Thursday, November 27, 2008

Blogging for Prematurity Awareness - Tale of Two NICU's

This is an odd story for a Thanksgiving Day, but maybe not really, as I am particulary thankful that my two preemies have grown up to be brilliant, gorgeous, and mostly healthy.

Incredibly, I never knew that November was "Prematurity Awareness Month". I discovered Cara's blog pages about it on StumbleUpon and they immediately drew me back in time to my own experiences as a Mom of Two Preemies - one in 1985, and a micropreemie in 1991.

I remember when my daughter was born a little over a week before Christmas, 1985, weighing in at what now seems like a giant 4 lbs. 6 1/2 oz.

In the preemie world, she was not all that early at 34 weeks, but it was still a frightening experience that was heightened by the hostile environment of the NICU and the hospital generally.

I didn't realize it was a hostile environment until I experienced the nurturing environment of the NICU in a different hospital where my son was cared for 5 1/2 years later. But NO ONE should ever have to be treated the way we were. Her doctor was wonderful, but the rest of the hospital experience left everything to be desired.

I had left Wall Street to get married and become a mom, and I was accustomed to being accomplished, efficient, and respected. But in this place, it did not take me long to view myself, and my child, as slightly undesirable, inept, dirty, maybe a little stupid. They also asked me loads of questions about whether I was in an abusive relationship, or whether drug use had caused my child's low birth weight, eyeing me suspiciously when I said no to both.

I felt like some kind of modern day leper.

Whether or not her early birth was even in part precipitated by my outbreak of herpes, the nurses came into my room dressed in hazmat suits, looking like some kind of mutant astronauts, refusing to touch me without being covered from head to toe and having a healthy supply of antibacterial agents. No one looked me in the eye, they barely spoke to me if it did not pertain to my treatment.

It took almost a week for me to recover from my C-section enough to go home, and at first, I tried to joke with them that I understood their concerns but that they weren't in any danger of contamination.

I didn't realize till later that they also handled her roughly and kept her in isolation because of suspected herpes - which she did not, in fact, have. Because of the trouble with my C-section I had a hard time walking, but when I was able to drag myself out of bed and down to the NICU, she was always alone in an isolette in an isolation room.

I was only allowed to see her at specific times, and to feed her at specific times, and I was not allowed to touch her without gloves or bring her home until after the New Year. She weighed enough to come home sooner, but they kept her there for observation. The only concession they made to Christmas was to tape a little red bow on her head, since she didn't have enough hair to tie one in. No decorations, no celebrations, just curt updates on her status. Nobody gave me any tips on how to express milk, or offered me any direction on how to use the plastic manual pump they gave me. Nobody explained to me how beneficial breast milk would have been for her, or encouraged me to keep trying.

Shortly before I left there, after one particlarly unpleasant encounter with a nurse, I threw a plastic pitcher of water against the wall and screamed for them to get out and leave me alone. I then sank into post-partum depression for the next six months, and I am sure their contribution to that was my callous treatment in the hospital. I don't even want to know how it affected their treatment of her between the time I went home and the time she was released.

Well, now that I have probably scared the pants off some moms with new preemies, I want to remind you that this happened 23 years ago, and that thanks to the March of Dimes, much has been discovered about prematurity in those years, and many improvements have been made in NICU treatment, particularly for the earliest, smallest and most delicate among us, who might not have even been considered "viable" a long time ago.

Even just 5 years later when my 1275 gram micropreemie son was born at 30 weeks in 1991, the experience was as different from that horror show as night is from day. After being on bedrest for 10 weeks, I had developed preeclampsia, and my blood pressure was in the stratosphere.

It was immediately apparent that they had a different philosophy of care at this hospital. They took polaroids of him right after he was born, and then whisked him away to another hospital where there was a NICU that could provide the care he needed. After a day when I couldn't stand being there without him, they showed me how to care for my incision and allowed me to make the call to leave.

At the NICU, we were encouraged to hold him and talk to him, even to hold him without gloves as long as we washed and gowned up before we entered. We were allowed to stay there for hours on end, where we had every kind of test and treatment thoroughly explained. We were referred to a pharmacy that rented industrial strength electric breast pumps, and told that since I couldn't be there all the time the best thing I could do for him was to provide frozen breast milk.

They called us twice a day, or more often, with every little update on his weight and statistics. Our daughter was allowed to visit with us and hold him. They patiently answered her 5 year old questions and gave her paper and crayons to draw pictures about how she was feeling about what was going on. They showed me how to bathe him and change the leads on the apnea monitor he would be going home with. They gave us classes in infant CPR and told us that we should never leave him with a babysitter who was not proficient in same.

They explained that he was extra sensitive, and pointed out some of his particular coping methods when he was overstimulated, showing us signs to watch for. They let me tape and retape his feeding tubes, and work with them as they taught him to suck on a preemie sized rubber nipple. They explained what bradycardia and elevated bilirubin were, and when we needed to worry and when we didn't.

Just before he left the hospital, they worked with us to make the transition from the feeding tube to breast feeding. And they sent him home after 36 days with a little party complete with balloons, a special outfit embroidered "Daddy's Boy" and a little cap to keep his head warm. As you can see from the photo below, neither of them needs a cap any more to keep their heads warm.

That is the kind of treatment every preemie (and preemie's Mom) deserves, but even better would be a day in which there was no risk of prematurity. The March of Dimes is working to raise awareness of the rise in premature births and discovering their causes so that they can be stopped.

You may want to visit Kristie McNealy's website, which contains extensive resources and information for parents of preemies, and more information about "Blogging for Prematurity Awareness."

Blogging for Prematurity Awareness

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