New Contact Info

Hello friends,

I've changed my email address, which is now updated in the "Contact Me" section. I want to make sure that all of the wonderful people I've met through my blog have the new address so that we can keep in touch!

Hope you're having a great week!

Love,
Ashley

Plenty To Be Thankful For

I cannot believe that another Thanksgiving is drawing to a close. Today was the first family gathering of the holiday season, and it’s felt rather bittersweet to me. While I certainly have very much to be grateful for, there is also a sadness within my heart. My mind has been bouncing between thoughts of what was and what could have been. I found out I was pregnant just before Christmas last year and (according to my calculations) it appears that it was right around this time that Ethan was beginning to form in my belly. It seems so crazy to think that I had no clue this little miracle was taking place inside of me! Once we knew we were expecting, my mind automatically fast-forwarded a year, and I pictured us celebrating our baby’s first holidays. But we’re not doing that. And who knows when we will. Sometimes I feel like we’re “back at square one” so to speak. We had 35 glorious weeks with our Ethan, and though he is now our angel, we have no physical children. On the surface, things are like they were a year ago-just the two of us. And I find that frustrating. Patience is a virtue that I must admit I lack a bit of, but this is one situation in which I must muster all that I have. It is not in my control if or when we conceive again. I must be patient and hope that if it’s God’s will for us to be parents again it will happen. It’s hard sometimes to maintain that hope and faith, but a recent tragedy has given me more perspective on this. A few weeks ago a family friend was in a very severe car accident. Her name is Amber, and she was a grade younger than me in school. Her mom babysat my brother and me, so we knew her family well. And unfortunately, this is not the first time they’ve faced such a scenario. They lost their youngest daughter in a car accident a few years ago. To think of their family enduring such pain again breaks my heart. But, by the grace of God, Amber has made remarkable progress since her accident. Her father and brother have been keeping a blog that is documenting this progress. What struck me today while reading her brother’s post was when he talked about trusting in the Lord and His plans for us. It can be easy to doubt Him and harbor anger when we are presented with painful events in our life. He made a great point about how at times we can be devastated when God’s plan differs from our own, or when we feel our prayers go unanswered. The statement that stays with me from his post is that “God works for the good in our agony.”
So instead of focusing on what I would like for God to give us, or resenting what I feel He has not, I will turn my attention to what we have already been blessed with: Wonderful, supportive families. Great friends. A home. Our health. Our jobs. Each other. And I couldn’t forget the doggies (though some days I wouldn’t exactly refer to them as “blessings”).

I hope that you all had a wonderful Thanksgiving, and that you have much to be thankful for. If you would, please keep Amber and her family in your prayers, that she will (in whatever amount of time it takes) make a full recovery- physically, mentally, and emotionally.

I suppose I should wrap this up for now. I’ve got to get some rest for tomorrow’s shopping expeditions! It should be interesting…and hopefully I won’t regret venturing out into the madness that is Black Friday!

Love,
Ashley

Happy Halloween!

From Charley...



...And Wendell







Love,
Ashley

With Gratitude

I haven't yet posted a much-deserved thank you to our family and friends who so generously donated to Ethan's memorial fund. We were honored to be able to make donations to Now I Lay Me Down to Sleep and Hope for Trisomy 13 & 18. These charitable organizations extended to us such compassionate services and keepsakes that we are forever grateful for. It is our hope that they can use these donations to do the same for another family facing a similiar situation.

There is a memorial page on the Hope for Trisomy 13 & 18 page that pays tribute to Ethan and acknowledges each person who donated on his behalf. Here is the link if you'd like to view it:
http://www.hopefortrisomy13and18.org/index.php?option=com_content&task=view&id=47

Again, we say THANK YOU from the bottom of our hearts.

Love,
Ashley

Time For A Change

After a few weeks of thinking about (and forgetting) a new title for my blog, I've finally made a decision. I chose this one because I feel that in so many ways Ethan has impacted me. My faith, my relationships, my outlook on life and overall being have been enriched by him and this experience. I don't think I'm a completely different person than I was a year ago; but rather a more "enhanced" version of myself. My priorities have shifted. My perspective has been altered. Things I used to think were so important now seem petty. Things I used to take for granted I now appreciate. I’m not saying that I’ve been transformed into Mother Teresa or anything. But I do think that I have become a better person than I was before.

What started as a blog to inform you about Ethan has now become one that honors and remembers him. I have met many wonderful people in the past several months, and this blog has so much to do with that. I hope that it can still be a source of comfort, insight, and faith to other moms out there. Particularly those who have, are, or will be carrying a baby with a terminal diagnosis.

I haven’t been so good about posting on a regular basis, partly because I haven’t felt that I’ve too many interesting things to say. However, I will be continuing to blog and I hope that you will continue reading as I share with you my life. A life that has been enriched.

Love,
Ashley

Where Is the Time Going?!

That's what I keep asking myself. I thought that after Ethan's passing, with no more doctor's appointments every two weeks, time might seem to slow down a bit. But yet here it is, late August already! It's been a few weeks since my last posting, so here's a brief recap of what's been happening.

