So, my husband and I decided that I should stay home with Isaac. He comes first. We had a hard time before we had him that it really makes sense to protect someone so precious! We will have to make sacrifices along the way, but who doesn’t when they have children?

I have 24 hour nursing so I have two 12 hour shifts. Despite this, I am still in Isaac’s room with him, interacting with him, playing, watching videos and doing most of his care. From the time he wakes up, to the time he closes his eyes at night, I am there by his side. I only leave the room from time to time when I take a shower, go upstairs for supplies, using the bathroom, cooking in the kitchen that is adjacent to his room. Fortunately, we have a room downstairs that is connected to a full bathroom and goes through to the kitchen. So even when I am cooking (which I love to do!) I can keep my ears open for any alarms that I might hear. I am familiar with the sounds that are in his room. The feeding pump makes a sound when it is put on hold for a while. The vent makes a loud sound when it is disconnected or there is a leak somewhere. The pulse oximeter makes a beeping noise when the battery is low. The sound of the oxygen concentrator and the sound of the suction machine are both so loud I couldn’t hear the doorbell most of the time. In fact, I have told my pharmacy that when they deliver to make sure to call first when they are close so that they do not have to be waiting by the door hoping someone could hear them.

In all of these things going on, a nurse would sometimes tell me that I need to get out of the room to take a break and go to the mall or something to take my mind off my child. As if it is possible for me to do that! I have only been out twice from the time Isaac came home. Both times, my husband was at home and grandma was in the room with Isaac. The mall can wait. These moments with my son will pass and I will never be able to regain them back. I see it as investing in the future. If I take great care of my son today, I know that I will reap the benefits of it in the future. Spending time with him watching his videos, talking and singing to him, tickling him, giving him a bath, doing trache care, talking to him while he is on the bouncer are things that shall eventually come to an end when he grows up. Someone had the audacity once to tell me that if I do not get out of the room that I might not realize that I am already in depression. I thought about it, and thought about it some more. I finally came to the conclusion that if I am thinking about it that much, 99.9% I am not depressed! Don’t get me wrong! I know some moms go through it. It is a reality.

Unfortunately, when you are really involved in your child’s care, especially if your child has some sort of disability like a vent, it is more of an exception than the norm. One would think that if a child is going through something, their parents would be there for support. But sadly, some detach themselves and just let the nurses take care of their child. For some, this is just a stage they are going through and they eventually muster enough strength to deal with the situation. There are so many conditions and diseases babies are now born with that it is unfair to judge someone because we won’t know what they are going through until we have walked in their shoes.

Anyway, the bottom line is this: when it comes to your child, every parent should be OCD. Especially for babies on the ventilator who require special attention and monitoring. Isaac has been home for 6 months now but his nurses always make sure they are at the top of their game when they are taking care of him. They never take anything for granted. They listen to his breathing, check his vent and  they wake me up in the middle of the night when they need to. I keep up with his supplies, stock his medicines, wash his clothes, and I am always there during physical, occupational and speech therapy. All I know is that Isaac is where he is right now because I took great pains to make sure he is getting the care that he needs.