Sunday, November 7, 2010

The Development of The Preemie Baby Book

I began all of my research about prematurity the evening of my son's birth. I can't say that I was avoiding doing my research prior to the birth of my son, only holding out for the chance of making it to 36 weeks gestation. I complicated my pregnancy by constantly researching my high-risk condition. Looking back, I definitely should have taken the experiences of being pregnant with more elation and less stress. 

After his birth at 30 weeks, I started a blog to keep relatives and relations informed on our progress through the NICU experience. These were my experiences, and all of my knowledge of prematurity were gained day by day, and by me asking pro-active questions.

Overall, I feel that the time spent in the NICU was only about us having a set-back or a milestone, did I then understand that this a reality to all preemies? You do not know what you don't know...

Going through the feeding processes, I did not know that a baby must develop the suck, swallow, breathe abilities. Although, we were guided to attempt to breast feed at some point, we were never told that in most preemies that oral motor skill is gained as they develop.

I guess, I just wanted that outline. This is the path to how you get home. 

First, they must sleep. We (the NICU) will feed them, make heat for them, and care for them.
In (blank number of days) you will care for them.
In (blank number of days) you will be able to kiss them.
and so on...

'A Journey to Home' is not written as an outline, but a parent can identify the steps involved in the milestones of their preemie. If you turn the page you will see that within a day or so, you should be able to do kangaroo care. It is written so that terms that are discussed briefly, or not at all, are in a dictionary format.

Everyday, I received a phone call from the Neonatologist who had reports of how many bradycardia or apnea episodes my preemie had experienced throughout the night. They would discuss treatments as well as dismissal of treatments. For me, I did not have a useful way to compile the information, so that I was able to view a previous report to see if we were really making great progress, or was there a need for concern. Who knew?

I was uneducated. I will say that yes... we made it through. Did I do it the best way possible? No. I needed more under my belt in order to really, really understand, heal, and to celebrate in the processes.

The development of the premature baby book was really out of healing myself. I still carry discontent in the medical and social  societies that surround prematurity. It is not only a cause but a reality. I could go on for days about my issues with the system, but overall, please know that it is a passion of mine to be an advocate for all babies born to soon, for the parents who experience emotional and financial hardship, and for the overall sensitivity in the care of these families through education and activities in the NICU.

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