And one more thing.

Thank you to everyone who have brought meals, emailed or sent cards of support so far. Especially those who have continued to pray for our family. We have been asked by many what our memorial plans are and if there's a way to support us by donation. We are not choosing to have a formal memorial service or burial for Elizabeth. Instead, Jeremy and I plan to spread her ashes in a special place sometime this summer. Donations made in her name to Care Net in Kenmore would mean a lot to us if you wish to memorialize her life in that way. It's a non-profit organization that supports women who choose life for their unborn children despite their circumstances.  The address is: 6524 NE 181st St, Suite 9 (PO Box 82828) Kenmore, Wa 98028. You can find more information on their website: carenetps.org.

That...was awesome.

Hi All, Josey here letting you know I haven't fallen off the deep end or anything! Just been taking time to rest and reflect on one of the most incredible experiences of my life. The words are hard to come by as I am taken aback by raw emotion, but I'll try to fill you in. Have you ever seen a toddler clinging her dad's hand as he navigates her through something scary? She has trust that he knows the way to go and will protect her but she still trembles a bit. That was, and still is me. I had the promise of God's mercy tucked deep inside my heart and knew he would not leave my side. I was clinging to the fact that His timing is perfect and that He had a plan for Elizabeth's life even before she was conceived. Still, I trembled a bit. I walked into the hospital praying "You've got me, right?" He sure did. 

After a birth that was so incredibly well-timed and with the help of the nurses that couldn't have been a better fit for our situation, our girl was born! She brought a peace with her that was so heavy I was glad to already be in bed. After barely moving her leg to let me know she was alive, she looked like she was sleeping the whole time. Her heartbeat was rapidly decreasing. We knew that she was going to leave us quickly so Jeremy and I kind of played "hot potato" to make sure we both got to hold her. The nurse checked her heartbeat a few times to let us know where it was at. The last check though, she didn't have to tell us. Even though she hadn't made a sound or movement, we could tell her spirit had left. It wasn't sad though because I knew exactly where it had gone to. Since we didn't know what to expect, Jeremy and I had talked out all the different scenarios beforehand and I can say that we had the best one. We didn't have to see her struggle or gasp, and we didn't have to spend a long time wondering how many hours we would have left. God has been known to have perfect timing and this was a prime example.

It took me a while to pinpoint a certain word that encapsulated what I was, and still am feeling the most. It might not make sense, but I found it. Privileged. I feel so honored to be able to be Elizabeth's voice and get to hear how her life was impacted by so many. What makes me well up with tears is not as much sadness, or even joy. It's the weight of God's mercy that not only has completely covered me, but that I've had a front row seat as it has touched others. Many of you have written to me saying we have been in your thoughts and prayers. Lots of you have said how much Elizabeth's story has moved you. I wish I could answer every email and text. If I haven't gotten back to you, please know that those words have fueled my spirit and helped me so significantly. I've read all of them and am so appreciative of those who have reached out to us. We still covet your prayers. I have heard from others in this special club we've now joined that hard days are to come. Right now we're just awestruck at what we've seen and heard. Please don't feel sorry for us at this time! We've never been through anything so sacred and have never felt closer to the Lord or each other than right now. Rejoice with us as we get to not only reflect on God's mercy but envision our precious daughter at the feet of Jesus! Yes, we feel like she's missing...but she most certainly is not lost.

One thing I am dreading is going out into the real world without her. I'm worried that people won't know what to say to me so they won't say anything. Will you help me with this? Eggshells are not what I'm used to walking on and I don't want you to feel like you're on them around me. If you see me please say something! You don't have to worry about it being the right thing to say because I probably won't say the right thing back! Jeremy's not as sensitive to this kind of thing, but I really am. I walked the hospital floors thinking "Do they know what's going on?" It's so awkward and I feel vulnerable wondering if it'll be brought up or not. We don't mind talking about it at all, and will answer any question, even if it seems insensitive. Don't think for a minute that addressing our loss will suddenly make us think about it. We're already thinking about it all the time. Even just saying "I heard about Elizabeth" or "I've read your emails" will take the pressure off me. Don't worry about making me cry in front of you. I deal with this little thing called pride. Have you heard of it? If I cried in public the best response to that would be a high five! 

I'm going to get back to resting now. Thank you for walking with us, even if we haven't met in person. Thank you for letting us share our adventure with you. I'll make sure to update again as we continue!

Josey 

P.S. This photo was taken right after Elizabeth was born. She's alive, just still really messy! We had beautiful pictures taken after she had passed that once we get them back will share with whoever would be interested. I want to make sure to be sensitive to you if you're not comfortable so I won't post them on the blog.  

