Tuesday, March 20, 2012

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.

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 :) 

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;)

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.

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.

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
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.
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.
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

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. 

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:
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 Lordperfect 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

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