No answers this week

Tuesday, May 15, 2012

Folks have asked about the genetic tests that we are doing.  Those really expensive tests that we have been told probably won't shed any light on anything anyway.  We were told that we would probably have results this week and we've been waiting for the last two months with baited breath.  I think we both feel like we might find out something (like that there is no genetic disorder) even though we have been warned that we likely won't learn anything from the tests.  If we find out there was no genetic disorder linked to Maxie's death, then Baby M's chances of survival would probably be the same as any other child born to any other couple.  This would be "good news".  Ted emailed the geneticists yesterday morning to get a status update and we found out that the tests haven't even been run yet.  They were supposed to have run them two weeks ago.  It takes about a week for the geneticists to run and then another week to analyze the results.  They run the tests in batches and for some reason the last batch was delayed.  I still wonder why they wait for us to contact them and they can't just be proactive to let us know first.  If they knew that they had to delay the testing, why couldn't they just call us?  It just doesn't seem professional...or humane.  It is beyond frustrating and disappointing.

I wish that things like this didn't knock me out so hard but they do.  All day Sunday, one of the things holding me together was the knowledge that these test results would come back this week.  Now that I know we have to wait another few weeks, I am just completely knocked out (again).  I am not the most optimistic person anymore but I am patiently waiting to find out that what happened to Maxie was not genetic and I am looking forward to taking that off our lists of worries.  I have no reason to think that this will be the long shot outcome of these tests, but I am just convinced that we are going to get news that will help put our minds at ease.  I was just hoping to get that news this week instead of having to wait another three weeks.

The email from the geneticists took all of my breath away and left me in a pile of sorrow.  Even though I kept it together really well on Mother's Day, I had a real breakdown on Saturday in anticipation of the day coming.  I cried myself to sleep and was doing that until well after 1 am on Saturday night.  Each day is so different.  The pain changes but never subsides.  It's hard.  Really hard.  And, at the core - I just miss Max.  I just miss him so much.

When Ted got home last night, we were both feeling it.  We tried to watch our new favorite show (which I think may have only been good for the first episode because by episode two, the "wow wee" factor was feeling kind of repetitive) - "My Big Fat Gypsy Wedding", but we couldn't just put ourselves aside for the hour and marvel in spectacular festive culture of North American gypsies.  Ted put his hand on mine and with tears in his eyes said, "I am so sorry that this is our lives.  I am so sorry that we can't just have our baby".  I am so sorry too.  This is not the life I envisioned for us when we fell in love.  It was not the plans we made when we stood on the beach and married each other.  It is not the way I ever imagined things going when that beautiful little boy was born and turned my world into a more colorful and lovely place to be.

It was the mention of babies that made me realize that I hadn't felt Baby M in hours.  This is especially weird because he moves A LOT and I can usually see him moving in addition to feeling him PLUS we had just eaten dinner.  Baby M likes dinner and always starts doing somersaults after I eat.  I decided to call my doctor to ask his advice.  Instead, I ended up with the doctor on-call.  She is another doctor in the same practice who I am sure is so wonderful when you haven't had a baby die.  She smiles and giggles a lot.  I have had to see her twice since Max passed.  It is always awkward.  I explained to her that I wasn't feeling him and she asked how long it had been.  She suggested that I just go to the hospital to put our minds at ease.  Then she asked, "Do you feel you have reason to be nervous?" and I said, "Well, my child died last summer from SIDS" and she laughed and said, "Oh, well, then you should probably go".  Funny.....Not.

I am not sure I need to tell this whole story but, we did go down there.  The whole way there in the car I wondered who I was more scared for - the baby or me?  I am so scared that I will be tested again - forced to survive this torture for a second time.  I wouldn't live through it.  I currently don't live - I exist....but Baby M gives me hope that I might someday live again.  If I had to go through this again, I am not sure I would live - just continue existing.  That's no life.  This - what I am doing now - is not living.

The nurse who attended to us after arriving was very nice.  I explained to her that I hadn't felt the baby.  I told her about Max.  She wasn't weird or awkward or fake.  She simply made me feel that coming in was the right thing to do and told me how sorry she was.  She hooked up the heart rate monitor and we could hear right away that all was well with Baby M....and wouldn't you know it?  He started kicking right then.  Big powerful ones.  Ted and I felt so relieved.  Relieved and grateful for this baby's heartbeat.  A promise, we hope, of life after this terrible, unbearable storm.  I cried the whole way home.  This is all just too much to take and I am just lost without Max.  Just completely and totally lost.

7 comments:

jessica said...

I wish that there was something, anything that I could say that would comfort you and ease your pain. I'm sorry that you have to wait another few weeks for your test results. None of this is fair or humane. It's not fair that you're waiting for results at all. It's not fair that you had to do the tests in the first place. I'm am so sorry that this is your life too. I'm so, so sorry that sweet Maxie is not here with you. That is the most unfair and inhumane thing of all, that your beautiful baby boy is not with his Mommy and Daddy. I am sending you, Teddy, Maxie and Baby M lots and lots of love. xo

Susan Ireland said...

My take is that the genetic service are totally out of order. Any normal person would be on tenderhooks for these results - how can they not know that, and act accordingly? - the pregnancy just makes it even more scary for you. Slipping on their timeline is pretty rubbish, but not even letting you know is absolutely appalling. Write and complain and ask for a refund - if you can be bothered. I know these things sap your energy.

The anxiety trip to the hospital - yes, I have that t-shirt too. We went up a few times on exactly the same mission. Mostly the staff was ok - sometimes they were less good. Make sure they have something on your notes at the very top about your son. We did - but often you end up explaining it again anyway. I have a lovely friend who lost her daughter to cancer, who had 2 subsequent babies. Her take is that pregnancy after the death of your child sends you a little barmy. It helped me to know that I wasn't going mad alone, but was in good company :)

Please remember, the most likely thing to happen is that everything will be OK. In good moments that helps me - in bad moments, we both know the counter argument. It is not the life we planned, but I truly believe it can still be a good life - just not every day. Take care x

Rose said...

Truly it is not humane that the results will be delayed and they did not call. I am holding you, Ted, Maxie and Baby M in my mind and heart. xoxo

Bianca said...

oh sweetie, it just seems like you are getting so many kicks to the gut after already living with the very worse loss possible, I am so sorry! I have been praying that baby M is your rainbow baby in every way and that someday you are all with Maxie forever. Love you.

Egreeno said...

I'm so so so sorry that this is the existence you guys have to be in right now. So unfair! As Bianca said it just seems like these kicks keep raining down when you've already suffered more than anyone should. I wish that we could, any of us, do something to protect you. Love you all so much and sending every prayer for you and Ted and Baby M and Maxie!

jkbrumbaugh@gmail.com said...

Sending a big hugg from all of our family.

Jayden's mommy.

robyn said...

i am sorry for the delay of answers from the testing and so sorry for the pain that you are suffering. i am sorry for maxie who doesn't get a chance to live his life surrounded by you and ted. i do know that baby m will be so loved by you both...here's to his big powerful kicks.
all my love.
robyn

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