March 30th, 2012

A response (to a message I sent) from a dear friend:

Abigail has already enriched my life in ways many of my childhood friends never have. I am more aware of death and what it means to me. I am more committed to candor. I am learning to be a better friend. I am a more prepared potential mother.  I am better. She has brought groups of people together. She has stimulated conversations between families and lovers. She has inspired strength, sadness, joy and many other emotions we may never know. And she hasn't even set foot on this planet. Abigail Adams eat your heart out. 

This is just my long winded way of saying I have yet again been reminded that I believe the greatest growth often comes from absence.  And although I regret the pain you feel and it doesn't seem fair for a life to end so early, I am thankful for you, your family, and Abigail. And the gift you are giving to us all. and for reminding us that life does not have to be long to be full and complete. Completion is not about time, but impact. Imagine what Abigail'simpact will be. (AME)

 I love a friend who can share with honesty, with candor, with insight.  

Right now I am also especially fond of any friend who communicates with me.  When it comes down to it, it really doesn't take much.  But it's somewhat shocking how few people know how to give even a little.  

Maybe it's as another friend wrote:

On a personal note, I am learning from this experience daily.  I am really good at supporting friends in need when there are acts to perform. But I don't feel as confident in knowing what to say.  Somedays the words flow, but other days I'm at a loss for words.  Seeing emails like this from you showing that just 6 little words 'how can I pray for you' make such an impact shows me that I don't always need paragraphs of support - sometimes the fewer words the better!  (BS)

 It's true, sometimes it's the little things that count the most.  I'm definitely guilty of looking for "just the right thing" to do, to give, to say... and ending up doing nothing.  I hope that won't be me in the future.

knowledge

I honestly, truly never wanted to know what this type of loss would feel like.  I still don't.  But I am hopeful that this experience will allow me to support someone else in the future.

March 29th, 2012

It's easy to think that just because I have good days means I'm going to be "fine" for the long haul.  Clearly that isn't true.

It's also easy to get worried when I'm having a difficult day.  How long will it last?  How often will it happen during the next 4 months?

I'm glad today was a "good" day.  It's a reminder that storms will come, but they will pass.

Unfortunately we  also realize we're not even at the "hard" part.  We talked a bit today about the choices ahead, the unknowns.  There are so many more details unknown rather than known.  That's always the truth when it comes to pregnancy, to life.  It's just that we've always been able to live in ignorance, blissful ignorance.

Not so much anymore.  Who has to think about a pregnancy not coming to term, about what medical options might be available if she does live through birth, about what funeral plans to make when she inevitably dies within the first year, and then the extremely obscure chance that Abby will live past her first birthday??????

How do you brace for the grief while holding on to hope?  With only a few flutter kicks to remind you that there is an actual life involved in all of this?

It's a double edged sword to have the knowledge about T18 so early.  I always said I didn't want time to prepare, I still think that might be a truth for me.  However, this experience shows me that I could never be prepared for the pain of losing one of my other children.  Abby is no less important, but this is the only life I will know with her, there aren't any illusions.  I hope this is the worst experience I ever have to go through with my kids.

How do you plan for the future?  We have a trip to Hawaii planned in September, when do we cancel?  Trever has his 20 year reunion on August 18th, only 17 days after her due date, will we be able to go?  Will we have Abby with us?  In the Big Picture these are unimportant details, but they add to the list of confusion for me.  I can't make any decisions about Abby, other than our choice to give ourselves a chance to meet her, for her to have a chance to experience whatever life is in her future.  I just want to be able to decide SOMETHING.  (Well, something other than what's for dinner... I'd rather be off the hook for that one).

I also realize (and maybe I've said this already, I'll probably say it again) I miss my "old self".  There are defining moments in your life when you are destined to change.  Each time a child has come into our lives has definitely altered me.  But this is different.  I already see the change in myself, I already feel a sadness that I have no idea of it's permanence in my soul.  It's still early in this game, oh so early.  I have hope that someday my mental dialog won't involve coaching myself through the day.  That I'll have moments, hours, days where T18 won't define me.

That's not to say that I don't already see the blessings that will arise from this experience.  I'm blessed that my relationship with my husband is either getting stronger or just showing it's strength.  He is amazing.  I'm blessed to know that I truly believe in the Lord and His ability to guide me through this (especially when I am open and honest with myself and others).  I'm learning to be confident in my right to my emotions.  I don't need to apologize and it's okay if I admit that some days just aren't so great.

These are all blessings that will serve me well in my life.

Most important I am blessed to honor this life growing inside of me.  No matter how painful and confusing it is, I am honored to be reminded of my servitude as a mother.

A message from a friend...

I want to make sure I hold on to some of the messages that we receive. I need to try to copy more of them into this blog. The messages we receive give us strength and fill us with love.  They are so touching, so important.

I truly believe there is a purpose.  I know you've said the same thing before.  but I was just sitting here thinking of you.  Your email makes me cry.  I love you.  I'm sorry.  I am already extremely protective of your little Abigirl.  She is special, she is loved, she is fragile, she is a fighter, she is sweet, she is an inspiration, she is a wonder.
 
You were chosen for this.  I believe it even if I can't understand it.
 
You are a wonderful mother to all your kids and you are already an amazing mother to Abby.  No matter how long you hold her in your arms, you will be a wonderful mother to her forever and always.  
 
