A Bear for Ethan

A few days ago I received an email from a mother whose baby daughter Gemma was born with Trisomy 13 in 2005. She blessed her family with 52 minutes of life. To honor her, her mother started Gemma's Bears, which are blankets offered to families whose babies have been diagnosed with Trisomy 13 or Trisomy 18. She extended an offer to me to send one for Ethan. I gratefully accepted and today it came in the mail. Here's a picure of what they look like:



I sobbed as I opened it, both because it was such a beautiful, generous gift, and because it represents a child that I may never get to raise. That's really hard to swallow. But at the same time this gift also represents hope for me. Hope that maybe, just maybe, God's will is for Ethan to come home with us to stay. Yet again, I can't say enough to express my gratitude to the people who have reached out to me during this experience. If you'd like to visit the website for Gemma's Bears, here's the link:
http://www.hopefortrisomy13and18.org/index.php?option=com_content&task=view&id=19&Itemid=31

There's a link on the site where you can sponsor a bear for another family, or donate a desired amount. That's how they are able to send the free bears to families. I'm thinking I will sponsor a bear, as a way of paying forward the kindness that has been bestowed upon me. That way another mother can hopefully find a little bit of comfort during a time of grief.

Love,
Ashley

An Outpouring of Support

It continues to amaze me how much support has been sent our way from family, friends, and people we have never even met. In the past few days alone I have received numerous cards and emails from people near and far-even on another continent! I can't begin to express how much that means to me. It has touched my heart and made me cry (but in a good way, if that makes any sense at all). Though this is the most painful situation I've ever experienced, the fact that we have so many people standing behind us is really comforting. It makes things a bit more tolerable (well, as much as they can be given the circumstances). So I just want to again extend my most sincere gratitude to everyone that has been sending us thoughts, prayers, and words of encouragement. Also, thank you to those who have shared their own personal stories of heartache with me. I know it's not easy to think about those painful memories, let alone share them with another person. For that I am extremely grateful. To everyone who is sharing in this experience with us, or going through your own difficult journey, I want you to know that those thoughts and prayers are being sent right back at you from me :)

Love,
Ashley

24 Week Pic

Check Out Ethan's Album!

Hello Everyone,

I haven't posted for a few days because I'm in St. Louis for training until tomorrow. I have been checking my emails, though, and today got a response from a woman with the Living With Trisomy 13 website. Last week I was on it and noticed that there is a "Prenatal Family Album" section. I emailed my story and they have since created an album for Ethan. Here is the link if you'd like to visit:

http://livingwithtrisomy13.org/AlbumEthan.htm


It's basically a summary of our story to inform others who face a similar diagnosis. I'm hoping to find a better picture to use that either has Keith and I together, or an ultrasound if I can get it scanned!

Not much else new going on other than that. I'm just ready to get home again and see Keith and the doggies! I've been gone since Sunday and I'm tired of sleeping in a hotel room! I hope you're all having a good week and I will post more updates soon.

Love,
Ashley

Today's Update

Today was the first time I'd been able to see Ethan since the diagnosis of his Trisomy 13, which has now been nearly a month ago. Although I've been praying hard for God to carry me into this appointment with confidence, I have to admit that I felt very sick to my stomach as I laid down before the ultrasound began. I just didn't know what we'd see or hear from the doctor. Here's what we've learned today:

The Good
1. His face does not appear to show signs of a cleft lip/palate, and everything else on the face appears 'normal' (or at least she didn't mention anything else being wrong)
2. His heartbeat looked good, there are 4 chambers, and as of right now she could not confirm that there was definitely anthing wrong with the ventricles


The Not-So-Good
1. One of his kidneys is still extremely enlarged due to fluid buildup, while the other appears fairly normal
2. There is a buildup of fluid around his brain, a condition known as Dandy-Walker Syndrome