First, Keith and I have been attending the Grief Recovery program offered through our church. We've been to 3 meetings so far, and it is going well. It is nice to get a chance to connect with others in our community. This program has helped me to realize that there are many emotions involved in the grief process, and every loss experience is different. I'm learning that there is no "right" way to grieve, and no definite time period in which it should be completed. Reactions to loss are unique to the person experiencing them, and therefore cannot be compared with anyone else’s. I'm glad that we decided to join this program, and I think it will continue to benefit us in the weeks to come.

We also celebrated our 2nd wedding anniversary, which was August 8th. We decided to go to the Bob Dylan concert the night before, which was held at Starlight Theatre in KC (an outdoor venue). As we were listening to the opening act, Keith pointed out a man who was walking towards us. He thought looked an awful lot like Harrison Ford. I turned my head to look, and confirmed that it was indeed him. That’s right folks, Mr. Indiana Jones himself was at the concert! Talk about random! We spotted him a second time walking to the concession area and I attempted to take a quick photo from afar. But unfortunately my flash was too delayed, and instead I got a picture of a brick pillar that he was passing behind. Darn you, Canon! Overall it was a good time and we’d only wished we’d known about Starlight earlier (before the end of its season). I love outdoor concerts, so hopefully there will be some good ones to go to next summer!

Lastly, I had my 6th week post-partum checkup on Thursday. It went well and things seem to be healing as they should. My doctor was again very supportive, and we talked about the prospect of Keith and I trying again in the future. He advised us to wait until my body and hormones have gotten a chance to get back to normal. Trying too soon can have an increased risk of miscarriage. I keep going back and forth between wanting to try again as soon as we can, and wanting to avoid it as long as possible. Right now the emotions from our last pregnancy are still there, and the fear of something happening again is quite strong. However, I also know that I very much long to have a child. Not to replace Ethan (as no baby ever could), but to share our love and his legacy with. But I know that to some degree it’s out of my hands, so all I can do right now is be patient and see what happens in the months to come.

So that’s our last few weeks in a nutshell (For some reason whenever I use that phrase I think of Austin Powers saying, "No, this is me in a nutshell! Help, I'm in a nutshell!" Okay, moving on...) Thanks for continuing to read our blog, and stay tuned for a possible name change. I’ve been pondering this for awhile, since “Baby Hoff” is a really vague name, and now this blog is about more than just that. Hopefully I’ll make a decision on this soon.

Hope everyone has a great week!

Love,
Ashley

Grieving

I can’t believe it’s already been over 4 weeks since Ethan was born. I have to say that I am handling this situation better than I imagined that I would. I thought that I might become closed off, have trouble getting out of bed, or avoid people. I thought that I would generally lose my spirit. I’ve found, though, that I feel pretty good. Sure, I have my moments of breakdown. My heart still hurts. But it isn’t as bad as I had anticipated. Perhaps it’s because I mourned the potential loss of Ethan so many times that when it actually happened, I was more prepared. I think I’d be feeling much worse right now if this had been an unexpected loss. We knew for months that there was a possibility that Ethan might not make it. Does that make the pain any less? No, not really. But it does take away some of the shock that can make it hard to begin the grieving process. Speaking of that, Keith and I decided (okay I decided, he just agreed to it ) that we should join a grief recovery group that was being offered at our church. It is a 12 week program, and last Tuesday was the first meeting. Initially I kind of debated joining because I have been feeling so strong lately that I didn’t necessarily think this would benefit me. But after listening to the facilitator speak and reading some chapters from our book, I’ve realized that I still am experiencing grief. It may not be outwardly obvious, but I am. I think this program will be good for me to not only deal with my grief over this loss, but also give me the tools to handle future losses that I will experience. And hopefully it will help me to better offer support to someone else experiencing a loss.
I decided this week that I am ready to go back to work. Originally I was planning on taking 6 weeks off, returning the week of August 16th. However, I’ve been feeling physically well and am getting sick of sitting around at home. So I’m going back this Monday. I think it will be good for me to get back into a normal routine again. I’ve missed the people I work with, who have been so supportive during all of this. I can’t say the same for TripTik routings, though! I tried to tell them that the doctor told me not to do TripTiks for awhile, but I don’t think that’s going to work…:) Those are our map routes that we do for customers. I was just beginning (key word beginning) to get the hang of them before I left, so I’m afraid I’ll be a little rusty! But I guess I’ll just have to get used to doing them again.
Thank you for all of the prayers and support you’ve all given to us as we grieve and begin to heal. I’ll be sure to keep you updated on how we’re doing, especially with the grief recovery program.