Love you,
JH

March 28th, 2012

Last night I was talking to my husband about how I realized I am probably dealing with low level depression.  (Ya think?).  He smiled so compassionately at me... but with a look that said he already knew that.  Really?  Here I thought I was doing "so well".  Which I probably am, depression isn't a bad thing it's just an honest emotion.

So we also talked about how good it felt to be feeling a bit more normal.  As I laid in bed unable to fall asleep (which luckily hasn't been a problem most nights) it hit me... we've only had this diagnosis for 1 week. ONE WEEK.  This may have been the longest week I can ever remember living.  Really, one week?

We have such a long road ahead of us.  We haven't even reached the hard part, the painful parts.  Possibly caring for a child with intense special needs, and then losing her.  Or not even having the opportunity to give her care.

It's overwhelming, it makes me want to curl up in a ball and close my eyes.  I suddenly realize why people are motivated to terminate.  I'm still not, it's not even an option in my mind.  More honestly I realize that it is an option but it's not one I'm even tempted to use.  However, I get it.  I get the need to speed up the process.

I'm not always in this much pain, there are moments where I can focus on the joy.  I really do love being pregnant.  I love feeling Abby wiggle inside me, and Trever was able to feel her last night.  I love seeing my belly grow (it's finally starting to out pace by butt!)  Along with all of that joy I am filled with sadness. I find myself being so sad that this will be our last pregnancy, so sad that it's tarnished with grief.

Some days are just so much harder than others.  Maybe tomorrow will be more gentle on me.

March 27th 2012

It's amazing to me how quickly life seems to be going back to normal.  More accurately to our "new normal".  The understanding that our baby has T18 is never out of my mind.  It's the first thing I think of in the morning, it's the thought that is always on my mind.  But I'm able to move through my day, to function fairly well considering.

I'm tired a lot.  Some of that is probably due to the slight depression that I'm trying hard not to acknowledge.

I still feel a bit of anxiety when I'm out in public.  I'm starting to show more, maybe still not enough for someone to ask if I'm pregnant, I'm not sure.  But I realize I'm not sure what to say when the topic of the pregnancy will inevitably come up someday.

"Are you pregnant?"
Yes I am.
"How is it going????"

Hmm... kind of a loaded question.  How do I answer that?  For someone I'll never see again I'm sure I can give a simple answer. "It's great, thanks."

But what about the people who we'll see in the future?  The people who work at my son's school?  The people at the gym?  The people I will fly with for work? Won't it be more awkward to not say anything and then see them this fall (after Abby is most likely gone) and then have to tell them "She died.  Oh, but we expected it."  ACKWARD.

Role playing that out in my head feels a bit strange regardless of when I tell someone.  I just feel bad for the shock that they will feel, for the discomfort of not knowing what to say to me.  And honestly I think I'm better able to guide someone through it now than I will be in the future.

And I think Nathan's school should be prepared.  I was just realizing that I want to make sure he has a very compassionate teacher.  Who knows what next year will be like for our family.  We have no idea how long we'll be able to have Abigail with us, will she visit his school or will she be gone before he starts?  Will I be a heap of myself having trouble getting through the day?  What impact will my inevitable emotions have on my children?  Not just my emotions but Trevers and my parents as well?  Not to mention the kids own emotions of bringing a new baby home and the extra stress that may cause the family, and then the probable loss and the sadness, confusion they will experience.

Oh my, there is so much ahead of us and very little we can actually plan for.  No wonder I am so tired, no wonder I forget to even think about what I should be making for dinner.

March 26th, 2012

I have two photographers willing to be at the hospital for day of birth photos.  I pray that it works out for at least one of them to be there.  I don't want to induce, so I'm going to have to leave this detail to prayer.  She is due in the middle of the week.  Please, please, please, let her come during the week.

We'll be doing pregnancy photos also.  It'll be our first time doing them, how bittersweet.

I need to figure out who can be with our kids also, I want my parents to be at the hospital so they have the best chance to meet Abigail, and I want someone to bring the kids as quickly as possible.  Oh, the planning.  We haven't even gotten to the birth plan yet.

It's actually more important for me to start figuring out the plans for her death.  We have almost 4 months until she'll have a chance to survive but at any time up until then we could be meeting her.  Oh how I pray that she greets us with life in August.

Prayer

Someone took the time to ask me if I have a specific prayer request.  How thoughtful is that? Here was my response, this may change during the next months but this is where I'm at today.

"I'd love you to pray for our strength during this journey, our ability to focus on the joy of the pregnancy, to enjoy each moment with Abby as a blessing and then our ability to heal after she is in Heaven.  If that's not a long enough list I would really like her to be born alive, to see her eyes and give her kisses while she is a part of our world."

Is that too much to ask, I'm gonna say NO.   I don't "dream" well, I've tried to work on it over the years, I haven't succeeded yet.  I try to be happy with what is given to me... but I know that visualizing some big dreams can help motivate you to strive for them.  And when you strive for something big you'll always get further than where you are today.  I'm not lazy, I'm motivated for greatness, I just don't dream big... that probably doesn't make sense.  It must work out for me, I have an amazing life: my life partner/husband/lover/best friend was clearly chosen by God, my kids are more than I would have thought to ask for, and our life seems to have balance (although more art projects and park time would be good for me to strive for).

