I went to see my OB yesterday.  Baby M is doing well.  His head is down and he is measuring a little ahead of his 31 weeks.  He was doing major kickboxing moves inside me all day yesterday.  My doctor was asking how I am doing and feeling with this pregnancy and I broke down.  I am SCARED.  That is the most distinct emotion I feel with regard to Baby M.  FEAR.  Not joy, not hope, not whatever else an expecting mommy should feel.  I feel so much love but it is tempered by my fear.  Dr. D assured me that he thinks he would be feeling the same thing if he were in our position.  He asked me what the other doctors are suggesting that we do once Baby M gets here.  I told him that mostly they tell me to "hope for the best" or "try not to worry".  That blew him it most often blows me away as well.  He said that he thinks we need to be proactive and take Baby M to a hepatologist (liver specialist) within the first couple of weeks of his life.  He said we have to take control and make sure that we are doing all that we can for Baby M, not just praying.  He said to make sure that we get a referral from the pediatrician at the hospital where we are delivering for a hepatologist at Children's Hospital.  It felt so good to finally have someone agree with us and suggest a proactive approach.  I guess the others are afraid of scaring us (or of making a mistake in their diagnosis)...but we are already scared.  Anyway, if you suspected that an adult had something wrong with their liver (or any other organ), wouldn't you get it checked out?  I have not been able to wrap my brain around why everyone just keeps saying things like, "Well, we just have to hope that this baby will be ok".  No.  I am not going to sit around hoping.  This is my baby!  I will do everything in my power to ensure his safety, health and long life.

In the meantime, Ted emailed the geneticists yesterday to see if they'd started the testing (because they would never tell him unless he asked them).  Apparently, they have finished the tests and now they are analyzing the findings.  They should have answers (or no answers as the case may be) for us by the end of next week.

Last night we met with my friend Courtney, who is a doula (more on that in a later post), and Ted said to her that one of the things we have learned from Maxie's birth, life, and passing is that we need to be the advocates for ourselves and our family.  There is nobody who is going to step up to the plate and make sure that you are getting the right care.  Everyone is much more consumed with protecting with own asses (he didn't say that...that is my two cents).  You have to carefully watch what is happening and give directives if you need to and not worry about whose egos you bruise or who you piss off.  It's so true.  This is true with regard to health concerns, the care of your children, the care of your pets, and everything else important.  You are your strongest advocate.

I know that for so many other parents, faith has been the most important thing that has pulled them through and given them peace of mind.  Sadly, I don't really have a faith (said by a strongly self-identified Jewish girl).  I am proud to be a Jew and love our customs and celebrations but god didn't answer my most important prayers and I have never felt like I was given a clear understanding of what happens after we are gone.  If this sounds like a good window to proselytize me, it's not.  My brain just isn't wired to accept some other religion either.  They all sound equally like good human guesses as to how the universe works.  And, my Jewish upbringing is probably what keeps me questioning all of the time.  Rabbis spend their entire lives questioning what they read in the Torah and Talmud...they read, they analyze, they argue, they form their own conclusions.  Baby M and Maxie are the most important people in my life.  When it comes to them, I need to be proactive.  I need to know why and what and how.  I guess that's what keeps me reading about the afterlife and trying to imagine where Maxie and I might meet again.  And, more than that - it keeps me in pursuit of him...hoping that I will figure out a way to connect with him sooner, rather than later.  I miss him so much.  It is what also makes it IMPOSSIBLE for me to just pray and hope for the best with Baby M.  I need to feel like we are doing everything we can for him.  He is too valuable.  Yes, the search makes me crazy and is sometimes overwhelming but the fear is worse.  I still try to surrender whenever I can though because there is only so much I can do.  Hopefully, prayer counts for something.

4 comments said...

I think its great that your GYN understands the need to be proactive. Is totally understandable what you feel and how you feel. I think if there is someone that does not get it; its their problem. You are doing what an amazing mom would do for her children. And quite honestly I have faith and it helps but that does not mean Im going to sit and pray- i dont believe its what God wants. He knows we are human and he also knows who we are. Im so excited baby M will be here so soon. Thinking of you. Kira said...

I meant only to sit and pray. I do that already.

NikaM said...

Your OB sounds like a great doctor. Glad you have someone like that on your side through all this.

Susan Ireland said...

Good that the OB is on your side. Yes, of course - go and get Baby M everything possible.

After C died of a preventable illness to which their is a safe and effective vaccine, I no longer trusted the UK vaccinations committee to advise us on necessary vaccinations. I wanted M to have any safe vaccinne that was liscenced for use in the UK for children her age, where it protected against a disease with fatal or serious consequences. Doesn't that sound sensible? It does to me.

However, the most common reactions from medics is that I am NEUROTIC. Or, that it is understandable that I am anxious, but my approach is not sensible. It's weird - because it would have saved my daughter's life - and here I am - the BEREAVED MOTHER - the living testament that their advice was totally shit. And they still say that to me. Bastards.

You are not mad. You are the best advocate. Big hug to you xx