This is an update from my wife, Karah, about the situation with our unborn child. you can read her first post here if you’d like.
It has been 22 days since I last wrote about what all we/I have been going through. I kept telling myself I would write an update, but it has been so much harder than I expected. Every time I sit down the stress and worries of everything just hit me hard and overwhelm me.
21 days ago we got the first set of results from our CVS test. It was the day after the testing and the results were from the Fluorescence In Situ Hybridisation (FISH test). These were not our final results, but there was not much room for error. The results confirmed Monosomy X, also known as Turner Syndrome (TS). This was probably the hardest day throughout this entire process. I could visibly see what hope I had crumbling in front of me, I doubted God even cared about this situation. I was harsh to those around me and inconsolable. I didn’t want to hear positivity, I didn’t want to hear how much hope everyone else had. Everything I had hoped for, everything I had begged God for… I felt ignored and abandoned because my prayers and pleas to God were not answered; my fears and worries were confirmed.
At times when I finally stopped willingly let my emotions get the best of me, my body still chose to force tears to stream down my face. Just saying I am going to pull it together and carry on has been one of my biggest struggles. When your heart is constantly so heavy it is so incredibly hard to not let horrible thoughts creep in and consume your mind, this is where I find myself on a daily basis. Where do I go from here? How do I plan for our beautiful baby girl when the odds are so against us?
I have had so many ultrasounds and doctors appointments I have lost count, at times the doctor’s names and faces are a blur.
I constantly find myself asking What is our future? God, what is your plan? What do you have in store for our family? I just want to hold my baby, love on her, watch her grow, play and learn. I feel so useless in this process, helpless and frequently discouraged. When I look in the mirror I see disappointment and doubt. I would be lying if I said throughout this entire journey or experience or whatever we should be calling it that I have completely devoted and placed my trust in Him. Have I been able to come back from those doubts, of course, but there is no denying that there have been doubts.
The weekend after the test and getting the FISH results was so incredibly difficult, my body was struggling and I was in so much pain emotionally and physically. I had two days where I knew it was the end, I knew it was goodbye, BUT by the grace of God our little warrior kept fighting. That weekend I had decided that I needed to change. I needed to fight. I needed to give my daughter the fighting chance that she deserved. I needed to fight just as hard as she was. Three horrible days of pain struggle and doubt had restored my faith and my trust in God. It was a much needed restoration. It is so hard for me to look back at those days because they truly scared me. In a moment when I should have turned directly to the Lord I crumbled and let my emotions get the best of me.
We decided that we needed to tell our two daughters (Jovi, 4, and Jaspyn, 2) that their sister was sick just so we could prepare them as much as possible. I watched my sweet Jovi’s face turn from happy to heartbroken in an instant, that was so incredibly hard, and I just wanted to grab her up and hold her close to me. She has such a beautiful heart at such a young age. After getting through the initial shock her response was I want to pray for our baby. She prayed and asked God to help our sick baby and the sweet simple prayer brought tears to my eyes. I have really enjoyed getting to see how much love they have for this sweet girl that they haven’t even met yet. This is so awesome and hard to see at the same time, I just can not imagine having to break even more difficult news to them in the future, and I am begging God that I don’t have to.
I will continue to be honest with myself and I am determined to force myself to be optimistic and hopeful. My God is a God of miracles, He is capable and can do anything He desires, and I know He knows what is best for the future of our sweet baby.
I have had days of struggle and over things that most think are so trivial, like finding the perfect baby bedding and not being able to purchase it because I let my worries and doubts consume me. I can not say my heart is not broken, I can not say the rest of this journey is going to be easy, in fact the future is just as scary as the days I have struggled that are already behind me.
We are still in need of prayer. And though at times I may fight it, I need positivity. Everyones questions are still hard and I don’t imagine they will get any easier.
The latest update we have for our little one was that her heart rate was faster than what doctors would like to see, but we are just grateful that we get to hear her sweet heart fighting. At our last ultrasound (day of the CVS test) her fluid levels had risen from 11mm to 17mm. It was discouraging to see that he levels had risen but we are confident that God can completely remove the fluid and that will be prayerfully one less battle she has to face. Our next ultrasound is May 16th, I will be 16 weeks and 4 days.
The next two weeks will bring a lot of fear. A lot of TS related miscarriages have happened at close to 16 weeks gestations, so that puts us at risk for the next two weeks. I am 15 weeks and 1 day today, but at each appointment I have measured a week ahead (based on baby size) so I will be measuring 16 weeks and 1 day. Once we get past the 16 week worries our next big milestone to overcome will be 19 and 20 weeks gestations.
I have been blessed that in the last few days I have been able to feel our sweet girl move. These new experiences feed my hope. They have allowed me to maintain my optimism and enjoy the time I have had and will continue to have with her. I am thanking God for each and every little milestone, as I know I should because He is in control and He has this in His hands.
Tonight with our families we will be celebrating our sweet girl and the time the Lord has given us with her in my womb. I am begging God on a daily basis for peace, strength, and that her fluid levels decrease – the fewer battles she has to fight the better.
My husband’s parents have set up a GoFundMe for us, which has been a blessing in offsetting some of our additional medical costs. https://www.gofundme.com/babysouza