Love,
Ashley

A Terrible Month

Yesterday Keith and I received news that sent us both into shock. We have a couple that we are friends with, Jenny and Josh, that we grew up and went to school with in Omaha. They moved to the Kansas City area just over a year ago, and it was comforting to know that we had friends nearby us when we moved here. This weekend they had gone back to Omaha for a wedding, and had decided to head back home right afterwards. They were in a horrible car accident early Sunday morning, just north of St. Joseph. Josh was seriously injured and taken by lifeflight to the nearest hospital. Jenny didn’t make it. I can’t even begin to describe the sadness and shock that has filled my heart. When something like this happens, you forget about your own grief. Yesterday was the first day that I hardly thought about Ethan at all, because I couldn’t get my mind off of Jenny and Josh. They had sent us a card right after our loss, and just last weekend I had gotten a beautiful floral arrangement from Jenny. I never got the chance to thank her for that, or just talk with her one more time. She was a beautiful, caring person, and will be deeply missed by everyone who knew her.

Friends have told us that right now Josh is stable, but hasn’t yet been able to verbally communicate. I pray that his physical recovery will be swift, and that he will be healed 100%. I know that will be a long road for him and his family, and I also pray that God stays close to them and gives them comfort. When we were in high school Jenny’s mom passed away suddenly. For this kind of tragedy to happen not once, but twice, to a family is unimaginable. I pray that her dad and sister are able to find peace and healing, and I know that she is now safe with her mom in Heaven.

Please keep Jenny, Josh, their families, and friends in your prayers. It’s really hard to take this in right now, and I’m just trying to remember all of the great memories we have with them.

Death leaves a heartache no one can heal, love leaves a memory no one can steal.
-Author Unknown

You are loved, Jenny, and will never be forgotten.

Love,
Ashley

Awkward

Well, it happened. That uncomfortable situation that no woman (especially myself) wants to find herself in post-partum. Keith and I went out to dinner tonight. As she was clearing the table, our waitress smiled at me and asked, “So when are you due?” Ouch. In her defense I will say that I do still have a bit of a belly on me, and the dress I was wearing had an empire-waist (which when sitting down, I’ve learned, clearly accentuates that). She definitely caught me off guard, though, and before I could think I blurted out, “Actually I just had a baby a few weeks ago.” It was definitely an insert-foot-in-mouth moment and she proceeded to tell me I looked great for just having a baby and she actually thought I was just a few months pregnant. Super. And of course the obvious question then followed: Where’s your baby?
I felt a wave of panic building up. Crap! Why did I tell her that? I thought. “He’s at home. Someone’s watching him,” I lied.
“Oh, well how nice for you guys to get out!” she exclaimed.
I managed to maintain my composure as we paid and left before crying in the car. Not just because I feel fat and have a constant reminder of my pregnancy still looming on my mid-section. I cried because I so badly wanted what I had said to be true. I wish we did have a baby and someone was watching him at home. But we don’t. I know that this situation could present itself again in the next few weeks or months until I lose the last of the remaining baby bump, and I just hope I can handle it as well as I did tonight.

Love,
Ashley

Footprints

Back in April I decided that I wanted to start writing letters to Ethan. I thought this would be a good way for me to “talk” to him through the womb, as well as have a keepsake of my pregnancy that I could look back at and reflect on. I didn’t have a journal, so on my lunch break one day I stopped into Hallmark to see what they had. After browsing the shelves for a few minutes, I noticed one that caught my eye. I knew I had to get it. The front of it had a beach scene, with the word Footprints across the top. Underneath was this story, which you might have heard before:

One night a man dreamed he was walking along the beach with the Lord.
As scenes of his life flashed before him, he noticed that there were two sets
of footprints in the sand.
He also noticed at his saddest, lowest times there was but one set of footprints.

This bothered the man.

He asked the Lord, “Did you not promise that if I gave my heart to you that you’d
be with me all the way?
Then why is there but one set of footprints during my most troublesome times?

The Lord replied, “My precious child. I love you and I would never forsake you. During those times of trial and suffering, when you see only one set of footprints, it was then I carried you.

This really resonated with me. There were times when I had felt angry with God that He would put us through such an awful experience. I felt like I was being punished for something bad I’d done in the past, some sin I’d committed. I felt abandoned. Reading this helped me to realize that I wasn’t alone. God was still with me, He hadn’t left me. He had brought me to this challenge and He would carry me through it. I think it’s hard for all of us to remember that God is with us in times of despair. We want to believe that God is only there to bring good things to us, that He would never put us through pain or sorrow. When bad things happen to us, we naturally tend to think it’s because God has left us. But the truth is, He’s right there with us. Carrying us.

I still write letters to Ethan, and it's been a very soothing activity for me. Each time I get out the journal, I am reminded of God's presence in my life. There have been many times in this journey that I only saw one set of footprints.

But now I know they weren’t mine.

Love,
Ashley

Meet Baby Ethan

I've finally managed to get all of the pictures together from various cameras. My sister-in-law took a majority of our pictures for us, and she did an amazing job. She managed to get some candid shots, as well as photos of family members holding him. Now I just feel bad that I don't have a picture of her with Ethan, since she was taking them. I think my favorite pictures are the ones of his little hands- they were so soft and look absolutely perfect.
Here are some of our photos:

















Love,
Ashley

A Few More Angels

For the last couple of months I've been corresponding with some other moms who were also carrying babies with Trisomy 13. Oddly enough, they were due within just a few days of me, in early August. Together we shared the same hopes, dreams, fears, and anxieties of our babies' arrivals. One mom had informed me 2 weeks ago that she was going to have to be induced on Monday, July 5th. I felt such heartache for her, knowing that she must be dreading that day, and would probably not be enjoying the holiday weekend leading up to it. It just seemed so soon. Little did I know that I would also end up delivering that quickly. Her angel Caleb arrived at 5:22am on Tuesday, just 3 hours after Ethan. He was alive at birth, and his parents actually got to bring him home with them on Thursday. They went to bed with him nestled between them. He passed away peacefully that evening in his sleep, literally surrounded by love.

