March 19th, 2012

The day we met our new doctor. The day we knew we would get more information, but still not have conclusive answers.
When I felt my husband get out of bed with our son I didn't even pretend to offer to get up.  When I felt him get back in bed (his mom was spending time with the kids) I barely moved.  I wanted this day so badly and at the same time didn't even want to acknowledge it was here.  The doctor's office called to ask us to come in early.  I was so thankful.

A dear friend had offered to meet us at the appointment. She would sit by quietly to write notes, to make sure the questions we had written down were answered by the end of the appointment.  I was numb as we drove up.  As we walked into the building it occured to me that some pregnant women come here with no serious concerns.  Some are just "older" (I can say that because I'm technically an "advanced age pregnancy" now that I'm 35), some are having twins or triplets, some just want a specialized doctor.  Some people that we would encounter that morning were here for happy news.  We knew that wasn't going to be us, but it was comforting that the office dealt in happy and in concerned pregnancies, at least they have balance.

The visit was wonderful, we could not have asked for better connections.  (We had been told that if we were able to hold off until Monday we would be so happy to work with this doctor, our friend was right.) As we reviewed the ultrasound results the list felt long.  As we started to look at the baby some of the concerns were cleared.  My husband and I both had secret thoughts that maybe this would all work out... and then new concerns were added to the list.

By the time the doctor came in we knew our baby still had serious concerns.  She thought the strongest possibility was a diagnosis of Down Syndrome, an abnormality from an extra 21st chromosome.  We decided to do an amnio instead of the new blood test (it's been out since January 2012).  The blood test is 99.9% accurate for DS, but it is only 90% accurate for T18 and T13.  I'm a 100% kind of girl.  I knew that if the blood test was uncertain I'd end up wanting the amnio, and honestly I didn't want to wait 2 weeks for the first set of results.  I was terrified of the amnio, terrified!  In the end it was "uncomfortable"  not painful at all.  I was pleasantly surprised.

We asked the office to put our babies gender ultrasound picture in a sealed envelope.  As we left the office with the belief that we may have a child with Down Syndrome we didn't assume we would open the envelope so we sent it home with our friend.  We did not want to know the gender unless there was a low likelihood of survival.  At this point Down Syndrome sounded like a blessing, something we could imagine in our lives, something we felt we could handle.  We wanted to believe we could handle any diagnosis, but we were so overwhelmed with the concerns of balancing an extreme situation with 3 other kids.  I had so many doubts that we would be able to take care of each of our children's needs much less our own or our marriage.  I was so scared to loose my "normal" life and possibly my husband.  We have an amazing marriage so I believed we would make it through, but you just never know.

Leaving the doctors office I felt light, I felt empowered.  I knew we could "do" Downs.  I have followed the blog Enjoying the Small Things for two years. (www.kellehampton.com).  She inspires me in so many ways, her raw honesty and strong ability to focus on the positive has a big impact on me.  After a couple hours Trever and I both felt stronger, more encouraged.  Both of us knew that nothing was confirmed yet.

March 16th, 2012 emails

March 16^th, 2012

Sometimes my chest gets so tight I can barely breath.  It was so much easier to be detached yesterday.  God this is such a strange experience.

I don't know what happened yesterday but I liked your text...I thought it was positive and inspiring.  There is no question you have much ahead of you and I can make no judgments or comments as to "what I would do."  You and Trevor are wonderful, smart, loving, and great parents...that has not changed...all I can say is take it one day at a time, listen to yourself and breath!  

Also, I just want to tell you...I had a great time with you and Beth on our quick trip.  Thank you so much for including me and opening up with something so personal.  I think you are wonderful and know that whatever may come is something you will handle with the humor and grace already within.

If you need to chat or need a distraction the girls and I are always happy to visit!

Take care of yourself....

Love, 

JV

Just know that I an constantly praying for you and Trever and that little baby! Love you. KT

Wish I could be there to...not sure what, but be there:) love you DR

March 14th, 2012

Here is a copy of my first email communication and some of the responses we received.  There were texts also, and some phone calls. Each word was so comforting, This journey is so lonely, any connection to our friends is important.

