Trying to hold ourselves together and find our new normal after loosing our precious twin babies at 20 weeks to HELLP Syndrome.
Baby Boy A and Baby Girl B, conceived after 20 months and IUI plus injectibles; born still on November 12, 2008.

A blog about pregnancy loss and infertility. And whatever comes next. A blog about hanging on together and holding each other up.

Friday, February 13, 2009

Test Results - Part 2

First, thank you all for your sweet words yesterday. It was such a joy for me to share our sweet babies with you.

On the test results front, it seems that no news is – well – no news. I feel so deflated right now, that’s the only way to describe it. Dr. C. was kind as he always is, but I just had so built up this appointment in my head, and it was horribly anticlimactic, to say the least.

I just don’t understand why doctors are so hesitant to give educated guesses. I mean, we don’t go to them for guarantees! I feel like I’m being underestimated – like they don’t trust me to realize that their opinions are just that. But I go to them because they’ve seen this stuff before and I'd like some thoughts on what normally happens. But anyway.

He wouldn’t give us any numbers. Wouldn’t give us any rates of reoccurrence. Despite the fact that my clotting disorder blood tests came back negative now, they were positive while pregnant, so he still feels like the clotting disorders were the root of all this evil.

He said he wouldn't tell us to not try for a family based on my history. (Now, if things go wrong again, then . . .?? Great.) He thinks that if I have a single pregnancy, and if I’m treated with Lovenox, I should have a “successful outcome.” Or maybe he said “an outcome you’ll be happy with.” Something like that.

I tried to pin him down on that – “what does that mean, like, I’ll get to viability?” He said no, better than that. He said that we "should be able to get the picture that we have in our head of our child in kindergarten." O-kaaay.

I tried to get an idea of what the pregnancy would be like. I said, “you know, my bosses will freak if I tell them I’m pregnant again.” To which he responded, “Well, you know, its just a job.” To which *I* responded, “Yes, I know. And B and I are willing to do whatever we need to to make this happen. But I’d like to be prepared: I mean, if you’re telling us there will come a point where I’ll have to be in here every day or in the hospital or whatever, I want to be prepared for that.” To which he responded . . . well, did he even respond? I think he said something like, “no, that’s not what a ‘positive outcome’ looks like to me.” Fine.

I know he can’t give us guarantees. But freakin give us something to go on here! If I’m going to be out of work, we can’t afford the house. That’s fine, we’ll sell the house – just let me know. If we’re going to have a preemie who will be in NICU or can’t be in daycare – again, we’ll be thrilled and will make it work, just let me know. Just let me know if these things are a real enough possibility that it makes sense to plan for them. If it doesn’t happen, even better, but just let me know.

(*I'll* gilve you a guantee, and that's that I'll have high bp if I'm pregnant again, even though I never did last time! Two days ago my bp was 107/73 - today, it was 124/82. Anxious much?)

Ladies, I know everyone's medical history is different, but if you've been through something similar, how did your "going forward" appointment go? How would/did you emotionally and practically prepare?

Oh yeah, and we also asked about Baby B’s heart. He said that since it was most likely a structural defect there’s a 4-5% chance of reoccurrence and that they’d watch very closely for that. Finally. A number. Scheeze :)


Mommy (You can call me OM) said...

I'm pretty much in the same boat, as far as there being no clear answers. I'm curious what others' experiences show.
However, it sounds like your doctor is hopeful. I suppose there are never guarantees all will go perfectly. But, his statements seem to be reassuring.

Devon said...

i think the word you are looking for is MALPRACTICE...they can't give us *too* much for fear we will turn around and sue them. stupid, but its what I have learned the past year...

And the truth is, every pregnancy is different and he sounds just like my peri, in that with lovenox and bed rest he thinks i can get to 30 weeks...with a singleton!

here is the post about my appt with my peri about 6 weeks after the boys died...maybe it will help you?

((hugs)) its been a rough week for you. allow yourself to process this info and then do with it what you can...

Mommy (You can call me OM) said...

This probably isn't the best place to put this, but I'm too lazy to email. Here's something I found when briefly researching Job: Job lost everything: his wealth, his health, and his ten children. All swept away in one satanic storm. Reduced to a heap of flesh, ashes, and tears—rebuked by friends and jeered by strangers—righteous Job wrestled over the purpose and presence of God in the midst of unbearable pain.
Here is a link to an illustrator, author whom I found interesting:
I can't recommend it, simply because I haven't read it. But, like I said, it looks interesting.

Mommy (You can call me OM) said...

Yes. It's me. Again. Am I not annoying?
I've been meaning to ask if you are on I'm just starting to keep track of who I know from where online. I highly recommend joining if you haven't already. Peace.

Mrs. Spit said...

Aww, frick. I remember this appointment. It's not that he won't give you educated guesses, it's that he can't. There are none. This truly is the worst disease in the world - no known cause, no cure, not even a test to predict it.

The pre-e boards will have your recurrence rate (it's about the same as mine). I know that they repeat the tests after pregnancy, just because things change.

I so wish they could tell you that this will never happen again.

Jacinta said...

I'm with Mrs Spit on this and will add to her sentence "... and it has killed women and babies since the dawn of time"

I just sent you an epic email with details from my appointments. To summarise, nobody knows.

My unsolicited financial advice would be to see if you can live on one income, so that if you do get caught out again, you are able to have one less thing to worry about. Then, even if you go to full term at work, then that second income is upside that you hadn't planned for. I know, I know, sounds great in theory!

Stacy D said...

It's so hard, isn't it? Not having anything solid to go on? We're in the same boat with what happened to Isaac... it was a random/fluke thing. The genetic counselor really couldn't talk recurrance rate, but said it was very low (I'm guessing 2-3%ish?) That still somehow feels huge when your child was diagnosed with a birth defect that occurs in 1/10,000 babies.

I would just encourage you to take it one day at a time, and to remember that ultimately, God is the one in control... He is the giver of life, whatever that looks like. For both of us, it hasn't looked the way we have wanted it to. And so it can even be hard to trust Him... but He is trustworthy, and He doesn't change based on our circumstances. That's such a difficult thing to really believe in the midst of the grief of losing a child. But it is truth, and we need to cling to it.

I will be praying that God would calm your anxious heart, that He would give you peace about future pregnancies, and that He would grant you guys wisdom about how to proceed.

PS-- My blood pressure was high for a while after delivering Isaac, too... I'm chalking it up to stress and grief :)

Jeff and Kerry said...

I'm sorry you didn't get much from your appointment, I can't imagine how frustrating that must be. (((hugs)))

Soralis said...

Thinking of you. I hope you get some answers. Hugs