Another mom texted me while I was in the hospital on Tuesday to tell me that she had gone in to the doctor's office and they were not able to find a heartbeat. I was devastated when I heard that news. She was induced and delivered her angel Owen on Wednesday, July 7th at 6pm. Like Ethan, he felt no pain and didn't have to suffer. He was loved unconditionally by his family.

How ironic it is that the three of us were all carrying our boys, due around the same time, and ended up delivering them within one day of each other. I can’t help but believe that God had special plans for our sons, and that is why He took them together so early. I like to think that they’ve already met each other, and are playing together in Heaven.

If you would, please keep angel Caleb, angel Owen, and their families in your thoughts and prayers. Pray that their families are able to find hope and comfort during their time of grief. Like us, they have a long road of healing ahead, and hopefully God will hold them close and fill their hearts with peace.

Love,
Ashley

A Beautiful Memorial

On Saturday morning we had Ethan’s memorial service. It was heartbreaking for me, but I couldn’t have asked for a more beautiful way to honor his life. I was overwhelmed by how many people attended. The outpouring of love and support shown to us was amazing. The priest who married Keith and I officiated the service, and he did a wonderful job. We concluded with a balloon release. We had balloons that represented the love that we were sending up to Ethan in heaven. On the count of three we released them together. The balloons slowly made their way up to the sky together in one large bunch, never separating. It was breathtaking.

We headed back to Independence this morning, and it was surreal to think that exactly a week ago we were doing the same thing. So much has changed in that time. One Saturday I am home for a baby shower, and the next I’m there for a funeral service. It’s so strange to think about. I find myself going back and forth between emotions. The first, of course, is sadness. And to be honest, I feel like I miss my pregnancy almost more than the baby himself. I think it’s because I had eight months with him inside of me, verses just one day with him after he was born. I miss feeling his movements, and knowing that I was taking care of him. My pregnancy also represents a time of hopefulness for me, and now I no longer have that. I find myself forgetting at times that I’m not still pregnant. It will probably take some time for me to adjust to that.

On the other hand, I also feel a sense of relief. No longer do we have the fear and anxiety that has plagued us at various points during my pregnancy. I was supposed to have another ultrasound this Thursday, and I know that I would have dreaded it. Who knows what negative or scary things we might have heard. I also don’t have to fear labor and delivery or what was going to happen afterwards. Now there is a sense of closure, that God’s will has been done. We can finally begin traveling the road to healing.

I’m going to end this post with a picture from the balloon release. It’s such a peaceful and beautiful image.



Sending lots of love up to Ethan.

Love,
Ashley

Service Planned

Tomorrow Keith and I will be heading back to Omaha. We are having a service there for Ethan on Saturday morning at 11:00am. It will be held at Braman Mortuary (for those from the area, it is the 144th St. location), and we welcome anyone who would like to attend. There will also be an obituary in the Omaha World-Herald tomorrow with more details. We picked up Ethan's ashes this afternoon. It was a very difficult thing to do, but the urn we chose is beautiful. We decided on a box made of walnut wood with a cherry finish. It has a teddy bear engraved on it, along with Ethan's name and birthdate. It almost reminds me of a baby block, which is very appropriate. We knew we didn't want a traditional vase-like urn because we wouldn't be able to engrave it and it just didn't seem right for a child. The one we have is perfect for him and is a beautiful representation of his life.

We've had so many touching comments and prayers sent to us through the blog, email, and phone calls. They bring me to tears each time I read or hear them. We're hanging in there, and I am so lucky to have such a supportive husband and family. Keith has been taking very good care of me, getting me whatever I need whenever I need it. Our parents have been handling the arrangements for the service. I don't know what I'd do without all of their help.

Today has again brought its share of ups and downs for me, but the continuous love and support you’ve all been giving me has helped to ease the pain a bit. Thank you for that.

Love,
Ashley

Ethan's Birth Story

This weekend, as I detailed in one of my last posts, Keith and I made a trip to Omaha. On Saturday my best friend and sister-in-law threw a small shower for me. I didn’t want anything too big, just family and a few close friends. It was wonderful to get a chance celebrate Ethan’s life and my pregnancy. We spent the rest of the holiday weekend with family, celebrating Independence Day.