Elizabeth has gone HOME!

Hey everyone Jeremy here! I'm taking over for Josey who is completely exhausted after 1 and a half hours of sleep last night, and delivering the most beautiful baby girl I have ever seen!!! Elizabeth Joan Horst was born 3/5/2012 @ 3:56pm, 4lbs10oz and 18.39inches. She left to be with Jesus about 20 minutes later, she had a very week heartbeat of about 40bpm and did not have much energy to move or open her eyes after being born. Josey, I have to say is what most nurses would call a perfect baby delivering machine! (don't tell her I said that) You would think that she has had 10 kids or something, actual delivery time of about 30 min until Elizabeth was born. And I have proof!

The two lines at the right represent dilation and baby popping out, it was crazy!!! This all was God's timing, he created an almost stress free environment for our Elizabeth to enter this world so we could hold her while she was still alive, and he granted our prayer!!!

I will let Josey fill all of you in on the details, all I can say about my experience is that at the age of 15 if someone had told me the journey that my life would have by the age of 31, I would have laughed in your face. But my faith in God has brought me to a place in my life that I could have never imagined! I also cried like a baby until she was taken out of the room, but my tears (yes held up this whole time) were the most joyous tears I have ever cried in my entire life. Knowing that my baby girl is in heaven and I will someday join her and tell her what a life changing experience she has created for me and many!!!!




-Jeremy

E-Day!

Hi Everyone!

Just a quick note to let you know all is well so far! You must be fulfilling my request for prayers of an easy delivery because it's been progressing and with little pain. Our kiddo is still kicking and handling it fine also. We have a fantastic nurse too! Thanks for all your thoughts and prayers. I'll get back to giving birth now :) 

Josey

Getting close...

"Yea, though I walk through the valley of the shadow of death, I will fear no evil: for thou art with me; thy rod and thy staff they comfort me." Psalm 23:4

I've always imagined those words being clung to by people who are doing the actual dying, but as we head towards Elizabeth's birthday I feel they are near to my heart. We have chosen to induce labor a few weeks early now that she's considered "full-term" and will go in Sunday night to start the process. There are two reasons for this: first, my body is exhausted from combating preterm labor for the last two months; second, the longer we wait, the less of a chance we'll have to see her alive. Babies with her genetic disease often don't make it through the labor process and we want to make it easier on both me and her. I feel the valley start to surround us as the days click by. The good thing is that although some pressure and anxiety have kicked in a little, we're not afraid. We have a Shepherd who has made it clear in the last months that He is walking beside us. If you've had the chance to talk to either of us lately, you'd probably agree there is so much more to this story. As I start to walk through this valley I am comforted by knowing He's not going to leave. Instead of fear, there is an unshakable feeling that we are about to walk into something sacred. 

We have had many people express their support in prayer and we ask you to continue throughout the week. There is so much to pray for! Jeremy is working hard to get everything ready for his absence at work, and I'm struggling to stay present while my mind travels into next week. Please pray for an easy delivery and favor regarding Elizabeth's birth. It's okay if we don't have time with her on this earth, we're at peace knowing that the best scenario will be the one that happens. Please continue to lift up the hospital staff, especially our doctor during our stay.

The whole thing feels a bit bittersweet. In a lot of ways sad, but we are so excited to see her! We've talked a lot lately about how different of a pregnancy this has been for us to go through. Physically the same (especially the preterm labor stuff) but emotionally so different. When we  were expecting Seth we were so guarded that we couldn't even use his name. We weren't able to hold him until he was six days old, and weren't allowed to be alone with him until we brought him home a month later. This time around we have loved our Elizabeth without limits! The thought of holding her right away might seem like no big deal to other parents, but it is what we look forward to the most. It feels like what was lacking last time will be filled up, and we eagerly await those precious moments where it's just us and her. 

We will update as soon as we're ready to. Thank you all so much for your support, physically and prayerfully. It has helped tremendously to know we have a crowd of people who have walked beside us thus far. With love, Jeremy and Josey

January 23, 2012

Hello Everyone, Josey here to talk to you about what's been going on around here lately...

First of all, the news is not really news as Elizabeth is progressing normally and still her very active self! I've heard that babies with her condition are often small, but she doesn't seem to be. Considering Jeremy's 6'6" stature and the fact that I had a practically normal sized preemie last time, I guess I'm not surprised! We still love her deeply. Seth asks to talk to her all the time and we let him. When I read him stories sometimes he asks her, "Isn't this fun? Like this one Liv-beff?"  

