Tuesday, November 17, 2009

March of Dimes Fight For Preemies - Bloggers Unite

My Daughter in the NICU - December 1996, 1 week old

In December of 1996, I became part of a statistic. I became that mom who is the mom of the one in eight prematures babies born in this country. My oldest daughter was born at 33 weeks due to an abrupting complete placenta previa. In 2000, I became part of that statistic again with the birth of my son at 36 weeks when my membranes ruptured spontaneously. Before I had my preemies (while not considered micro preemies, they still required NICU time), I had the mistaken idea that early babies were fine - just smaller than full term babies. The night my daughter was born at 33 weeks, I had no clue - not one iota of what giving birth to a premature infant really was going to be like. I really wish my doctor had prepared me better for the NICU. At 4 lbs, 17 inches, my daughter was pretty much on target for her gestational age and I had been given steroid shots to try and help her lungs mature faster as we knew with the previa she would most likely come early. She was on cpap at first because even though she could breathe on her own - she tired out rapidly and the alveoli in her little lungs were "sticky" due to immaturity - because these babies do not produce a much needed lung surfactant at first. That was the first day. She had an arterial line in her head. That was very upsetting to me as it is not easy to see this big tube stuck in a tiny, tiny head - and they don't put it in a vein, it goes in an artery. Her leg was splinted for her IV line and then her arm when they had to move the IV that supplied her with nutrition. The second day she developed a pneumothorax and they took a needle bigger than any I have ever seen before in my life and stuck it in her chest to draw off the air that had torn through her fragile lung tissue, so her lung could re-expand and she could breathe again. I didn't get to hold her until day 5 - because until then she was considered "Critical Care - Unstable" She was "Critical Care - Stable" when they finally let me hold her for the first time, arterial line still in place, leads attached to her chest, splinted arm, oxygen tube and all. The first week was literally hell. After that, things got better - slowly. There is a lot more she went through and yet, we were so fortunate. She has no lasting effects from her less than auspicious too early beginning and she came home at just over 3 weeks, weighing barely five pounds - dressed. We got off easy - no retinopathy, no hearing loss, no intercranial bleeds, no sepsis - just lots and lots of scars. Even after this - I still had the mistaken impression that my next preemie born at 36 weeks and weighing a whopping 7.5 lbs (for a month early, that's big) would be much better off. Not so. He had difficulty breathing at first too. Lungs. They get you every time. He only needed the cpap the first day and then was on oxygen for another week. He came home on the 8th day - but I didn't get to hold him for the first time and try breastfeeding him until the night before they discharged him. The doctor also wasn't convinced until 2 hours before they discharged him that he was going to be going home that day at all and that he wouldn't benefit from another week in the NICU.

The first time I had a NICU baby, I had one child at home - almost 3 years old. The second time, two children - one 6 and the other 3.5 years. I was torn. Wanting to be at the hospital every waking second - needing to be there, and wanting to be there for my other children at home, needing to be there too. I felt like a huge failure on all counts - my body failed my babies, I was a failure as a mom, I was a failure as a wife because the house was a wreck and I was a wreck too - notwithstanding I wasn't in great physical shape either - 3 weeks bedrest, hemorrhaging, csection - doesn't put you at fighting status. Being a NICU parent is emotionally and physically exhausting - even when things are going "well". Even once home, preemie infants are high maintenance - not a week went by without a visit to the pediatrician. Not having a phone call in to their office every other day was unusual. I had to keep a journal and calendar of all the medications and issues just ONE baby was having. Things were difficult enough even with another parent thrown in the mix to help out. I wish that more people knew and understood that prematurity is a struggle. When my pregnant friends say they can't wait for delivery and they just wish they could have the baby now - even weeks or a month (and once 2 months!) early - I tell them "you can wait." These are not just "mini" babies, usually they are doing about as well as can be expected for their size and gestation, and much of the time all you can do is be hopeful that every day will be a little bit better than the one before; they require critical care and time.

Today my preemies are 12 and 9 and beautiful and healthy. I was always amazed and impressed by my daughter's resiliency and serenity in the NICU. She was tough - tougher than I was. My son was tough too - but he hated every second he was in the NICU and voiced his displeasure often and loudly. You would never know to look at them today that their beginnings were difficult and trying - that there was a time when I didn't know if I should dare to imagine this day at all.

For more information on Prematurity or to participate in Bloggers Unite for Prematurity - please follow this link. This month is Prematurity Awareness Month and today is the day to help fight.


Kristin said...

Wow Julia. I am so thankful I got off so easy with my 36 weeker. Thank God your kids are ok.

Christie O. said...

Such a scary experience. I'd never in a million years have thought I'd have been thrust into first-time parenthood with a preemie myself and so many of the emotions you had I so identify with. Thank you for sharing your story, I am so glad that your babies are perfect and healthy now! *hugs*

JuliaS said...

Thanks Kristin. Honestly - we were fortunate in the NICU. There are so many problems that can crop up and be quite damaging. We had our setbacks and that first week with our daughter was awful - but we did make progress and were able to come home in relatively good condition! I am eternally grateful for that.

loribeth said...

So glad to see you sharing your story with others. I hope it's therapeutic for you to tell it again. (((hugs)))

Pam said...

On behalf of the March of Dimes,thanks so much for participating in the Bloggers Unite program on Prematurity Awareness Day. Your story shows how difficult and stressful the experience can be, even when a baby is born fairly close to term.

Like you say, it's really best for babies if they can go all the way to term.

So glad to hear your children are doing well.

Best wishes,
March of Dimes

Jason said...

Jason here from BloggersUnite. Thanks for being part of the BloggersUnite event, sharing your story and helping to raise awareness for the March of Dimes and all they do.