Ten Months

I've been racked with guilt about not having kept this blog up. It's unfair to unload so much bad stuff onto people and then, when things get good, disappear. But frankly, the in-between has been pretty typical baby stuff (thankfully) and maybe it would have been pretty boring. And it's hard to type with a curious set of hands reaching for the keyboard.

Alex is now 1o months old. Figuring out his adjusted age, compensating for his prematurity, is difficult. They say preemies take about two years to catch up to their calendar age. Pro-rated, that puts him maybe at about 8 months...? Anyway, he's been saying "mamma" for about three weeks and said "dadda" for the first time this morning. But, he's really lazy about sitting up and when you hold him to stand, all he wants to do is jump. So, his calendar is not linear.

Now that we're past all the post-hospital follow-up appointments and Alex is seeming quite normal and healthy, the hole where his brother ought to be is enormous. It's overwhelming to imagine two charming, adorable Alexes. But, I try to keep in mind that Nick would not have been anything like Alex, that he might not have ever said "mamma" and he would probably still be in the hospital ten months later... and that by itself would have been intolerable.

On a brighter topic, Alex's blood lead level is a little high. This took us by surprise. Of course, looking back at all the work we've done on the house, we feel like idiots for not having assumed there were dangerous levels of lead in all the paint in the house and now there is lead dust everywhere. So, the taxing process of super cleaning every corner of our house and abating problem areas begins. We bought a $500 industrial HEPA vacuum, hired a lead tester, and the city is sending someone out today to re-test (they are required to, even though we hired someone).

The good news is that Alex doesn't show any clinical symptoms of lead poisoning and we likely caught it very early, just as he started to spend time on the floor. The bad news is... is this why I can't remember what happened ten seconds ago? I get my level checked in a couple weeks.

Seven Weeks or five months

I'd say that I haven't had any time to post, but the truth is that I have been spending what computer time I have available playing Scrabble online. It's addictive and it only requires one hand. Alex is napping (a rarity), so I'm gonna use my bi-ambulism to update.

At seven weeks adjusted (from his due date), Alex is now a healthy, happy 8 1/2 pound baby - almost four times his birth weight - and we couldn't ask for a better outcome. Sure, he cries sometimes for no apparent reason. He seems to want to eat all the time. He pukes occasionally. He goes for days on 6-7 hours of sleep (total, broken into short naps) and I can't get even the most basic of chores accomplished. But, this is life with a baby. I can't say that I am surprised.

He is smiling now, which, for those of you unfamiliar with this magical milestone, makes all the drudgery so very worth it.  I think he actually might be laughing sometimes.  He likes books and watching me type on the computer. He also seems to really like Jazz. We are encouraged, having feared that our genes would conspire against us to create a tone-deaf jock. I suppose there is opportunity yet for him to find the wrong calling.

I know that most men cringe at the mention of breast feeding, preferring to maintain their version of breasts as objects of desire and not infant buffets. But, given all that I have gone through to breast feed my preemie, I feel that it necessary to discuss some of the things that I have discovered in the hopes that it will encourage other parents of preemies to trooper through, because it can be done.

First, despite the mantra repeated over and over at the NICU about how supportive they were about breast feeding, I felt very much on my own when it came to realizing this unlikely goal. As mentioned in earlier posts, the lactation consultants were militant and uncompromising, and ultimately unhelpful. The nursing staff was focused entirely on getting the baby out of the hospital, no matter by what means (i.e. putting Alex on formula and giving me "you're nuts" eyes when I insisted that I was indeed going to breast feed him at some point). Let's face it, a baby who has been bottle fed for two months is not going to take easily to a more difficult means of eating.

But, something happened with Alex and I, something that was greatly underestimated by both the lactation and the nursing staff. I believe that Alex might not have been developmentally ready to breast feed until a couple weeks after his due date. I know that that is counter to what every expert out there will say. They will say that babies can do it as early as five weeks before their due date. Well, they can eat by mouth at that point yes. But, after having totally given up and resigned to my fate with the pump and the bottle, one day, about three weeks after his due date, Alex just figured it out on his own. And from that point on, he needed to breast feed, often refusing a bottle altogether.

That breast feeding is soothing to a baby might seem obvious, but the focus had been, up until Alex decided he preferred mom to a plastic bottle, entirely on weight gain. The bonding thing, well that would be nice, but... My experience with my preemie is that it has been absolutely essential. I believe that it has made Alex more secure, less fussy, and better able to relax on his own. It certainly has allowed me to relax, and to feel a part of the greater mothering world. There is so little help out there for mothers of such early preemies, it is impossible not to feel further isolated by the plethora of literature or advice written with only full-termers in mind.

