Saturday, November 30, 2013

Wishing I Could Do More

As I've had to do so much this year, I had to step away from the blog--from all creative activities actually--because the kids were sick. We traveled the weekend before Thanksgiving, and both kids came home with colds. I try to temper my frustration with having sick kids so often this fall with gratefulness that the kids are strong enough to handle most common illnesses now. And relief that at least M has had a Synagis shot this month!

I've been moved lately by the preemie stories that have come my way. Since I'm usually the only Preemie Mama people know, they pass along all sorts of photos, videos, and stories my way, which I love! I'm already inundated with preemie stats and concerns, so learning more about this community is rewarding for me. Some of the stories mirror my own just enough to feel familiar but they are tragic enough that they disturb me. They remind me that someone always does have it worse and that even during our darkest days, we were always blessed with healthy kids.

Lately two stories stand out. The first is of a friend of a friend who lost her husband in a car accident a few months ago. Then, she was hospitalized for bleeding complications due to placenta previa. She had her baby girl at about the same point I had M. She also has a son at home, a son she cannot care for while she's tending to her baby in the hospital. I find myself thinking of her a good bit. I do not know her name. She does not know me. But, I know just enough of her journey to hurt for her. I cannot imagine going through the NICU without your spouse, because my husband was the only other person who was in the dark place with me. We always had each other, and I think how unfair it is that someone should be stripped of her partner just before such a traumatic time in her life. I called my mom after I heard the story, and I asked her why some people get too much grief at one time. I know some of us have more faith than others. They would say I just don't know the big picture, and maybe they're right. But, I can't help but have a gut reaction, frustration that one woman should be given such a load at one time.

The other story that has been on my mind is of a woman who just had a baby abroad. Her husband is in the military, and they're stationed in South Korea. She had her baby at 31 weeks; she almost made it to the 32-week threshold that separates long NICU journeys from short ones. And yet her baby is struggling. He is having a difficult time breathing and eating, and I can't help but be haunted by a critical factor: it is not customary for parents to hold preemies in Korean hospitals. The mother has been told she may not hold her baby for months, even though he's already three weeks old. Her milk production is faltering, and, in my opinion, her son would be happier and healthier if he had a little contact with his mother. Human babies, no matter how early, need physical contact, which is why kangaroo care is essential. Of course, a 2-pound baby can't handle all the stimulation of a newborn baby, but he needs his mother's warm body, heartbeat, and steady breathing to help his own body remember all the jobs it must now do that it is no longer in the womb. Kangaroo care allows the baby to relax, to be soothed, to have some solace and comfort during a stressful time. So many studies across the world support the science of it. And it's just common sense. No one soothes us the way our loved ones do! So, the idea of that poor baby being separated from his poor mama just haunts me. I also wonder about preemies around the world and how just a few alterations in care could dramatically change the outcome of so many little lives.

I only wish I could do more.

The preemie stories keep coming, and I keep filing them away, hoping that one day the full scope of what the heck I'm supposed to do with all this knowledge and this newfound passion will present itself.

Sunday, November 17, 2013

The Magic of Preemies

Today is World Prematurity Day. Instead of dwelling on the negatives, all the risk factors and statistics, I want to celebrate my preemies today, because there are so many blessings to being part of this community. So much of what I write is raw as I'm working through complex feelings about traumatic events, but as my preemies get bigger, older, and healthier, I've realized that I also love being a mom to preemies.

These are some of the reasons why:

1. It's not just the hard parts about having babies that are extended with preemies. All the delightful things extend well into the first year too. Chubby baby cheeks; tiny fingers and toes; sweet, toothless grins; nighttime cuddling; swaddled, sleeping babies; cooing baby chatter; tiny infant clothes; and sweet baby kisses on velvety skin. I wonder what it's like to have babies for a few months when I have them for more than a year.

2. I have been inducted into a community I never knew existed. From Michelle Duggar to preemie mama bloggers to friends from our NICU, I now witness the successes and accomplishments of preemies across the country. Even if I don't actually know all of these children and their families, I revel in their achievements, because I know the struggles and odds they've overcome to do the simplest things. There is a common language among preemie families. We throw out O2 numbers and how many bradys our babies have had. We discuss therapy and developmental delays. We share suggestions for where to buy tiny clothes and how to store breast milk. When we talk to each other, we can drop all the explanations. This kinship replenishes drained emotional reserves.