On Monday morning I woke up and used the restroom, only to discover that I seemed to be passing more of my mucus plug. This kind of alarmed me, but I remembered that it is possible to lose it in parts. Still, I felt kind of nervous. Keith and I were still at my parents’ house, and were getting ready to head back home soon. I began feeling a crampy feeling in my stomach that would come and go. It seemed to be more noticeable on our drive home. I watched the clock each time it happened and noticed that it would be anywhere from 6 to 10 minutes apart or so, lasting about 20-30 seconds each time. When we got home I immediately grabbed my pregnancy books to see if what I was experiencing was pre-labor or false labor symptoms. From what I read, it appeared to be the latter. This continued into the rest of the afternoon. I spoke with my best friend on the phone and told her what I was experiencing. She was somewhat concerned, and suggested I call the doctor for reassurance. I took her advice and made a call around 6:30pm. My doctor had gone out of town for the week, so I spoke with the one who was on-call. She seemed to believe it was indeed false labor, and told me to drink lots of water and lie down to see if they subsided. If it got worse, I was to call back.

As the night wore on, I started to feel more pain in my lower back. The contractions were still not regular. I could go 5 minutes in between one and 12 minutes between another. Around 10:30 I tried to go to sleep, hoping that they would diminish in that time. But each time I was about to doze off, I’d have another one. By now the back pain felt pretty intense, though it still only lasted half a minute. I kept debating whether or not I wanted to call back to the doctor. Our hospital is a good 40 minute drive from us, and I really didn’t want to go there and then turn around and come home. By 11:45 I knew I had to call. The doctor told me to come in and they would check me, and maybe keep me monitored for the night. Keith and I got up and dressed, and rounded up our overnight bag just in case. As we drove to the hospital the pain seemed to get worse and closer together. I kind of thought it might be because I was feeling a lot of anxiety. We arrived at the hospital around 1am, and went up to the ante-partum area. A nurse was ready for us and took me into the room to hook me up and check me. She put a monitor on me for the baby’s heartbeat, and one to measure contractions. I felt relieved when the baby’s monitor displayed a heartbeat.

She had me lie back and checked my cervix. We were shocked to hear, “You are 6 cm dilated. We need to get you into a delivery room right now.” She got a wheelchair for me and told me they would get an IV started for me, and then an epidural. Two more nurses came in, and they called for the doctor. Meanwhile, another nurse started my IV. Keith made some quick phone calls to our parents in Omaha, who said they’d be there as soon as they could. The nurses all left the room for a moment to get the epidural and make sure they had everything in place. Literally a minute after they left the room, I felt an enormous pressure in my pelvic bone and my water broke in one huge gush. I panicked and told Keith to get someone quickly. The nurse came in and said she needed to check me again. By that time, only a matter of 15 or 20 minutes from the first check, I was fully dilated. This meant I no longer could have the epidural. A feeling of dread swept over me, knowing I was going to have to give birth naturally, not knowing how long or painful it might be. I continued to feel harsh contractions, and was told the doctor was a few minutes away. When she arrived they got me into position to push. I was told that with each contraction, I would have to push 3 times, for 10 counts each. I only ended up doing this for 3 contractions, what seemed like 10 or 15 minutes, before he was born. Ethan arrived at 2:31am, only an hour and a half after we’d gotten there. There was a team present in our room from the NICU, who immediately took Ethan. I knew things weren’t good because I didn’t hear any sound from him after he was born. They tried some compressions and a breathing tube, but after a few minutes with no heartbeat, they had to stop. They gently wrapped him up and gave him to Keith. I think I was in a state of such shock from the entire experience that it didn’t really register to me what was happening. I felt numb. “Does he look okay?” I asked him. Knowing all of the anomalies he had and potentially could have, I had been fearful that my baby wouldn’t look like a baby. “He’s beautiful,” Keith told me. He brought him over and I was in awe of his little face. No cleft lip or palate, and he even had some light brown hair. They measured him and told us he was 3 pounds, 1 ounce and 15 inches long. He was bigger than I thought he was at this point, which was wonderful. I held him and touched his tiny little hands. He was perfect.

When our family arrived later in the morning, we arranged for a Chaplin to come and say a blessing for Ethan. That was the first time that I cried. The reality of what was happening was starting to sink in. They took Ethan for a little bit to get his footprints and such. Two nurses from the NICU came up to talk to us about what they’d noticed about him at birth. They saw that his skin was beginning to peel in some places and that some of the organs in his abdominal wall defect had begun to almost liquefy. This indicated that he had likely passed away in utero days earlier. I was confused by this because I distinctly saw a heartbeat on the monitor prior to delivery. I was told that this was likely my heartbeat, not his. It didn’t quite make sense to me, but I believe it because I hadn’t really noticed definite fetal movements over the weekend. They said that I probably did truly hear his heartbeat at the doctor’s office last week, which meant it might have happened anywhere after Thursday morning. Therefore, it was determined that he was a stillbirth.

Though this wasn’t the outcome that Keith and I had ever wanted, I still feel like God was looking out for us. For one thing, I had an incredibly fast and painless delivery. Amazingly I didn’t have any cuts or tears whatsoever. I had fretted about labor for weeks prior to this, wondering how on earth I would get through it, and it ended up being so smooth. I think God knew we’d been through enough pain in the pregnancy. I also feel it was a blessing that the monitor picked up my heartbeat. I think if I hadn’t heard anything before delivery, it would have been so much worse. At least in my mind I could believe he was still alive and there was hope. It’s really amazing how God works.