There are a few things you can expect if you are attempting this difficult feat. One, a lot of babies need to be taught how to breast feed, not just preemies. So, some of the message boards can lend helpful advice, even if they are talking about their full-termers. Two, the baby ultimately has to figure it out on their own. I worked once a day for a couple of weeks trying to get Alex to figure it out. In the end, he just did it without any tricks or equipment. Three, even when the baby starts to breast feed, it's going to take a couple of weeks for them to get good at it. I still throw a bottle in once a day to top him off when he seems like he isn't finishing up on me. Four, babe will be on a much shorter feeding schedule. In my case, we went from three hours on the bottle to one and half to two hours on the boob. It's a pain in the ass at two, four, and six in the morning. But, it is temporary. Better yet, it soothes him to sleep and makes it easier to put him back down in his bassinet.

I can say that, after four months of working toward getting my 26 weeker to breast feed, it has been excruciatingly difficult, but well worth it.

Feeling Minnesota

The Twins. It's a funny name for a baseball team. Nothing scary or ferocious about that moniker. At best, it implies a talent for deception, or a duplicity in character. I wonder what their mascot is. No matter, it is not their year to be world fucking champions.

And the state- Minnesota.  Every time I look at a map of the US without the names of states written in, I'm always left with one hole, one block that I can't put a name to. That would be Minnesota. The blank state. The lost state. The empty home of twins who have failed to advance to the next level.

Today, I found myself spontaneously crying over our lost twin. I don't know. It is just so unfair that he isn't with us. Alex is about 7 pounds now. Had they been born this normal baby size, Nicholas surely would have survived. There's no point in thinking that way. But, you do. You can't help it.

I also realize that, with no family around to help, raising twins would have made me totally crazy. I don't know how people do it. Alex, with his need to be constantly strapped to my body, can be overwhelming. I get by most of the day with just one hand, a hand that should be tending to his brother. And though AO and I have made progress with breast feeding, he still eats mostly by bottled, pumped milk. I can't imagine doing that with two, all by myself, all day long. Nonetheless, I am terribly sad that I don't have that kind of day right now.

Joey

There are specific activities that I imagined I would do every day with my baby when he finally came home from the hospital. We would take long strolls together on splendid autumn days. We would Kangaroo all the time. I would carry him in a sling every minute of the day to make up for all the time that we were separated. Most importantly, we would breast feed. It would be beautiful. But, like everything that has lead up to this point - twins, Nick's C-cam, a C-section at 26 weeks, twin loss - I shouldn't have expected anything at all.

Though we do go for strolls, they are not always peaceful and they have to be carefully timed in between meals, as Alex has a tendency to puke when sloshed about (who wouldn't?). I had no idea that Philly sidewalks were so terrible until I rolled my not-so-sleeping baby along them and then felt like a bad mom for putting him through such a rough ride.

Most of my day is in fact spent trying to get Alex to finish a bottle and then holding him still over my shoulder for an hour in an effort to keep that bottle down. It's tough to take care of my own needs, such as using the bathroom or eating, when I have a baby in one hand at all times. I've learned to do an amazing array of things with one hand. The sling thing is getting easier as Alex gets bigger and I can trust that his windpipe is not getting crushed. But, as with the stroller thing, puke prevents us from going out whenever I want.  It's clear that, for the next 18 years, nothing is going to happen when I want it to.

And breast feeding... as I've mentioned, it's really, really hard to get him to do it. So hard, I want to give up every time we try. It's more exhausting than washing all the bottles.

But, there's one thing that is exactly how I imagined it. Kangarooing. I had actually forgotten entirely about kangaroo care, the practice of holding your near naked baby skin-to-skin, until I read some helpful info today on how to improve the transition from the bottle to boob. A no-brainer, it was suggested that I kangaroo him more. We kangarooed a fair amount early on in the NICU, when he was tiny and fragile, and it was not an enjoyable time. But, as Alex got closer to discharge, it was so cold in the hospital and the staff was so paranoid about him keeping his body temperature that I stopped doing it just as it would have been most helpful. But, as I sit on the sofa with my usually irritable preemie fast asleep on my bare chest, I can't believe I let this get away from me for so long. Of course. Me and my Joey, relaxing together.

