Thursday, May 28, 2015

I know I know I know I'm a broken record talking about Pallister-Hall (we should be getting Winnie's test back soon!) and genetics 24-7 but I have to force myself not think about it that way.  We're so excited about the new baby and part of having another child, who's sister has a syndrome, means we have to prepare for that same possibility for this new baby!  It's a genuine concern the baby might have Pallister-Hall so it's just part of the road we're on.  We met with my OB for the first appointment and just went over the normal things about the baby.  We did feel like we should mention what is going on with Winnie.  He obviously wasn't familiar with Pallister-Hall but he gave us his opinion based on his basic genetics education. That first appointment was on a Thursday, and then Saturday night at 8pm I get an incoming call from a random number.  It was my OB!  "Hey Ali, I've just been looking into this syndrome and was really curious about it since we last spoke.  I'll mail you the things that I've found from these medical journals.  But here's what I've learned..."  He gave his two sense now having more background on the syndrome.  WHAT OB DOES THAT!?  I swear, what did we do to deserve these amazing doctors?!  Not only for Winsley but now for this perfect baby too.

 Genetics is confusing.  I was able to keep up with alot of the things he was saying and actually already knew most of what he was telling me but I'm still unclear on all the details.  My last pregnancy I had no complications.  I delivered four days early and was healthy.  No urgent scares with preterm labor or anything! Everything was discovered after she was born.  My OB thought outloud with us and went over our options.  We kind of have to decide if we want to treat this pregnancy as a high risk pregnancy, extra ultrasounds, more testing of the baby for the gene associated with Pallister-Hall, ect even though technically it's not.  All I could think was that sounds expensive and just alot of hassle for something we aren't incredibly worried about.  Ok, I am worried about it but it won't change our decisions and we won't know the severity of anything either way until baby actually arrives in our arms!  AHHHHH the thought of holding a new born that I get to kiss and cuddle whenever I want! If everything goes like the last pregnancy I'll be perfectly normal.   I would like to know if this next baby has Pallister-Hall but I don't want to be a pin cushon because the doctors are curious about the baby.  I like that it is our choice.  Alot of pregnancies are high risk and it's a huge burden for the families to go to these appointments.  I'm sure every appointment is so scary wondering what you'll see on the next ultrasound or anticipating if the babys growth is going well or not.   Luckily if this next baby does have it, everything is fixable and we're more prepared to deal with it! We have a more in depth ultrasound tomorrow and I meet with a genetics for me and the baby tomorrow!  So we'll see if anything shows up on those but I think if we want those more specific tests we have to go to a specialist that does a complete work up and that's just not something we feel good about right now.  Dayton and I really should probably get tested to see if we are carriers of this gene or if Winsley's condition was just a one off scenario since we don't have any symptoms of Pallister-Hall.  We still are waiting on Winsley's genetic test like I mentioned which could throw everything off if it comes back negative for Pallister-Hall since it's not a 100% thing quite yet.  

Phew that's alot of information.  Overall, I don't have any major concerns or bad impressions so far I just feel like we need to follow protocol!  I think I'm getting cheesier the longer I'm a Mom.  No, I'm sure that I am.  So many immediate answers to prayers and I feel so protected by something bigger than me.  It will all be perfect and happen just how it needs to.

I think every single one of us could agree life is always different from what we initially plan. Before we had Wins I remember hearing stories of babies who had health problems like Winnie's thinking you NEVER know what can happen.  I would stress out when I was pregnant and think I could go my whole pregnancy just fine, give birth, and be blind sided by something terrible.  I had seen it happen 80 times before with other families and my heart just broke for the them.  But that is exactly what happened to us.  I thought I could never do that.  I imagine being pregnant with Winnie and reading a blog like this and being so worried about this baby I was carrying.  So worried that it would happen to me.  All that fear would consume me.  I knew/know every baby born is such a blessing and is hand picked for their family but still, it's scary!!  I wish I could tell that old pregnant self and I try to remind myself right now that it's not as scary as it seems.  I think it's meant to be that way.  The pain we go through is meant to be forgotten.  It makes it easier to withstand the next thing.  You survive, you learn, grow, and oddly enough you're happier than you could have ever "planned" for.  Baby girl/boy we can wait for you to arrive!!  Bake and cook as long as you want!  We're doing every little thing we can to prepare for you!  Plus, Wins needs some more practice on sharing.  

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