Battle scars

You’d think after Thanksgiving I would be feeling grateful. And I am, really. For so many things. But that’s not the post I feel like writing right now. For whatever reason, here’s my “woe is me” post. Overall, I feel like I am in a much better place today than I was even just a few months ago regarding the girls' birth and Hannah's developmental delays. But just like the girls have some scars from their time in the NICU, I have mine too. Here are some of them:

I’m not the same person I was before this happened. No one is the same after having children. But parents of children who experience life-threatening illnesses or long-term disabilities have to work a lot harder to reclaim their sense of self in this new reality they’re faced with; a reality that isn’t at all what you expect when you sign on to have kids. I’ve been trying hard to reclaim some of my light-heartedness, spontaneity, sense of adventure and fun, but those qualities are buried underneath layers of worry and fear. It’s hard for me to relax, I get panicky about things I never used to get panicked about, and when it comes to the girls, it’s not easy for me to “roll with it” when our schedule gets disrupted. I constantly worry about their nutrition and sleep, especially with Hannah, for whom those things are critical for her to have the strength to work on her motor skills. It’s getting easier as they get older, stronger, and more independent. But I am forever changed by our experience.

Because of Hannah’s more intense needs, I always feel like I am not doing enough for either of my girls. I feel like I’m never doing enough for Hannah, in terms of at-home physical and occupational therapy. There is a never-ending list of activities, games, stretches, muscle groups, ideas, goals to work toward. And there is a clear limit to the amount of time we can spend on these things, as our day is usually taken up largely with dressing, eating, changing diapers, and trying to get out for some kind of fun diversion. And then there are the times when Hannah is sick, or teething, or didn’t get enough sleep, and trying to get her to work her body in difficult ways is near impossible.

And I feel like I am never giving enough to Isabelle, who because she is independently mobile is often left to her own devices as I figure out ways to manipulate Hannah or the environment so that she can fully participate. Take story time at the library for instance: All the kids get up and do ring-a-round-the-rosy, holding hands with their caregivers. I’m stuck: how do I hold both of Hannah’s hands so that she can stand up, and at the same time, hold one of Isabelle’s hands so that she can learn how to do it also? Inevitably, Isabelle is the one that ends up flying solo, left to figure it out for herself. After the first time we went to story time, I came home and cried to B that I couldn’t even teach them ring-around-the-rosy.

Because only one of the girls has motor delays, I’m constantly reminded of how different Hannah is. When I pick Isabelle up and feel how soft and flexible she is, it makes Hannah's stiffness and high tone that much more obvious. When I watch Isabelle move effortlessly from sitting, to kneeling, to standing, to walking, I can see so clearly how all of those transitions are either very difficult or near impossible for Hannah to achieve. When we go to a restaurant and Isabelle can hold herself up in the high chairs they provide you with and we need to prop Hannah up with sweaters or jackets and tell her to sit up straight so she doesn't lean all the way over to one side, I notice how weak Hannah's trunk muscles are. When we’re at the playground and Isabelle takes off for the slide and Hannah has to wait for me to take her where she wants to go, I’m painfully aware of how dependent she is on me for mobility.

I’m angry that this happened to us. It’s bad luck, and it’s just not fair.
It’s unfair to Hannah that she has to watch while her sister does what she so desperately wants to do: move independently and purposefully through her environment. It’s unfair to Isabelle that she often has to watch patiently while I, or one of Hannah’s therapists, give her sister the individual attention and assistance that she would probably love to have as well.

And it’s unfair to me. I don’t want to have to leave the playground where Isabelle is having a ball because my back is killing me from walking Hannah all over the place. I don’t want to avoid music class because I’m not sure how I’ll handle having one non-mobile child and another mobile one, both of whom will want and need my assistance and attention so that they can really enjoy the experience. I don’t want to have to think about any of the issues I need to think about that will never cross the minds of parents of typically developing kids.

I just wish this could all be easier. That we’d wake up tomorrow and Hannah would be walking, climbing, running. And all would be well in the world.

