This article was originally written in March 2008 for Living90045.com, a community blog featuring news, views, tips & chatter from Westchester, CA.
Many people along the way have said to us some variation of “gee, that must have been really hard [or scary].” The truth is, we were first time parents and didn’t know any different. Didn’t all parents give birth to babies as small as their hand, only to see the baby whisked off to the Neo-Natal Intensive Care Unit (“NICU”) to be laid out like a dead chicken under a heat lamp and plugged into a ventilator??? What did we know?
Fortunately, our naiveté knew no bounds and we give it much credit for our happy ending. We didn’t focus on how things “should have” looked, because we didn’t know what that looked like. We focused on our blessings. Maybe mind-numbing exhaustion helped.
We set out immediately to do everything in our power to support this little fighter who had been sent to us. I still vividly remember buying and regularly washing special bed linens during her three month stay in the hospital – some days it was all I could contribute. That is, except for pumping the @#*% out of my breasts. Zoe was too weak to nurse, but I could pump, a practice I somehow sustained for the entire first year of her life – no easy feat for a woman whose baby was torn from her body 13 weeks early and who didn’t have the usual emotional and chemical stimulants of a suckling infant.
We also had a great support system. Being ever the networker, I found another mother in the lactation room who had had a baby one day earlier, at the same gestational stage. Although our babies experienced different problems (ours were primarily pulmonary and theirs were primarily eyes and organ issues), we followed and supported each other the entire way. Seven years later, our families are still friendly and try to share an annual tradition of visiting the NICU with our kids to see the nurses and remind them that their work matters. Everybody in the NICU is always ecstatic to see us.
We also adopted some grandparents along the way – friends of mine before Zoe was born – who slipped into more intimate roles within our family as we navigated our NICU experience. My husband’s mother and my mother both passed away many years ago, and our fathers are far, far away. As luck would have it, Zoe attracted two “adopted” grandmothers and an “adopted” grandfather, all of whom she still sees regularly and who are important parts of our collective lives.
Preemies are at risk for all kinds of different health issues. For us, it was mostly lungs and Zoe was on a ventilator for almost the entire three months she spent in the hospital, followed by six more months (or more, it’s all a blur now) of continuous oxygen at home from a tank and canula. We didn’t even get to hold her until a month after she was born because of the ventilator and other myriad tubes and attachments. Our first opportunity was Father’s Day 2002. Hard as it was for me personally, I let my husband take that first turn in honor of Father’s Day. It was at least another day (and maybe more) before I got my first chance to hold our precious new bundle.
Another issue we have faced is motor skill challenges, including late walking and fine motor difficulties. Sensory integration issues have been big for us, too. Personally, I intuitively think this little baby was ripped from a dark, quiet place much too soon and thrust into a noisy place with bright lights. Anybody who has ever spent any time in a NICU will tell you that it is far from relaxing. Lights are bright, monitors beep, lots of people are moving around and there is lots of poking and prodding. Without the gentle gestational and natural birthing processes, is it any wonder that a preemie might have challenges taking in and modulating sensory input? Almost without fail, everybody who meets Zoe today calls her “shy” (a label that we vehemently try to avoid for her sake), but the fact is, Zoe has challenges transitioning into new environments and new people although, gratefully, we see this diminishing as she gets older and isn’t “labeled” shy in her own mind.
After we left the hospital, we were very aggressive in accessing every possible service. Here again, the family we met in the NICU was invaluable for trading resources. Our local regional center was a huge resource for us, providing paid respite care and coordinating therapies. They also helped us access resources through our local school district when Zoe was old enough. Through serendipity, we were overflowed out of the school district’s occupational therapy on-site services and right back to the private occupational therapy vendor with whom we had been working with for several years through the regional center (hat tip to our favorite therapist, Shelby Surfas, who has regrettably been promoted out of therapy and into management).
Zoe has also, thankfully, embraced gymnastics and dance, which have both helped tremendously with motor coordination and strength-building. Preemies don’t spend their last three months of gestation growing and kicking in the confined space of their mother’s womb. They lay splayed out in an incubator. It’s inevitable that they wind up with weakened muscular structures.
Flash forward to today. Casual observers have no idea that our bright, articulate, curious, energetic kid has or ever had any physical challenges. I count this as one of the major achievements of my life (and I’m sure my husband would say the same if you asked him). Diet (organic, non-dairy and heavy on fruits and proteins), exercise and early therapeutic intervention have all been key for us, as well as our phenomenal pediatrician (Dr. Heide Woo) and extended support system. We count our blessings every day.
We know that not all preemie families have the same success and luck that we’ve had, and our hearts ache for those families. On the other hand, the family that we connected with in the NICU has experienced similar successes to ours. We want families with new preemies to know that there are success stories in the world and to believe that “success happens.”
Do you know of other preemie success stories? Tell us about them below. Let’s put together a giant chain of preemie success stories to share with new preemie families.
Want to donate to the March of Dimes? Premature births are the #1 cause of newborn death and the March of Dimes is leading the fight. You can make a donation in Zoe’s name here. The March of Dimes website is a wealth of resources for preemie families. We hadn’t yet discovered the March of Dimes when Zoe was born, but we did enjoy walking in one their walkathons to celebrate Zoe’s 1st birthday. We had to travel quite a distance, but we found one on her exact birth date.
If you want any more “mom” perspective on the subject of preemies, email Tracy at tracy @ living90045.com. If you want some “dad” perspective, email Doug at doug @ living90045.com. We’re both happy to support preemie families in any way we can.
See you around the neighborhood!