Wednesday, June 10, 2015

His Love Song

Since I haven't written in a while, this will be hard to keep short.  I'm sorry.

I haven't shared much about it, but the last 6 weeks have been a nightmare for me.  In 2013, after being told by my long time OBGYN after Ezra was born that if I wasn't going to do "professional" counseling (I have The Great Counselor, I hardly think some lady is better than He) and go on antidepressants, then I needed to find another provider.  I did.  And that was all fine until I got pregnant again because my PCP doesn't do prenatal care.

I decided I would just go to Maine for all my appointments, only to find out after my first visit that my insurance wouldn't allow me to go out of state without a referral.  So I signed up at Goodwin Community Health  (I normally keep names private, but I'm all done with that.  If they are ok treating me like they do, then it must be ok to share) in hopes that I could do the majority of my prenatal care there and then transfer to Maine at the end, like I have with the last 3 babies.

I started having a lot of heavy bleeding.  Not spotting, BLEEDING. And it was going on for a couple of weeks.  I called the office before I even had my first appointment and when I asked that she order a scan to check on the baby, the midwife Lucy (from Garrison) told me "I'm not trying to be annoying, but it's either going well or it isn't and an ultrasound won't change that."  I said fine, I would wait until the scan at 13 weeks where we check the baby for anencephaly at which point she brought up genetic counseling and testing.  I told her I don't do those things and don't want to and she said I would have to in order to get the scan to check the baby's head.  I said "Well, I'M not trying to be annoying, but I'm not going to." and that's when she said "How did you end up at Goodwin? I told her and she followed with  "I'm not sure this is the best place for you... we can't even refer you to Maine bc we are affiliated with Dartmouth..."  I told her it didn't make sense since I've now had THREE babies in Maine that I would go somewhere else and she said she would look into it and call me back and then never did....

That led to me setting up an appointment at Rochester OB who does send patients to Maine and my first appointment there has had me in tears repeatedly.  First they drug tested me saying "Everyone in Rochester is on heroin"  and then forced me, completely against my will, to have a test for sexually transmitted diseases because "People get embarrassed about their life styles and don't tell us the whole truth and we need to be able to care for the baby"  And even though I begged her not to put that tool inside of me because I never do paps in early pregnancy and had been bleeding a LOT, she still did.  I cried for HOURS when I left.

Then, she repeatedly referred to Rachel as my "anencephaly pregnancy" instead of my "daughter" while going through the history of my children.

I told her I can't take folic acid and explained why. (because of my MTHFR mutations)  She argued with me that I needed to be on 4 mg of folic acid a day "because of my history of anencephaly" - I told her I need active folate, that it's different, that folic acid had almost destroyed my body because I can't process it, and that I had what I needed.  She said ok and I thought we were on the same page.  Until I went to the pharmacy and they tried to give me a prescription for folic acid she had called in anyway.

I told her I didn't want to follow her plan of a scan at 11 weeks and again at 13 weeks bc it's too far to go to Maine every other week - she insisted I need the 11 week apt so they could do genetic testing before I was 13 weeks.  I told her I'm not interested in that and the trip is hard for me to make with 5 kids at home.  She scheduled me for 11 weeks anyway and said I could tell them that when I get there.  I called the office when I got home and told them I wouldn't be going to the 11 week one, to please move it to just 13 weeks - they said they would.  Then I got the call from Maine and it was scheduled for 11 weeks anyway.

All this to say, I have been COMPLETELY ignored and degraded by every medical 'professional' since this pregnancy started.  I have been violated, bullied, argued with over everything.  Not only was I not getting the CARE I needed, I have actually been WORSE off because of them.

After a few very lonely and sad weeks, I decided I was going to do a couple of things.... first, I am not ever going back to Rochester OB again.  Second, I am going to file a complaint for what "Dr." Macvetti did to me.  I need prayer for how to go about that please - but I do believe it needs to be done.  I can't be the only one she is treating like that.  It needs to stop.  And third, at my appointment today in Maine - which I made sure before I went would be with Dr, Pinette because I trust him - I would lay it all out for him and just prayed God would direct me from there.

I did... and He answered.  And I haven't been able to stop crying all day, I'm just so relieved...

First of all, I went alone.  I never do things like this alone, but I just wanted to be alone.  I wanted to be able to feel whatever I felt - say whatever I needed without an audience.  I've been really sick, so the drive had me nervous - it's a long way....

I got there and I had a tech call me in who I had never seen before.  I asked her name a few times and can't remember it so I need to find out because she was AMAZING.  I was late, but she didn't short me... in fact, since baby E was moving around so much, she just sat there and let me watch... for 8 minutes... It was such a gift.  I fell apart a few minutes in and started blubbering about how complicated and difficult pregnancy is.  Often, even at dr's offices, I get left with silence when I do that, but this woman looked at me and said "You have been through something that most women can't even comprehend... even if they want to... and it's going to impact how you feel even still."

I cried more.

