We're rich. Who knew?

We're rich; wildly wealthy, in fact. At least that's the verdict of Florida Medicaid. Of course, we knew we made too much money to qualify for straight Medicaid. But there's a program called "Share of Cost" which takes only assets, not income, into account. We gave that a shot, but were denied. We just have too much money saved up. Never mind that it wouldn't be enough to get our family of four through even six months at anywhere near our current standard of living which, mind you, is not lavish. Never mind that it would be only enough to pay for maybe one month of 12 hours of nursing most days of the week. We could spend it all tomorrow paying off a small fraction of our student loans and, no doubt, qualify for Medicaid. Talk about perverse incentives.

Much as I differed with some of the champions of welfare reform in the 90s, I have to agree that our government's system of public assistance doesn't incentivize (how you like that MBA word?) people to do the right things, the things that will lift them out of poverty and allow them to stand on their own two. Since we've started trying to get some help with medical costs for Brave Baby, we've heard all sorts of stories about the lengths people go to in order to qualify for SSI and Medicaid. One spouse will quit their job to get the family's income under the acceptable level. Married couples will get divorced so that the mother can file as unwed and impoverished. Welcome to opposites world. Here's a thought. Shouldn't we be trying to support people to do the things that would be healthy for them and for society?

Need I explain further why I fully support the President's plan for health care reform?

Questionable Advice

I've learned to question all of the advice that I get about caring for Brave Baby's trach. Every nurse and RT (respiratory therapist) has a bit of wisdom to pass on. This being strange and frightening territory, I am anxious to absorb every piece of knowledge that will help me take the best care possible of my baby. Based on their experience and credentials, you'd think these would be the very people to learn from. Well, sometimes they are. Usually they are. But sometimes not.

Case in point. Several have told me it's okay to reuse the trach. Just clean it and save it. But I just read the abstract of a study yesterday that found that children whose parents reused trachs were considerably more likely to have had pneumonia in the previous year than children of those who didn't reuse trachs.

Dang, we just put in a recycled trach the other day! So I get to spend the next two weeks worrying that I have put my daughter at risk for pneumonia. Yeah, I need that guilt.

She ended up with this trash-pile trach because the medical supply company sent over the wrong one because the neonatalogist who discharged her from the hospital just wrote "trach" on the supply order, so they sent over their default. Just like he ordered size 14 suction catheters, which would not even fit in her neonatal trach. And just like he ordered trach ties that are, like, twice the height of her squishy little neck. See what I'm saying?

Ultimately, it's my bad that Brave Baby didn't have a brand spanking new size 3.5 Bivona Flextend. I should've carefully checked everything we received with our supply order. I'm giving myself a pass this time. I'm a neo. Lesson learned. I'm learning a lot of lessons lately, and praying I don't screw up in some irrevocable way.

Brush Your Shoulders Off

One of the more annoying aspects of being in the NICU is having nurses-often much younger than you and childless themselves-talk to you about your baby as if you're clueless about her care. Why am I on this topic today? Well, because a young nurse who I generally like has annoyed me in just that way this morning. Yet, even as I write about it, I am letting it go and seeing little point to describing the incident. It's just easy to become very sensitive-sometimes overly so-about your position as the mother when other people are taking care of your baby around the clock. And after months of being here with your baby, even if not constantly, you do get to know your baby pretty well. As your baby's condition progresses to the point where you can take care of most of her needs, you progress to the point where you don't want anybody trying to direct you. You're just not having it. 

Oh, I can't help myself. Today, I told the the nurse that I am going to ask the doctor for an order to weigh Brave Baby before and after breastfeeding in order to see how much she's getting. She replied that there's no point in weighing her because, if she's not latching on, she's not getting any milk. Well, duh. 'Cause you know what? I have done an ample amount of breastfeeding, thanks to my first child, who we nicknamed Sir Nurse-a-Lot. I have some idea how it works. Before you deliver your pithy kernels of wisdom, you should check who you're talking to. And perhaps seek a little more information. Ask, for example, whether she's latching, rather than assuming that she is not. Never assume. You know what an ass that makes of you (but not me). 

I kept it pleasant though. Always do. Nobody says the right thing 100% of the time. These nurses have a tough job to do, and they usually do it well. But there are those moments when you just have to brush your shoulders off and keep rolling.  