March 14^th, 2012

So, this is going to be a bit of a shock for most of you but I thought it was time that I at least shared what we are going through.  In a nutshell we are going to have a special needs baby.  Please keep us in your thoughts and prayers but know that we are coping well right now.  Each moment is likely to bring a new emotion so we're just rolling with the punches.  We will meet with the Paranatologist (an expert in pregnancy) on Monday afternoon so we'll hopefully know a bit more then, as well as what additional testing options are available.  Once we have that information we'll start the process of making decisions.  I'll try to remember to send out an update sometime Monday night or Tuesday.  Send me an email if you're left in limbo and you want more info (if you haven't heard from us by Wed).

We had our ultrasound on Monday.  The baby was measuring small, so we were prepped that we would probably have to come back in  a couple weeks to get better images.  There were strange moments during the ultrasound... it just didn't look right to me, but what do I know?  I even said to the tech that I was glad I didn't know her job so I wouldn't have reason to be worried about what I was seeing.  Strange.  Late Monday I got a voice mail that my doc wanted me to come in Tuesday.  Since I was already on my way to Phoenix I asked to have a phone consult instead.  At that point I was trying to keep my worries in check but I knew it wasn't good.  I already had a follow up scheduled for next Monday.

There are multiple markers/problems indicating a chromosomal/genetic abnormality.  

*the head is shaped wrong 

*the brain has some cysts

*the spine was either incomplete, or hard to see or something like that (it was a bit of an overwhelming conversation, this isn't the only area where I'm a bit fuzzy)

*the arms and thigh bones were short

*the heart does not have (or seem to have) 4 chambers

*if we are as far along in the pregnancy as we think then the baby is measuring in the 3% , but they aren't giving that a lot of weight since we may just be less pregnant.  However, my gut tells me that we are not 2 weeks less pregnant than we think which is what the measurements might indicate.  We might be less pregnant but not by that much.

I'm sure I'm missing something else, I just can't remember what it is right now.  Although these items point to many possibilities there is one that points to a specific problem that is "serious".  I don't actually know the name of what that would be... but when I referenced our slight experience with T18 (Edwards syndrome) and it's "incompatibility with life" and used that as a reference point for what "serious" means the answer was something like "similar".  Since I was a bit overwhelmed and medically there is a lot more learning to be done I just let it go and didn't ask more.

If any of you wants to take a moment and say "Holy F**k" with me... feel free.  Seriously???? The only question I forgot to ask is "Is there anything normal/healthy/right about my baby??"

I've had moments of thinking maybe I got this wrong... but then I remember the conversation, and I recall the details I shared with my friends upon getting off the phone and I realize I'm not exaggerating.  I can't imagine that this is going to be chalked up as a mistake, Trever says he will be pissed if that happens. <As an update I talked with my doctors office and we came down to the agreement that it will "be shocking" if this baby is normal>

It totally depends on the moment for how I'm feeling.  I'd say I'm spending most of my time in the numb category.  It's overwhelming/terrifying/anxious/confusing/and extrememly sad.  So far I haven't experienced anger, or self pity.  Those might be coming later.  Unfortunately I haven't experienced happy in two days either.  Through a conversation I realized that my instinct hasn't even come close to being mad at God... I just figure we got an old egg/sperm (I know sperm are never old but a man starts to produce subpar sperm in the same way that eggs get old).  Bummer.  I don't think it's anything to do with anything I've done.  I probably don't need to say that but I'm just putting it out there.

I realize this is a lot to take in.  I'm not asking this to be kept private, so you have my blessing to talk to a Mom, or close friend.  I'd ask that it isn't actually made public and that some discretion is still used.  There are people in our life who will need a support system, we're probably not going to be able to provide that.  If you know someone close to us (family) please reach out to them.

Hopefully we'll have a better grasp on Monday about what testing needs to be done and what we're really looking at.  I am also worried about how this will be for the other pregnant girls, I'm sorry that this may cause them more concern.  I also don't feel any resentment/jealousy.  I don't want someone to think they can't share all the joy and excitement about their pregnancy with me.  Does that make sense?  I'm still super excited for everyone else.  Although it was a bit strange to see a "normal" baby at the airport this morning and know that isn't in our future.  Crazy.

Feel free to call whenever, please don't be offended if I don't answer/call back.  

Love you all.