Independence Day

Finally. This morning, Alex got his first full meal directly from me. Getting to this point has often felt like teaching Helen Keller how to speak, with a lot of screaming, scraping, and kicking. I had just about given up on the hope that he could learn to breast feed. But, I kept trying, having developed a complex system that involved my pump, a bottle, a boppy pillow, and a beer. And today, I can claim that that McGuyvering worked. Not that I imagine our very next feeding to be as successful as this. But, I can at least start to envision a life without all that bottle washing. Goodness. It's a full time job pumping and washing.

Tonight, I get to get out of the house. The task of parenting has been unevenly doled out to me in the past few days and I've gotten the greenlight from the hubs to hit the town. Independence indeed.

Playing Around

I imagine that we're not alone in this figuring-out-what-the-baby-wants game. I understand now why people lived in villages with large extended families. Parenting is not natural. It's learned, usually from your own parent (that is, if you think they did a good job with you). Responding to the shriek of an infant is instinct. But, the subtler aspects of caring for an infant can be perplexing. Even with all the books, this feels like we're re-inventing the wheel.

Alex mutters a lot. It's difficult for me to make sense of why or what it is he's blubbering about. Since yesterday marked 40 weeks gestation (full term), I consider Alex to be a newborn. I had no idea newborns talked so much-- or were awake for so much of the day yemmering on in their bizarre baby language. Sure, sometimes he's trying to tell me that his diaper is wet or that he is hungry despite having just been fed. But, sometimes, he's just playing around, I guess. Enjoying the sound of his own voice. Preventing me from getting a restful nap. Reminding the tribe that he exists and not to forget him when they move to another cave.

Puke update: We stopped adding formula to the breastmilk to see if he would hold it down better. Hard to say if that's what did the trick because we also just started Zantac. But, Alex pretty instantly ate a lot more per feed and seems generally less fussy. Given that the first two ingredients of the formula are cow's milk and corn syrup, this is not surprising. Keep adjusting until we solve the puzzle that is our son.

Nice...?

Of course things are going to be different when you get home. Our house couldn't be more different than the NICU. It smells weird all the time. The pets are always barking, meowing, or shedding. The windows are open and the unfamiliar city breeze wafts past our sleeping, confused babe. I can see how moving in here could really mess up a boy's system.

But, I have to admit, I didn't figure Alex would be such a different baby once in our complete possession. Gone are the smooth, efficient 75ml feeds that kept him satisfied for four hours. Now a resident of 1550 E Berks Street, he rarely takes more than 40ml for me and that only with great difficulty and much (much) puking. He wants to snack on these half-meals every three hours, every hour and a half at night. So, yes. Just as he has fallen asleep after a long burping/vomiting, he is awake, ready for more. We started him on Zantac today in an effort to reduce his discomfort and hopefully help him keep more milk in his belly. Then, we have to work on his flipped schedule so we can all sleep at night at the same time.

People keep asking me, or I guess telling me, that it must be so nice to have him home after three months of traveling to the NICU every day to merely visit him. I haven't honestly had time to notice how nice it has been. I suppose on three hours of sleep, not much strikes me as nice. And having to share him with the apnea monitor defies the total freedom I had imagined. But, as the boy sleeps on my lap while I watch the Phillies play from the comfort of my own couch -Yes. It's very, very nice.

Parenthood day 5

Well, no one said it would be easy. Actually, they said it would be really hard. It's not that hard. It's just that you can't do what you want when you want and you often have to do things you really don't want to do at really inconvenient times.

Alex projectile vomited four times on Saturday, provoking us to take him to the much dreaded emergency room. We figured nothing much would come of it, but felt guilted into doing it anyway because Alex seemed pretty miserable. And we were right.  The wonderful doctors at Children's Hospital had little more to offer us that a possible diagnosis of pyloric stenosis, the narrowing of the stomach-small intesting sphincter, that was causing a blockage and offered us the option of waiting another five hours until the ultrasound team showed up at a reasonable hour of the morning. Having only gotten three hours of sleep the day before, we declined the invitation to bed at Hotel Sickness and headed home. A wise decision, no doubt.

Sunday was pleasant, with very little in the way of regurgitation. Sunday night, however, something weird happened. Alex was utterly inconsolable in his quest for more and more food. It was like he was in a competitive drinking contest. In the span of 2 hours, he clocked a quarter of his total daily intake. And he would have eaten more, had we not cut him off. As one of our friends aptly noted, "and thus begins the Kennedy lifelong affair with the bottle."