She finished with the scan and we stood there talking for another 10 minutes. She gave me her TIME and her EAR and didn't blow me off or pass me along to the Dr so she could move on to the next.  I went on and on like she was an old friend... and honestly, I've needed that because I'm at a serious shortage of 'friends' right now.  Even people I try to reach out to about where I'm at, either don't have time or don't know what to say and I'm left feeling worse...  I thanked her for listening.  She was a gift from God to me today.

She brought me to a conference room where I waited for Dr. Pinette to come in as I stared at the pictures of my little baby and his/her round head.  I got a text from Matt that he got a start date for the job he's been waiting on.... I looked at my clock 10:27am. ♥   So nervous and excited for this change - it's going to be a major faith walk as it is a big cut in pay to begin with, but it holds much more potential for our future.  He starts on July 13!

Dr. Pinette came in with a huge smile... "Baby's head looks good!" he said. He speaks my language!  We talked about my aneurysm... we talked about my heart issues... we talked about my blood pressure... we talked about how my other kids were doing... how I am doing... how I'm feeling... you know, like actual PRENATAL care!   He said I can go for my third VBAC and that the aneurysm shouldn't be cause for a c-section!   He said that since I've already had 2 VBACS, my risk with another decreases drastically.  He said that it's possible that this baby has reset my blood pressure button and there is a chance it might not go back up (pray for that one, that would be awesome!!)  He asked "Is it safe to assume that we aren't doing any of the genetic stuff, I know you haven't in the past, do you want to just skip that?"  I said yes and he said "OK."  (Now THAT is the right response from a Dr when a patient declines a test!)

Then came the heavy conversation... I told him what Dr Macvetti did to me.  He didn't say anything in response at first, but he did cover his entire face with his hands and peeked out to listen like he was watching a scary movie as I told him the details of what she did... bawling, I explained what happened and how I don't know how I let it happen... but that basically, I feel like every Dr writes me off bc I have opinions and don't just do everything they say like a puppet -  and I was feeling like she was my last resort to be able to deliver in Maine and that if I didn't do what she wanted me to, she was going to make my life a living hell.  How is that for abuse??  He paused and said "As a patient, you have the right to decline anything you want to and that should be respected."  I told him declining things is what makes Dr's not like me and he said "I like you.  I like patients who are involved in their medical care."  He told me when he saw my name he got a big smile on his face.  The tech had told me Dr Pinette remembered me when she was bringing me to the room.  She said "That's pretty impressive with the number of people he sees!" But I guess the same reasons most dr's hate me is what makes me memorable... my little girl with anencephaly and my strong will that God gave me to walk through that and beyond.

And then he told me he will see me for the rest of my pregnancy.  I've never been so thankful to be considered high risk - but I am.  He's willing to let me space appointments out if I don't medically need to be there to avoid the travel so I don't have to go back until my 18 week scan - which, just like Rachel, will be the Wednesday after my birthday.  I told this man about 3 times how thankful I am for how he treats me, for how he takes CARE of me... He said "You have been through a lot and you have handled it very well... you might not feel like you have, but you have... and you will do just fine this time around too."

Thank You Lord for a doctor who has always listened, always taken my cares into account, always had solid medical experience and knowledge mixed with the perfect amount of compassion and belief in me.  Thank You Lord for a doctor who gets me.  Thank You Lord for finally giving me a good doctor's appointment!!

I left there and made small talk in the elevator with a little boy carrying a kids National Geographic Magazine with sharks on it.  Told him they were cool and that my boys love those magazines and he was all smiles.  I walked out of the elevator and before I even got to my truck, I started crying.  I'm guessing the magazine was a nice distraction from losing it on a full elevator!

I got in and sat there for about 30 minutes sobbing.  I cried because I was relieved... relieved that the baby is ok, that I don't have to have a c-section, and that I don't have to go back to the other office.  I cried because I was overwhelmed with thankfulness for finally having a good appointment... for finally feeling heard... for finally feeling supported.  I cried because I was alone and I could and I so needed that.  I stared at the pictures they gave me resting on my lap and as I cried at the perfectly little round head, I said "I love you.... I love you.... I love you.... I love you...." to my baby.  I went to take a picture of the scan to post on facebook that everything went well and ended up with a picture of myself crying instead.

I realized it was way too dark in the parking garage to take a picture of my u/s and so I wiped my face and started to head home.  I turned the radio on and was hoping for a Rachel song...  the song that came on was not one on my Rachel list so I thought "Maybe it will be the next one." and suddenly a few lines in, it hit me like a ton of bricks.... It was a love song to me, from God... the timing was His.  The picture of me, instead of the baby, wasn't an accident.  He was overwhelming me with his love.

The Chorus says:

I love you more than the sun 
And the stars that I taught how to shine 
You are mine and you shine for me too 
I love you 
Yesterday 
And today 
And tomorrow 
I'll say it again and again 
I love you more 
I love you more 



It took me a few minutes, but I heard my words to the baby play back in my head "I love you... I love you... I love you...." as I tried to take a picture of it and getting a picture of myself instead, God whispered to my heart "I love you more."   Hearing the words, like a love song from God, saying "You shine for me too" brought me back to the day of Rachel's diagnosis, when a friend told me I was going to shine for Him through her death.  It was the last thing I wanted.  I didn't want to shine, I wanted things to go 'right'.   Now it's my true heart's desire that no matter what comes my way, I can shine for Him through it.