A few weeks ago I started to feel unnaturally drained whenever I did, well, anything! Sitting down to dinner was like having the life sucked right out of me. I was on bed rest with Seth for 12 weeks due to low fluids and remember feeling the same way around this time of that pregnancy. I started showing signs of preterm labor New Year's Eve and since we had a babysitter that night (thanks Deb and Jen!) we swung by the hospital to get checked out. Normally a mom should call if she experiences more than four contractions per hour. When I was hooked up to the machine it showed a contraction every five minutes. No wonder I was so tired! The doctor says my body is built a little differently, something about a pressed nerve when sitting or standing upright along with low blood pressure. I am just convinced that around the third trimester it finally realizes it's pregnant and goes into shock! Either way, I have begun to "take it easy".

Those of you who know me, especially the friends who see me during day know that taking it easy isn't something that comes naturally to me. We're usually only home during meals and nap time, and get antsy when there are lulls to the day. Seth often asks upon waking "Where we going today, Mom?" It's been a challenge (I cried at the Y when I suspended my membership), but so far I've managed to do it. Thank you to all my momma friends who've brought their kids to us lately, it's been appreciated! It's a weird concept, taking strides to care for a child who has a fatal diagnosis. Jeremy recently exclaimed "Jos! Don't slip on that ice and fall on your belly!" Would it matter that much if I did? Probably not, but there's an instinct given to parents to protect their children that doesn't go away, despite the circumstances. We feel that while Elizabeth is with us, we need to take care of her the best we can. So here I sit... 

Shortly after I started to slow down, I started to get frustrated.  I kept hearing words go through my head, like "ineffective" and "wasteful". I know those weren't words from the Lord, but it was hard not to pay attention to them. I wouldn't consider myself a perfectionist (and if you've seen my cupboards and drawers you'd agree) but I've always tried my hardest to be a good steward of the things I've been given. I was frustrated not to able to take care of my house and family the way I wanted to. I felt upset to have friends and family that could use my help and be unable to offer it. I didn't picture my last months with Elizabeth being miserable and felt like it's not a fitting part of her story. The more I succumbed to those thoughts, the more my body hurt. I came down with a nasty cold. Then a pulled muscle in my back. I started to feel like my body was being attacked and as the snow started to fall, my spirit hit an all-time low. Jeremy came home early last Monday and took Seth so I could rest. I didn't want to rest. I wanted to yell at the Lord about how He was messing everything up. I'm so glad that God is okay with us being angry with Him. Even when we're so drained emotionally that we can't bring ourselves to pray, it's still prayer as long as we're looking in His direction. The more I yelled, the more I realized that not only my relationships are a gift, but my ability to maintain them are as well. I'm only as "effective" as He allows me to be.

Jeremy proposed to me on April 3rd, 2004. It was something that I knew was coming because he had already taken me to look at rings, but I didn't have any idea how or when he would do it. That drove me crazy! I love surprises, just not when I know they're coming. That weekend we went to Orcas Island where we had met during the summer of our Senior year of high school. we had visited several times since then and it was always a special place for us. I remember thinking, "This is it, I can't believe how fitting it would be to happen here." I waited. We went to Mt. Constitution to look at the view...nothing. Later we watched the sunset on the water listening to my favorite CD...nothing. As the "missed opportunities" kept stacking up I started to doubt that he knew me at all! I was convinced that I was destined to a public restaurant proposal that was not my idea of a good engagement story. Getting ready to leave the island, we missed the ferry and it was going to be a while until the next one, so Jeremy suggested we grab a sack lunch and hike in an area we hadn't been to before. I was so irritated I didn't realize that he had missed the ferry on purpose. We hiked to a secluded beach where he tried to get me to look for shells on the beach. Usually I love beach combing but didn't feel all that into it. He said, "Hey look at that one over there!" It was a pretty shell that stood out but I was stubborn and told him to check it out himself. His eyes twinkled as he picked it up and cracked it open to reveal an even prettier ring! It was definitely a happy moment, but bittersweet because I realized how much I had missed by looking too far forward. Of course Jeremy knew me! He knew how much I loved to hike, and that beaches are some of my favorite places. He researched the spot to make sure it wasn't often traveled so we could have a private moment. He cared for me and I had little faith in his ability to at all. 