In an attempt to get the use of both of my hands back, I have started using a sling to hold Alex. My first try is with a Hotsling and, so far, the review is not so great. Alex is only 5 bs, but hardly fits in the sling. Worse, his head keeps slipping out the bottom, requiring constant adjustment, which defeats the purpose.

Yesterday, today

Gosh. So, as one might imagine, I haven't had much time to blog since we brought Alex home on Wednesday. Lots of laundry. Many diaper changes. It's a huge relief to have him here with us all the time, though being tethered to the apnea monitor is a big chore.

Above all else, Alex the baby is a cliche. We literally did not sleep a single minute his first night home. Between him crying (or screaming) and the apnea monitor going off relentlessly because of problems with the leads, I think we finally got to sleep around 6 AM. Not kidding. Last night, we took shifts. I fell asleep on the sofa with Alex next to me in his bouncy chair around 5:30. When he awoke at 8 ready for breakfast, I passed him off to Mike, who had called it a night somewhere around 4. Today, we tried to keep him awake as much as possible in the hopes that he might sleep better (or at least some) at night. That of course required us to be awake as much as possible.

I'm functioning surprisingly well for someone on three hours sleep, though this has given me an entirely new appreciation for what it really would have been like to have twins. My friend Kelly just had twins two weeks ago and she seems to be handling it all surprisingly well- in that she is still sane and she was not a puddle of tears when she called me today.

Today we took Alex out for a long walk to have dinner outside at a local restaurant. It was really nice. Finally a family untied. Of course AO, in a moment reminiscent of his finest NICU moments, puked all over himself. Discovering that this restaurant has no changing table, I learned how to re-dress a baby on my lap, a valuable skill apparently.

Tomorrow

I can't believe it. After weeks of thinking Alex will be home soon, he is finally set to be discharged tomorrow. I was in a mad hurry this morning, running errands and wrapping up loose ends, realizing that after all this talk about how my life has been turned upside down, it is finally about to undergo a beautiful, happy evolution that will keep me homebound for some time.

The past three months in the NICU have been terrifying and depressing, but also enlightening. I've learned more about neonatology than I ever thought possible. I've seen things that no parent should ever have to see. My marriage has been put to the test, as have my maternal instincts. Words are insufficient to describe what I have experienced since the twins were born, though this blog has helped me sort some of it out. As I sit and write this, I am crying. I hope you can imagine why.

The Formula for Success

Funny this morning that I should write about my breastfeeding woes and formula fears, because my visit to the hospital revealed a plot by the nurses to put my boy on formula in order to see if "breast milk isn't the problem". That problem would be a stall in Alex's weight gain that is keeping him from coming home. 

Their logic is to do whatever is necessary in order to get him home. I argued in return that a temporary fix is just cheating and will be problematic in the long run. Whatever they do to get him to gain weight should be something we can and will continue to do when he comes home. There's no sense taking the dramatic step of completely changing his diet for two or three days, just for us to revert it once he comes home and have him then stop gaining weight. With us living on one income, a specialty, high-cal formula is not something we can sustain at home. It will also do nothing to reduce the 100+ bottles of pumped milk crowding our freezer.

Thus began a back and forth about my diet. The question, "are you eating right?" came up over and over. I suspect this is because I'm back to my pre-pregnancy weight already. I've always had the metabolism of a hummingbird. But, I could see how it might seem to them like I'm on a crash diet. In doing some reading on how what I eat becomes what Alex eats, alterations in my diet can indeed have some small affect on his caloric intake. I pledge to eat more fish and nuts. And although it won't help him as much, I pledge to eat a lot of chocolate cake.

Other than that, we've agreed that a simple fix would be to dump what is called the fore milk and feed Alex the higher-fat hind milk. If the terms are not self-explanatory enough,  the further into a pump or feed you go, the more fat there is in the milk. Chocolate cake...

Boob envy

Several of my friends have recently given birth to healthy, hearty, full-term babies. Although there are numerous reasons for me to be jealous of their smooth transitions into motherhood, it is the ease with which they are able to immediately breastfeed their seven pound babies that makes me crazy. Their kids are born strong enough and with the coordination to do it. Those babies don't know any other way to get fed.

But, breasfeeding a preemie is difficult at best. I read this early on, but did not fully comprehend what that meant. I really thought that we'd be the exception, especially since early on, Alex seemed so amenable to the idea. But, he's been bottle fed for over a month now (I can't be there 24 hours a day) and getting him to work for lunch is proving to be pretty impossible. 

