Thursday, June 6, 2013

The eye of the storm...

We've entered into the eye of the storm-it's calm...
We've reached viability...
The baby has continued to develop appropriately...
It appears the IVIG is working...
No new bleeds...

But it will get rough again...
For now, we're in a holding pattern, because no one is looking to do anything at this time.
Nothing to do but wait...
But when delivery gets closer, we will have lots to discuss, and even more so after the baby is born.  

Yesterday we had an appointment with the highest of the highs as I call him.  
This doctor, is the head of maternal fetal medicine at one of the major hospitals near me. 
This doctor does not have patients-he oversees, he consults, he researches, he provides professional opinions and advice to his colleagues.
I'm his patient.
After our suspected diagnosis, I have not seen his colleagues-only him.
 I requested an ultrasound at my last OB appointment, which is where I saw a colleague-voluntarily.

Here's the update: 
The baby looks great! He did an internal, and things are looking as they should.  Although we don't have much information to make the conclusion that IVIG is working, other than being annoying, there's no reason to not continue.  So continue we will.  
When I mentioned that I hate the IV, he chuckled and said, "so you'll curse me Friday afternoons..." 
Big deal, IVIG is an incredibly successful treatment, and although I hate it, I'm grateful for what it can do for my baby.  And my future babies...

Yes, you read that correctly-future babies!
Now, obviously I don't know what will be, but from a medical standpoint, specifically concerning the diagnosis of Neonatal Alloimune Thromobcytopenia (NAIT), there is no reason I cannot attempt additional pregnancies.
Here's why: one of his colleagues, when I pushed for an answer regarding future pregnancies and doing Preimplantation Genetic Diagnosis (PGD), her response was to wait until we see the baby and get that piece of information.  
Not pro-active, and definitely not what I wanted to hear.  All I could think about were donor sperm and donor embryos.  
I was also told by this doctor that another pregnancy would be at the risk of the baby-because the bleeding typically does get worse.  

Yesterday, when I mentioned we want more kids, his response was worlds different!
He'll get his colleague calling the Blood Center of Wisconsin to give us more specific answers about my husbands blood and antigens.  
If it's something we can weed out, then PGD it is from here on out, although my feelings on that will be a post for another day
I'm writing that down now....
However, he explained, that because we know what we know-we will screen a future pregnancy for the antibodies much earlier-so much earlier that a bleed would not have a chance to develop!  Therefore, although IVIG is annoying, and I hate the IV, a pregnancy would not be at the risk of a child-because we would intervene before any issue occurred!   

There is no reason I cannot attempt another pregnancy!!!!!
But of course, I need to be willing to go through IVIG...
Tomorrow is treatment #3, and after last time, I'm a little nervous, so if you ask me now, I might say I'm not sure...
If you ask me tomorrow as I'm sitting in that chair, I'll probably tell you I won't do this again...
But if you ask me a few hours after I'm home, you better believe I'll do IVIG for all 40 weeks if I have to! 

Now, the question of delivery is just that-a question.
Every 2-4 weeks the Neonatal Intensive Care Unit (NICU) and the Maternal Fetal Medicine (MFM) doctors meet and discuss.  
They've already been discussing us...and they're mixed on how to deliver this baby.
The highest of the highs-all for natural delivery, especially since we want more children.
Out of all of his research he can conclude that any baby diagnosed with NAIT, does not present with it at birth-due to the successful treatment of the IVIG-so, why do a c-section when the baby most likely will not appear with it at the time of delivery?
Because there's no published literature about the delivery of a baby with our case of NAIT.
And that's part of why the opinions are mixed.  Besides, it is pretty standard to just do a c-section to avoid the possible unknowns.   
We know for certain the delivery will take place at this hospital, not where I delivered my boys previously, so the baby can go to their Level 3 NICU for a proper workup. 

So for now, the Highest of the Highs will continue his research.
I will continue IVIG.
The NICU and MFM team will meet again.
We will reconvene in four weeks where my husband and I will be presented with professional opinions, but ultimately the decision of how to deliver will be up to us...
When the storm will begin brewing again...

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