Thursday, May 6, 2010

Today's Appointments

This morning I two scheduled appointments. The first was with my OB. Dr. Murphy was again very kind and asked if there was anything I needed to talk about or was concerned about. I asked about the timeline regarding delivery- whether I would go full term on my own or be induced. He said that we would plan on inducing me a week before my due date. That way, we can make sure it's during the week so as many neonatal staff members as possible can be available to us. He then measured my belly which was right on track for how far along I am, as well as listened to Ethan's heartbeat. A steady 144 beats per minute! We then proceeded with the main part of the appointment: the glucose tolerance test. I wasn't sure what to expect with the glucose drink, since I've heard varied opinions about it. I chose the lemon-lime flavor and I have to say it wasn't half bad! It kind of reminded me of gatorade, with a bit of a syrup aftertaste. After an hour of entertaining myself with a magazine I had my blood drawn and was on my way. My next appointment with Dr. Murphy is in 4 weeks, and then we will go 2 weeks after that. Overall, I felt really positive when I left.

Following that appointment I met Keith over at the hospital for our neonatal consultation. We met with the doctor, as well as a case worker from the NICU. I wish I could say that all of my questions and fears have been alleviated, but that's not quite the case. We were told, as most parents in this situation are, that the recommended route is "comfort care." What this means is that they would essentially do everything to make Ethan comfortable after birth, but not operate on him. This, they said, would allow us the most time possible with him. Keith and I have mixed emotions on this. We understand that doing any operations or major surgeries would be very stressful on Ethan, and not guarantee his survival. And we certainly do want the time spent with him to be quality time, where we can hold him rather than look at him through glass. But we still feel like by only accepting comfort care we might be giving up on him. I told the doctor about all of the children I've read about who are still living with Trisomy 13. For example Josiah, who (as I've mentioned before) had almost identical conditions to Ethan and is now twelve years old. I know his parents received this exact same information, and had they chosen to simply accept it as his fate, he wouldn't be here today. I'm not saying that things would turn out exactly the same way for Ethan, but I also don't know that they couldn't.

We don't need to make any decisions on this just yet, and likely won't know until he's born what will occur. Please continue to pray with us that God will allow Ethan to survive birth and that he may prove to be strong enough to make it through any surgery that could save and extend his life. I'm going to end this post with a touching prayer that a wonderful person emailed me recently. I think it it perfectly describes Ethan.

Heaven's Very Special Child;
A meeting was held quite far from Earth. "It's time again for another birth". Said the angels to the Lord above, "This Special Child will need much love. His progress may seem very slow. Accomplishments he may not show, and he'll require extra care from the folks down there. He may not run or laugh or play: His thoughts may seem quite far away. In many ways he won't adapt, and he'll be known as handicapped. So let's be careful where he's sent, We want his life to be content. Please, Lord, find parents who will do a special job for you. They will not realize right away the leading role they're asked to play. But this child sent from above comes stronger faith and richer love. And soon they'll know the privilege given in caring for this gift from Heaven. Their precious charge so meek and mild is Heaven's very special child.



  1. That is a beautiful prayer, Ashley. We'll continue praying for you guys!

  2. I found your blog through another blog from a mother who just lost their child shortly after he was born. You are such an amazing and strong woman. You are in my prayers!