There are a number of reasons for this. Obviously, he's used to getting milk just poured into his mouth and the effort it takes to get my milk moving is so frustrating for him, he flails and screams until I give up and give him a bottle. Second, there have been a lot of interruptions to our transition from bottle to breast. If he is not gaining weight, or even losing weight, I stop. It's more important for him to grow, and breastfeeding burns more calories than it provides. If they are trying to transition him from the isolette to the open crib (where he is expected to maintain his own body temperature and continue to gain weight), I stop so that I am not contributing to him failing this test and being sent back into the isolette.

Mind you, he's still getting my milk (I pump and bring it to the hospital) and I'm dedicated to keeping him off of formula if I can help it.  But, I really want both the bond of breastfeeding and the convenience of being off the pump (there's a lot of cleaning involved with bottles).  As with every other aspect of my pregnancy and subsequent motherhood, however, I may have to accept that normal is just not in the cards for me.

I'm torn about seeing the hospital lactation consultants about this. They are, as so many women who have been consulted by them called them, the "breastfeeding nazis". They grab your tit, grab your baby's head, and mash them together violently. They tell you to relax while provoking your three pound peanut into a frenzy of frustration. They are at constant war with the nursing staff, whose job it is to get the baby big enough to leave, now matter how the baby is fed. I really want Alex to get enough to eat so he can join the ranks of babies his [adjusted] age. But, I want that to happen in a manner that he does not and I'm not convinced that the lactation consultants will be sympathetic to my situation.

A 2 K

Alex has hit an important watermark: 2,000 grams (4 lbs, 7 oz). We've been days away from bringing him home for over a week and a half now (I really don't know how long). This part of preemie parenthood, the part where progress stalls and there's no telling when your kid can come live with you despite their overall good health, is extremely frustrating. Basically, he has to be able to hold his own body temperature outside of the plastic box (the isollette). He's failed this test four times. So, the staff has decided to let him get to 2 kilos before trying again. This afternoon began the fifth attempt. I don't know what will happen if he fails again.

I had lunch today with M, another NICU mom. We were trading war stories, citing that New York Times article about the prevalence of PTSD among NICU parents, and generally commiserating about problems with staffers and protocols. We struck upon another aspect of our situation that has been overlooked in all the writing and research: temporal distortion. 

Both M and I spent over a week in the hospital before delivering our sons, who we have been visiting now for at least two months. All that time in a hospital, with our days marked by constant trepidation and a saturated state of limbo, has made the telling of time and the tracking of dates nearly impossible. When your days are both painfully similar and at the same time totally unpredictable, your brain stops recording that kind of data. It is in crisis mode, even on quiet days when everything seems to be going well. It's thinking about escape and survival and all the other primal feelings we modern humans are so good at ignoring.

You couldn't have known

I talked at length yesterday with one of the nurses in the NICU who had lost both of her premature twin daughters. They were born at 22 weeks gestation, both at a little more than a pound. As a nurse charged with caring for tiny preemies, she realized what her babies would be up against. They would most likely grow up blind. They'd have many months of struggle, only to possibly die. So, she decided to not admit them to the NICU, meaning that she and her husband held them as they died, just as Mike and I held Nick as he died. No tubes. No wires. Just a peaceful passing, inasmuch as death can ever be peaceful.

As we anticipate Alex's homecoming within the next week, I think about Nick all the time. It's impossible to avoid considering what it would have been like to bring the two of them home together. I think about how things might have been different had I carried them longer. Would more time in the womb really have saved Nick? It's normal to think this way, I think- but not healthy.

It hasn't helped that, in recent weeks, the subject of my pregnancy has come up several times with strangers or rarely seen acquaintances. Invariably, when I say that my son was born three months early (I always start out implying that I gave birth to just one) and is still in the NICU, the other person asks why I went into premature labor. It's a rude question because, obviously, the answer is going to be horrible. Doesn't matter what the circumstances. When people have medical emergencies such as premature labor, the answer to why is going to be shitty and you are going to end up crying in a supermarket or hotel lobby at a stranger's story.

But, you couldn't have known. It's a baby story. You are curious. She looks so healthy. Is there something to be learned, something useful to yourself in knowing why? Or is it just a formality? Maybe you think the storyteller wants to share her medical calamities and you are simply being polite by opening that door for her. Maybe you kind of see it coming- the train wreck- as the words leave your mouth, but you ask anyway because there is some catharsis for you in hearing horrible things. These are things that happen to other people. That is relieving. Maybe you are in denial. You ask what seems to you an innocent question, even though it is not, and you are truly shocked at the answer because you couldn't have known.