And we were blessed to grow another baby, this might not be the path we envisioned but I'm so aware of what a blessing it is.  What an honor to care for a sweet little girl who will be "special" in countless ways.

I'm sharing these thoughts with a bunch of you because I believe in the power of prayer.  So, if you are so inclined (and I'm very aware and comfortable that you may not be) please add us to your prayers and please feel free to use my specific list.

PS. Trever would like at least 1-2 months with Abigail/Abby/Abigirl (I'm so tempted to just go with Abigirl).  It's a bit out of reach for me (see, I'm so limited!!!), but I'm all for it!

March 25th, 2012

It's been so nice to be out among people the last few days.  Not just people, but friends.

This morning we tried a new church.  We've tried various churches during the last few years but haven't found our home yet.  I'm hopeful that this will become our church home.  The pastor is actually someone that I knew in high school, a friend of someone I had tremendous respect for.  I enjoyed the way he read through the passage, the way he tried to educate.  I think our most touching take-away was the focus on loving others.  Christ is the foundation of our faith and our goal is to love others, so the fit seems to be off to a good start.

I woke up this morning being so happy that I seem to be feeling so close to normal lately.  And then we dropped our kids off (never super easy for me when it's somewhere new), walked in to the sanctuary and the music started.  Instantly I was a waterfall of tears.  I couldn't stop them, I didn't really want to stop them.  I was overwhelmed with comfort and sadness.

Some days it is refreshing to just let the tears flow (when I say some days I mean that in terms of my "past" life). Today it felt right to allow myself to cry, but I was left feeling sad.  And then I've just been wiped out all day.  We napped, then I've been a bit of a zombie.  I'm so thankful to the people who have brought us food.  Recently my Aunt and Uncle filled our freezer with food... there are not thanks big enough.  On days like today I'm three steps behind when taking care of my family.  I actually think my kids like the food on these days so much more... I better not let them in on why they are eating so "great", they may start to encourage my crying.  That's not even funny, is it?  They wouldn't do that, their little hearts are so full of love an compassion.

We're one day closer to meeting this darling girl, she's wiggling and kicking and helping me remember to smile.  I love her so much and cannot wait to hold her!

March 24th, 2012

I'm awake this morning and feeling so close to normal.  Yay!!!  Maybe time with friends really is the best medicine.

Heading up to see my husband for his work function tonight.  I feel closer to him than anyone in the world, my heart is aching a bit at the excitement to have his arms around me.  This was our first time being apart since we started this path, it's been okay but now that I know we'll be together for a few hours I'm "feeling" the distance.

I remember this same feeling the first time I left my baby boy.  I just drove down the road a few miles to pick Trever up from somewhere.  It was the first time there had been physical distance between Nathan and me (if I was taught correctly then I just said that properly, it's not Nathan and I, right???) and I could tangibly feel the tug at my heart.  What a strange sensation.

So I'm going to clean myself up... head out of town and make a day of it.  Even if this feeling of almost normal doesn't last it was nice to catch a glimpse of it.

March 23rd, 2012

My day started out with a great workout.  It's wonderful to find that place where your physical exertion outweighs your mental and emotional output.  It's not that I am able to stop thinking all together, but it takes up less space.  It's such a great release.

I had a day filled with sharing our story today. We met with the pediatrician (for my daughters well child visit).  I was able to talk with her about what we were facing.  She told me I would still come in for "well child" visits, we would walk through this process similar to any other child.  I wanted to say, "but she's going to be different!"... it's good for me to see that there is a chance for her to fit right in to our normalcy.  In so many ways it won't be the same, but our schedule with our doctor will be and that was comforting.  We also talked a bit about what to expect from the medical team at birth, or more importantly that we will be able to make all the decisions.  I'm so happy about that, we have a lot of decisions to make and I just want to know that we are the ones who get to make the final decisions.  I guess the stamp of "T18" is all you need to gain a little authority in a hospital.  Does that mean they'll let me have candles, music plugged in and a beer during delivery???

As a highlight to my day I met up with friends for a very special birthday party.  We chatted it up, girl style.  Being near my girlfriends is home for my heart.  I thought when I got this diagnosis that I would allow myself to have a drink more often (as a rule I only drink wine from time to time during pregnancy)... at first I figured what harm could it do?  But then I realized that this baby is special, that she has special needs, and that I really want to meet her.  She needs all the strength she can get and I don't think liquid courage will cut it.  I don't feel left out, I feel happy that I get to make these choices to take care of her.

After talking, eating, talking, eating, talking... we went and did some gambling (which is always fun, especially when you end up ahead!).  Then we headed back to the room for some old school music and dancing.  But I couldn't seem to do it, I couldn't will my body to even fake that I wanted to have fun.  It hasn't been very long, I'm hopeful that dancing and fun will find their way back into my life.

At one point I was thrilled to hear myself laugh without trying, I was smiling without pretending.  It was almost normal, almost natural.  The only difference was that I was listening to my (now normal) mental dialog that was congratulating me.  Feel free to think I'm going mental, I definitely feel that way sometimes.  It's all about steps in the right direction, tonight was a big reminder that I will be normal again.  There will be ups and downs, and the biggest heartache is ahead of me, but the biggest joy is also ahead of me!

