Maternal Fetal Medicine Specialist time!

December 20, 2016 – 28 weeks

Two weeks had come and gone since we spoke to the cardiologist up at Primary Children’s. It was our first appointment with the specialist here in Provo Utah. I was a little hesitant and nervous to see them. With my first pregnancy I got Preeclampsia, which meant I had high blood pressure so I was scared from the traveling and nervousness that it would be high again.

To my surprise when they called me back and I sat down for my blood pressure reading it was in normal limits! Man was I so relieved!

We walked back to the room where we would meet the doctor and check out our sweet babe. I have honestly lost count at how many ultrasounds I have had thus far into my pregnancy.

I absolutely LOVED this nurse that was doing our ultrasound. She was so sweet and explained everything she was doing. “We are looking at the kidneys now, they look great. Now, lets check out her belly.. its looking good. Her spine looks good. Lets measure her head.. that looks great! We will just quickly glance at her heart, as I know  you already seen the cardiologist but just so we have some  pictures.” “Here’s her face, it looks perfect. There’s her little lips, can you see them?”

Everything just seemed to be going so perfectly. She did some 3D pictures for us. Those are totally my fave! I love guessing who the baby will look like when she comes out. I was so sure Hayven would look like me.. NOPE. Spitting imagine of her daddy. Which is totally fine because she’s pretty cute 😉

The doctor came in to talk to us and took a little glimpse of the baby before she began.

She was so sweet. Just like the nurse, she went into great detail about everything that was going on. I don’t think I’ve ever met a doctor that really just put so much time into their patients and just made sure we understood everything.

We talked about what we happen if I were to deliver early, like if my preeclampsia came back or if I went into labor. I haven’t had a “healthy” (I don’t know is that a good word to use?) pregnancy to say that my body can make it full term with a baby so we just never knew what would happen. But we certainly needed to be prepared for anything.

If I were to go into labor they would have a helicopter right there at my hospital here in town to get me to Salt Lake as soon as they could. As I have opted for another c-section because of the risks of my uterus rupturing from a vaginal birth. Which could cause baby to die, I could bleed out and die or baby could lose lack of oxygen to brain and could cause a lot of brain damage. It is a very low risk but because of the babies heart problems and not knowing how fast I would dilate I didn’t want to put anymore stress on her.

We really just had everything planned which was really reassuring. But because of my blood pressure last pregnancy she wanted me to get checked weekly here at my regular OBs to make sure it doesn’t start creeping up and if it did they would admit me to the hospital for observation.

Then she recommended genetic testing. One where they can take my  blood or an amniocentesis (where they stick a needle in my stomach and get fluid from around the baby.) Of course I immediately opted for the first choice, take my blood. I’d rather not have a needle that close to my baby and it is a risky procedure. Even though the amniocentesis is 100% accurate I would rather do the blood and see what it says then go from there.

So, thats what we did. After my appointment they gave me some blood tubes (is that what they are even called? Literally don’t know. hahaha) to take over to the blood suckers that were clear outside in another building, so I wobbled in the freezing cold clear across the parking lot to the out patient center and got myself checked in and waited for my number to be called.

This is a newer blood test that had just came out and it has a lot more accurate reading then the other blood testing available. Well, it better be accurate we just paid $350 for it!!

Finally, it was my turn so we walked to the back where there was 4 chairs set up with people sitting in all of them except one. So I just sat down, took my jacket off and closed my eyes. (HATE needles.) I swear those tubes of blood were bigger than a regular size tube so it took longer to fill up and there was two to fill. After all was said and done they gave me a little card with their number on it incase I had any questions.

I think it was a week later the genetic counselor in Murray, Utah finally called me about my results.

I was in the shower but I heard my phone ringing so I yelled for Riley to come and answer it  incase it was them, as I have been waiting for this call. She asked for me so I jumped out, wiped off my ear and said, “This is Tasia.”

She replied, “Hi Tasia, this is Lauren from Genetics counseling, I have your results from your test and was wondering if now would be a good time to hear those?” “Absolutely!!”

“Well first of all, these results were a little surprise as we were not anticipating this at all.” “Ummm, your results show that your baby has a high chance of Trisomy 18.”

Thats all I heard. She kept talking but literally all I heard was Trisomy 18 and I blocked everything out and completely broke down. I honestly don’t even remember anything she said after that except that she would recommend doing an amniocentesis to diagnose it, as amniocentesis is a diagnosis compared to a blood test that just tells us what it could possibly be.