Of course, the abdominal wall defect is still there, which is not new to us. The doctor did at one point make a comment that with all of the severe conditions that Ethan has, he will most likely be a baby that will not live long. While this sounds like a slap in the face, I know that she is being honest with us given the statistics about Trisomy 13 and the congenital abnormalities associated with it. I didn't even cry when she said that to us, but instead simply nodded my head in understanding. For some reason I wasn't filled with a sense of dread or defeat-perhaps it's because I'm not ready to throw in the towel yet. I even told her at the end of the appointment that I'm not giving up hope for this baby. There's no way I'm doing that just yet. I know the odds are stacked against Ethan, but I'm leaving his fate in the hands of God, as opposed the statements of the doctor. Just like they've said, every baby is different. If they can't guarantee me he will survive, they also can't guarantee me that he won't. I'm still remaining hopeful that maybe God's will is for Ethan to come home with us, whether it's for months or years.

Our next ultrasound is not for another 5 weeks. I had to schedule it out a bit further so that it's 2 weeks staggered from the other doctor appointments. The good thing is that we actually got to take home some pictures from this ultrasound. The last two we had (where abnormalities were detected) were not given to us since they had to keep them for examining. A good friend of mine had given me an adorable picture frame a few months ago that has the silhouette of a pregnant mother on it. In the belly, there's a hole cut out for an ultrasound picture to go in and the top of the frame says "I love you already." I've been waiting to get an ultrasound that acually looks like a baby to put in there. The last one we got was at 11 weeks, and it just kind of looked like two round balls. The one we got today will be perfect! You can actually see his face and profile.

I'm sure I won't have any real news to update you on for the next few weeks, but I'll be sure to post pics and any other random thoughts or emotions that I'm feeling. For now I'm just continuing to pray that Ethan grows and develops at the rate he should, and that his heart, brain, and other organs will be okay. Thank you again for all of your continued thoughts and prayers.

Also: Keith got to feel some of Ethan's movements for the first time this past week! It usually takes a few minutes of his hand being on my abdomen before Ethan will decide to move. He was pretty entertained by it & made the comment that it feels like my organs are spasming! Hopefully the movements will continue to get stronger and more "baby-like" as the weeks go by :)

Love,
Ashley

Ultrasound Tomorrow

Hello everyone. Tomorrow morning we have an ultrasound with our perinatologist which may or may not give us more information about Ethan's heart, brain, and other organs. I've been praying all week for God to help us go into this appointment without anxiety. So far I've been feeling pretty good, and have been trying to remain hopeful about things. We knew when we decided to continue the pregnancy that this would be what we would face: appointments that we may dread for fear of hearing more bad news. However, we also know that we are full of faith, and we have said in our prayers that we hope God can fill us with a sense of acceptance no matter what happens because His will is being done. About a week ago at work, I noticed that one of my co-workers had a small piece of paper taped to her computer with the following Bible passage:

Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.
Philippeans 4:6-7

It was almost ironic that I saw this. This is what I've been striving to do for the past 4 weeks, and am continuing to do. Please join us in praying that God will help guard our hearts and that we are able to face whatever comes our way tomorrow. I will be sure to update you with what we learn.

Love,
Ashley

22 Weeks

Meeting With Our New Doctor

Today we were able to meet with the specialist out in Shawnee (Dr. Murphy) whom we will be seeing for the duration of the pregnancy. He was extremely kind and supportive, which I am very thankful for. Today's appointment basically just consisted of us talking about what Keith and I know about Trisomy 13, as well as the frequency of upcoming appointments, etc. There were some questions that I had that unfortunately can't yet be answered until further down the line, when we know a little bit more about Ethan's condition. We will be seeing this doctor on a monthly basis for now, in addition to monthly ultrasound appointments with the perinatologist. We're going to plan on staggering the appoinments so that we're either going to one place or the other every 2 weeks. That way I can have frequent checkups and, hopefully, reassurance that things are okay.