Abigail Ann Kissel

Meet our darling girl, Abigail Ann Kissel.  We're so excited that her identity is growing.  Our son is ready to call her Abigirl, "because she is a girl" (he's 6).  My husband has always loved this name, and he loves that it's a happy name.  I think he's right, it is a happy name.

When I sent out the news of her name I got a wonderful reply:
Hi Friend:

Just wanted to check in and see how you are this morning.  I love the name!  Yay!  What a lucky gal.

Say hello to Abigail this morning.  And tell her about all of the wonderful Abigails that came before her.  An interesting one:  http://en.wikipedia.org/wiki/Abigail_Adams

--

AME

What my friend didn't know is that one of my dearest friends is also named Abby, and Abigail Adams is her distant relative.  It's obviously a very good name.  If she follows in those footsteps she will be a wise, beautiful, confident, and strong woman.  

My little Abigail is bouncing around in my tummy right now, I think she likes her name.  Either that or she just liked the excitement of gambling and listening to Snoop Dog with my friends!  She'll fit in just fine with this group.

March 22nd, 2012

I went out in public today.  It's not really the first time I've left my house.  But it is the first time I went out by myself, to do something "normal".  I decided to go to the gym.  Seems mundane enough.  As I got closer to town I felt anxiety tighten my chest.  Would I be able to keep my emotions in check?  Would it show on my face how lonely I am, how my eyes seem glazed over and I seem to wander around?

As I walked into the gym I saw a friend.  A friend that I don't know well, but one who feels comfortable.  We talked, about nothing special (well, actually about our book for book club... which is much more XXX than anyone anticipated... should be good for a distraction). As she gave me a genuine hug, completely lacking in pity or discomfort, I felt myself get braver.

Then I got on a treadmill near another acquaintance.  She lost her daughter unexpectedly in 2010.  She knows this game, she isn't afraid of it.  She walked right up and hugged me, again a genuine hug.  Suddenly I spilled my thoughts, was honest about my anxiety.  And she related, comforted, supported and validated me.  At that moment I knew that I could do this, and I also knew that I am so far from the hardest stages.  But I am so lucky that I still have the best moments ahead of me also.

My baby girl is getting bigger, getting stronger.  My husband has felt her once.  I can't wait until he feels her more often, until our kids can snuggle up and feel their baby sister.  I LOVE knowing that she is a girl!  Now if we could just give this darling little thing a name ;).

My biggest prayer is that we get to hold her and love on her, that we get great pictures with her.  Every moment will be a gift, I just want her to grow in my belly long enough that when she comes out she has some meat on her bones. Please Lord, just give me at least that little thing.

I was sending a reply to someone today and wanted to remember these thoughts:
 It's not a journey I would have chosen but I can already see how it's helping me grow. 
I know someone going through something similar. She sent some amazing advice: basically that each moment we spend wondering about the complications and her death is a moment we don't spend embracing how perfect she is.

We all have a finite time line with our kids, we're just lucky to be so aware that ours will most likely be short.

It's amazing how the heart has the capacity to love deeply in the midst of breaking apart. The battle of the hope and the terror of the unknown. 

This is a lonely process, each message from someone in our life helps to lessen that. Thank you for sending a message you could have easily only thought about.

Your prayers that we will embrace each day, focus on the blessings and heal from the pain are greatly appreciated.

I know it's uncomfortable for people to reach out, I wish they could know how much it means to me.

March 20th, 2012 Emails

Here is our email update from March 20th, with responses added at the end.

Well, do you like roller coasters?  If the answer is no then you're in my court.  (Trever likes roller coasters but I think this one might be a bit much even for him). *** Read to the end if  you're looking to all the information, including the good news.  (I wouldn't doubt everyone is getting as exhausted as we are by information overload).

Our FISH results came back today (it's the quick reading off of the Amnio - spell check doesn't like the use of Amnio instead of Amniocentesis, spell check needs to get with the times).  Our baby does not have Down Syndrome (T21).  Our baby has Edwards syndrome (T18).  I'd have to read back but I think I mentioned that some of the markers were possible T18 (as well as T21).  The doctor was thoughtful and called early today.  

In short, Edwards syndrome is not compatible with life.  That seems conclusive enough, right?  And it is, kind of.  About 50% of babies will live through birth, only 10% of those babies will live until their 1st birthday.  Our doctor said that the majority live somewhere between 1 - 2 months (the majority of the 50% that actually are alive at birth).  I don't know if these statistics account for the babies that die during the 2nd and 3rd trimester.

So that's where we're at.  Last night as we talked about our probable future as a family with a child with Down Syndrome we also talked about some friends that we know who have experienced T18.  We also had a slight experience with possible T18 in a different pregnancy but it was quickly ruled out.  Trever had nightmares last night about T18 and then we talked about it more this morning.  We agreed that we still needed to be prepared for that possible outcome.  Wow, it's a bit crazy how that all worked out.  It was still a shock to hear the words from the doctor.

We don't think we'll be meeting with the fetal cardiologist.  Sounds like there really isn't any reason to know more about the heart as it's my understanding that heart surgery is not an option. 

We're now uncertain whether we will deliver at St. Joe's in Tacoma, St. Pete's in Oly or even possibly at home.  We have a lot more learning to do about those options, mostly about how much autonomy we will have over the decisions for care/treatment of the baby.  I don't want this baby drug through tests and living in the NICU.  At this point to we have time to try to make a decision.