Today has been a rough one. We had kept Ethan with us all day and overnight, so this morning Keith and I held him and took some last pictures with him. We left the hospital later in the morning, and leaving without a baby is the most gut-wrenching feeling I’ve ever felt. I’ve cried a lot. I feel like I’m mourning not only the loss of my son, but also the loss of my pregnancy, of time itself. I should really have had 4 more weeks with him inside of me. I already miss him so much.
We’ve made plans to have Ethan cremated, and his remains will stay with us. Since we don’t currently live in Omaha, and move around with Keith’s job, I didn’t want to bury him. It would be too hard not to be able to regularly visit his grave. We will be getting his remains sometime tomorrow, and then will be driving to Omaha to have a service. I’ll share more details about this later.

Thank you all for sharing in this journey with us. I plan to continue to blog, as a way to keep Ethan’s memory alive and help me heal. This is not the end of our journey, just a new chapter. I hope that you will continue to stay with us.
I will be posting some pictures of Ethan soon.

Love,
Ashley

Update

It is with a heavy heart that I inform you all that I went into labor last night unexpectedly and delivered Ethan at 2:31am. Unfortunately, he did not show signs of life at birth and after an attempt to resuscitate him, there was nothing more the doctors could do. I was blessed to have a short labor and delivery before meeting our beautiful son. We are still at the hospital right now, and physically I am feeling very good. Of course I can't say the same emotionally. I will be posting a more detailed birth story for Ethan soon, when I'm feeling more up to it. And I will also share pictures. Thank you for your continued prayers and support. They mean the world to us during this time of grief and healing.

Love,
Ashley

Nothing Big To Report!

I met with my doctor this morning, and he told me he would start checking my cervix at my next appointment, July 15th (he's out of town next week). I was both relieved and a little annoyed by this, only because I had been feeling kind of nervous about being "checked" for the first time and now I'll have to go through that again next time! But what can you do? I wasn't about to insist on it anyway, since I still feel fine. Keith came with me and I think he was kind of disappointed that I didn't get checked because he's now on slight alert since I passed the mucus plug! The doctor reassured him that this could still mean there are several weeks left (fingers crossed that's the case).

Other than that it was a routine visit. He measured my belly and we again listened to the heartbeat-still 144 bpm. My blood pressure was a little bit higher today, but I'm hoping maybe that's because I was so nervous. My doctor didn't think it was anything to be concerned about, so I'm okay with that!

I'm sorry that I didn't have any climactic details to share with you all...I guess we might just have to wait until the 15th! Of course, I will keep posting updates until then, especially if anything changs. Tomorrow Keith and I are heading up to Omaha for the weekend, and I am looking forward to it. And yes, I got the okay from the doctor. He just told me I should probably stop and get out of the car every hour or so to avoid the risk of blood clots. Which is fine since my bladder pretty much has the same time limit these days.

I guess that's all I have to share for today...I hope that everyone has a safe and fun holiday weekend!

Love,
Ashley

A Slight Change in Plans

Yesterday I said that I cancelled my Thursday appointment since I'd already made a trip out there and essentially had everything that would normally be done. I don't want to gross anyone out or go into detail, but yesterday afternoon I then passed my mucus plug. For those who aren't familiar, this is the "plug" that seals off the cervical canal during pregnancy. Some women pass it before birth and some don't. It signals that the cervix is beginning to open. However, the tricky thing is that it can happen anywhere from hours to weeks before actual labor! I called my doctor last night and informed him, and also told him that I feel fine, haven't noticed any pain or discomfort. Since I was not scheduled to see him again until July 15th, he felt it would be a good idea if I came on Thursday so he could check me. I think it's a good idea too because I woke up last night and started thinking about things and worked myself into a nervous tizzy. I had to turn on the tv at 3am to calm myself down and get back to sleep. I'm hoping that he'll check me and find that I'm not very dialated yet...I'm not feeling ready yet! Ethan needs to wait until after July 17th, when I have childbirth preparation class! (I'm a little late on this I know, but I sort of lost track of things during this pregnancy). I'd prefer not to have my "class" be actual childbirth!

On that note, I am going to go upstairs and start packing a bag to have ready just in case. If you could please pray that everything goes well on Thursday, I am not very dialated, and Ethan can stay inside my womb for at least a few more weeks, that would be much appreciated. I will post updates after my appointment.

Love,
Ashley

A Stressful Start to The Day

Over the past several days (and really weeks), I've noticed a change in the type and frequency of Ethan's movements. I no longer have been feeling the usual "pops" I would feel when lying down or just after a meal. Instead I've noticed more feelings of pressure, as though part of him was pressing against me. And I started to feel like I wasn't noticing movement as much throughout the day as I did many weeks ago. I've read in my books that around this time movement can change, but in the past few days I began to get a little nervous. This weekend I started to think I wasn't feeling him hardly at all. The doctors and books all talk about doing the kick count where you lie down and count movements over the course of a 2 hour timespan. You should feel at least 10 movements in that time. Part of me got really nervous and wondered, "Have I even felt 10 movements this whole day?" It was really beginning to freak me out.