Responses:

Hi my dear Jenni,

Thank you so much for sharing.  I am emailing and not calling for two reasons:  

1. I don't want for you to have to talk if you pick up the phone and then don't feel like it and

2. b/c I know that I will never be able to communicate with you all that I am thinking and feeling on the phone....at least here I have a little hope.....

Of course there are many cliche statements that flood our minds when we hear news that the world thinks of as 'bad'.  God's plan etc.  And although in my heart of hearts I do believe that God has a plan for each of our lives, this sometimes does little to answer the questions that arise or comfort in a tough time.  

But, Jenni, I have to tell you (with tears in my eyes and chill down my spine) that my second thought --almost immediately after I felt that ache in my heart for you---was pure joy for you.  I know that may sound strange and depending on how you are feeling when you read this...you may want to punch me through your screen...but....here is why.  Of ANYONE I know, I know that there is NO ONE whom this child of yours could be loved, accepted and appreciated other than your family.  You have an amazing gift with your children to create a safe haven for them.  Where others may see a the struggle, you accept with an open mind, heart and attitude.  For however long this child is gifted to be with you, and for whatever struggles may lay in his/her path;  he/she is truly BLESSED to have YOU.  Again, there is NO ONE who would accept as unequivically you.  No one who will love as unconditionally and give there all for their little baby.  

I can't and won't try to make any sense of the emotional roller coaster you will experience.  The hard choices, the hard times....I am sure they are in your future... and for all the sad and numb moments you will have I am truly sorry.  In those times when you just need to break...know that just as you will be supporting this child, your 'sisters', your family and friends are right behind to support you.

And to answer the question you didn't ask, Yes, there is something normal and right about your baby....he/she is yours.  :) You are a Gift for your baby and he/she are a gift to you.  A gift you may not think you are ready or maybe want to accept, but as an outsider and a friend....I cannot imagine anyone better for your baby and will pray for your strength, peace and joy as your embrace this little life of yours. 

Ok, now I am fully crying and have just one more thing:  I know you and I have both lost little souls that we had growing inside us.  This pain is brief and strong.  Remember that this little soul you have inside you LOVES you....they ARE blessed and WILL be a part of you and your family forever.  Regardless of what month of life they go 'home' you will see them, love them, and be with them always.  Seek to see the gift, no matter how strong the pain.

I am here for you.  I love you (and your little cherub!)

Love J L

Thanks for the info Jen - My heart is so heavy for you right now. We will
keep you all, and this sweet baby, in our prayers. Please know that we
are thinking of you so much.
Love, ST

Hi Jenni, 

Please count on us to help.  I can help with anything you need. I have lots of vacation time

and can help with the kids, go get food for your family, anything that will help out.

Please let us now. We love you and are praying for you and your family.

T

Hi Jennifer this is D, first let me say this is difficult to write. I'll do 

my best to stay away from trite sayings like "God will not give 

you more then you can handle" and opinions about what you should or shouldn't do. What I hope I can do is give you strength and hope. Twenty-three years ago, 

during my early February OB appointment I learned that something had gone 

terribly wrong with my pregnancy. I was due in April and already was measuring 40 weeks. It seemed the fetus couldn't process amniotic fluid so it was building up in my uterus. 

Ultrasounds followed with predictions about the expected complications with the 

baby I was carrying. Certainly this baby would be premature and although they 

didn't know exactly the cause, there was some kind of abnormality. I remember 

that day vividly, the questions, confusion and heartache. The decision was made 

to send me to a neonatologist at Swedish in Seattle where they were well equipped to deal with both my complications and the baby's whatever they would be. There really was no good news. I was in disbelief, it was surreal. I felt I was 

fighting with God for my baby, refusing to surrender my baby, begging for a 

miracle and finally asking for strength to endure whatever was to come. At that 

moment I found, strength and peace and the true meaning of faith.

Just some Mom straight talk....

