Friday, August 5, 2011

Follow up

Today we had our follow up appointment with the maternal fetal medicine specialist.  Well, I guess it was really yesterday now.  They did another ultrasound with special attention to Evangaline's heart.  The doctor said that her heart condition most likely won't be her true limiting factor which maybe means to me that we can eek out a little more time with our precious little gift from God.  She looked perfect to me and although they said she still had the same conditions, I swear they looked smaller.  We were left last time knowing that she had a hole in her heart with a possibility of a worse defect that couldn't be ruled out at that time.   I usually really dig the medical aspect of things and would try to remember exactly what things are called (either VSD or ASD), but in this case I find myself looking back at the blur of an appointment and not really caring to remember exactly what it is..  the take home message for me was that she had a hole in her heart.  I remember having the impression last time that it may not be that bad.  Apparently it's not all that uncommon and many times the child can live just fine with this condition or it may heal itself in time.  After all the bad news from our 20 week ultrasound and even getting the amnio taken that day, I still left with hope that our baby may not have Trisomy 18 and that she could still lead a long and normal life.  In my heart I wanted to believe that the hole could close and the choroid plexus cysts (little fluid pockets in the head) would disappear.  After all, not many people know this but at Scarlett's 20 week ultrasound, they also found the choroid plexus cysts in her head which was the first time I had ever heard of Trisomy 18 as they gave me a very faint (but very real to an expectant mommy) warning that CPC's were sometimes linked to this chromosomal defect.  But my Scarlett is a very healthy and happy little girl, dare I call her a toddler now?!  After getting the lab results days after the amnio was taken, my hopes were dashed and thus my grieving truly began.   At first when I found out, I was devastated- naturally.  I remember my thoughts waving from pure sadness to anger to feeling ashamed for some reason.  I wished I could hide my pregnancy so no body would know and no body would cheerfully and unknowingly ask me when I was due, what I was having or how I felt.  We never considered terminating the pregnancy but  I truly realized the magnitude of our decision and the weight I was bearing to carry this baby to term.  I still wouldn't take it back for my own convenience or feelings..  I do believe that God has given, and God will take away and who am I to mess with His plan?  It is so much greater than my own.  Fortunately, these feelings only lasted a few days.  3 days after the lab results, we were off to the comfort of my parents ranch which had been planned for months.  What a blessing to have family surrounding me and supporting me so quickly after that kind of blow.  After my initial feelings subsided, I felt incredibly humbled like I never have before.  Nobody ever expects that something like this is going to happen to them, but not only did I not expect it but I pretty much just thought it wasn't possible.  After all, I have a degree in a fitness field, with a special interest in nutrition.  I have a gym membership that I actually use!  I have by-the-book pregnancies.  (can you hear the pride in those last statements?)  So this has definitely brought me back to reality and very much humbled my pride monster--  and I certainly realize that there are some medical conditions that can happen to anyone...  including me.  I've been doing a bible study that I had from a couple years ago that I started and fizzled out on because of the depth of the study.  It's called "One in a Million" by Pricilla Shirer.  When our women's group at church was doing this study, I was pregnant with Scarlett and John was in que to leave for the desert.  In one of the first chapters, she talked about Job and how he was an upright man, blameless in front of God and how God allowed satan to "test" Job by taking away all that he had and it asked us if we'd still praise God if everything were stripped from us, like Job.  I was so distraught about this concept that I really throttled back on my assignments and weekly readings and basically just showed up to the Tuesday morning studies to fellowship.  Picking this study up where I left it has been such a blessing and I am working through it this time with a whole new perspective.  I also just heard in the last couple of days a sermon from a woman who has already been through this exact thing, getting a diagnosis that her unborn baby has Trisomy 18.  She talked about grieving and how healing comes when your heart catches up with your head knowledge.  I find that to be so true.  I know that God has a plan and that His plan is perfect and to benefit and yada yada...  But I have flashes where my heart is in line with my head and that brings me true peace.  I'm not always there and I am sure my struggles will become much worse when/if Evangaline is born alive and I have to deal with her death.  But there is a silver lining which I have only seen glimpses of and wow is it beautiful.  I feel like I am in a good place right now.  I am praising God and celebrating each kick that I feel and each day that I know that she's still alive in there.  I have been able to be genuinely joyful for other people's expectant news, which surely doesn't come from me but from God.  The support and love I've felt from all of you has really blessed me- Thank you for that.  John and I have started praying together every night... something I think we've always wanted to establish but because of daily life busyness, that and laziness it's never happened.  I am so thankful for my husband, John.  He has been a true rock to me the way he's been supportive and empathetic.  I know he is mourning too but he feels that it's important for him to be strong for me, and he is.  He quickly and selflessly booked me and the kids a trip to Phoenix so that I can even more be surrounded by family and loved ones with our Lifegroup there.  They are our family.  Evangaline will get to go on quite a few trips before her birth and we will enjoy her presence nonetheless.  I desire to be as transparent as possible in this journey so if you have any questions, please just ask and I will do my best to answer.

Music has always spoken to me but during this time I find it is really ministering to me as well.
I've tried to include the playlist on this page that is facilitating in healing. I think it is a little music strip attached to the very bottom of the page and you can press play if you would like to hear it.
{I took the player off since I don't know if that's contributing to the problems some have had with opening the blog so I'll just list my short little playlist and I encourage you to look up the songs- they're beautiful!}

-Blessings, Laura Story
-Jesus Bring the Rain, Mercy Me
-Beauty from Pain, Superchick
-I Still Believe, Jeremy Camp
-Praise You in the Storm, Casting Crowns



Monica said...

Your strength and outlook amazes me. I have been praying for you. I was very nervous about my 20 week ultrasound which happened 2 days after I read your blog about Evangaline. It was just a very real reminder that nothing is for sure and nothing should be taken for granted. I will continue to pray for all of you.

penny michaud said...

Cheyenne, reading your words stirs every emotion I had with Peyton. Peyton had a a tiny whole in heart as well (VSD) and cps. Neither were crucial to her survival. I anticipate the same will be true for Evangaline. Which to me is a blessing as I hope this will give you and your family more precious time with her. Also, there are so many babies that live YEARS with full T18. You will be amazed!!! I can't wait to talk to you. We are in a group of special mommies. God chose us for a reason. One I'm not sure I will know until I'm home with Him. thinking of you,xoxoxo

Kat said...

I am just now getting caught up with your life, and as so many others have already done, I just wanted to throw my praying hat into the ring. Your clarity and strength of heart are beautiful and inspiring. God bless you and your gorgeous family.

Alana Whitener said...

Cheyenne, we are praying for you and your family. Your strength and faith are going to have a huge impact, especially in the military world. I heard a song on the radio the other day that I think you should look up...It's Strong Matthew West. Sending hugs and prayers! Love--Alana Whitener

Bonnie Wood said...

Cheyenne, I heard about the situation with your family today through a mutual friend. I read your blog as soon as I could. I wanted you to know that I am praying for you. I am so sorry about the difficulty you are experiencing right now. I lost a baby in between Grace and Samuel when Josh was in Iraq. I remember the Lord just carrying me through that time because I did not have the strength to do anything myself. I am encouraged and blessed by your words and strength. I pray the Lord continues to comfort you and work in the life of your family. Please let us know if there is anything we can do. We are at ACSC now in Alabama and we are coming to Eglin next summer after this assignment. With love, Bonnie Wood