Wednesday, March 14, 2012

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 14th, 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.

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 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 may want to punch me through your 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.

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;

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,
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, 

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.

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.

 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!!!

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

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!

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!). 
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.      

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. 

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!

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! 

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.


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

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