3. Much of my identity is now intertwined with what it means to be the mother of preemies. I'll admit that in my earliest days as a mother, this fact weighed on me. I had no friends with preemies, and I knew no one to give me any guidance. Because I wasn't a mother before J, I had no mommy friends to give me strength, and everything I knew about parenting seemed to have its root in J's prematurity. Now, as the kids get a little older, I find that I still have an entirely different set of experiences from many moms, but it doesn't discourage or defeat me any more. All I know are preemies, but they give my life so much meaning and purpose.

4. I always wanted to be a person who didn't sweat the small stuff, but small stuff definitely gave me the sweats. Until J. The last few years have been difficult, but they've also forced me to focus on what is most important in life. And everything else is just noise and chatter. It has also given me the freedom to see my career ambitions in a new light and to explore them from a different perspective. In J's earliest days, so much of my world felt lonely, dark, and shuttered from the daily lives of everyone around me. I see it all differently now. I see options, opportunities, and chances everywhere I look, and I also have the patience to realize that just because I can't do it all right now doesn't mean I can't do it all one day.

5. I still wouldn't call myself patient. As most mothers, I am constantly telling myself to be more patient, to speak more kindly, to be more understanding, to take more time to enjoy the chaos of life with small children. I have much work to do, but I believe one of the gifts of life is the opportunity to constantly smooth our rough areas, to better ourselves to become the best person we can be. If 150 days in the NICU, if two emergency deliveries, if two long babyhoods of little sleep and much problem-solving, if all that won't teach you at least a little patience, then I guess it's hopeless! I do find myself ignoring whining, overlooking faults and foibles, and listening to the big fears that come from small bodies much more than I ever thought I would.

6. The lows of having preemies can be pretty low. Like the day we found out J had a heart defect. Or the night my in-laws drove us to the emergency room because my blood pressure with M was stroke-level. But, the highs are so much higher. I won't ever know how good it feels to bring a full-term baby home after a few days in the hospital, but what about the elation you feel wheeling a 6-lb, 3-month-old out into the sunshine for the first time? What about watching your 17-month-old who never rolled or crawled finally...finally...finally take his first few steps, watching him gain his hard-fought independence for the very first time? The simplest things take on new meaning: smiling, talking, walking, eating, and even breathing. I cried at the sight of my 2-lb baby girl breathing on her own, and I told my husband that I probably would have cried at the miracle of any baby that small breathing. But, given that it was my own daughter, it was a spectacular moment. Absolutely spectacular.

7. My best friend who has known me for 26 years told me after she saw J in the NICU that I was previewing him. At the time, all I could think was that I didn't want to preview my baby. I wanted what every other mother wants: a big, healthy, full-term baby. But, the more I thought about it, the more what she said resonated. It realigned my perspective. I could not look at him and expect to see a baby who had enjoyed 14 additional weeks of growth and development in utero. I had to see him for what he was, a 2-pound miracle, a pre-baby, the tiny baby who would become the baby I would take home and raise. And then I also started to realize that I was getting to witness J's phenomenal growth and development despite great odds and that I was getting to know his unique personality months before I was supposed to even lay eyes on him. Besides, how many people ever hold a 2-pound baby?

8. The people I've met have been amazing, such as NICU nurses who love on palm-sized babies with tenderness and incredible skill. They have an arsenal of tricks to cure most of what ails the tiniest bodies, and they manage to navigate the treacherous emotional waters of parenting babies whose parents have to leave them behind everyday. Sometimes, they make all the difference with a smile or a kind word of encouragement in an otherwise awful day. The doctors I met were dedicated and devoted to a chosen profession with so much heartbreak. The volunteers were so giving of their time. What mother wouldn't love the lady who rocked her screaming baby after a transfusion when he couldn't eat? How can you possibly thank someone for that? And I cannot heap enough praise on the team of therapists and teachers who have encouraged my kids toward each milestone. After our PT leaves, I see the results in M immediately. After I pick J up from school, I hear the confidence and enthusiasm that his teachers, skilled in developmental delays, have instilled in him. This phase of my life has left little time for friends, and there have been weeks when the only people I talk to are these teachers and therapists. They have been not just a lifeline for my kids. They have saved me.

