Our story so far (LONG)
This year has been crazy, it starts out with finding out I'm pregnant! My husband and I were surprised but happy, as this little one was not planned. We told our family and they were all over joyed, first grand baby on both sides. Then when I was around 6 months pregnant we finally got married after being together for over 9 years. Then a month later we bought a house and moved out of our apartment. And now currently enjoying our new house and waiting for little one to make her appearance as I'm currently 39 weeks and 2 days.
Now the thing that I didn't mention in all the amazing life changing events this year we also got some very difficult news. When we were in for a typical anatomy scan and to find out the gender of our baby, we ended up being sent to another department for a more detailed scan. We had the great news of knowing it's going to be a girl! But when we went to get a fetal echo we found out our little girl's heart had not formed correctly. It's known as truncus arteriosus. After the appointment and several other ultrasounds and follow up fetal echos she got upgraded. We originally thought she was type one, the easiest and most common. But on the last follow up she got changed to type two. Not the worst but still harder.
Then our doctor let us know that in all the ultrasounds they never saw a thymus, the organ that basically makes the immune system. It's common among babies with 22q11 deletion also known as digeorge syndrome. Basically a piece of the 22 chromosome is missing, causing all the problems.
So here I am sitting, waiting to have my little one but knowing she has to have surgery within a week of her being born, major heart surgery. And with the possibility of no immune system, it's a possibility I may not even get to bring her home.
It's hard to pretend that everything is going to be okay. Which everyone always tells me and I'm sick of hearing it honestly. I look in her nursery and pray she gets to use it. And me not being in the least bit religious is kind of a big deal to me. I hope everything turns out okay but I'm well aware it may not. And I'm not sure I could go through all this and lose and then try again for another one day. I feel like my little girl will be an only child no matter how long she lives cause this emotional roll coaster is over whelming.
Let me tell you the only thing that has gotten me this far without completely breaking is my husband. He has kept it together so well, and the few times he has broken down about it I was able to keep it together because of the thousands of times he has. I couldn't be more grateful for him and our families.
I'm sorry I needed to vent and this went way longer then I intended. Thanks for reading. 💕