Hannah and Isabelle's birth story, Part II

I honestly can’t recall the first real glimpse I got of our girls. I have a faint recollection of noticing that, just as B had said, they were very, very small. The kind of small that you can’t really explain, or appreciate from pictures, but when you see it in person it takes your breath away. Fit in the palm of my hand small. I know that we didn’t stay long; I was in pain, exhausted, and out of it from pain meds.

I think it was the next day when I saw them again, this time with my dear friend Kristie, who had come to visit. I think that is when the “baby blues” hit and the shock wore off. I cried on and off most of the day. Kristie brought me up to the NICU to see the girls, and as she stood next to me and we looked down on them, I couldn’t stop crying and thinking, “I am so selfish. I forced my body to get pregnant and this is what happened.” I saw the girls with oxygen support, IVs everywhere, monitors for their hearts, O2 levels and body temperatures. I saw them greased from head to toe in Aquaphor and wrapped in cellophane so that their transparent skin would stay moist. I saw them hidden under a mask to protect their eyes from the phototherapy they were receiving for jaundice. I saw them naked, without diapers on, light fuzz covering their bodies. They looked like tiny birds that had just hatched and been unexpectedly tossed out of the nest.

In those first moments of really seeing them, I honestly wondered if they were meant to die, and we were keeping them alive selfishly and for our own good, rather than letting them pass on without suffering. They did not look like newborn babies, they looked like fetuses that should still be in the womb. What were we doing, using technology to have them in the first place and then to keep them alive. Was this truly meant to be? How premature is too premature?

And yet, with every fiber of my being, I wanted them to live. I wanted to touch them, nurse them, kiss their heads and fingers and toes. I wanted to tuck them into my hospital gown and spirit them back home. I wanted to go to sleep and have them back inside me, kicking and punching and moving around in their protective water bath with each other for company.

It wasn’t until the girls were two days old that I got to hold them, one at a time and for only a few minutes, tucked under my hospital gown and nuzzled up next to my naked skin. I was petrified to move, to disturb all of the wires and lines. They were so small that their bodies literally fit into the palm of my hand. I didn’t have much energy to sit with them for long, but the minute the nurse scooped them back up and returned them to their crib, I wanted them back again.

We spent the third day in the hospital trying to decide on a name for our second daughter, and paged through baby name books in between visits upstairs to the NICU, phone calls to family and friends, and catnaps. After some time, we decided on Isabelle Hope. Isabelle is a name we had discussed before, and Hope felt like a positive, life-affirming choice that was particularly appropriate now.

Hannah and Isabelle spent two months in the hospital and came home weighing approximately four pounds each. On many fronts, they sailed through the NICU amazingly well, escaping many of the horrors we had been told to be prepared for: life-threatening infections, heart malformations, inability to be weaned off supplemental oxygen, gastrointestinal problems. But unfortunately, we did not get off scott-free. One month after their birth, the girls had a cranial ultrasound to check for brain bleeds that are common in micropreemies (those born weighing less than 1,000 grams and earlier than 30 weeks). Hannah's ultrasound showed evidence of PVL, which put her at increased risk for being diagnosed with cerebral palsy, as well as learning disabilities.

Since their discharge, we have watched the girls grow with hope, faith, and bated breath, especially Hannah. Initially, they were on the same developmental timeline and meeting the milestones of other babies born at their "corrected" age (when they should actually have been born, which was 3 months later than their birth age. But as they grew and the fine and gross motor skill challenges increased, the gap between Hannah and Isabelle grew. First it was only a few weeks, then a month, then six months, and now it is more than a year. While Isabelle reached all of her motor milestones in an age-appopriate fashion, Hannah is developing some of those skills at a pace slower than a child at least one year younger than her.

Thankfully, on the social and verbal front, the girls are both right on target. This is a huge relief as preemies in general are more prone to learning disabilities and preemies with PVL are at an even high risk. It is hard to say if more subtle difficulties might arise when the girls are school-age, where some learning disabilities become more evident. But at this point, they are both typical two-year olds in this regard.

There have been so many challenges to adjust to since we had our girls: their early arrival, the fact that there are TWO of them, and Hannah's developmental delays. I hope to use this blog as a place to share some of our triumphs and struggles through this process, which has changed all of us in so many ways.