9. The last time I did kangaroo care with M, I memorized her tininess, the way her fragile body felt against mine. She fit in the cavity of my chest; it was like holding a furless kitten. I measured her minuscule fingers in my own. I stared at her dots for nostrils and her pinpricks for fingernails. I felt her skin, her nearly translucent skin, against my own. I listened to her breathing, breath out of a mouth the size of my pinky fingernail. I knew it would be one of the most beautiful moments of my life, witnessing a magic so few witness. And it is magic.

Thursday, November 14, 2013

We Have To Keep M Healthy

This is the saga of Synagis.

Anyone with a preemie born before 32 weeks has probably heard about Synagis, a monthly vaccine given to small children at great risk from the side effects of RSV, a virus that causes cold symptoms. Nearly all toddlers by age 2 have been exposed to RSV, and most parents have never even heard of it because for healthy kids with strong lungs, it's more of an inconvenience than anything else. For preemies and small babies, it could mean lifelong respiratory challenges, like asthma, or it could even cause death. Tiny lungs simply cannot withstand the virus's attack and all the fluid and mucus that accumulate (see this post). Parents of preemies during RSV season (usually October through April in my area) are encouraged to wash hands, keep their children out of public spaces, and avoid sick people, but one of the best tools for protecting susceptible lungs is Synagis. It helps keep RSV in  the nasal passages as a head cold, protecting the lungs. And it doesn't come cheap. It's needed every 28-30 days, and it generally costs $1000 for each vaccine. However, if you factor in one night's hospital stay or a lifetime of asthma medication, it's actually a bargain.

The problem with $1000 vaccines that must be given within a short time of delivery to a doctor's office is that pediatricians won't be liable for the vaccine and refuse to order it without prior approval from an insurance company--even if families are willing to pay for the vaccine themselves. The prior approval process usually begins in September or October and can drag into the holiday season, as insurance companies hedge their bets on whether or not a few $1000 are worth it. This process, in my experience, limits parental involvement but depends on parental involvement, and therein lies the fantastically frustrating contradiction that is the state of healthcare in the United States. Whatever your take on how to fix it, surely no one who has ever gone to battle with health insurance companies, doctors' offices, and pharmaceutical companies can be pleased. It can be a nightmare, and I am so grateful our experiences have been limited to the NICU and preemie care.

So, in August at a doctor's appointment, one of our pediatricians said she thought M would get Synagis this season with no problems based on her prematurity, weight, age, and other risk factors (like her exposure to her toddler brother and other babies in Mother's Morning Out). I was cautiously optimistic, because I had experienced the Synagis Approval Roller Coaster with J. In early October, our regular pediatrician put in another request to have Nurse S contact our insurance company, because we'd heard nothing from the first request in early September. That doctor also thought M would definitely receive it. The next week I called Nurse S to see how the process was going. She said that we'd received a denial. Of course, no one had informed me.

I was disappointed, because I cannot protect M the way I protected J. M is not our only child who can simply be sheltered at home all winter. A few days passed, and then it dawned on me that our state is our secondary provider for M's first year, because of her prematurity and birth weight. We declined that help with J, but we had a hiccup in our insurance during M's NICU stay and realized the value in having a back-up plan. So, I called the secondary. Of course, all infants are eligible for vaccines through their program--that was the answer I got. I tried to explain that this is no ordinary vaccine. I can't just go to a clinic to get it, and prior approval is required before a doctor's office will even order it. Finally, I spoke with someone who assured me that if the primary denied it, the secondary would cover it.

I didn't feel very assured.

So, I called Nurse S and told her. She said she'd follow up with them. Days passed.

I received a denial letter from the secondary. It said that we could have an appeal, so I called and said we wanted to appeal the decision.

I called Nurse S and told her, and then I called our primary to verify that they had denied M too. They said no decision had been made. What?? Apparently, the first request had come before the technical start to RSV season, so our doctor's office had to repeat their request. So, I called Nurse S back and told her that news. Clearly, she already knew that the primary was still considering her second request, and by her tone, I should have known too. Nurse S deals with very frustrating situations, so I try to understand that her tone has nothing to do with my stupidity. But, sometimes I can't help but wonder if the doctors and nurses at our otherwise wonderful pediatrician's office really understand. What would you do if you were protecting your baby's health? Really, what would you do?

