One day you are excited and everything is perfect all is right in the world. Then, that 10 minute procedure turns into 1 hour and you get escorted into a different room. You know something is wrong but no one tells you what’s going on, all you see is the box of tissues next to you.
Finally, the provider comes in to inform you that your child’s heart didn’t develop properly. Your whole world stops, fear consumes you, all logic is gone, and the grieving starts. It’s not that you lost your baby but you have lost a healthy baby the one thing all expecting parents say “as long as they are healthy that’s all we can ask for” now that’s gone. Your child’s heart is not what it’s suppose to be and not only that the doctors cannot tell you the extent to which is going to effect your child. All they can say is we are sorry and the baby will need surgery at some point before they are one year’s old.
They show you what a normal heart is suppose to look like and what your child’s will look like.
This is a complete shock to system but it is just the beginning because now you are a parent. If you were like me you’re a first time parent as well, in complete terror of what’s ahead. Will you get to take your baby home? How long will in be in the hospital? How can you keep working? We all think of these questions.
We were able to bring home our daughter after 4 days in the NICU. At 5 weeks old she would need to go to the hospital for some advanced imaging of her heart to she when she would need surgery. We went to this appointment everything went fine and she was brought to the recovery room. She did well for awhile so they were going to send her home. During time the time they were preparing to send her home she stopped breathing. We called for help and the nurses called a code blue on her. There were so many people that came into the room. They also had to have her imaging looked at right away.
We were to told that our little girl would need surgery right away.
And so it hit me the reality or being a heart parent. It was just the beginning.
This is when everything changes.