Update – My daugther will have 2 surgeries

As most of you that are following me via twitter and this blog I have published many articles and tweets regarding my daughter and her heart condition.

http://didntpullout.com/my-baby-has-ventricular-septal-defect-vsd-what-is-vsd

My daughter was detected with VSD about 3 weeks after birth. It hurt and all but we thought that she’d be fine in the long run with the medicines they had given her and all. She was hospitalized so that they can monitor how she does with the meds and all. A week after being admitted we were discharged in hopes of her eating so she can get bigger, leading to an easier surgical procedure on her. Appointments were made with her pediatrician and cardiologist for the following week.

In hope of her getting better she was given medication to treat her condition. It was also key of us to feed her every 3 hours and to make sure she ate ALL of what was required of her to eat.

About 5 days after being discharged (this Monday) an appointment for her and her cardiologist was scheduled. Throughout the five days we were at home we noticed that she was not eating good at all and knew it would affect her.

At the appointment we talked to her doctor about what was going on at home and how she wasn’t eating all that well. She said we’d have to be admitted again so that she can eat via NG tube (nasal tube). We were fine with it considering we were told that it was just feeding that they were worried about.

That was monday. Today is Thursday (by the way my birthday was yesterday). We thought we were going to leave the hospital sometime today or tomorrow considering she was doing fine with the NG tube. Apparently not. Even though she was eating great with the tube and she was getting necessary calories into her system, she was still burning them way too fast because of her heart condition not allowing her to gain any weight. She actually lost weight – when we thought she had gained some. The cardiologist woke us up today around 8am letting us know what was going on. It was obvious that she was going to need surgery from the get go but never did we think she was going to need two.

Since she’s losing weight and burning calories way too much throughout her feedings they will need to put a band on her heart so it doesn’t allow much blood to flow to the lungs. It will supposedly help her a lot more and allow her to gain weight for her future surgery. I’m upset. Tired, and worried. Who would have ever thought that this would happen with my daughter. I feel like a lonely 19 year old in this world. I don’t know how many other 19 year old dads are going through this. But this has definitely been a life changing experience.

A lot of this may seem confusing because of how it is written but I’m just very tired and figured I might as well update and let you all know what’s going on.

I hope the best for my daughter and one day hope for her to read this blog and realize how much I and her mother care about her.

I’ll keep this updated!