How much more does God know me? How quickly my faith in His ability dwindles! I often get caught up in maintaining my experiences and forget Who gives me the ability to have them in the first place! The fact is, I don't know the details of Elizabeth's birth, but I want a good story to tell. I want her life to be a blessing to others. I'm worried that little will come of this and I won't have anything exciting to testify about. I keep forgetting that He not only knows her already, but He knows the whole story. And He doesn't need me to represent Him either. I won't be able to see the effect Elizabeth has had on my life, and others' until I'm in Heaven. All I'm called to do is invest in the things I'm able to, and right now I'm supposed  to sit still and let God take control of the situation. He doesn't want me to look so far forward that I miss the adventure! Within minutes of surrendering everything that I thought was my identity back to Him I felt relief on my body. It took a lot to finally hear the right voice, but when I listened it said, "Stop. Rest. Let me take this as you watch." 

Tomorrow I will turn 32. It's an age that for some reason I've been looking forward to being for a long time. I always wondered where I would be in my life at that year. Isn't that a little funny? Although I have a feeling that "where I will be" will depend on the season, even the day or minute, It will be the year that I hold my daughter. And hopefully the one that I finally learn how to rest. 

"Be still and know that I am God" Psalm 46:10

Josey

December 12, 2011

Hello everyone!

After countless attempts over hours of ultrasounds, Elizabeth stopped moving long enough to get a picture taken! I thought you would like to put a face to her name, so we're sharing it with you.

There has been no new news so far, she's been getting bigger and everything looks about the same in regards to her heart. We are considered regulars at the Maternal-Fetal Medicine office at Evergreen Hospital now, and it's been an interesting experience getting to know the people who work there. The choice to carry a pregnancy like this is a rare one to make, and I feel that it's hard for them to know how to react when seeing us. It seems they're slowly coming around to the realization that although she hasn't been born yet, she's our daughter. The only time we have with her is now, so we're delighting in this pregnancy! We love seeing her during the ultrasound visits and getting to know who she is. We've learned that she's a night-owl who normally can't sit still all day and evening, but won't move a muscle until I've had my morning (half-decaf) coffee around 9 a.m. She knows Jeremy's voice and when he talks to her she stops to listen. The last month especially has been such a joy and I feel so privileged to be able to spend time with my little girl while she's in my care. As I'm writing this, she's moving the laptop with her somersaults while I hear Seth singing himself to sleep in his room. What a blessed life this is! 

Thank you for your prayers and your conversation. The next time you see my belly feel free to say hello to our Elizabeth Joan! Remember that we are choosing to rejoice in all circumstances and that there is plenty to be grateful for. Let us know how we can lift you up in prayer also. 

"Rejoice in the Lord always. I will say it again:Rejoice!" Philippians 4:4

With love, Jeremy and Josey

November 8, 2011

Hi All,

These last few weeks have been a whirlwind of both emotions and information. So far there hasn't been much new information on our situation, just confirmation on Elizabeth's condition. I'm going to be in for ultrasounds frequently to check up on both of us. Elizabeth has become notorious for being naughty in the ultrasound room. She almost seems to hear them say what they're looking for, then refuses to show them. I feel bad for the sonographers, but cherish every minute that we get to see her. I know that extra hour is a gift.

I just really wanted to express to everyone who has reached out to us these last few weeks how much your words of encouragement have been appreciated. I know that a lot of people don't know what to say. Mostly moms. So I'm writing this as a mom to both Seth and Elizabeth to let you know that I'm okay (Jeremy is too). Have there been days when I can barely wait until naptime to have a good cry? Yes. Do I sometimes think about Elizabeth's birthday with absolute fear and sorrow? Yes. This is hard for me. It's hard to see a pregnant woman be asked about her baby and if the nursery is ready. It's sad to hear about how different a second child's personality is from the first one, knowing I'll never know my second child. Sometimes I watch a brother and sister and wish the outcome could be different for Seth.

But I can say this with certainty. Those moments of sadness are far and few between. I may not know entirely what the future holds, but I know this: Elizabeth is God's creation. No one knows her or loves her more than He does. She's made the way He created her for a reason. I know that one day I'll have a relationship with her in Heaven that is perfect, and in the meantime she will be cared for by the One who made her. There is something reassuring about knowing that I will never have to worry about her. That she'll never know sorrow or have her heart broken, and that the only life she'll live is one filled with love. 

A lot of you have expressed to me that you think I'm strong, and that most people couldn't go through this. I know it may seem that way, but I'm not really that strong, just extremely blessed. My closest friends are ones that I met as a toddler and have grown up with. Jeremy and I have dated for more than half our lives and every year we feel closer. All of our family is a drive away and has helped and supported us with any request. But what strengthens me most is that my hope is in the Lord. I know that I can do anything asked of me in life because He's there to hold me up. I am sure that nothing is given to us that we can't handle. I know that Elizabeth's story is bigger than I am, and that it has the power to change my life for the better. If you know this kind of hope, rejoice with me! If you don't, or have drifted away from it, I encourage you to seek it out.

