{the will to fight. come on baby!}

January 27,2017

Our appointment was at 7:45 am in Salt Lake at primary children’s… We live nearly 2.5-3 hours away. That was a LONG day. Our day started at 4 am just getting ready and to try and head out about 5 just to make sure we are there on time. We are usually early for everything… we showed up about 30 minutes early. Totally fine.

We got checked in and I think we only waited 10-15 minutes till they called my name. Led me back to the exam room “first door on the left” just like last time.

We got started right away. It was a different girl this time that was doing the echo on the babies heart.

Right away my husband started making “small talk” and basically doing and saying everything to embarrass me. Like five minutes after I sat down he asked me, “Do you need to pee Tasia?” “No, Riley I just barely went before we walked into the room. Now be quiet.” “Does your butt hurt yet?” (if you read my last cardiologist post you would understand why he asked me this) “No, Riley I just barely sat down. I’m fine. Now shhhh” “Don’t tell me to be quiet. I know you, you will just suffer through it if you’re hurting.” “OKAY I just sat down so shut up now!” He said this in front of the tech so it was awkward. Like can you just be quiet ill pee when I need to pee.

Anyways, she found the babies heart instantly and examined every single angle for probably 30 minutes. I’m no cardiologist but I have seen my babies heart before and it looked different to me. Something had changed and I was so scared it got worse. I have learned a lot about my babies heart and I knew it changed. Riley even said something looked different.

The tech went and got the cardiologist to see if they had enough pictures and he came in and introduced himself. It was a different guy, but he worked on the same team as my other doctor so that was nice to kind of have the same guy rather than someone completely different.

He then just sat down and took a few more photos and was whispering stuff to the tech and I was waiting for him to say anything in “English” that I would understand. He then looked at me and said, “Sorry i’ll explain everything in just a minute in the other room.” He obviously knew I was trying to understand his cardiac talk.

We got done, I wiped the goop off my stomach and the pound of it that went into my belly button. 😉 We got up and walked across the hall to talk about what he saw this time. He had the cardiac nurse and social worker in there waiting for us.

It really is kind of nerve racking when there is a ton of people sitting in the room with you just waiting for the doctor. Like WHY do you all need to be here?

The doctor came in and sat down and apologized for our circumstances and even though we’ve probably heard the worst of it he had some better news than we are probably expecting.

WAIT. You have good news?!?!?!

“The last time you guys came here, what 6 weeks ago? Dr. so and so told you the pulmonary valve was shut and wasn’t getting any blood flow and that it would most likely stay the same or get worse.” “Well today we are actually seeing blood flow through that valve. Its not a lot but it is there.” “We would normally call this pulmonary atresia but because of her Trisomy diagnosis we call it ….. (I don’t even know what he called it) it is very common in Trisomy babies to have valves in their heart that just don’t grow or develop like they should and thats what she has here.”

Are you shitting me right now?!?!? They valve that wasn’t suppose to open, opened? What the hell. Now if this isn’t one of gods miracles I don’t know what is.

I remember watching a story of a little boy born with Trisomy and they told the parents he would need heart surgery but after six months his heart healed. And I remember thinking, there is NO WAY, based on the my baby girls heart that anything would “heal” or “get better” without surgery right away. That, that little boy was truly one in a million.

The doctor continued, “So if she is born alive and breathing, it will not be her heart that kills her. It will be something else.” So as far as we know her heart is her only problem so obviously this was fantastic news!

He went on, “Trisomy babies make the decision when they are born if they want to live or not. Some babies have the will to fight and some don’t. Some will come out breathing and wanting to fight and others will give up shortly after birth.”

I just told myself my baby is a fighter. She has been since day 1. She has such a big family, and soooo many people that love her I just hope she will fight.

The only concern is as soon as the patent duct closes (refer back to my first cardiac post if you don’t know what I’m talking about) usually within the first week of life if that blood flow through her pulmonary valve will be enough to get to her lungs and keep her oxygen up.

The plan is (as of now anyway) as soon as the baby is born I get to hold her!!! Oh my gosh!!! For a few hours then I want an echo if all is going good to see how the heart is doing and what is happening. But, only if she is doing good and breathing good on her own.

He even said if everything is good and that blood flow is enough I MIGHT can take her home in a week!!! AAAHHHHHHH!!! The excitement of that is UNREAL.

He said then in a few months you guys can consider doing surgery when she gets a little bigger to open up that valve more to help with more blood flow. We can also opt to have surgery when she is born. (I REALLLYYYYY want to avoid that if possible.)

I MIGHT be able to take my baby home? I MIGHT have her live for a few months, years?!? I know she wont live a whole life and she will eventually pass but the thought of being able to love her a little longer is comforting.

We obviously have been planning for the worst so I definitely do not want to get my hopes up but any slightly good news at this point is AMAZING.

When the doctor first came in he was going on and on about other trisomy babies and then he’d go back to our baby then get side tracked and talk about something else so I was REALLY confused. I was so lucky Riley was there or I probably wouldn’t have understood any of what he was saying. Haha!

I am going to meet with this group called “The angel watch” that helps us plan for what is about to happen and they help us come up with a birth plan with a million different scenarios so the doctors and nurses on our team know what we expect (even if it changes after she’s here.)

Also, in two weeks I’m going back up to Provo to meet with the Neonatologist and set a date for my c-section!!! Oh my gosh! I cant even believe I’m this close! We will also meet the doctors/staff that will be working on my case and set up the birth plan.

At my next appointment that afternoon in Provo with the specialist they did find a tiny trace of protein in my urine. Nothing worrisome but I really hope it doesn’t get worse.

We did another ultrasound, this time on the whole baby. I love seeing her sweet face. I just can’t wait to kiss her face.

She was only measuring about 3 pounds 13 ounces. So she is definitely still little so I really need to keep her put for at least 3 more weeks. If I can make it to 38 weeks {in just 4 weeks} I will be so happy!

We talked to our doctor and decided it is best to have the baby in provo and if we choose to do the “cath” to open up her valve when she’s born they will wait till I’m released to send her to Primary Children’s so I can be with her all the time.

Besides, I had my first baby in Provo and had a wonderful experience so I definitely choose Provo.

God is so real. This is truly a miracle. The power of prayer is so strong. My baby girl is sooo loved. She has so many people that want to fight for her and are praying for her. I know that no matter what happens we eventually find the strength to get through it. Until then, I will enjoy all her tiny kicks, her hiccups, and bladder punches.

I love you so, little one.





Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s