As the Days Go By...

Trust in the LORD with all your heart.

Proverbs 3:5

We almost lost our baby AaronMatthew. I cannot tell you how it happened. Neither can the doctors, but it just did. All of the sudden, all of his stats dropped. His blood pressure and oxygen level and then he was being intubated and transferred to Children's Hospital. Praise the Lord he came out of it. Life has felt strange having a baby 56 days ago and not ever having him home.

There was a meeting yesterday afternoon with the Cardiology team and the surgeons. He is gaining weight slowly and all of his stats are acceptable for his situation. They completely left it up to my husband and I if we would opt to take him home to see if he does alright and continues to gain weight or do the open heart surgery. They said they are okay with either decision we wanted to make. They could do the surgery safely at his weight and age but it would still be better to get him a little bit bigger and older if we could. They told us there was no right or wrong decision. 

We said we would take our baby home. 

I am in the process of learning around the clock care for AaronMatthew. I had to re learn how to insert the feeding tube through his nose and into his belly. My husband had to learn too. We also had to watch videos and practice measuring liquid medicine through a syringe. I went through CPR before AaronMatthew's last episode, so that is covered. There was a printout given with a schedule of his feeding and medicines as well as doses. They want us to be completely comfortable with caring for his special needs before and if we take him home. I opted to spend the night with him in a special room to care for him by myself and incase a situation would arise, I would still be in the hospital and call a nurse or doctor right away for help. I was told, this would not be easy.

Am I scared? Yes. Of course. I know God holds all things together, but I am scared. There will be no doctors and nurses who we have become so dependant on to care for our child. There will be no monitors beeping or any special equipment hooked up to him, except for the feeding tube.

The plan is to take him home. Meet with his Cardiologist a few days later and then meet with the surgeons the next Thursday to set up a date for surgery.

Ideally, if AaronMatthew could at least wait the next 2 to 3 weeks and gain "healthy" weight for the open heart surgery, that would be great.