The day Emilia was born, after some hours of slumber in my hospital room, I got myself out of bed and went to a NICU parent group with my husband. It was merely 11 hours after Emilia was born and perhaps I should have stayed in bed but I felt that was the least thing I could do. The title of the seminar that day was "How to cope with your baby's hospitalization" and it was exactly what I needed to listen to.
The guest speaker was a couple whose baby was in the NICU for a LONG time (and who knew Emilia would be staying there as long). The mom had an emergency c-section and sadly lost a twin. I believe their babies were somewhere around 23-24 weeks. At that time, I remember them saying that people generally didn't understand what it was like to have a "micro-preemie". People's concept of a preemie was a 32 or 34 weeker who didn't need any respiratory assistance and had to just "feed and grow" for a couple of weeks in the NICU before going home.
I could understand what they meant by that. Those 32,33 weekers who freshly arrived in the NICU looked like giants compared to some babies in the unit. True, they were still 8 weeks early... But those babies usually got transferred out or discharged so soon. I guess that couple was frustrated by those people who, after a 3 week stay in NICU, assumed they knew what the couple was going through.
I am a member of an online preemie parent forum and I understand the couple's feelings. I read a lot of posts written by moms who had a 30-something week baby and stayed in NICU for 2-3 weeks and they announce with such pride that their babies have caught up with term babies by 6 months of age. They have met all the milestones on time and their growth is on target, or above average... I understand that they also had trauma and anxiety when their babies were born early and their pregnacy ended abruptly. However I cannot relate 100% to their experience, because as a mom to a 25 weeker, I feel a 34 weeker is almost expected to grow up "normally." Do they know that some babies need physiotherapy and occupational therapy? Do they know some babies are still on oxygen support even at home?
I do realize that I sometimes discount their experience just because I had to endure almost 5 month stay in NICU. I do discount their feelings because Emilia had a lot more health complications than their babies. And it's wrong, I know, because I really don't know what they went through. I don't know them and I don't know their circumstances. Perhaps they have other complicating matters that I do not know of.
I did join a "micro-preemie" online support group. I thought perhaps this is the group where I could exchange information more relevant to Emilia's situation. However, I felt we didn't belong there either. I did not realize that there were so many babies who still needed feeding tubes into toddler years. I did not know there were lots of preemies still who needed physiotherapy, occupational therapy, and speech therapy even when they started kindergarten. Compared to them, Emilia seems to be have no problems at all. We have our own set of challenges but to them, I probably sound like the 34 weeker mom I came to hate. It was a humbling experience, I would say. I was so grateful that Emilia was everything she was.
So, right now, I am a member of both communities but have not actively participated. I do agree with micro preemies moms' need for a distinction between a regular preemie and a micro-preemie, because not all preemies will go home after a month and catch up with term babies by 6 months of age. Not all preemies "just needed a feeding tube" during their NICU stay.
No comments:
Post a Comment