{December 2 2016- 26 weeks pregnant}

The day had FINALLY come. Arriving at Primary Children’s was so nerve racking. All I kept thinking was they are wrong, there is nothing wrong with my sweet baby. She is perfect.

We finally found where we were suppose to go. So we checked in, filled out I think like 6 pages of paperwork and waited patiently for my name to be called. Finally, after what seemed like forever they called my name “Tasia Duncan” (honestly I was surprised they even said it right because nobody ever can haha.) They led me to where my exam was going to be. First door on the left. I climbed up on the chair and lifted up my shirt.

We met the two techs that were going to be examining the baby (don’t even ask me their names, Im terrible with names. I just know the one was a cardio fellow.) They began checking out baby, taking picture after picture for TWO FLIPPING HOURS. TWO HOURS I sat on my butt barely moving. I have sciatic nerve pain while pregnant so my butt was throbbing. Lets not forget that there was NO small talk. Literally two hours of silence looking at the exact same thing. We didn’t even get pictures or anything. And if you know my husband he has like ADD so sitting still and not talking for two hours was basically torture for him hahaha

At last, the cardiologist that was on my case walked in and asked how we were doing, and introduced himself. He had been looking at the images in the back because he looked for a slight second and said, ” We are definitely seeing heart disease here, but let me see some more then we’ll go into the other room and I’ll explain it all in further detail.”

My heart fell to the pit of my stomach. Like did you seriously just say heart disease? Not only that you want me to wait even longer for you to tell me what the heck is happening? Tears started falling down my face. NOBODY and I mean NOBODY wants to hear that their baby is less than perfect.

After the echo was done they walked me to another room and in came my doctor and like 6 other ladies, social worker, cardio nurse and bunch of people I didn’t even know.

The doctor finally began. So, what we are seeing here is called Pulmonary Atresia. He pulled out a bunch of pictures and diagrams to explain exactly what her heart was doing. Her pulmonary valve is closed  and isn’t getting and blood through so basically blood is flowing backwards causing her ventricles to be bigger from holding all that extra blood. But whats called a Patent Ductus Arterioses  is only open in utero and that is where the blood is flowing to get to the lungs but once she is born that duct will start to close.

He said he can keep the patent duct open after birth by putting in medicine through her belly button where the umbilical cord is for a few days after birth then he wanted to “cath” her (I hope thats the word) and go up through the leg and basically do what they call a “balloon” and open up her pulmonary valve and see how the blood flow is.

After they do that they would monitor her and see if she can keep her oxygen levels up and survive without any help. BUT if she cant they would end up doing surgery and put a shunt in her heart to help with the blood flow and make sure the lungs are getting enough oxygen.

{So much information to take in.} Then, she would come back in 3-5 years to get her valve replaced then after that it would be about 10 years. So she basically will be having heart surgery her whole life. Not something you want to ever have to prepare for but you do what ever you can for your babies.

Even though it basically sucks to hear all this the doctor was very positive about the whole thing. He said he has done this surgery hundreds of times and it was a mild case compared to other ones he has seen so he was very optimistic.

The cardio nurse gathered a bunch of information for us and put it in a folder for us to take home and go over. She snuck in a poem called “Welcome to Holland” in the folder and when I read it I couldn’t help but cry. It was perfect. Everything was spot on. So, I thought I’d share it with you.

 

“When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.”

by
Emily Perl Kingsley.

That hit home so perfectly for me. I hung it on the fridge and said I was going to get copies made to hang in the nursery. Just to remind myself, although I am going to have all these struggles and life may not always be easy it could always be worse.

The cardiologist recommended we do the genetic testing on the baby because he was pretty certain it was genetics that caused all this. Typically you do genetic testing in the first trimester but whatever it said it wouldn’t make a difference anyways would it?

So thats what we did. We set up an appointment in Provo at the hospital with the Maternal Fetal Medicine Specialist (we could have gone to Salt Lake but honestly I don’t want to drive that far if I don’t have to.)

While we were still there at Primary Children’s we talked to the Cardio nurse and social worker about delivering up there and where we would stay and what to expect. Basically, as soon as she was born I would be able to look at her then they would take her to the CICU (cardio intensive care unit) and get that medicine put in her and most likely intubate her. Unlike the NICU this CICU only had babies in it that had cardio problems.

It all came down to if the blood would flow through the pulmonary valve and she can keep her oxygen levels up we would only need to stay probably two weeks. If she has to have surgery it’d probably be five weeks at the hospital.  Totally sucks but I had a NICU baby before and had to stay four weeks so I can do it again.

He said, “See you back here in 6 weeks and we will do another exam and hope the heart stays the same otherwise it might change the whole ball game.”

To be continued…..