All Trached Out

Last night, for the first time ever, I managed to get to the NICU early, before it reopened to guests at 7:30 after the one hour it closes in the evenings for shift change. So I'm standing in the waiting area, idly re-reading the posted information about requirements and expectations for taking your baby home. It notes that babies generally cannot go home until they are no longer experiencing apnea, but that you might be able to take your baby home with an apnea monitor and oxygen. This made me laugh. If only I was taking my baby home only on oxygen and a benign little canula. We'll probably have oxygen, yes, but it's going to be feeding into a trach. Yet, when I read that about the oxygen four (yes, four) months ago, I was horrified. No way did I want to take a baby home on oxygen! How would I care for a baby on oxygen? Could I put a baby on oxygen in a sling? Could we go places? I didn't even want to know the answer. I just wanted to walk out of here with a baby as healthy as if she'd been born full-term. I wanted to walk out of here with this nightmare firmly behind me.

Instead, I got a trach. Or, rather, Brave Baby got a trach. Now she's all trached out. I don't mean to be blithe about it. Sometimes you really do have to laugh to keep from crying. You have to see the humor in the thing. It's true, though, that there is very little humor in this. When I am not numbly roving along through my days, just trying to get it all done, I am inwardly pained, saddened, angry, afraid, bitter. I'm still very frightened that we will lose Brave Baby. I'm afraid of what more she will have to endure. And still, it occurred to me yesterday that it's unhelpful to her for me to feel this way. I don't, after all, want her to feel this way about her condition, about her life. I don't want her wallowing in self-pity, feeling angry about her departures from "normalcy". I suppose every parent whose child has special needs at some point goes through some period of adaptation. Maybe more peace will come once we get her home and I become confident that we can really handle taking care of her on our own and still manage to have some semblance of the life we hoped for ourselves or, even, some other life that we can learn to embrace and be happy with.

People Say the Darndest Things

Last week, someone asked me how the baby was doing. I said, "Well, she just had tracheotomy surgery, and she's recovering." And the person responded, "Is she gaining weight?" 

Well, yes, she is. As she has been ever since we began this nightmarish journey. Why even ask that question anymore? It's not the central issue. Weight is not the reason my baby is still in the hospital after four months. If it was just a matter of weight, she could have been released two months ago, around the time she reached four pounds. No, weight is not the issue. Breathing is the issue. They can't send her home if she can't, somehow, breathe. She can't live if she can't breathe. In case you didn't know that. 

Who wouldn't know that? Of course, everyone knows we need to breathe to live. Yet, people routinely act as if respiration was a marginal issue. The aforementioned exchange was far from the only occasion when, even after hearing of Brave Baby's latest respiratory struggles, someone chose to focus instead on her weight gain. I remind myself that it is only because people are so ignorant about micropreemies, not at all their fault. Most people's idea of preemies-indeed, my own idea of preemies before I had this one-are based on those 34-weekers; they think of them as just very small babies whose main task is to grow. But micropreemies are a different cut of cake altogether. They need to grow, yes, desperately so. But there is usually so much more they need to do as well. Respiration usually tops the list.

So I try not to blame people for not knowing because, really, how could they? But I do get annoyed that they don't at least take some cues from me. If I am talking of breathing and ventilators and oxygen levels every time the subject of my baby comes up, might you not start to get the message that this is her most pressing issue? If this is what's preoccupying me, might you not think it's for good reason? To the contrary, it seems, people act as if I'm just focusing on the wrong things. They pooh-pooh the concerns that I voice. They have the nerve-the nerve-to imply that I'm simply not appreciative enough of how well my baby is doing because, after all, she is gaining weight. I should be dancing in the aisles. 

We are all programmed to believe a fat baby is a healthy baby; however, I have seen chubby babies with jelly rolls on their legs in the NICU who were inert and unresponding. I have seen babies putting on weight and dying at the same time. When you witness this, weight gain alone is not comforting. You know that there are threats on many fronts, not just that one. But that is the thing about really understanding the NICU experience. You gotta be there. It's impossible to imagine. 

A Passage from "The Invitation"

"We must move into darker places if we are to find the wisdom we so desperately need. We rarely go there willingly, though every life contains its own cycles of grief and celebration. To meet wisdom in these dark places we must be willing and able to hold all of what life gives us, to exclude nothing of ourselves or the world, to tell ourselves the truth. Wisdom will stretch us far beyond where we thought we could or wanted to go. She will show us what we cannot change or control, reveal what is hard to know about ourselves and the world, and tear at the illusions of what we think we know, until we are surrounded by the vastness of the mystery.