So that's where I'm at, and have been. If you see me with a smile on my face, it's not an act. I'm okay! I love talking about this adventure and love hearing what you have to say about it. A friend recently referred to it as "the black elephant in the room" and it doesn't need to be that way. I'm relishing the time I have to spend with Elizabeth while she's in my care, and you are welcome to join me!

For those of you who have been praying, please continue. Pray for protection over our marriage and our relationships with family members. Pray for mercy and favor regarding Elizabeth's birth. Pray for the doctors and nurses that we see, and pray for our testimony as we live out the faith holds us up in times like this.

"I will praise you for I am fearfully and wonderfully made" Psalm 139:14

Josey

Oct 24, 2011

Hello All,

As many of you have heard (and surprise to the rest of you, we just haven't seen you personally to tell you), Jeremy and I have been expecting! Physically, it's been an easy pregnancy so far but after having a high risk situation with Seth it's been a challenge emotionally. We've felt very guarded about getting excited and have heard that's a normal reaction after going through so much before. I've told many of you that until the baby gets here and is healthy I won't hold my breath.

Last week our fears were realized during a routine ultrasound. The scan showed a defect in the baby's heart and an amniocentesis delivered the news of a chromosomal abnormality called "Trisomy 13". The doctors were pretty surprised, since everything else looked great. This condition affects roughly 1 in 15,000 babies, and is caused by a genetic mutation that is completely random and not inherited. The doctors we've seen said they have never heard of a couple having two pregnancies that are so rare, random and unrelated to each other. Jeremy and I can't decide to never gamble again or run to Vegas immediately!  

So what does this mean? Trisomy 13 is a condition that is often described as "incompatible with life". Although there have been a handful of children who live for a few years, most are either stillborn or only live a few days after birth. Along with the heart condition, the situation and outcome is worse. The life support system will start to fail outside the mother's womb once the umbilical cord is cut. Most couples decide to terminate the pregnancy upon diagnosis, and I can understand why. Jeremy and I see it differently though, and have decided to continue with the pregnancy as long as it lasts. Sometimes a woman will carry the baby to term, other times it's heart stops beating earlier and the birth is induced. Since every pregnancy is different we have no idea what to expect time-wise. If the baby survives birth we will follow a "comfort care" plan and not pursue heroic measures or have an operation done on the heart.

Through all this, we've discovered we are having a girl. We had already picked out the name Elizabeth a long time ago if it was a girl, but hadn't thought of a middle name. Immediately after we found out about the heart defect, I felt the Lord put the name Joan on my heart. Joan? I liked the name, but didn't think Jeremy would go for it. The prompting didn't subside, so later that evening I told Jeremy that I thought her name should be Elizabeth Joan. He said that was fine, with a look that said "Go ahead and name her Elizabeth Millipied for all I care at this point". Early the next morning I woke up and looked up the meaning of the name Joan. The words, "God is merciful" filled my heart as I read them. I held on to that promise through the two days it took to get the genetic tests back, and do believe that letting go of this baby at the beginning of her life is so much easier than always having to wonder if her heart will last another year.

Jeremy and I just would like you all to know that although there have been, and will continue to be many moments of tears and cries out to God, we are ultimately at peace with this situation and are looking forward to what this will mean for our future. Although this is considered a "fluke", we believe that there is a plan for our lives and this is part of it. We are clinging to the words of Romans 8:28, "And we know that in all things God works through the good of those who love Him, who have been called according to his purpose." We have been so richly blessed in our marriage and in life together, especially having Seth as part of our family. 

Things to consider as our friends and family: 

Please DON'T:

Assume you know how we're feeling at any given time.

Try to take this on as your own situation.

Tell us what you would do in our shoes or what you think we should be doing. 

Call us with your condolences, email is fine if you want to express something. 

Please DO:

Ask us any questions you'd like to.

Continue to hang out with us and not feel like you're walking on eggshells.

Let us know if you know anyone who has delivered a baby with Trisomy 13 or 18 that we could connect with.

Invite me to baby showers and talk freely about your pregnancy if you're expecting. Let me decide to participate or not.

Forward this email to anyone who is not on the address list, but you feel should be on it. I don't have everyone's email address. Also feel free to talk about this with others. 

Thank you for being part of our lives. We value you all as our friends and family and are blessed to have so many people to lean on. We will continue to update you all via email as we go through this process. Please keep us in your prayers as we live out the promise that "God is merciful". 

Love, Jeremy and Josey Horst