Overall I felt like today's appointment went really well, but then again any appointment that doesn't involve needles or blood is always good to me! It's reassuring to know that we have a doctor who seems to really care about us. In fact, he gave me his pager # and told me I could contact him any time I have questions or concerns. That helps to put my mind at ease a bit.

Other than that, there's really no other news to report. I'm still continually praying that Ethan will continue to grow and that he will get stronger. I thank God every day for this pregnancy because I already feel like it is already making me a better person. As always, thanks for your support and prayers- they have no doubt also contributed to that!

Love,
Ashley

Better Start Buying Lottery Tickets...

Today we were able to view the final results of the chromosones from the amnio. The good news is that it is the fluke, 1 in 100,000 occurrence and not genetically linked. So (assuming/praying lightning won't strike twice) we have an extremely slim chance of this happening in a future pregnancy. We were pretty relieved to hear this. Although I must admit that going through this experience, I may never feel 100% confident in future pregnancies no matter what the odds are.

We also found out that this is a full Trisomy 13, which means that all of Ethan's cells are affected by the third chromosone. There are three types of Trisomy 13, and this is considered the most severe. As I've said before, we don't yet know the full extent of the anomalies that our baby has besides the abdominal wall defect and enlarged kidneys. We have another level 2 ultrasound scheduled for next Thursday, which will hopefully get a better look at the heart and brain to look for any abnormalities. I am still praying that the heart is okay. I'm also praying that the brain might be only slightly affected, but I'm not going to kid myself and believe that it won't be affected at all. I know that this is almost never (if at all) the case with Trisomy 13.

I feel a little more relieved after today's appoinment, and hopefully I'll remain that way as we go into tomorrow's. I already know that the sick feeling will most likely return as I go to the ultrasound next week, but I'm trying to focus on each day as it comes. A mom who recently e-mailed me gave me a quote that her daughter lived by as she went through a similar experience:

"Don't go borrowing tomorrow's sorrows"

This is what I intend to do. I will appreciate each day as it comes, and not waste my time worrying about what's going to happen tomorrow, a week from now, or next year. Of course, this is easier said than done. But I'm going to do my best not to give in to the worries that try to take over my mind.

I'll be sure to blog after tomorrow's appointment and let you know how it goes. Thanks for all of your continued support. You have all been in my prayers as well!

Love,
Ashley

Appointment Today

Today Keith and I have an appointment to meet with the perinatologist who did my amnio. We should be finding out the final results of the chromosones, and I'm not sure what else we might go over with her. I have to admit that there's a little bit of anxiety creeping up on me again. I guess because we've received bad news each time we've gone to that facility, I now associate it with awful feelings. But I suppose all I can do is surrender these feelings to God and hope that he can fill me with some sort of sense of calmness.

Tomorrow is our appointment with our new specialist, and I'm also kind of nervous about that. I really hope that he's a supportive, sympathetic doctor who will help us through the rest of this pregnancy and beyond. I'm not sure what the visit will entail besides discussing future appointments and possibly delivery. I will be sure to post updates after both of these appointments.

Thanks for you continued support, and please join us in praying that God will help us feel brave and calm no matter what comes our way.

Love,
Ashley

Happy Easter

We are now back home after a quick trip to Omaha this weekend to see family. Last night we celebrated Easter with Keith's family, and this morning we did the same with mine. It was nice to see everyone, including our niece and new little nephew. It's fun to have little ones around when you celebrate holidays. We couldn't have asked for any better weather for this visit. This is the first year I can remember in awhile that it's actually felt like spring on Easter! The last few years it seems like it's been unseasonably cool. I love it when I can actually wear a spring dress and be comfortable!

This evening we're just relaxing and trying to enjoy the last bit of the weekend. We took the doggies on a little walk, and now are going to cozy up on the couch to watch some television. A nice way to end the night!