Are you waiting for the good news???? We decided to find out the gender (some of you are THRILLED with us right now!!).... IT's A GIRL.  She's a small but feisty little thing!  I guess she's making up for the future lost time by giving us a run for our money right now... and we adore her.  We are deciding on a name (watch FB because that's probably where we will "introduce her").  

Personally speaking (because why not at this point??)  I think I've built up my guard a lot during this last week.  The emotions have just started to hit me (you might notice the lack of humor, it wasn't rollin' easily for me today), in the words of my wise friend I should "be prepared for them to come in waves".  I have no idea what this process will be like, but I can tell you that each time we get a kind message, a phone call, or a helping hand we are filled by the love of our friends.  Please don't worry about saying "the wrong" thing, this is all new to us also.  We're leaning on each other and our faith and taking this one step at a time.  

All we can say is that we are sorry you are having this tragic experience.  Now you know and you can prepare for the ending of her life.  You are right - emotions will be all over the map.  Keep talking, keep it real and honest and accept that everyone processes it differently. Sending you cyber hugs, Connie

Jenni...giving you HUGE hugs and lots of love....

thank you for the updates...you and Trever are such awesome parents/people, i admire and adore you guys to pieces...i hope you can have some peace that this is in gods hands sweetie, ...love you...what a lucky little girl to have you and Tever as her parents :)

Jen, Trev and kiddos....

You are all in our thoughts.  Thank you for the update...it takes a village and certainly you need the support right now....  We love you all and our hearts hurt for you right now.  

Can't wait to know her name and I'd be happy to hop on the roller coaster with you at any time that you needed a friend to take a ride, listen, etc.

Let us know whenever you need something or if there is anything we can do to help.  Much love.

Shan 

Jenny- 

I really couldn't come up with something to say after your first email, and still can't, but I really want you to know that you and your family have been in my thoughts A LOT lately as I try to put myself in your shoes hearing the news, learning, discussing, talking to your kids, etc.  You are handling your baby girl's experience with an amount of grace that I can only call admirable. Thank you for being so open with your friends, your upfront attitude to take it as it comes is the strength I think you are speaking of... 

I still don't know what to say, and will continue to think of you and can't wait to learn her name :) 

Annie

I can't express how powerfully your words hit me. I know I'm not your mom or anything, but right now I feel so proud of you. Your strength is amazing, and your love for your little girl touches me in deep down places. I am praying for a miracle for your little girl here on earth. We just don't know what God's plans are for her - which is the hardest part, huh!

I will keep praying. Blessings to your family, and love, Sharron

Oh my!! See, this where I think FB is kinda wonderful! Extra prayers and extra love sent your way just because you are open enough to share your story!  Honestly, you are such a brave soul. Your strength and outlook simply on FB is what draws me to you and your beautiful family.

The term roller coaster doesn't seem to be quite the right term here. I think the pits and peaks of each are far too extreme for any amusement park ride. I want to do something for you guys... mainly you. From a mom to a mom... what do you need? Even if you say nothing give me an adress woman! I'll be damned if I can't think of something to, at the very least, put a bit of a smile on your face.

I hope I didn't cross the line into nosiness... I blame it on my southern roots if so;)

CC

I am so sorry that this has happened to your sweet little baby and to you and your family. I am thinking of you and sending prayers your way... There really aren't any words of comfort I can give you, except that I am sending love your way. Thank you for including me in your email updates.

 My heart goes out to you, Jen.

 TTF, 

 Jody 

I can't even imagine how difficult this must be for you. My heart goes out to all of you. I am not sure what to say to ease your pain but please know that I will pray for you and hope for the best. 
Sending you my love and prayers tonight and always. Please keep us posted but don't feel that you need to acknowledge my message. Please take care of yourselves and know that your family loves you.

I am so, so sorry to hear this.  I could not read this without tears.  My heart goes out to you all.  You are so strong and such an amazing person.  I have always admired you for your strength.  Please let me know if there is anything I can do.  You will all be in my prayers!!!

Jennifer & Trever,
I am so sorry for the fear that this must have instilled in all of you.  I am sorry for the emotional roller coaster effect this has had on you. I wish I could work magic with my words to make eveything alright but I can't take the pain away. What I wouldn't do to have that supper power. I can say that this bitter sweet event in your lives was handed to two special people that are surrounded by special people and there for must be a gift. I think that you and your kids are the gift to this beautiful girl, as well as she will be a special gift to you and all of us. I will try my best to get up there to meet her when and if time is allowed, I would never want to intrude or add stress to this situation. I love you all and thank you for keeping us updated. I will keep up on your facebook page. Much love to all of you.
Terri

Jenni,

Thank you for including me on the update.   I am so sorry for you guys, but I know you will be blessed in unforeseen ways throughout this.  Please let me know if I can be of any support.  I'll pray for you.

