I’ve thought a lot about filters lately.

How to sort out stories that are not ours but fill up so many spaces in our lives.

How to separate necessity from what is superfluous.

Here on this blog, how to incorporate the life-changing event of our daughter’s birth while keeping up a blog dedicated primarily to chronic illness.

How to discuss parenting and chronic illness while still maintaining my daughter’s privacy.

Today, at least, the thread that connects some of this is natural.

This week, I returned the digital scale we had to rent for a few weeks to carefully monitor the baby’s weight. Without getting bogged down in the details of jaundice and breastfeeding, I’ll say that it is not easy to get a sick, sleepy baby to eat. If a baby does not eat, she will not recover and a vicious cycle emerges. In our case, said cycle resulted in weight loss, many blood draws, pediatrician visits, lactation consults, hospital-grade equipment, etc.

She is now five weeks old (!) and steadily gaining weight, and is otherwise healthy and thriving.

I had the option to keep the scale another week, and I was tempted. So, so tempted.

In my world, data is king. After such a long, difficult, and medically intensive pregnancy, I am wired for data. By necessity, I never went more than a week or two at the most without an appointment or ultrasound. Biophysical profiles and their various indices were part of my twice-weekly language, and I carried spare sets of fetal monitor belts with me to the hospital for all the non-stress tests.

We pored over amniotic fluid levels, weight estimates, placental blood flow readings, and dutifully logged my own blood pressure and oxygen readings since they so closely correlated with her well-being.

When I commented to someone I needed some kind of scrapbook or binder for all her ultrasound pictures, I got a strange look. Moments like that remind me that our journey to have a child was not the norm. But the dozens of pictures that mark our journey are precious to me, now even more since I know the little person who rests her head on her arm or falls asleep with a hand across her face, just as she did then.

But it is time to take ultrasound pictures off of the fridge and out of the dingy white folder I lugged to each appointment. It is time instead to do something with all the pictures I’ve developed of her first few weeks.

And that’s how I feel about the scale. For a time, the constant stream of data was helpful and necessary. She needed to gain weight, and we needed to know if our various strategies were working. But she is over that particular hump now, and I need to learn to let go and trust her body and my body to get her what she needs. I need to rely on what is here and now, and not cling to numbers to tell me what I can see for myself.

It’s a big shift, after so many months of living on a precipice and waiting. But I think it’s a shift we all struggle with to an extent. So many of our conditions warrant close monitoring and frequent tests and streams of information we use to make decisions about treatments, drug dosages, lifestyle choices, etc. We need the data to make informed decisions, but data itself is not everything.

So I left the scale at the office. And in the few days that have lapsed, we have done just fine, she and I. I don’t know exactly what she weighs, but I don’t need to anymore. Besides, most parents don’t know this day to day. Instead, I’ll wait for her to grow into her 0-3 month clothes better, and I will smile when she hungrily, noisily eats, pleased that she is well enough now to wake up on her own to eat.

Things are headed to normal, and while I am not used to that, I am so grateful for it. In so many ways, data got us here, but now our job is to let go and live.

In the Moment…

My daughter has her father’s chin and his nose, and it looks like she will have his big, bright blue eyes, too.

She also has his lungs, not mine, and I’m hopeful her immune and autoimmune systems will follow suit.

She has jaundice and some related feeding issues but compared to what we thought we’d have to worry about if she came when I was hospitalized at 28 and 32 weeks and when I went into labor at 34 weeks, these issues are definitely not major ones. It is all relative.

She only spent one night in the NICU and overall she is doing fantastic—she is a happy, calm, easygoing baby who grows more alert and active by the day, who has hilarious facial expressions and endearing little sounds and motions.

(And she is ours! There are times when it still does not feel real, this thing that happens for other people that amazingly, has happened for us, too.)

She is an absolute joy.

Pregnancy and Chronic Illness….
I consider the opportunity to carry her the great privilege of my life.

In many respects, I loved being pregnant: I loved feeling her squirm. I loved rubbing my hand on my stomach and feeling her kick in response. I loved knowing her movements and her patterns so intimately. But I cannot express the profound relief I have in not being pregnant anymore.