These words also made me think of a note I have that my mom wrote me when I was a baby that says "I love you yesterday, today, tomorrow.. forever" and I just think of that unmeasurable love of a mother - the love that takes over when all else in the world fails... and how it faints in comparison to God's love for us.

I have left Congress Street in Portland, Maine crying more times than I can recall.  It's been an unbelievably painful 5 years.  Every great once in a while, a mountaintop can steal your breath and bring you to tears similar to that of the deepest valleys.

Today was one of those days.  Today was a day that only because of the valleys God has carried me through did I recognize the miracle happening before me.  Only because of how difficult these past 6 weeks have been did today flood me with so much hope as my unspoken prayers were answered.  Only because of the unimaginable loss I experienced with Rachel do I feel silenced by my unexplainable gift with this little one.  Only because I had so many thoughts bombarding my mind and heart, have I been at a loss for words all day.

The car ride home that I was not looking forward to, knowing I'd be tired and nauseous...??  It went by in the blink of an eye.  Like, I really didn't realize I was almost home until I was about 5 minutes away.

I came home and showed my mom and the kids the ultrasound video... I paused it as my mom left and Des said "Hey, look!  The baby is in a heart!" and the baby's sac was shaped like a heart.  I went to push play and realized it was stopped at 1:43 ♥

I haven't felt very inspired for anything in a long time.... Not in writing, not in photos, not in new ideas for Rachel's Legacy.  But this afternoon, God put an idea on my heart so I made this video.  I think it conveys a little bit of what is on my heart ...  that for as much as I love my children - God loves His more... and I am His.  It's kind of hard to imagine.... but today I have been so completely and beautifully broken by this Truth that I feel like I can finally breathe.  My God is the God who provides... I'm so thankful for His love song. Of course when I looked up the song, it was 4:30 long. ♥
Here is the video I made of my little E:


And the lyrics to the song - "More" by Matthew West

Take a look at the mountain 
Stretching a mile high 
Take a look at the ocean 
Far as your eye can see 
And think of me 

Take a look at the desert 
Do you feel like a grain of sand? 
I am with you wherever 
Where you go is where I am 
And I'm always thinking of you 
Take a look around you 
I'm spelling it out one by one 

I love you more than the sun 
And the stars that I taught how to shine 
You are mine and you shine for me too
I love you 
Yesterday 
And today 
And tomorrow 
I'll say it again and again 
I love you more 

Just a face in the city 
Just a tear on a crowded street 
But you are one in a million 
And you belong to me 
And I want you to know 
I'm not letting go 
Even when you come undone 

I love you more than the sun 
And the stars that I taught how to shine 
You are mine and you shine for me too 
I love you 
Yesterday 
And today 
And tomorrow 
I'll say it again and again 
I love you more 
I love you more 

Shine for me 
Shine for me 
Shine on, shine on 
Shine for me 

I love you more than the sun 
And the stars that I taught how to shine 
You are mine and you shine for me too 
I love you 
Yesterday 
And today 
And tomorrow 
I'll say it again and again 
I love you more

I love you more than the sun 
And the stars that I taught how to shine 
You are mine and you shine for me too
I love you 
Yesterday 
And today 
Through the joy 
And the pain 
I say it again and again 
I love you more 
I love you more

And I see you
And I made you 
And I love you more than you can imagine
More than you can fathom 
I love you more than the sun 
And you shine for me

4 comments:

  1. Have you thought about contacting the ombudsman about Rochester OB? I know in the medical field as far as agencies and facilities the mention of ombudsman is a big to do. The ombudsman may be able to help with your situation. The better business bureau may be another option too. Just a thought. They might not be able to help but maybe point you towards someone that can.
    ~Niki

    ReplyDelete
  2. I'm so happy you're seeing Dr Pinette! He's awesome. I saw him for my first pregnancy as well. I was high risk due to a multiple pregnancy...I was pregnant with twins but lost 1 at 12 weeks. Loved him! And I watched your video on Baby E...167 beats per minute, you knew I was thinking a girl...now I am convinced it's a little sister! Love you! BIG hugs! <3

    ReplyDelete
  3. I'm so sorry you had an experience like that. I'm not there yet, but I'm already worried about finding a new doc when I become pregnant again. I already anticipate the full range of emotions you must feel with every pregnancy now and to have people be so cold and without compassion...I'm just so sorry. But, the bright side as I see it, thankfully you found out sooner than later that they were not the docs for you. I hope you do report them and I hope they learn to have some compassion for future patients. Congrats and many prayers for you during this pregnancy :)

    ReplyDelete

We so appreciate your words of encouragement!
Thank you! ♥ The Aubes