Today's Update

Once again I felt some anxiety as I laid down for our ultrasound this morning. Not too much has changed since our last one. Unfortunately, Ethan's kidney that has already been quite enlarged is even more so. As soon as his abdomen showed up on the screen I could tell; it was a huge black circle. This certainly isn't a good thing, but it also isn't life-threatening, as a person can survive with one functioning kidney. Again his heart looked good, beating strong, and she still couldn't confirm anything wrong with it. She tried to get a good profile shot for us, but the little stinker had his arm in front of his face! The picture she did get of his head has his forearm and elbow sticking out, making it look like he's sportin' a large bird beak. Not exactly the photogenic pose I was hoping for ;)

I also asked about Ethan's overall growth, whether it was on track or not. An average baby at this many weeks weighs close to two and a quarter pounds. Ethan weighs one pound 9 ounces. So he is quite a bit smaller than he should be, but that is common for Trisomy 13 babies. I had a feeling he probably wasn't as big as he should be.

I'm still striving to remain optimistic right now, regardless of the news we receive at these appointments. Our next ultrasound is scheduled for 4 weeks from today, on June 17th. In the meantime, I'm just going to live in the moment and enjoy each day with Ethan. Which reminds me, I almost forgot to mention that I have maternity pictures scheduled for this weekend! On Sunday, Keith and I are meeting with a photographer who volunteers for an organization called Now I Lay Me Down to Sleep. They take photos for parents whose babies have a terminal illness or diagnosis. I think it will be a nice way to celebrate Ethan and this time we have together. I will be sure to post photos as soon as I can!

As always, thank you for your continued prayers and support.

Love,
Ashley

Ultrasound Tomorrow

Tomorrow morning we have another ultrasound appointment with our Perinatologist. It's been 5 weeks since our last one, and I can't believe how quickly time has gone by. May 20th seemed so far away when we scheduled the appointment! I have to admit that I feel a little nervous about going again. Keith and I are praying hard that the heart will still look okay and that we won't hear any further bad news regarding his condition. Could you join us in that prayer? I'm at the point where I just want to tell the Perinatologist not to tell us anything negative because it just stresses me out, and at this point it doesn't really matter. As long as the information gets passed on to our doctor, that's what is important. I'm carrying this baby regardless, and I feel like hearing more and more bad news might ruin my enjoyment of the rest of the pregnancy. But then again I also feel like I want to know as much as I can about how he's doing. It's so tough! I guess I'll let my feelings tomorrow guide me, and I'll be sure to post an update after our appointment.

Thanks again for all of your thoughts and prayers!

Love,
Ashley

27 Weeks

Ethan's Ultrasound

Here it is, your first peek at Ethan! This is our ultrasound from a few weeks ago. We finally got a chance to scan it last week. I gave framed copies to my mom and Keith's mom for Mother's Day, so I had to wait until after they opened them to post it on here. Wouldn't want to ruin the surprise! I'll kind of describe it to you in case you have trouble making out what you see:





On the right side of the picture is Ethan's face. It's a profile shot, so you can see one of his eyes, the point of his nose, and his mouth/chin. The left side is his abdomen. You'll notice two dark spots; those are his kidneys. You can clearly see that one is very large compared to the other. There is also some darkness on his skull, and I'm not sure if that's from the fluid around his brain, or just shadows.

This is the photo I have framed in our bedroom. It makes me happy to look at it, and I hope we get another one to keep when we go for our ultrasound on May 20th. I will be sure to scan and post that as well.

Happy Mother's Day to all of the moms out there! I hope you had a wonderful day.

Love,
Ashley

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.

Love,
Ashley

A Little Bit Glum

These past few days I've found myself thinking, rather dreaming, about what I would be doing right now if this were a normal pregnancy. Just a few months ago I was so excited to find out the sex of our baby so that I could jump into full-on planning mode. But of course that's when the diagnosis of Trisomy 13 was made, and all preparations went on indefinite hold. So I haven't ordered baby furniture. I haven't bought baby clothes. Haven't registered for gifts or decorated a nursery. Instead I have an empty spare bedroom with a few items that people have given me. That has me feeling down. After all, isn’t the best part of a pregnancy supposed to be the planning and purchasing of cute little baby things? It stings to realize that I haven’t yet felt that I could do that. There’s kind of a struggle going on between my head and my heart. My heart feels hopeful that Ethan could come home with us, and feels that by not preparing anything, I’m not truly keeping that faith. My head (which controls that superstitious part of me) feels that if I buy anything I will be tempting fate. Which leads me to believe that I would rather be unprepared and have Ethan come home with us than have the opposite occur. I’ve had mothers tell me that they chose to go ahead and buy a crib and some small items, if nothing else than as keepsakes or to use in a future pregnancy. I can certainly understand that, and may in fact do the same. But man, it sure is hard. I mean, you’re supposed to buy things for your baby, not simply to remember him or her by. I guess that’s the roughest part of this journey- feeling a bit robbed of some of the typical joyful experiences of pregnancy.

I’ve had so many people tell me how much they admire my strength and positive attitude. I strive to remain positive every day, and for the most part I am. But I’d be lying if I didn’t reveal the painful thoughts and feelings I have as well. And lately there just seems to be more of them.

So, thank you for reading this and essentially listening to me vent. I will be sure to let you know if or what baby purchase we decide to make. As always, I continue to appreciate your thoughts and prayers.

Love,
Ashley

25 Weeks