I see even more clearly now how tenuous the tightrope I walked on was, and just how difficult things were, especially toward the end. I should say that until the third trimester, and ignoring the bed rest/blood pressure situation and the preterm labor, things with my lungs could have been much worse, and we continue to be grateful for that.

Now, about the labor and delivery. We fought so hard for each day she remained on the inside, especially the last few weeks, but we’d reached the point where my body couldn’t give anymore. We were 37 weeks, and had gotten further than anyone expected, especially after all the hospitalizations the preceding few weeks. I staggered into my doctor’s office, hardly able to breathe. My blood pressure was creeping up higher and higher, and in the day since my last visit, I’d gained several pounds of fluid. Things were deteriorating rapidly.

We were sent upstairs, to the floor and staff we knew so well by now, and nurses and residents cheered us on, excited we were being admitted and this time, it was to actually have a baby.

Naively, we hoped that since I’d had painful contractions for a solid month, the induction would move along. I had strong, pitocin-induced contractions every two minutes for 24 hours before I got an epidural, and that time included a mechanical dilation that failed to progress things much and many other interventions. When the internal fetal monitor showed the baby was in distress, the epidural went in and we almost had an emergency c-section. They cranked up my oxygen further, and the baby’s heart rate improved. All told, 34 hours later, with two and a half hours of pushing, my little girl arrived, safe and sound.

The hardest part was the chronic illness dimension; namely, having enough air to push. I’ve never been on more oxygen in my life than when I was delivering her, even when I was in the ICU, but it got the job done.

(The whole labor/delivery was complicated and long, but my doctor and team were committed to avoiding a c-section unless it was truly a life-or-death matter because it would complicate how I recovered from the deterioration of my existing health conditions. Ironically, if I’d been healthy, they probably would have done a c-section at some point in the process.)

The best evidence it was the right time? After 34 hours of labor, after not sleeping for 40 hours prior to the induction, preceded by weeks where I did not sleep more than 1-2 hours a night, after a month of contractions—after all that, I still felt better within 5 minutes of delivering her than I had in many, many months. Compared to the third trimester, the ordeal of delivery wasn’t nearly as bad. Everything is relative.

Her healthy squall while she was weighed and assessed assured me she was doing very well, too. It was amazing to finally meet this little person whose face I’d seen on dozens of ultrasounds, whose heartbeat I’d proudly listened to during many non-stress tests.

She was here, and she was okay, and in so many ways, I could finally exhale.

As I started to mention before she was born, it was the emotional intensity of pregnancy and chronic illness, especially during the third trimester, that was crushing at points. It really hit me when we came home and I could move around without worrying my blood pressure would harm her or cause a stroke; when I could lay down flat without suffocating; when I could walk around the block without worrying about oxygen saturation and if she was decompensating; when I could go out in public places without worrying an infection would put both of us at great risk.

It also really hit me when I returned to the hospital for my two-week check-up. I tensed up being back there, back to the scene of so many appointments and tests, often several a week. This time, I did not have to update an anxious husband with the latest results or hold my breath until the technician told me she passed her latest test. I could walk by the admitting office without being escorted to an inpatient floor. I could go home and spend my day with a happy, smiley infant instead of worrying about prematurity, preterm labor, and various fetal outcomes.

In so many ways, I could finally exhale.

Parenting and Chronic Illness
Admittedly, I only have a couple weeks’ experience to discuss. What I can say is that chronic illness and this pregnancy did prepare me for some parts of life with a newborn. The actual labor-related pain/discomfort felt minor compared to everything else. Even a few hours’ sleep is way more than what I got for months, so I am used to functioning in this zone.

Someone commented to me once that the waiting makes all of this even more precious, and it absolutely does. Every single second of the long journey, every moment of waiting, was so worth it. And when I hold her and she snuggles up under my chin, or opens her eyes wide and meets my gaze, or I watch my husband rock her, all the waiting and the intensity are nothing but memories from a different life, a life that hinged on “if.” If we should do this, if she would be okay, if I would be okay, if we would ever have a family.

We have crossed over to the other side, one defined by her, not by uncertainty. We are so thankful she is doing well and so grateful she is in our lives. If the illnesses and stress make us even more mindful of how lucky we are and how precious she is, I’ll take that.