Love, Jill




Hey Jen,

Thank you for keeping me in the loop!  I have to say, I really value the way you are approaching the situation you and Trevor are in.  Although I'm sure your managing a variety of different emotions, your perspective seems to be so positive and you seem willing to find the blessings inherent in what is being faced.  I continue to pray for you, your family and your little girl.  Faith is so important during a time like this and, though understanding may be out of reach, knowledge that we are never given more than we can handle and that God has a purpose in mind for each of us (including your little one!) can be comforting.
Dave is working this weekend and I'm free all day Sunday if you're interested in doing anything.  A walk, tea / coffee, or just a visit could be nice if you're up for it.  No pressure though...  If something doesn't work this weekend, we'll figure something out when everything isn't so fresh and you've found some time for rest and adjustment.
I hope you find peace during the rest of the week and look forward to seeing you soon.
Warmly,
Stacy








My heart aches for you Jen.  Thanks for sharing the sweet picture of your baby girl on facebook.  When I was reading your email, the song "Never Once" by Matt Redman came to mind.  Here is the youtube link 
http://www.youtube.com/watch?v=n1bXG4WIesA
Continuing to pray.
Traci





I love roller coasters, but only at a theme park.  My heart is breaking for you.  I’m so sorry.  Stay strong mama...love and peace to you and your family.





Jen and Trev
We are so full of emotion for you both. Thank you for sharing whats happening in your lives. This beautiful little girl has some amazing parents. Please know that you are in our thoughts and prayers.
Randy and Kelly

Hello My dear friend,

I love you.

I haven't any words to tell you this time.  Probably because it feels a little like being back in that field....the 'silver lining' is that there are a finite number of paths...but there are still many.  I can't stop thinking about you and your beautiful baby GIRL!!!!!! Congrats!!!!!!! Although that may seem strange....you ARE blessed and so is your DAUGHTER!  I came across this site. ..it is probably not the best out there of its kind...I don't know....but I found myself reading so many of the stories and it did help paint a picture of the many paths that your baby and the Kissel family can hope to experience....the struggles and the joy......

I love you.  We are thinking of you.

Love jess

http://www.t18moms.com/families.shtml







Dear Jenni and Trevor, 
Thank you for including us in this journey you are on. Please know that you are on our hearts and in our prayers. I'm glad you are introducing her to us. She will remain a part of all of our lives forever.
Hugs,
Maureen








Jen,
Traci forwarded your email to me, as well as told me about what is going on.  I had Paula from the office call today to see if there were any results.  They weren't ready when she called this morning, but apparently you found out the results before we did.  Wow, where do I start?  
I wish you guys were not having to go through this, but at the same time, I have to believe that God is present with purpose throughout it all.  I recently cared for a patient who delivered a baby at the UW with a devastating heart defect.  They gave her a less than 10% chance of surviving.  She ended up surviving for 11 days at Children's hospital.  I went to the memorial service which was helpful for me to grieve their loss.  One of the speakers spoke about the idea that not all families are able to love a baby for only 11 days.  His purposes are not always easy to see, but this little baby impacted an enormous number of people for the gospel.  
What ever happens I believe that God has given this child for you to love and that you will do so beautifully.  As you go through the medical mill that is our medical system which tends to be quite technique with a tendency towards a lack of empathy, if you want to talk about the spiritual aspect of your situation as well as the medical aspect together, please let me know.  You know have my email and you should feel free to use it.  Traci and I will continue to keep your family in our prayers.
Darrel





I am on my phone which makes emailing hard but here is a quick one.  Bret emailed me your last 2 baby updates.   I am so terribly sorry you are having to deal with this.  You have our prayers and whatever support we can offer.  I found a website you have probably already seen but I thought I would pass it along.  I don't know how to attach it via phone email so I will find another way but it is the Birth plan for baby Decker who also had T18.  Hope it helps.  Call anytime.  We are here if we can help in any way!  Brigitte









Wow, Peters.  I can't imagine the rollercoaster you've been on.  How are you feeling about this diagnosis as opposed to DS?  Totally different outcomes. 

Still thinking of you and praying for you lots.

Mo






I'm at a loss for words... I absolutely hate the fact that you have to go through this.  I'm always amazed at life and how quickly you can go from feeling secure and happy to having a nasty pit in your stomach.  That feeling has happened to me a number of times.  I will never understand how you feel about this situation... but I do know that my heart aches for you guys.  Our prayers and thoughts are with you and your precious baby girl.

Love, Kylie





Hi Jenny –

You and your family are such strong people. I am honored to even know you guys. As for your new baby (actually all your babies) they are SO lucky to have such great parents. It is impossible to imagine what you are going through - just know you have friends! Friends that are like family and if you ever need anything – we are all here for you. Even if you want something as simple as a mid-term book club get together (before April 23rd ) let us know and we will organize a get together – even if it is just happy hour.

I saw the picture of your baby that you posted online and it is hard to imagine there is something wrong with her. It is a reminder that babies are such a miracle even if you can only touch and feel them for a short time.

You and your family are in my thoughts! Thank you for sharing your updates with me.

Melissa






Hi Jennifer, hi Trever. 
I'm sure not a very sensible person but reading this makes me really sad. I cannot imagine what you are going through right now. Your family is a great place to live, even when it is only for a short time. I always enjoyed every minute a got to spend with the Peters and I'm sure so will your baby girl. 
Please say hi to everybody from us. We are with you in our thoughts. 
Carsten, Kirsten, Emil and Piet the dog

Jen-

Your grace and strong mothering instincts make me feel proud to be a woman and also lucky to call you my friend.  My thoughts are with you and your family. 

Shina

Oh Jen & Trev, 

Sending a hug to you both. With every bit of this information we are here in support and prayer. We have wept at the news and smiled at the glimmers of hope and the announcement of your little girl. 

