only that, but the number we had been told he needed to weigh to be considered for the heart/lung bypass machine was 2000g.

In December, when they told us about comfort care, they estimated based on the information they had at the time, that Elliot would barely get to 3 lbs., maybe less, by the due date so he is significantly bigger than they thought he would be.

When Dr. Wolfson came in to talk to us we asked about the possibility that Elliot might end up being eligible for ECHMO by the time he was delivered.  He calmly explained that even so his chances of survival wouldn’t be much higher than they already were.   He was very kind and also made it clear that it was something we would need to ask the other doctors as his specialty is the Ultrasounds.

From Dr. Wolfson we met with the Dr. Lee, a perinatologist. We asked her the same questions and she also made it clear that his chances of getting to the 2000 g number weren’t great, and that the estimates on the ultrasound aren’t’ 100% accurate. She encouraged us to talk to a neonatologist so we would really understand what that would entail if it did happen.  She was very sweet and teared up a couple of times while talking to us.

We made an appointment with Dr. Patel, the neonatologist who told us the comfort care news initially, for today at 2:30.

We got to Phoenix Children’s Hospital a little early and he saw us right away.  He asked us to explain to him what we understood about the situation. We told him that we knew that Elliot was still very small, but that he was quite a bit bigger than they had thought he would be.  We also made it clear that we weren’t expecting a miracle or him to live, but that we wanted to make sure that we had all the information we needed.

We both kind of expected him to tell us that nothing had really changed and that comfort care was still the only option.  We were surprised when he told us that based on Elliot’s current size we had moved into a gray area and that there are a couple of options for us.

The first is to continue with the original plan of comfort care.  Basically, they would clean Elliot after he is born and we would be able to hold him in our arms as he passed away. He said that no doctor would ever question us if that were the option that we choose.

The second is to do “viability of life” (I am pretty sure that is what he called them) tests on Elliot once he is born. This means that upon birth they would place a breathing tube down his throat and another tube into his abdomen.  The abdomen tube would decompress the intestines and stomach and then they would use the breathing tube to attempt ventilations.  If Elliot took it well and became stabilized after 5-10 minutes they would transfer him to the NICU and put him on ventilation machines.  We would get to kiss him and take a picture with him before he left.

If these tests didn’t work or it was taking extraordinary efforts to get him stable they would remove the tubes and we would then revert back to the comfort care plan.

Even if they were able to stabilize Elliot and get him into the NICU his chances of survival are still extremely slim. The number of larger children born with CDH that survive is still only 40% and Elliot is still very small.

Our biggest fear if we were to decide to take the second option is that they would take Elliot away and he would pass away without us there.  Dr. Patel assured us that if Elliot were to take a turn for the worse we would get to him in time.

While this might sound like wonderful news it has been extremely hard on us. We had already come to terms with the fact that comfort care was the only option and that Elliot was going to pass away. There was a sense of peace in knowing that there was nothing we could do to prevent this from happening.

Now we feel like we are back to square one and it is nerve-racking and emotional. We have decided to take the second option with the understanding that the most likely scenario is that Elliot never makes it to the NICU. We just don’t want to ever ask ourselves “what if?”

We are forever grateful for all of your support and prayers. They mean the world to us and have lifted us up during this trial.

With love,

Jordan, Casey and Elliot