Thursday, April 13, 2017

Our journey...

This post will be kinda long, so go ahead and grab a cup of tea.

I always get so excited when it's time for the anatomical ultrasound during pregnancy. I love love love seeing all the beautiful parts of the baby. There is something so magical about watching the four chambers of your baby's heart work together in perfect harmony to support the tiny miracle inside your body. The legs and arms, and yay we get to see their face before the big day. It's a beautiful bonding experience with the baby before we get to meet. 

There is of course the ease of anticipation which I feel when I find out the sex of the baby (I am my mother's daughter, we've never been those whom have the patience to wait for surprises). Sooo... this time was no different. So excited!! I invited my mom to come to the ultrasound so we could find out the sex of the baby together. This was her first ultrasound ever! We just love this stuff...see, this baby is the tie-breaker between the two boys and two girls; so you can see how important this is :)
I'm 19 weeks pregnant (almost five months). Some of you know how rough this pregnancy has been with the sickness and exhaustion. That has always been an indicator for me that it's a boy. Those boys always make me sick 😆 (shhh don't tell my kiddos yet, but it is indeed a boy). 

Just this past Monday was my ultrasound. My mom and I were just floored by the images. How cool to see all the baby parts. My heart and my love for science were just fluttering!! My mom kept identifying things that I could not even recognize. She was a natural. The ultrasound tech wasn't super talkative, but we both made up for her lack of words. 

The giddiness and good-natured banter between my mom and I came to abrupt halt when the ultrasound tech got up in a scurry, and in a very serious and nervous tone, told us she had to leave to speak with the doctor. She left a very stiff chill in the air of that room. We were both confused and worried. When she came back she hurried us off to a different examination room and told us the doctor would be with us shortly. 

At this point we couldn't help but know something was wrong. All I could think was that they found an indicator that my baby had down-syndrome or some kind of developmental delay. I thought that thinking this way would prepare me for the worst. We had a few words on how disappointed we were in the professionalism or lack there of from the ultrasound tech. I was about to be angry if she worried me over nothing. 

Finally a knock at the door, in comes the doctor. I was familiar with this doctor, I saw him a few times when I was pregnant with Jude. 
He started off the conversation as cordial as one could in his situation. A few ordinary doctor-to-patient questions: How are things? How do you feel? In the back of mind I was screaming "Just let it out, what is wrong with my baby??"

Then, words that still ring like bells of darkness in my mind, came out of his mouth. He explained that they had found something on the ultrasound that was serious. The baby had a beautiful and perfectly beating heart, hands, feet, abdomen...well absolutely perfectly formed everything, except the brain. The brain never formed. 

I am completely heartbroken. I came home and feverishly Googled every possible thing I could about this. I wanted to find out where I went wrong. If I could just know what I did to cause this. Unfortunately (or maybe fortunately) there is no explanation why this happens.   

Where we're at:

Of course we had to get a confirmation, that is what we received today with a specialist. 
We are at a place where we are fighting for our baby's life. That is our focus. We are faithful. We are not sure why God has us on this painful and difficult path, but we are still as faithful as ever. We know that this experience will grow our faith even more, and make our family closer than ever. We know that our baby has many odds against him. We know that he has no expected survival. We know that contrary to the way our children plan for all the things he will do, and all the things they will teach him, he'll be limited by his time here on earth with us. There are many limitations put on him through the experiences had by other families whom have dealt with this; through science and research. We are listening, but we are not limiting him at all. We are supporting and fighting for him. We are praying for a miracle. We are completely heartbroken and confused. We are still in shock and are at peace. We are ok for some moments of the day, and other moments we completely lose it. 
The pregnancy will be fairly normal in terms of the way I will feel physically. There are are no additional risks for me other than the normal pregnancy risks for anyone. 
The children are aware of the situation, but don't understand the limitations put on the baby due to the survival expectations. That's ok because we're learning a thing or two from them. 

I mostly don't know what to say. I'm still learning to be "normal" in public. So many people ask how I am feeling because I've had it pretty rough with sickness. I don't know how I should answer that question.  I will never be the same again, and I'm learning what that looks like. It's still so early, we just literally got his diagnosis confirmed today. There is a wide-opened wound in my heart and I feel so vulnerable when I'm out. I don't want to return to work, I don't want to leave the house, or return to anything we usually do; however I know that's not the way to deal with this. It's just the way I feel.

I have gotten so many prayers and inquiries and support. I thank you. It is hard to answer everyone's questions and messages, but I'm trying. I am so grateful to all of you. I wanted to write this post so I could explain to everyone what we're going through. It will not be easy, It has been literally the most raw, and excruciating pain I've ever experienced yet in my life. I'm not sure what the next steps are in coping with a situation like this, but I know that we will make it through. Somehow, someway. 
God is good all the time. 

We are asking for your good thoughts, prayers, and support. God bless all of you and yours. 

~A















3 comments:

  1. "When thou passes through the waters, I will be with thee; and through the rivers, they shall not overflow thee: For I am the Lord thy God." Isaiah 43

    Love you so much Angela. I am praying and thinking of you all a lot especially your little boy. Please let me know if there is anything I can do - I can be around to not talk about it or I can be around to listen. You're strength is amazing. <3

    ~Dara

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  2. Oh Angela, I'm so very sorry and heartbroken for you and your family. Words cannot express the pain you must be experiencing. I wish I were near you to be a shoulder when necessary. I am carrying you and your precious family in prayer to our Heavenly Father. I too, will be praying in earnest, for a miracle. If you need to talk, please call me 717-572-7265. I am grateful to have you as a friend and we will shoulder your pain with you. Love, prayers and hugs to you my friend. MaryAnn Frist

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  3. Oh Angela. Tears. Thank you for your baring of your heart, soul and pain. I am sorry for a heart pain that I cannot even imagine, inside all of you. We will pray for you and the children (born and unborn) and your doctor's understanding ... we will just pray without ceasing. At times like this my cross seems. so. very. small.

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