"And all the while, wisdom asks us to choose life. She does not want us to just continue, to hang on, to survive. She asks us to experience life actively, fully, evey day--to show up for all of it. (p. 40)"

AND

"When we learn to be with our pain, we retrieve the parts of ourselves we have attempted to leave behind, and we are able once again to love those parts of ourselves. We find our wholeness and leave behind the impossible ideal of perfection that keeps us from the wisdom we need to live fully and compassionately with our humanness and the world. (p. 44)"

-From "The Invitation" by Oriah Mountain Dreamer

They call the NICU experience of a micro-preemie parent an emotional rollercoaster. I can't speak for others but, for me, it's been more like a pit. Or, even more aptly, a medieval rack, the main difference being that I have survived (so far) and grown and have found things to be glad of. But I have still not totally forgiven myself for our having ended up here. Okay, I haven't forgiven myself at all. I have not let go of that "impossible ideal of perfection". Surely, that's going to cause me some trouble down the line.

Look for me...I'll be the one with the sore nipples

I've noticed very little talk of pumping milk on the blogs of other preemie moms. This seems odd to me given that pumping has been the dominant activity in my life for the past 13.5 weeks. Based on my conversations with other NICU moms who are pumping, my experience is not unique. Of course, not all NICU moms are lactating, but quite a few are. So why the silence? Perhaps posts on pumping are just buried in the annals of these blogs, and I have overlooked them. Or maybe it's not considered a polite topic of conversation. Certainly, I hesitate to bring it up in a forum that might be read by all manner of people. Nevertheless, pumping has been such a huge part of my existence over the past few months that I would be completely misrepresenting this whole NICU journey if I did not at least try to convey what an awesome responsibility it has been. After all, I spend 4-5 hours a day doing it. I plan my days around it. It must be done every 2-3 hours, except for one 5-hour stretch during the night, because human milk operates under a positive feedback system. The more milk the body is asked to deliver, the more it will produce. Ask (pump/nurse) too little, and the supply dwindles. Once it dwindles, it's damned hard to get back, especialy if you don't have a real live baby to do the sucking. The pump is a poor stand-in for a baby. That could be due in part to the fact that it hurts-especially these hospital-grade pumps-and pain is not conducive to relaxation, which is essential to letting down milk. Fortunately, my body steams right on past all that. Pain? Fine. 30 ounces a day? No problem. Who ever would have thought my body-all underdeveloped in certain...ahem...feminine areas-could be such a milk producing dynamo?

Whatever my body's capabilities, Seycha cannot come close to consuming all that I produce on a daily basis. Right now, she's on 50% human milk and 50% formula because the doctor wasn't satisfied with her weight gain on human milk alone. Total, she gets less than 2 ounces per feed. Yet, I have to keep pumping 8-9 times per day in order to keep up my milk supply lest I have too little to feed her when she's ready. That's just how it works.

So what to do with all that excess milk? By mid-February, the milk techs at the hospital were telling me there was no more room in their freezer to store my milk. My side-by-side freezer/fridge at home was already full, so we bought a little deep freezer that we thought would keep us in good stead until Seycha was released.  That freezer was full within a week or two. So then what? Milk donation! There are milk banks around the country that process milk donated by nursing mothers and distribute it mostly to sick and premature babies, but also to some healthy babies, and children and adults with cancer and immune disorders. I read that the milk banks want the milk of preemie moms in particular because preemie milk is loaded with nutrients not found in full-term milk; it's the best milk for preemie babies, yet hard to come by. 

I was advised to hold off on donating because women who are exclusively pumping for their babies often have a drop in supply and find themselve with too little to feed their baby. I held off for a couple more weeks but got to the point where there was really nowhere else to store milk. Call me cocky, but I felt less concerned about the likelihood of a dwindling supply than about having to throw away any of the milk I had diligently pumped. So I went through the process for getting accepted as a donor at WakeMed Mother's Milk Bank. That took a few weeks, and I was bummed that I ended up having to throw away quite a bit of milk before it was over. But, since then, I've sent them three coolers. My freezer is, finally, not filled to the rim. It's getting there, though. I see another shipment in my near future. It's a little gratifying to know that all of this exertion can help some other babies,  perhaps babies of mothers who wanted desperately to provide their own milk but were unable. 