Seeing Sam now you would never know that he was not expected to live. He had no 

muscle tone, could not move, cry, swallow etc... After two months in the hospital we brought him home on gavage feeds, every 1 1/2 around the clock because his 

under developed stomach could only hold an ounce at time. He was still on oxygen as he couldn't sustain his O2 saturation. I was so sleep deprived my emotions had

totally shut down. My other boys lost their mom, or maybe I just feel like they 

did. Having a child with a disability is much like everything else in life, you 

read about it, think about it and believe you know what it's all about and then 

you do it and there's so much more to learn and know, so many truths that are unspoken.
Sam's is doing great. Although he lives with us and needs our guidance he is very independent. The down side of his functionality is that he recognizes his 

differences and struggles with "I just want to be able to do things like everyone else." Living with this knowledge adds a daily frustration to his life and 

watching him struggle with reconciling it is heartbreaking. The low for me was 

the night I had to take a butcher knife away from him that he was pointing at his

neck. He was sobbing hysterically screaming he was going to kill himself. Two 

failed marriages and 23 years later, when asked I only talk about the successes 

not my unspoken truths. 

I there is some commonality in our stories but I also realize there are 

significant differences. I contacted friends of mine, TandM. He and his wife T, 

had a very similar experience. After a long bought with infertility they were 

finally pregnant with a baby girl, well into the pregnancy they found out the 

baby had very grave abnormalities. The rest of the story is T's or M's to tell. I contacted them and asked if they would be open to talking with you and Trevor, Tsaid of course! 

You and Trevor are facing so many unknown's with choices that seem 

incomprehensible. Have faith that you will have the guidance and wisdom you need,take comfort in each other's arms, find strength in God and believe in his power to heal your heart....
With prayers and love;
DK

Jenni-

I'm so sorry for what you guys are experiencing.  I can't imagine what you're going through and what a challenge it must be to keep putting one foot in front of the other.  From my perspective, you always seem to handle life with such grace.  I don't doubt that is how you will handle whatever comes your way.

Please know I'm sending prayers that all will work out for the best for you and your family, and that you're able to grow from the gift of this challenge, even if it's hard to see what could possibly be a gift in your situation right now.

Sending you hugs,

JS

Thank you for trusting our group enough to share this news before you are sharing it with others.  I have not been in your shoes, so as you anticipated, I am sure I don't have the right words.  But, I have been through trying times in my life and I am confident that you and Trever will find strength you didn't know you had as you continue to collect information and learn about what your future holds.  As a mother, I can only imagine that you are frightened for the health and well being of your unborn child as well as what this news will mean to your other children.  I know I don't know you well but your capacity to love and the joy motherhood has brought to you shines through you powerfully.  It is amazing how quickly we love the children we are carrying so I imagine it will be this love that gets you through this trying time.  You and your family will be in my thoughts as you continue to collect information and I hope that you get encouraging news about the health of your child.  Should you need support in anyway, I am here for you.

We will try to find an uplifting book for next month...something with lots of humor!  

With love, 

LP

Oh no, this made me cry.  and I feel like I'm having anxiety.

I'm totally here if you need anything.  I really missed you all this weekend.

Kinda don't know what to say, but know I've already prayed.

I will send a better email later.

MH

I’m so sorry this is happening; I firmly believe that this has nothing to do with you or God or anything other than plain biology.  Be easy on yourself, and please accept all of your feelings.  You don’t need to justify your emotions here, whatever they may be.  Just be.  You will live your way into the answers soon enough.

Keep me posted.  

Love you, hang in there,

-b H

I just wanted to give you an immediate "Holy Fuck!!!" with you.  Sending all of our love, well wishes and prayers.  When I have some more time to process, I'll write some more...

Love you guys,

Annie, Eric, Ella & Avery

Wow Jen; 
My heart is aching for you now, knowing how scary this all is and how much uncertainty there is in your life right now.  Wishing I could give you a big hug right now.  But - I know you will do amazing no matter what happens in the next few months.  At my hospital in Minnesota, we take care of some of the most involved kids in the area, and it is amazing how much joy they bring to their families, even with all of the struggles that go into caring for them.  It's never easy, god knows it is never ever easy, but of all people who have the love and support and ability to care for a special needs child, I can't imagine someone better suited than you and Trevor, if that is what turns out.
Love you - please let me know what I can do to help.
AS