So, I waited. We were in RSV season by this point. M had been sick for the better part of a month, and my husband and I decided that M needed to have a break from the germs at Mother's Morning Out. I was envisioning how her winter would go with drooling, runny-nosed babies. Of course she'd get exposed to RSV!

Then, I got a letter from our secondary. I was excited, but it was just confirmation that they were appealing the denial.

Another week passed. In the meantime, we received notification from our secondary that we had three weeks to gather all of our financial information--and I mean ALL--for a review over whether M will receive secondary insurance after her first birthday. If we didn't submit the paperwork by the end of the month, her secondary insurance would automatically terminate. I felt defeated. I'm quite sure she won't be eligible, but on the off-chance that our secondary insurance gave her a few Synagis shots before her eligibility expired, we decided we had to comply. So, my husband spent much of his free time during one week on that task.

Then, I got another letter from our secondary. I couldn't believe it said that we'd won our appeal. They were approving Synagis!

Except when I called Nurse S, she said she'd heard nothing. She called the secondary. She called me back to say that yes, M was approved, but only if the primary issued a denial and informed the secondary on the reason for the denial. Okay, awesome. But, how do I do that? Nurse S and our pediatrician called the primary. I was miffed because the last I'd heard from the primary was that they were considering M's case. I had no idea they'd made a decision and they'd failed to directly notify the secondary. Nurse S called back to say that the primary was in the appeal phase on their denial but that our doctor had stressed that since it's now November, a month into RSV season, and our secondary has already approved Synagis for M, it would be fantastic if they'd finish their appeal and notify our secondary.

Another week passed.

Yesterday, Nurse S called and left a voicemail asking me to call the office. I prepared myself for the inevitable no--no vaccine for whatever convoluted reason. I'd already accepted it when Nurse S said, "Synagis is here!" Wait, what? I know I should have asked more questions like "did the primary finally officially deny her?" but instead I just made the doctor's appointment for the first available time. Better get the vaccine before someone changes his or her mind!

Nurse S helped give M the vaccine. I looked at her, really looked at her in her eyes, and said, "Thank you. Thank you so much. I know this was a pain, but I really appreciate everything you've done." And she smiled, shrugged her shoulders, and said, "We have to keep her healthy."

When I wonder if people like Nurse S understand, really understand, it's a moot point. Maybe she does and maybe she doesn't. But, even if she doesn't, she understands enough. Because in the aftermath of a two-month insurance battle, just one of many I'm sure she fights on a daily basis, her answer is exactly what I would say.

A shrug of my shoulders as if all of this were just child's play. We won after all. And we have to keep M healthy.

Tuesday, November 12, 2013

Thank You?

I was at the zoo last week pushing the kids in the double jogging stroller, and I was wearing jeans, a boxy pink sweater, and running shoes. Like most of my days with two small children, very little effort went into my appearance. Which is why the following conversation surprised me.

Two women were pushing their strollers toward me. As they passed me, I could feel one of them looking at me. Then, I heard her say, "And look at her. She has a baby, and she doesn't even look like she's had a baby!"

I actually glanced around to see if any other women with babies were walking by us at that very moment, but she must have been talking about me.

First of all, thanks. I'll try to take that as a compliment.

Second, looks are deceiving. Yes, I do have a baby, but she's not nearly as young as she looks. She's 10 months old now, four months older than she looks.

Third, women shouldn't judge themselves so harshly. I am wearing my regular jeans again, which I do consider to be an accomplishment because it's been a rough year. And I do have two small kids. But, what that lady didn't know is that I don't have babies. I have two-pound kittens, which explains why I don't look like I've had full-term babies. I haven't.

Fourth, it always stings a little when people say things like "you don't look like you just had a baby." I know it's meant as a compliment, and I understand the intention. But, I always think back to those tiny babies and those awful deliveries. And it actually feels like an indictment, like a reminder of some major failures in my life. I always want to ask if someone would really trade being a few pounds heavier with seeing her tiny baby struggle for life.

So, thank you, I guess?