Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Thursday, September 15, 2011

Results.. and a new plan!

The Perinatologist office called me back this morning.  I was on the way to my OB's office for my NST and my 36 week check up.  The nurse told me that there were two sets of numbers run for Meagan's lung maturity.  The first set, she passed no problem.  The second set, they like to see "4" and she was at 3.75 so the Dr. was not going to pass her.  Sigh.  I was highly disappointed, but, what really put me over the top was what she said next.  She then told me that the Dr. had ordered to come back in 10 days for another Amnio.  TEN days? Seriously? To get from her result to 4?? Now I was angry.  That's 10 more days of fluid growth, of head circumference growth, of fluid pressing on her poor brain.  We aren't "early" anymore -- by next week I'm going to be 37 weeks.. full term in medical lingo.  There was no way I was going to put up with this.  We had gone through enough back and forth with this Peri's office ... and now, it was time for us to make the decisions.
I reached my OB's office just as I was hanging up with the nurse.  I told her I wanted to have the Dr. call me back directly -- she said he wasn't in the office that day.  I asked , "well, what office is he in?" She gave me the phone number to the office and then said "he may not get back to you because he's going out of town this afternoon."   Well, I guess we'd be calling him then until he talked to us.
I hung up the phone and walked into the OB office.  I went on the monitor for 25 minutes.. Meagan was doing fine.  I was contracting every 1-4 minutes..but... what else is new.  It's pretty much my state of being these days! I think I'm about as stretched as I can be, so contractions it is! After the NST was over, I went into the room to wait for the OB.  As soon as she knocked on the door, I heard her phone go off. I immediately thought "uh oh.. she has to go to a delivery."  Yep! So, off I went - headed home to trade cars with Brian so he could go pick up the girls from school since I'd have to return to the OB office a bit later when the doctor returned. 
What I didn't realize is that this little random 'break' in my appointment actually would work out well.  Once I got home, Brian and I discussed the Amnio results.  We decided together to call the Peri back and try to talk with him.  I had Brian make the call because I was way too emotional at this point - at a crossroads between frustrated, angry, and disappointed.. so he needed to do the talking.  When Brian called, the Dr. was with a patient so Brian asked to have him call us back ASAP.  About 5 minutes later, the phone rang and it was the Dr. Brian simply asked him for a more thorough explanation of the Amnio results.. and why when she is so close, but having such intense fluid growth, he would not consider passing her.  The Dr. said "If she were in dire need, or sick, he would absolutely deliver her based on her numbers. But she wasn't, so he didn't pass her."  Brian voiced his concerns over such a conclusion, citing that brain deterioration was certainly a "dire" situation...especially considering we DON'T know what her prognosis will be -- why allow even more pressure to build? We could be losing things that may have turned out delayed or damaged... ten more days could mean they are ruined. 
The Dr. then said that he would have us come back next week for another Amnio instead of 10 days.  Brian said no, that we would want to look at delivery next week.  We wouldn't need another Amnio since her numbers were so close -- the Dr. said that as long as we knew the risk of her possibly having some breathing issues if we delivered next week, he'd be ok with it.  Brian said "yes, our concern now is her brain - not her lungs at 37 weeks  - which is medically full term" ...after much discussion and sticking to our guns, the Dr. agreed and said he would approve delivery for next Thursday! :)
At this point, I left the house to go back to the OB since she had returned from the delivery. She came in and said the Dr. had called her and told her about Thursday - she was fine with that.  She looked at my most recent pictures of Meagan and said "Poor baby!" She said she would have her scheduler work very hard to get me in Thursday and would call me tomorrow with my exact time.  She said "if" by chance they could not, then it would be Friday - but she herself would prefer Thursday so we'll just see what happens with the scheduling.  She was very supportive and extremely understanding of our position.  She went ahead and set up one last NST for Monday and scheduled my pre-op appointment for that afternoon as well. 

I do want to clarify one thing.  As much trouble as we have had with this Perinatologist, I'm trying to keep an open mind.  As much as I'd love to scream at him, I know that for some reason, we were sent to his office.  Just as we were sent Meagan for a reason, there must be some underlying purpose as to why we saw this doctor.  I still plan on coming in at some point WITH Meagan once she is home/stable..etc.  I think a big part of the treatment we received was not just that he doesn't see many Hydro cases, but, also that he doesn't see the humanity in the diagnosis.  Perhaps by meeting some of these babies (as other Hydro families have told me they also did), and building the humanity of these babies, we can stop the complete dismissal of their value of life.  Perhaps the Specialist will see that there IS quality in every human life - even if he can't see past the grim prognosis of certain diagnoses he must deal with on a daily basis.  Perhaps Meagan was sent to us so she can add a little bit of beauty into the Peri's mindset - and maybe as time goes on, and he deals with other Hydro families, he will start to think of these children more and more as his special patients, instead of just words in a medical diagnosis...hopefully resulting in a shift from "would you like to terminate" to "here's how we treat her" ......

SO very happy that in 6 days from now, Miss Meagan will be OUT and on her way to some relief with her shunt.  I'm getting a bit apprehensive about the c-section now because I was actually surprised at how uneasy the simple Amnio made me feel! But.... it is what it is. I have to go through it, so I'll just look forward to next weekend because then it will be over and I can just focus on Meagan. 

Meagan - 6 more days. You can do it baby girl. We love you so much and cannot wait to see you, kiss you, hold you and just give you all the love that we know you have always deserved!

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