What I want to share with you both is we believe in you and we believe in the love you two have for each other, your family and believe that the emotions you are feeling...all of the emotions...are just... and know it is ok to feel however you want. 

Our hearts and our love for the both of you is very real and please know that even though Jen, I am not down the hall anymore that my love, care and concern for you is ever present.  

XOXO Cocky & Dan

Jennifer and Trevor:

Well, Melodie has been keeping Andrea and me up to date on the baby situation (i.e., forwarding some of your email updates), and we wanted you to know that our hearts go out to both of you and that we are praying for you and your baby.  Anyone that has ever had a baby has most likely had a scare or two at some point during the pregnancy, and understands the sinking heart feeling that comes with news like that which you have been recovering of late…only it must be 10 x greater in your case (than most) given the reality of the situation.  I must say though, I’ve been pretty amazed at your attitude / approach, and at times the humor expressed in your email updates (understanding that it all comes and goes in “waves”).

In case you hadn’t already seen the following video, I wanted to share it with the two of you as you work your way through and plan for the months ahead:

http://www.youtube.com/watch?v=th6Njr-qkq0&feature=results_main&playnext=1&list=PLC2693CA97ED258D3

With love,

Mark & Andrea Oliver

Wow.... you've been on quite a journey already.  Thank you so much for filling me in.  I'm so glad you've found comfort from people who really understand what you are going through.  You clearly have created an amazingly strong family (no surprise here) and I know you guys will carry one another through this.  I'd do anything to be able to give you a giant hug right now.  I wish I knew what else to say.  Just want you to know I'm praying for strength for you and your family right now, and comfort as you work through all of this.  

Regarding us... we are doing fine.  Jerret loves his job with American Express, we are living about 30 miles out of NYC.  The people are very different here but I've met a handful of wonderful friends and that helps tremendously.  We do hope to get back West within a few years.  This is not "home" but a temporary stop for us.  My girls are now 5 and 2.5.  I love spending all my time with them and watching them grow, just wish they didn't have to grow up so fast.

All my love Jen... xoxo

Dearest Jenni and Trever-  My heart aches with you and for you over your little girl. The one thing that gives me hope is that whenever she is called home that she will be home with the Lord, perfect and complete- forever. And one day, you all will be reunited.  These days you have with her now have a purpose and a plan- you may not know what that is for a time, but I feel you will be used in a mighty way. I’m praying that God gives you both great comfort and wisdom in these days ahead. I know it cannot be easy... Please let me know if there is anything I can do. With my love and prayers, Julie

March 19th, 2012 emails

Our email communication to our friends, and some of the responses:

March 19th, 2012

We had our appointment today.  We love our new doctor.  It's a bit strange to realize we have a new doctor at this point.  I've been with the same group for all of my other pregnancies.  It seems that I am constantly getting reminders about how "each pregnancy is different".  Alright already, I get it. ;)

So, some of the anomalies from the ultrasound last week were "cleared" as normal.  This is most likely due to the babies movement, or possibly the techs experience.  So, the spine is fine and the shape of the head is fine also.  We definitely had a moment of wondering if our baby was going to be more "normal" than we had anticipated.  However, that wasn't the whole story.

In the end the soft markers give a strong indication that our baby has Down Syndrome.  There are plenty of soft markers that were missing, one example being the lack of nasal bone (meaning our baby has the bone).  Also, just as a curiosity point, some children with DS do not have all three bones in their pinky finger (ours does).  It's remains fascinating to me that a chromosome has such broad and strange affects on the body.

The soft markers present in our baby are a thick Nuchal fold (the skin on the back of the neck), cysts on the brain, vertically challenged (as Trever put it), and the heart.

We choose to do an Amniocentesis today.  The main risk for miscarriage is when your water breaks, and although that is always a risk I generally have a very tough membrane and the doctors have had to work very hard during my 3 deliveries to rupture mine so I wasn't too worried about that.  We expect to receive preliminary results in two days and final results within 2 weeks.  If the test comes back without a clear chromosomal abnormality then we're back in the dark.  The doctor is positive there is a "syndrome" so we'd just have to go back to square one.

The "bad" news is that the heart has a serious defect, it is missing the vertical separation between the chambers... so we have the 2 valves but right now they are operating as one, and we only have 2 chambers.  I guess this is an "easy" fix after birth.  We are meeting with a team of doctors at UW next week, one of which will be a Fetal Cardiologist.  We'll have a fetal echo gram and then we'll know a bit more.  There is a chance that the baby will need immediate surgery, but I guess there is a chance that it can wait a few days. 

Our doctor thinks there is a strong possibility that we will schedule an induction at UW.  Otherwise we'll be delivering at St. Joe's in Tacoma.  There is no chance that we'll be delivering in Olympia.  Can't believe I'll be trusting the Huskies to get me through this.  

Another strange thing is that the umbilical cord only has 2 tubes, one artery and one vein (it's missing one artery). This means we'll be watching the babies growth later in the pregnancy but supposedly "it doesn't bother most babies".  The one that is missing is the one that carries alcohol so I'm cleared to drink (JUST KIDDING!).

From this email you can probably tell that we are in better spirits and working with this change in our life (there were so many other possibilities that we are thankful to not be facing).  That is true for this moment, but we'll see what tomorrow brings.  We still so greatly appreciate your kindness and your prayers.  Please email/call us to be in touch or if you have questions.  It's a fairly lonely experience so we really appreciate open communication.