Petey-

 I can't even begin to imagine how you are feeling right now.  Life can really just knock the wind out of you and just be completely shitty.  I know we don't get to see each other or talk very often but that doesn't mean I don't love you. You hold such a special place in my heart and if you need anything at all I'm here for you. Please just remember you are a truly wonderful mom, wife and person and you will get through this. Hold onto your babies and love that little one in your  tummy. That's all you can do… Please let me know what the specialist says. Jack had a large cyst on his brain on our first ultrasound with him. It took more blood tests and a couple weeks to determine it was an ok cyst. It is so horrible waiting for tests results and doctors. There have been so many times I have blamed myself for Jack's allergies. Did I eat or do something to cause it? I finally just came to except God just made him the way he needed to be. God sends us challenges that we do not understand but after some time we may be able make some sense of why these things happen. Our family will keep you in our prayers and please give my love to Trever.  I think the only thing "normal" in this situation is that you will love your child no matter what. Hang in there and remember if you need anything just let me know. With all my Love- JC

Hi Jenn, I heard this morning from my parents. My heart is crushing for you. Sooooo sorry. You guys are in my prayers. Please let me know if there is anything we can do to help out, I mean anything!!!

A M

Hey Jen. I left you a voicemail. (sorry it wasn't very helpful)  Please keep me in the loop. I love you. 

J M

Jen - I am so saddened by this news and have been praying for u guys since I read the email. I don't know what to say or do but I do know that God will not give us more than we can handle and that u will not be able to make it through this without leaning on Him. Please keep me updated and let me know how to pray about this situation.
Love you!
MW

Jen-

I am so sorry to hear about your families heart ache.  I don’t really have words to say how I feel, but please know that I am thinking of you and your family in this difficult time. 

My prayers and thoughts are with you.

Yours, SW

On my goodness....  

Please let me know if you need anything (child care, anything!). 

Xo 

AE 

I'm not really sure what to say. That's why the email is so short...  I'll be sending good thoughts your way. 

Oh, I’m so sorry to hear this…I truly can’t imagine the kind of emotions you are just starting to deal with and my heart goes out to you.  Please know that you and your family are in my prayers and I hope you get the best possible news on Monday.      

HK

My dear friend:
Nobody knows the right thing to say in these circumstances. Especially, your childless friend. All I know, is you and Trevor are the best parents I know. And I am confident this will make you better parents and people. It's shitty, shitty, shitty, shitty. But with how awesome you already are, I can't imagine how awesome you are going to be. Sending love. No strings attached love. 
AME

Hi Petey,

Dan and I love you and Trev immensely. Each of you are in our thoughts and prayers. Know that you are loved more than words can express and we are here...always! Sending Hugs and Kisses wrapped in Love!

C&D R

Hi Jen ! I was in Charlotte when I got this and I needed to get home to answer, that's why it has taken me so long. Awww Sweetie, my heart just goes out to you and I want to be there even though I know you guys have so many people who love and support you! The not knowing and having to wait has got to be the worst! It is hard to prepare inside when you don't know what you are preparing for.   I saw today that it is Natalie's birthday! That has got to help get you through until Monday! Just know that I am here loving you, bargaining with God, and feeling theHoly Fuck right along with you! I'm not going to call now, but when you can and want to talk I would love to!  Love you all! 

JS

Thank you for sharing what is going on in your lives with the new baby.  I want you to know that we are thinking of you guys and praying.  I have been woken at night thinking of you guys and just prayed.  You guys will be going through a lot of different emotions and decision making points.  I want you guys to know that we are here and if you need anything please just let us know.  I would like to talk to you, but I know you guys are probably getting a lot of calls and talking through all this.  Please let me know when would be a good time to talk.

Please know that we love you guys and even though we are miles away, we are there for you.  

Love the F's

Hey Jen,

I will miss seeing you Monday! More importantly, I don't know the details and I can't begin to understand how you may be feeling, but wanted you to know my thoughts and prayers are with you and your family. I have an ear (two, actually!) if you would like to talk at ANY time. Meanwhile, I'm sending you love, strength and positive energy.

Warmly,

SP

I'm so sorry to hear this. Please let me know if your family needs anything. Date night, a break from your babies, anything. BL

The beginning

I guess our journey really began back in November when we found out we were expecting our 5th child.  One of our children has already gone to Heaven, we miscarried early in that pregnancy but still believe in the life of the child.

Before I even took a pregnancy test I thought of this baby as a girl.  I hadn't ever had a intuition about the gender of one of my babies so it constantly shocked me.  Without thinking I would refer to "her" and her future life.  My daughter really wanted a little sister, my son really wanted another little brother... either way someone was going to be happy.

