Wednesday, September 23, 2015

First and foremost this is hard. Putting into words what our current situation is feels impossible. Mostly because I'm feelin all the feels in a way I never have in all my life. This experience has been the kind of hard I've never even come close to in my life, and really we aren't even to the hardest part yet. Its the kind of thing you think would never happen to you. How can this be my life, my family?

Second I realize I'm not a cute pregnant person, which is why I typically avoid pregnancy pics, but I feel like these might be very precious to me one day, and so a picture here and there it is.

Here goes nothin....

20 Week Ultrasound
This pregnancy has gone much like my other two. A couple variations here and there but for the most part very similar. That is up until my 20 week ultrasound. I went by myself. We had already taken both the kids to an early ultrasound to see what the sex of the baby was, so this just felt like it would be the standard ultrasound that would go the same way it had the previous two times. It actually did go the same for the most part. She went through all the body parts saying they all looked good, talked about my other kids and how I was excited to have another boy, and how excited Gianni was to be getting another sibling. Then she just kept saying she couldn't get a good look at his heart because of his position. She had me move to my side then back and kept saying  "I can't really get a good look." I literally thought nothing of it. Then she very casually said,  "So one side of his heart looks like it might be smaller then the other, but I can't really see because of his position. Let me show a picture to the doctor and see if he maybe wants you to go see the perinatologist." (ps at this point I had no idea what a perinatologist was) She came back with a sheet of paper with my appointment already made at the Utah Valley Hospital. That's when I started to feel uneasy. She said she wasn't sure at all everything was probably fine, and that they just wanted to be safe, so I would wait 3 WEEKS and go to this appointment that was really no big deal. On the drive home is when it really set in. I just couldn't get out of my head that if this wasn't a big deal why wouldn't she just have me come back there and do an ultrasound just to be sure. When I told Stefano I started crying, and felt like I was being pretty dramatic because of how nonchalant the sonographer had been. He was very reassuring that they probably did this to cover themselves and they have to be extra careful because everyone is sue happy and they would be in a lot of trouble if they missed something and they were just being super cautious. Which totally make sense because if you've ever had a c-section and then try for a vaginal delivery they pretty much have you sign your life away just to cover all their bases. Totally get it. I felt better, but still a little sick inside. That night Stefano said don't go on the internet it will just freak you out. I knew he was right but I couldn't help it, my mind wouldn't stop and I wanted to be informed about what was going on with my child.  If you just look up heart defects there are tons and really a lot of them are pretty minor. Its when you put in one side of the heart smaller then the other that stuff starts getting scary. You start reading things like:
  • Open heart surgery 
  • Heart Transplant
  • Death
My stomach sank. I couldn't find one thing that was minor when one side of the heart was smaller then the other. Stefano woke up to me sobbing next to him. I could tell he was totally frustrated with me. Why was I looking on the internet, I was going to make myself crazy and put all this time and effort into something that was going to turn out to be nothing. That next day after the ultrasound I was crying on and off for most of the day, then I decided I needed to call my doctors office and tell them I was totally freaking out, and basically ask them if I should be. I gained my composure made the call and had to leave a voicemail, and lost it the moment I started talking. The nurse called back and was very reassuring that this was just a question they had, they weren't at all sure, they were just being safe. Okay. I felt better. Kind of. The next few weeks were long. I tried so hard not to look things up, and honestly it wasn't really helpful my knowledge on what was wrong was very limited, and there are SO many different types and levels of heart defects. Did you know that 1 in 100 babies are born with some type of heart defect? I had no idea. 

I was able to talk myself out of worrying for the most part until the week of the appointment with the parionatologist. I knew in my heart something was seriously wrong. We went the hospital and the ultrasound tec did the ultrasound, it was pretty much like any 20 week ultrasound but she seemed to take more time to look at everything and took a lot more measurements. She kept saying everything looks great, his size was good, he was right on time for his due date, and then she got to his heart, and she said nothing. I knew that was a bad sign. Then the parionatologist came in, she ask me what my gynocologist had told me. I said they thought maybe one side of his heart was smaller but they couldn't be sure because of his position. She confirmed that's what she saw also. His right ventricle was highly underdeveloped. This meant if he were to survive surgery was the only option. She thought it would be a more minor surgery (as minor as heart surgery can really be which in my opinion isn't all that minor). She said we would need to deliver up at the University of Utah hospital, so that we could be close to primary children's hospital. She said there was a tunnel that connected the two hospitals, so he could be taken there after I gave birth so he could have immediate care. She really was the nicest doctor. She held my hand as I cried said we weren't in this alone, they were going to set us up with the best possible care. I can't even tell you how much her kindness meant to me. She set us up to go see a fedal Cardiologist as soon as she could get us in. Which was about a week later. More waiting. 

I don't know that I can go through the blow by blow of this appointment. It was all so overwhelming and extremely emotional. It basically consisted of a full hour receiving an echocardiogram  (sonogram of the heart), then an hour and thirty mins with the cardiologist giving us the rundown of what our child's diagnosis is, and what possible outcomes may be. In short it was worse then what the perionatoligist had thought. It was explained to us that in the best case scenario he would need at least 3 open heart surgeries one of which would need to be within the first week after birth, and all of which would happen before the age of 4.

We've had several appointments since with various doctors, and with each appointment we seem to get another piece of disheartening news. The hard thing I think to really explain to people is that although someone may know a person that has a child with what may seem like a similar heart defect, even a child that had the same type of procedure our baby will need, our child's condition is extremely rare. As in I asked if maybe I could speak to a parent with an older child that has our same heart condition, and they couldn't find one, not one that she felt could give us an accurate representation of what our little boys life could be like when he is a teenager. With that comes a lot of unknowns and potential complications, and when I say potential I mean the complications will come its just a matter of what exactly, when, and how bad they will be. Some of those unknowns will be clearer once he is born, but really the truth of it is there is no way of foreseeing how he will do. At this point we are hoping for the best and preparing for the worst. Constantly praying for understanding and for strength. Strength to face what is ahead of us, and to be thankful for the time we will get with our sweet little boy however long or short it may be.


Chelsea said...

I'm so proud of you for sharing , Meg. You are so loved by so many and now you will have that many more people praying for you . I know you will feel their prayers . It's a very tangible and real strength that you can feel . I love you Always my friend. 🙏🏽💗💗

Rachel said...

I love you meg. You and your sweet family are in our prayers!

vanessa joie said...

Oh Megan! I am so so sorry. You're an amazing woman and I'm so sorry you have to go through this. Praying for you extra hard. Love you!

beezer said...

There are no words. You and your beautiful family are in our prayers!!

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