Our Fight

            The helplessness that you feel as a NICU parent is like no other. As a parent you know that you need to be strong for your children, but no one ever really mentions that helplessness you feel that accompanies it. We try to be strong everyday and walk into the NICU with a smile on our faces. We hold our precious babies, I wake up every three hours (day and night) to pump food (life juice as we call it) for my girls, we have learned how to stimulate our daughter when she DESATs so low and needs assistance to recover. Yet as we do all these things we remain helpless. This is a fight that we can’t do anything about. Our girls have been tremendous fighters, and continue to be so. But, I can’t help but be overwhelmed with sadness and frustration for them. Haylee is doing great and should be coming home soon. Each time we think it might happen, something occurs and they extend her time. Even though she will be released, once home her struggle still continues. She will be home on a monitor to alarm us if she at any point stops breathing, in which case we must intervene. All things considered she is doing great. She had a rough start, being born 2 months early, but has prevailed.

            Rylee on the other hand continues to struggle. She is our little "mini" fighter. She was born as a micro preemie, weighing 2 lbs and 15 oz. Her fight has been a tough one, full of many successes and setbacks. Though born small, she is full of fight! Every time we walk into the NICU we never know which direction she will be going.  We relish in the steps forward and grieve for the steps back. As of this morning her DESATs have continued, so much so that she is back on oxygen and having chest x-rays. Luckily, it tends to occur only during feeds and should get better with time and maturity. Though this offers some reassurance I can’t begin to explain the heart wrenching feeling of feeding your daughter, and then having to revive her when she stops breathing and can’t come back on her own. This is again where strength and helplessness combine into one. We know what to do to bring her back, but having to do it because she can’t is very tough. Holding her after she eats and hearing her fuss and cry because of the pain of the reflux break our hearts. We wish we could take it away and make it better for her. In time this will change and she will get better, and for that we are eternally grateful. We are blessed that we have two beautiful daughters, who given tough circumstances will come out of this OK.  We cherish that fact and are truly grateful for it. But in the here and now it is just hard. As a mother I don’t want them to experience pain, and I want to fight these battles for them, to make it better and I cannot.