She said there is chance of miscarriage but it is slim.

All I said was, “can I talk to my husband about this and call you back? I can’t even talk right now.” She said, “Yes, absolutely talk to him and give me a call back, I will text you from my cell phone so you have my number and send you my desk number.”

I hung up the phone and dropped to my knees and lost it completely. All I really knew was that Trisomy 18 babies don’t usually make it long after birth. And for some odd reason both my nostrils started bleeding pretty heavily. At that point I didn’t even care that I had blood all over myself and the floor. I couldn’t even think straight. Was this a joke? What the hell is happening right now? Why would god do this to me? How does someone lose a baby? This is not real. All of this was going through my mind as I sat there in a towel drenched in blood and a face covered in tears.

After twenty or so minutes and my nose stopped bleeding I called my mom to tell her the results and to ask her what I should do. Should I take the amnio test and risk the miscarriage or not worry about it and not get a direct diagnosis? I call my mom for everything. She’s my best friend, and I don’t know what I would do without her.

I called her and she immediately could tell something was wrong. “Well I got my test back.” “And, what did it say?” “My baby has Trisomy 18” “What does that mean? What do we do now?” “It basically means my baby is gonna die soon after she’s born” “No it doesn’t, are you kidding me?”

I told my mom about the amniocentesis test. “I just need you to tell me what to do. I don’t know what to do mom.” Me and Riley really didn’t want to do it but I really wanted a definite answer. Why am I put in this situation where I have to choose in the first place?

I then called Rileys mom to tell her the news and ask her what I should do. She’s a nurse, maybe she can shed some light on this and help me make a decision because right now I’m at a complete loss.

She told me, “If you got it done, what would the results mean? You wouldn’t do anything about it anyway would you?” I’m almost 30 week pregnant at this point so really there was nothing I would do. Even if I found out at 10 weeks I still probably wouldn’t do anything.

So, I called Lauren back to tell her our decision. I asked her, “What would be the point of this test? What would it change?” She really did help me make a decision. She said, “I know you made plans with the cardiologists up north already, but if this test comes back that she has Trisomy then you probably don’t want the cardiologists to take her after birth so you guys can spend time with her. And if you don’t take the test you won’t know for sure so they could take her and you wouldn’t be able to see her if she passes.”
“I didn’t realize that you were already 29 weeks so the risk of miscarriage or any complications is very minimal.”

Right then I knew what my decision was. I was going to get this test done because I NEEDED to know what to do after she is born. Obviously if she has it I will not go through with the surgery after birth as me, Riley and Hayven will spend as much of our time with her as possible when she is born.

Lauren set up the first available appointment In Provo with the specialist to do the Amnio. January 4th 2017.

 

 

 

4 thoughts on “Maternal Fetal Medicine Specialist time!

  1. Omgosh You really are a strong, loving and special person to have this trail or blessing put in your life. Only God knows who are the chosen ones. I cannot imagine what you’ve been through. I cannot imagine how your husband is handling this. All I know is that I am so emotional from your words and hope that this will help you and others. Thank you so much for letting me in your personal life and im always thinking and praying for u and your family. Love Crystal

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  2. I am so sorry Tasia I can’t even imagine how you are feeling. I admire you so much you and Riley are so strong we will be praying for you guys. Thanks for sharing your experience

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  3. Tasia, thank you for sharing your experiences and the heartache of the decisions you are faced with. We pray for you and Riley every day, Jason never forgets. We love you guys and we know this will be a bitter sweet birth. Just know that your baby girl will be in the arms of the angels when she leaves yours.

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  4. My dearest Tasia. I have had the joy and blessings for being part of your family. I also thank the Lord above for your mom. She has been the friend, sister, advisor, listener and coworker I have always needed. I am so thankful you have Riley, your mom and family. I know and understand your anticipation, fear, excitement and the feeling of total loneliness in your pregnancy journey. I to have lost a child and my heart breaks for you. You have my prayers, but if you need ANYTHING please call me. You are such an amazing young woman. Love you so!! The Lord above only let’s amazing angels have the blessing of having such a journey, angels such as your family! This really is a mushy message, but if I could cry your tears and take your pain away I would. Just know I’m here if needed.

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