Monday, May 19, 2014

My Faith Will Stand

Been a little few and far between on the blog posts lately.  Mainly because I have been trying to make the most of every day and stay focused on my family.  Micah, Asher, and Sam mean the world to me, and I am making every effort to enjoy the days I get with each of them.  It seems like lately every time I get on Facebook I see a new blog link or a new gofundme site of a child or even an adult dealing with cancer or some life altering ailment.  It is extremely overwhelming and breaks my heart. But more importantly it is a constant reminder that life is so so so very precious and we need to love the time we get with the people who mean the most to us.  I have been squeezing Micah extra tightly lately and making sure my husband knows how much I appreciate him and how truly thankful I am that I get to share life with him.  And of course treasuring every jab and kick Asher gives mommy!  The sweet moments we get as a family are so precious to me and I pray that I will always be able to remember them and cherish them.  I know that my life theme this year is so cherish the time because it can so easily be taken away from us.

I am now 30 weeks pregnant, not sure how that happened, seems like just yesterday I was 20 weeks wondering if I would ever even carry Asher to 30 weeks!  Well, here we are, still going strong!  Thank you God for continue to give us time with sweet Asher, time to cherish him and love him, time for him to be part of our family.  I guess we are kind of in the home stretch right now, which is so terrifying to think about.  I know I am supposed to be excited, but this pregnancy has been so different and I know most do not know what all this is like.  It is hard, really hard to not know what is going to happen.  I so badly want to know how much time we will get with Asher and how this will all play out, but unfortunately I must be patient and wait.

We had an ultrasound this morning, the first one in a little over a month.  Going in to the appointment, I know Asher was alive and well because he is a little ninja boy inside my belly.  However, I was still so anxious and nervous as to what we may find out at the appointment.  Would they see something new?  Overall, the appointment went very well.  Asher mainly looks the same as he has in previous ultrasounds, which is good.  Again, he is not your classic trisomy 13 baby, and we continue to hold on to that glimpse of hope.  It appears that his kidneys are a bit brighter on the screen, whatever that may mean, we do not know, they just appear a little different than typical kidneys.  He was uncooperative today, so we were unable to get a good picture of his heart, but we have an appointment with the cardiologist on Thursday.  There was maybe a little extra fluid in an area of his head, but it was not at an abnormal level, and was nothing that would compromise his life.  It is something that will continue to be monitored in case it gets worse.  All in all, he still looks like a pretty normal little boy in there!  Totally camera shy today and was content curled up in a ball.  His hands and feet were in front of his face and he did not want us to get a picture of his little face this morning at all!!

I had my first taste of those not so nice doctors this morning.  The ones who see these babies as nothing more than terminally ill, and yes she used those exact words when referring to Asher.  It took everything I had to bite my tongue and not say anything to her.  She was extremely insensitive and her words were very hurtful.  We know what we are dealing with, we know the statistics, but we continue to remain hopeful.  This is a real live human we are talking about here, but I got the feeling that we were not on the same page.  Maybe she has never been in my shoes, okay fine, but there was no need to rip the hope out of the room and say well he is going to die for sure.  She is only a doctor, she is not the giver and taker of life.  Okay end rant!  Anyways, I am praying that we can avoid her from here on out because she was anything but understanding and anything but supportive.  She came off as though she did not know anything about trisomy 13, yet she knew our baby wasn't going to live.  Yeah, no thank you lady, I don't want to waste my time with you.  I will stick to doing my own research and continue my motto on surrounding myself with positive people who are going to support us and encourage us on this journey.

Another interesting fact that I have been reading about is how common preeclampsia is when carrying a trisomy 13 baby.  Something with the coding in the long arm of the 13th chromosome that increases your chances.  Preeclampsia is high blood pressure, often leads to bed rest and an early delivery because it can be harmful to both mom and baby.  So another thing that I am now worried about!  Please be praying specifically for this, that it does not happen.  I have a toddler to take care of and he keeps me smiling and busy, I need that right now.  I also know that the longer Asher stays in my belly, the better off he will be.  My blood pressure is something that the midwives will continue to monitor on a monthly basis.  I guess knowing it now helps me to mentally prepare for it in the event that it does happen.

Ended the day with a little retail therapy and few delicious chocolate chip cookies, 2 of my favorite things : )

Every day seems to get a little harder and the weight gets a little heavier, but I am not letting that get to me.  I will not give up.  There is always hope.  The strength I have to get up and face each day certainly is not my own, there is no way I would even attempt to tackle this journey on my own.  Anyone ever listen to the song Oceans by Hillsong?  If you haven't, I highly recommend taking a listen to it.  The words are so powerful.

"Your grace abounds in deepest waters
Your sovereign hand
Will be my guide
Where feet may fail and fear surrounds me
You've never failed and You won't start now"

And that explains why we will continue to keep going and keep fighting the good fight!  Thanks for listening and thank you for the continued prayers in this journey.  I pray that our story touches each of you and changes how you view circumstances and people around you.  We all have so much to be thankful for.  We all are also so broken and fighting our own battles, please know that we are all fighting these battles along side one another.  We are not alone in this thing called life.

And that is a little glimpse into our lives that continue to be shaken to the core.  God is doing something pretty powerful here, don't ask me what, but it is happening!

1 comment:

  1. Oh Erin!! Once again, you uplift my spirits with hope as you are going through your pregnancy!! I feel so badly that you had to experience a "nasty" doctor that evidently has no people skills or empathy with others! She really shouldn't be in the position that she is! She does not control the outcome of your birth, only God does! So keep the faith and cherish every day/moment with your beautiful family! Love to all of you!!