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