This morning I decided to call my OB's office. I originally had an appointment scheduled for Thursday, but I decided my anxiety was getting the best of me. They told me to come right in, and I called Keith to let him know I was going. Although I was panicky, I didn't necessarily feel like he needed to come...I guess I didn't quite have that dreadful gut instint. I mean, I was pretty sure I had at least felt some movement in the last 24 hours. But when you start worrying, your mind plays tricks on you. So during the drive there I prayed to God that there would be a heartbeat. And I also prayed that I would be prepared to handle the possibility that there might not be. My stomach was in knots. I got right in and actually saw a different doctor because mine was not available. The first thing he did was listen for the heartbeat. Praise God, he found it in seconds and it was a healthy 144 bpm! He also took the time to talk with me about everything, and recommended that I start packing a bag at this point, since I'm just about 34 weeks. He also talked to me about making a plan for what Keith and I wanted to happen for Ethan after birth, and communicating that again with the Neonatal staff. For some reason I think I was feeling like we didn't have any control over what might happen to Ethan, but this doctor let me know that we do have the power to say what kind of care we want for him. For instance, if we want him intubabted or if we want compressions done if he's not breathing on his own. I now plan on calling the neonatal doctor again and either arranging a meeting or discussing our plans with her so everyone is on the same page with what we'd like to have done. I felt like he was really informative and helped me to see that we still have some say in this whole thing.

And wouldn't you know it, while we were talking I felt a pretty major movement on my left side. Leave it to Ethan to do that after I had driven all the way there! I kind of felt like he was being the WB Frog who doesn't sing in front of people and makes you look crazy (anyone remember that cartoon??). But I was oh so grateful for that nonetheless! :)

Love,
Ashley

33 Weeks

Today's Appointments

This morning I had two appointments, the first one being the ultrasound. I can honestly say that this was the worst appointment I've had since the one where we did the Amnio. To begin, it was a different Perinatalogist than we've been seeing, because apparently they switch offices that they work out of every so often. We had a man who led us through the ultrasound, showing us everything and pointing out what he was seeing. The new developments are that Ethan's heart appears to take up about half of his chest. In a normal baby it should be about a third of the chest. This means that either he has a small chest or the heart is larger than it should be. It also can indicate that lung development is not as it should be. In addition, he thought there might be a small hole in part of the heart, since there appeared to be a little gap in part of it as it was beating. Again, this is common for Trisomy babies. Other than that, nothing else of his condition has changed. He's measuring at about 2 pounds, which is almost half of what he should be. Basically that equates to measuring at about 27 weeks instead of 32.

The worst part of this appointment came after the ultrasound. The doctor asked me if I had any questions, and I again brought up the subject of delivery. I had been thinking a lot about this lately, wondering whether C-Section would be safer for Ethan or not. I really wish I had just kept my mouth shut and not asked anything. He began with, "I'm going to be upfront with you," which as we all know never means something good is about to be said. He then proceeded to tell me that doing a C-Section would absolutely be an unwise decision, because it is not going to change the outcome for Ethan, and would be riskier for me in the long run and on future pregnancies. Okay, I understand that. But what really hurt was when he brought up the term “meaningful life.” He basically told us that regardless of anything that is done to save him or repair his physical defects, he will not have a high quality of life. I then lost it and cried and told him that I’m aware of the abilities and disabilities that Trisomy babies have, and I’m willing to accept that my child will never be ‘normal.’ He replied with, and I quote, “ It’s not just a matter of being normal. These children often aren’t even aware of their surroundings. If all your baby can do is breathe, is that really a meaningful life?” And he later added, “ Would your time with him just be meaningful to you?” Talk about a punch in the gut! Who the hell is he to tell me what a meaningful life is?! Do I want my child to suffer? Of course not. But I also know that I want to do whatever I can to save his life. And to have him make me feel like that would be a selfish decision that would be benefitting me more than my child really hurt. Oh, and I almost forgot the last thought he left me with which was: "As you know, these babies have a high risk of not making it to full-term." REALLY?? Perhaps he thinks I'm not aware of this, but for Pete's sake, I'm already at 32 weeks! Do we really have to bring that up at this point? I've been trying not to focus on that, because I'm not sure how I'd get through each day if I have that weighing on my mind. Now I know that I’ve made this guy out to look like a jerk, but to be fair I have to say that I know he wasn’t trying to be. Besides those comments he was very honest with us, which I can appreciate. I certainly don’t need someone lying to me and telling me something that’s not true. I just think his method of delivery could use some work.