On Being Strong

Strength is not anger. Nor is it suppressing sadness. It is not not crying, putting on a brave face, or pretending that you cannot be phased by anything ever. So do not tell me not to cry because I "must be strong", not to express sadness about my baby's too-early arrival and all of the procedures and pain to which she's been subjected, not to grieve for the loss of my pregnancy and the final weeks (months) of bonding with and preparing for my baby. Don't try to shut me down when I say that I am afraid, exhausted. Yes, I feel weak-kneed at times. At times, I feel like the very substance of me is leaving my body through a drain, as if I will wilt and never revive. At times, I holler and beat the walls and floors in despair. And yet, I summon myself up and forward in the face of all that-even with tears in my eyes, even with my heart clenched by trepidation and suffering. Don't tell me to be strong. Look to me and learn what true strength is.

Cliches

Three cliches of whose truth-modified-I have become quite convinced since giving birth to a micropreemie and my subsequent experience in the NICU:

Anything can happen...yes, even to you.

You can't win...but you've got to try. 

Anything can happen

Like you can be low-risk (except being of advanced maternal age at 35) and do all the right things: exercise moderately, eat veggies and whole grains and resist the urge to gorge on French Fries and gelato, not smoke, not drink, and certainly not partake of illegal or legal narcotics, take your nasty-assed prenatal vitamin that constipates you for days, get prenatal care early, avoid excess caffeine, etc. You can do all of that and still, for no apparent reason that anybody can figure out, give birth to a 1'14" baby just as you're hitting 27 weeks. 

If that happened, anything can happen. Yes, to you. Because this is the type of thing that happens to other people. It's the type of thing you hear about in the news or read about in the March of Dimes fundraising appeal. It's not the type of thing that happens to someone like you. Until it does. So, yeah, anything can happen. 

You can't win...but you've got to try.

The social worker assigned by the hospital agrees with me on this. You've got to try to keep all the balls in the air. You know, take care of the 2-year old, spend as much time as possible with the baby in the hospital, stay up on her care, eat right, exercise, sleep, keep your household running to some degree, maybe get some work done. You can't just let your life fall all apart, which is what will happen if you give up. But dig it. You will not win. Just accept that. You will try to get it all right, but you will end up getting about 25%-on a good day. 

It's better than zero. That's what I remind myself when I think about checking out (like there's anywhere else for me to go). Better to get 10% or 25% right today than to just forfeit. 

Impossible Choices

Being a parent with a micropreemie in the NICU, you are faced with impossible choices. From the first, you struggle with whether to celebrate the birth of a new life or to mourn the too-early birth of a baby whose very survival and health are tenuous. Then the medical decisions begin. Yes to the PICC line or no? Yes to the transfusion or no? Steroids or bronchoscopy...or both? 

They are never clear choices. Being no expert, you hardly feel qualified to weigh them against each other. Your heart rebels against them all. Really, you usually don't actually have a choice. I think the doctor sometimes presents them to you just to let you into his or her (in our case, his) thought process a little. But it's usually not a real choice, unless the choice is allowing this risky thing to be done to your baby, which might make her better but could make her sicker, or not doing the risky thing, which will almost definitely end with her getting sicker. I guess I'll take door number one. As my 2-year old would say, "Scary, scary". 

Every day is very scary right now. 

People keep telling me they couldn't possibly handle what I'm going through right now, that I'm so much stronger than they can imagine being. I'm not so strong. At times, I am wilting inside. I certainly didn't walk into this heartier than anybody else. I distinctly remember thinking, long ago before all this happened, that I wouldn't be able to bear walking out of the hospital and leaving my baby behind. Although I knew nothing about preemies and NICUs back then, I definitely would not have thought I could face that. But I am, not because I'm especially strong, but because I have to. Nobody's giving me a choice. Surely, nobody has given my baby a choice. She doesn't get to decide whether to be here, living in an isolette, intubated, sedated. And because she doesn't get to decide, neither do I. I either show up and walk this road beside her or I renege on my promise to be her mother, all that that entails. Even if it's this. Especially if it's this. It is what any mother would do. It is what mothers do in the NICU every day. It is nothing extraordinary really. The babies are the ones who are extraordinary. We are just unwilling passengers.

Human beings rise to the level of the challenges that threaten to drown us. That is what we do, whether in the face of this or something else. We find our strength as we need it. We do the unimaginable not because we are unimaginably strong but because the alternative-giving up-is unacceptable, especially when there is still hope to hold on to. No, I am not strong. Just human.