PS.  In case we're not going through enough I had to get a shot in the ass.  REALLY??? Come on!  

I am with you on having to trust the Huskies!  I will do your drinking for you until you are able to resume. 

Seriously, take care and my thoughts and prayers are with you. You guys have beautiful babies--I will be praying for you.

KK

You guys are braving this so well.  I am still praying (and so is my mom).  I told Mike today, "You don't know until you know" so I am praying that when your baby is born he/she will be as perfectly imperfect as your other 3.  PS Are you going to find out now if it's a boy or girl?  Just have to ask because you know I want to start shopping! :)

AP

I love your openness -- it's just so "real".  Thanks for sharing with us.  Your sense of humor is wonderful too.  You are awesome.  Love you, JH

Hey there Girlie!

Thanks so much for including me in your email Peters.  I was seriously just thinking of you the other day!  I'm so sorry to hear about your current situation as I know it must be extremely scary entering the unknown.  If anyone is able to take on a challenge like this though... its you and Trever.  You have such a wonderful family and an amazing group of friends and this little baby will be blessed to have you as parents.  Life can be so confusing sometimes.  

I just want you to know that I'm thinking of you!  I still want to see your house and meet your kiddos by the way!

Love,

KV

It’s good to hear some relief in your voice!  Did I mention the very best thing you can do for yourself is take it a day at a time. It sounds like you have an awesome team of professionals to help negotiate the curves that will undoubtedly be ahead of you. It’s amazing the neonatal options that are now available. Thank God!

 Thanks for sharing!  I’ve been thinking about you all day.

 DK

I love your sense of humor! You are so strong. Continued prayers coming your way!AM

Wow! You guys have been dealing with a lot. I'm so sorry that you've been going through this. I guess your instincts were right about this pregnancy. Please keep me in the loop. I will be praying for your family and the baby. Hang in there!
SK

Wow Jennifer, I had no idea of the problems you were facing with this pregnancy.  Thank you for including me in this email. 

 You seem to be handling this as well as can be expected.  You, Trevor and your new baby on the way are in my thoughts and prayers.  You two are such strong great parents, I feel if anyone could handle this type of situation you two can.  You guys are amazing.  Hang in there.

Love,

CG

Jen and Trev- (I'll keep this short as I'm not very good at tactful

words... :)

That is better news than what you were probably unable to escape from

thinking about all week. We have watched J's household with

S the last 11 years, and have watched her needs overshadow the

needs of the other 3 the whole time. The parents are NOT giving S

the helps she needs either (or the others) and it is taking it's toll on

everyone involved, and what future does it hold for S as an adult? 

I know all your friends think you guys are terrific parents and fully

capable of taking this challenge on, and we fully agree with that, BUT

please keep an open mind about the fact that you have another option and

you don't have to accept this journey. We will love you and support any

path you choose. I cannot begin to understand how you are feeling from

one moment to the next, and I would love to give you each a huge hug. 

Your email sounds a little more lighthearted Jen so maybe with some time

and learning this will seem easier for you guys. Please know we are

praying for you all, and we love you all!

ST

Jenni-

Thank you for sharing.  I've been thinking about you guys nonstop since last Friday.

I also had an amnio done with E and it was a scary and lonely time for me.  I admire your openness about what you're experiencing and hope that it leads to a lot of us reaching out to you. If there's anything I can do for you guys please let me know. 

-js

Oh Jen, I am so sorry to hear about these concerns.  I can't imagine all the emotions you are processing right now.  We'll continue to pray for this precious little babe.  And for you guys too!  

You are so considerate to still be thinking of bringing us a meal in the midst of all of this!  Please don't worry about bringing one over!  A few people from church brought some frozen meals over so we're doing pretty good.

The trip to Ethiopia was really hard, both emotionally and physically, but so good at the same time.  So far things have gone pretty well since we've been home.  Still adjusting to a lot, but we're gradually figuring it out!  Joah is such a happy little guy--he's been lots of fun. 

Thanks so much for the email.  Please continue to let us know how you and baby are doing.

TB

Jen - 

I'm glad things are looking more positive from your email last week.  Did you already have the Amneo?  I heard they are painful but you probably don't care at this point.  I hope it will give you more information so that you can plan better.  Downs Syndrome sounds like a good outcome compared to what you were looking at last week.  I hope that you are in good spirits and trusting in God.  I'm glad you like your new doctor.  I hope you don't have to go to Children's but, if you do, you will be in such good hands and I will come visit you whenever I can to support you.  I miss you and will continue to pray for your family and the baby.  Are you telling me that after all these tests, you were able to avoid finding out the sex of the baby?

:)

MW

I feel like there is some good news in this message, but I sense an underlying sense of uncertainty still.  Just know that we're thinking about you everyday.  

love you.

ae

Jen,Thank you for the update.  It still seems there is concern but things change as the baby grows or more information comes through.  We have a friend who granddaughter's head was shaped like a Down's child bu see was perfect when she came out.  Hope you can be as lucky.  But, if the circumstances are different we know you are a strong lady with a caring husband and a supportive family.  You will find the strength to get through this . . . maybe one day at a time but that is all any of us can really live our lives.  I am glad you are being referred to the Specialists, they well keep a close watch on the baby and you.

Our Prayer, CZ