As I'm writing this, I'm thinking about what our priest talked about at Mass today regarding the meaning of Easter. Easter is all about hope and new life. Moving from sorrow to joy. The death of Jesus represents sadness and despair, but his ressurection gives us hope and fills us with peace. In a way, I feel like the story of Easter applies to our story as well. We have gone through initial feelings of grief and hopelessness, but as we made our decision to continue this journey, we felt a sense of peace and happiness. I know our story is just beginning, and certainly this may not be the last time we feel pain or sorrow. But for today I'm choosing to focus on the celebration of Easter- of joy, happiness, and life. I hope that you and your family were able to enjoy this holiday together, and may you also be feeling a sense of peace and happiness.

Love,
Ashley

A GOOD Friday

Today has been a really good day for several reasons. First of all, I started my new job at AAA. While I am still a "newbie" and haven't yet been trained in all facets of my role, I was able to jump in and help a lot since I have prior experience. Everyone at the office seems really nice, and they were very welcoming to me. As a bonus, I was lucky enough to start on a day that they were doing an office cookout! They had lots of yummy food for lunch, and one of the insurance agents even grilled some burgers and hotdogs! However, since it is Lent, I did have to forgo those and make a cheese sandwich instead. I still enjoyed it though! All in all my first day went really well, and I look forward to receiving more training and taking on more responsiblities.

Today was also a good day because I'm still carrying Ethan. I thought about how my appointment would have been this morning. I imagine that I'd be feeling very empty and heavy hearted right about now. I'm so thankful that I don't feel that way at the moment. While I'm aware that the future is unknown and I could very well have those feelings at some point, I know that it would be due to reasons outside of my control. So for now I'm just extremely grateful to be living in the present, for each day that I wake up happy and feel Ethan's little fluttering movements. Those are the things that make for a good day, and today was definitely a GOOD Friday!



Love,
Ashley

Last Day Being Unemployed

We moved to Independence almost 6 weeks ago, and since that time I have not been working. Before we moved, I was employed as a 5th grade teacher in Little Rock. I have to admit that when I found out we were moving, there was a part of me that was a little giddy about the fact that I'd have a "break" from working. Anyone who teaches or knows a teacher knows that it is a very time-consuming (though rewarding) job. I worked many 11 hour days, and devoted at least one of my weekend days to grading, lesson planning, or general classroom projects. There were ( I'll admit numerous) times while teaching that the prospect of staying home all day sounded downright dreamy. When I moved to Little Rock, I never really got the chance to try out the whole "stay at home wife" thing because I got my job within 4 days of moving there. I knew that wasn't likely to happen as quickly this time around. Don't get me wrong, I didn't want to be at home permanently. I merely wanted a 2 week break, a vacation of sorts. I just wanted a chance to catch up on some things. To re-connect with my old friends Ellen, Oprah, Regis, Kelly, and the gals at The View. Sounds pretty good, right?

If there's one thing I've learned in these past 6 weeks it's this: Unemployment is highly overrated. As great as it's been to wake up and live my life without a schedule, it has very much grown old. There are only so many times that you can go to the mall or Target. It started to get to the point where I had to ration my errands and limit myself to one a day just so I could have something to do throughout the week! It has been depressing to realize that I could lie in bed all day doing nothing and it wouldn't matter. But of course, I don't. I am up before 7am with no plans. Plus, with everything that's been going on the last few weeks, I've had way too much time to sit around and think about things. I started to think that I might go insane if this continued.

I am happy to say that I got a job working for AAA here in Independence, and I start tomorrow. I worked at AAA in Omaha for the past 5 years during the summers and some school years. I will hold a similiar position to the one I had before, with a few more responsibilities. I am so ready to start! It will be a nice change of pace, and I'm looking forward to keeping busy.

*Side note: If I ever complain about this job for any reason, kindly direct me to this post so I can remember what it's like on the flip side. That will help me keep it all in perspective. Thanks :)



Love,
Ashley