Thank God for my OB, who is so compassionate. He did give me the same general feedback regarding a C-Section, but at least the way he explained it to me was gentle. I’m so glad I had that appointment last, because it helped me calm down and start feeling a little bit better. But I’m still left with thinking about delivery. Part of me continues to believe that a C-Section, while maybe not life-saving, would give Ethan a better shot at survival. However, I do have to be honest with myself about his severe physical condition, and also look out for my own health. I know that the risks with C-Sections are now rarer than in the past, but I can’t help but feel like I would be that person who has complications in the future pregnancies because of it (after all, I’m that person going through this). Am I willing to put a future healthy baby at risk because of that? I really don’t want to be the one who makes the ultimate decision on this, so I’m going to try to leave it in God’s hands. I’m hoping He will send a signal to me through Ethan or the doctors of what’s the best thing to do. Can you pray that God will do this, and that no matter what type of delivery I have, Ethan will pull through?

Wow, this has been a really long post. Thank you for reading it, and of course I’ll keep you posted as anything else comes up. I have another OB appointment in 2 weeks, and an ultrasound in 4. Let’s hope my regular Perinatalogist is there for that one!

Love,
Ashley

Another Year

Today is my 26th birthday (don't worry, this isn't a ploy for you to send me cards or anything ;)) and I can't help but think about how much my life has changed in just one year. On my 25th birthday we were still living in Omaha, unaware that we would soon be moving to Little Rock. By the end of the summer I had relocated and started a new job. By Christmas I had found out I was pregnant, by February we were told we would be moving AGAIN, and in March we learned of our baby's devastating diagnosis. And then in April I started another new job here in Independence. Whew! I don't think I ever would have predicted all of this happening in just one year. Not only has my physical address changed multiple times over the past 12 months, but I feel like I as a person have undergone a transformation as well. Not only has my faith been enriched in this experience, but I feel like my overall perspective on life has been altered. I see a lot of things differently now, and appreciate little things that I may have taken for granted before.

I also tend to daydream about what my life will be like on my next birthday. Will we still be living here? Will I be celebrating it with Ethan? Might I even be pregnant again? It's too soon to really think that far ahead, but sometimes imagining good things happening in the future helps get me through the present. I can only think of one wish that I have this year. Though I can't tell you what it is (or it won't come true!) I think you can probably guess.

Keith and I will be going to dinner tonight, and tomorrow my mom and his mom are coming down to celebrate with me. We're going to be staying the night at the Embassy Suites near Country Club Plaza. It should be fun! Poor Keith has to stay at home with the dogs...but I think he secretly enjoys that :)

So here's to another birthday, another year of life. I can only hope that there will be many good things to come this year.

Love,
Ashley

Maternity Photos

We now have our maternity photos! After anxiously waiting, our disc of photos arrived today. Janelle, our photographer who also owns a local company called Rain Kite Photography, did a wonderful job. I've posted a few of the "highlights" of our shoot:
















Love,
Ashley

Breakdown in Aisle 10

Tonight was the first time that Keith and I purchased some things for Ethan. We were at Target, and I suggested that we go look at their baby stuff and maybe get a few small items. We first looked at onesies, which was kind of hard because we're not sure what his belly will be like if he has surgery done to repair the abdominal wall defect. So we decided on a few of the gowns, thinking they might be easier to put on him. We continued to browse, and then it happened. The tears led a sneak attack on me. At first my eyes watered just a little, and then before I knew it I was sobbing silently so as to avoid making a scene. There were so many mixed emotions that I felt: fear that he may never use these items; hopefulenss that he will; anger that this situation is even happening to us. I think what hurts the most is that there wasn't much joy in this shopping trip. To be honest with you, it kind of just sucked. Rather than anxiously picking out every cute item I could find like I imagined I would, I merely grabbed a few basic necessities to have on hand "just in case." We only ended up buying 2 packages of gowns, a few flannel blankets, burp cloths, and a package of socks. How pathetic is that? I'm not sure if or when we'll buy other bigger items like a car seat, stroller, etc. I think we'll just play things by ear for now and see how we feel as we get closer. Right now I don't feel strong enough emotionally to do it.

I said several weeks ago that I would let you know if we made any purchases, and that is why I posted this. And of course I will let you know if we decide to get anything more. If you could pray that Ethan does get to use these items, and that God will send me signals that it's okay to go out and buy more things, I would really appreciate it.

Love,
Ashley

30 Week Pic

Long Time No Blog

Hello everyone,

I realized that it's been almost 2 weeks since I've last posted. Not to worry, I haven't fallen off the planet! I guess I've been so busy with work and such that I haven't really had anything interesting to talk about! There really haven't been any updates since my last posting. I am now at 30 weeks, which is exciting and scary at the same time. I'm now a few weeks into my last trimester. A few months ago I longed to be at this point, but now I'm just wanting to freeze time, or at least slow it down a bit so I can savor what's left. I am hoping to post a belly pic this week. Not today though, because I have what I affectionately refer to as "cavewoman hair" (i.e. humidity-induced frizz). But I will try my best to get one up in the next day or two.

Tomorrow I have another appointment with Dr. Murphy. I can't believe it's already been 4 weeks since the last one. After tomorrow I'm going every 2 weeks, which I'm sure will fly by. I'm hoping it will be another positive (and fairly brief) appointment. I will be sure to update if anything new comes about from it.

I suppose I'll wrap this up, but I just wanted to let you all know that I am still alive and well! Thank you for your continued support and prayers.

Love,
Ashley

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

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