The pregnancy has been fairly smooth.  I'm so blessed to enjoy my pregnancies.

Around 18 weeks or so I started to realize how slowly I was growing.  Although I was feeling concerned I just told myself I was being a worrier for no reason, I had already started to feel the small and beautiful movements.

We went in for our 20 week ultrasound.  All three of our kids went with us (that poor tech!  even well behaved kids add to the energy in the room).  As I watched the screen it was so fun to point out the spine to the kids, and for them to see the profile shot.  After my husband took the kids out of the room I watched the screen a bit more closely.  I just had a funny feeling, but I quieted my fears with logic... "how would I know what normal looked like?".  The baby was small, they figured I was just not as far along as I originally thought.  I definitely didn't believe that I could be two weeks less pregnant, but maybe it was a combination of that and a small baby.

We were told to expect to come back for another ultrasound when the baby was bigger.  Then that afternoon I got a phone message asking me to come in the next morning to review my results.  This isn't my first rodeo, I knew this wasn't a good sign.

As stubborn as I am I continued with my super quick trip to Phoenix with some very special friends.  I called the doctor to ask for a phone consult instead.  I know it's not ideal to give information over the phone but I have a wonderful doctor who agreed to my request.

You know how things have a way of working out?  We were supposed to talk around noon.  At that time of day I was sitting comfortably with my friends outside enjoying lunch and conversation.  We had plans for some shopping and then pool time in the afternoon.  Can you imagine how my day would have been derailed if the call had come through?  I'm so glad that even though I was consumed with waiting I was able to enjoy those relaxed hours.

We headed to the pool, at this point I was expecting a call around 4pm.  The phone rang soon after, my heart tightened.  I walked to the other side of the pool area to take the call, sat down and within moments was hit with a sledgehammer.  The news wasn't good, and there was so much of it I was unable to make it go away.  There was a problem with the shape of the head, the brain, the spine, the heart, the babies size.  Even writing that now is overwhelming.  All of these were markers of a chromosomal or genetic abnormality.  I asked if there were many options or a few that were more likely.  I can't remember the exact answer I was given only that it was followed up with "it's serious".  I think she must have said Edwards syndrome and it didn't catch my attention.  When I asked for clarification about "serious" and used our previous experience (with our last pregnancy) with possible T18 as "incompatible with life" the response was "the same" or "similar".  Again that moment, that answer remained fuzzy.

As I got off the phone a friend was instantly holding me.  I couldn't even call my husband, I knew he wouldn't be able to understand me if I started crying (which I was doing with earnest).  I sat, talked, cried, even laughed with my friends for a few minutes.  Finally I had the courage to call my husband, who was home taking care of our 3 kids.

Our conversation was composed, almost detached.  We were both somewhat prepared and not at all prepared at the same time.  I wouldn't say that my life feel apart, but the world definitely tilted.

I will never know exactly how it felt to be alone that night like my husband.  Although he has shared the story with me.  I am thankful for the people who surrounded me, who let conversation and love flow.  Who helped me continue on with a wonderful evening together and never once asked me to be anywhere other than where I was.

Then next morning on the way home I saw a healthy baby at the airport.  It hit me, "I'm not going to have one of those". I fought the tears.  When I mentioned that I was emotionally exhausted my dear friend looked directly at me and said "you look emotionally exhausted".  I felt her love. I felt her acceptance.

As I tried to ask my friends, who had heard my first words as I replayed the phone call, if I was maybe being dramatic, maybe exaggerating one of them teased me.  "You're not really the drama type".  I knew she was right, I knew this was real, I knew I had no idea what was ahead.

On the airplane I looked at the flight attendants name tag.  Would I be naming this child?  Was the name more important now, what did it need to say about him/her?  It was another overwhelming moment.

Later that day I was alone for the first time.  The tears came fast, they came with furry.  I was full of so many questions, concerns and fear.  I was never really angry (I have friends who have taken on that burden for me).

It took us a couple days to send information to our friends.  And we learned that we had to wait almost 6 days to see the Perinatologist.  I spent the beginning of that time in a daze, staring at a wall, going through the motions.  Then I just went numb and functioned.  We still had a birthday party planned for my two oldest children.