September third

Today was the day the twins were supposed to be born.

Shell Shock

It's inevitable. You see someone that looks like you every day for two months, you end up talking. I got into a long conversation the other day with M, one of the other NICU moms. Her son was born two weeks after Alex, but two weeks more premature. I noticed something about M that I had not seen in myself, though it must have been there up until recently- the look of shell shock. The expression on her face did not once vary from that of bewilderment, even when she laughed, even when she listened intently to my end of the conversation. It remained a countenance of "am I dreaming all of this or did my life really just suddenly fall apart?"

The New York Times ran a piece this week about NICU parents suffering from post traumatic stress disorder, suggesting that the incessant barrage of bad news coupled  with the incessant bling of alarms brings about similar trauma in parents who go through what we've been through as does war in a soldier. You see tiny kids almost die all the time. In our case, you see your own kid die. If you are lucky enough to get out alive, you don't easily shake the memories.

It's hard to not learn about the other patients in the NICU. With ten babies or more lined up just feet apart in a big room, you hear most everything, hushed voices be damned. We see newer parents go through that we've been through with Alex, overhearing the same medical terms we had to go home and Google in order to fully understand: bradycardia, billirubin levels, spinal tap, CBC counts, ventrical bleeds, and  so on. Sometimes, we hear them deliver really bad news and, from the corner of our eyes, watch parents grapple with things so far beyond their control, it feels like they just assumed somebody else's life. Meningitis. Cerebral Palsy. Surgery.

Life really isn't fair and the NICU is a constant reminder of this truth. You do everything right and everything can still end up completely wrong. You have no control. As one grandmother said in attempt to sooth her daughter, the mother of a 3 lb boy who was having seizures, "We'll deal with the hand we are dealt."

Little Man

I'm in love with my son. I know it's the makings of a Greek tragedy, that someday, he will betray my love by being insensitive to all that I have done for him. He'll stomp on my feelings the way that children do. He'll ignore me. He'll try to get away from me and be his own person. One day, he'll fall in love with somebody else. But for now, I am mad about him and I love it. He's undeniably handsome and when he throws a fit, he's all the more charming. Nothing makes me happier than to hear him scream out his dissatisfaction or sob because his perfect little world is somehow lacking. I guess that this is how every parent feels, my own included. I didn't know.

Alex is an astounding 4lbs 2oz today. I stopped by the Baby Gap and looked at normal baby sized clothes- not with jealousy or sadness, but with excitement. It may sound morbid to say that I had avoided buying anything for him that suggested a future because, let's face it, the odds were stacked against him. But, now I can look forward to waxing nostalgic about how tiny he used to be as I purchase size 3-6 months for him. One day, when he becomes a parent, I hope he will appreciate what this meant to me. 

Transitions

Alex has graduated to the "transitional" nursery, the quiet place where babies go to grow when they are no longer critical. He's made tremendous progress in the past two weeks, so much so that it's hard to believe that he was once the purplish amphibian of June 20th. We can now do the things that babies and parents do, things most parents take for granted. We bottle feed him, hold him whenever we want, change his clothes...

So, I am spending a lot more time at the hospital in preparation for his homecoming (perhaps within the next two weeks!). In a normal pregnancy, the baby comes out and the family is united within a couple of hours. Baby comes home with the parents. Life continues on. With Alex, life has been suspended. The past two months have seemed like one never-ending dream in which I can't tell if what is happening is real or imagined. 

We have refused to let ourselves consider what life will be like when he is home and we don't need to go to the hospital every day to visit him. Now, I am starting to think about what that will be like and, I have to admit, I'm more than a little nervous. He still seems so delicate. What if I hold him wrong? What if I don't understand his cues? Will we feed him enough or change him enough? Someone else has been doing this every three hours for the past 9 weeks. Are we up for it?

I had envisioned toting Alex around with me everywhere all the time when we got him home. We would take naps together, go for long walks together. We would finally be free to be mother and son and I could finally make up for all the time that I have not been able to hold him. But, it probably won't be like this. He's likely to come home with an apnea monitor, the bane of so many parents of premature infants. It's a small device that hooks up to your baby and sounds an alarm whenever baby seems to stop breathing or his heart rate slows down. More wires, more loud beeping. More scares.  Just when you think you are home free, think again. Life with Alex will never be "normal".

Marathon

In the story of the Battle of Marathon, a soldier runs himself to death in order to carry news from the the battlefield at Marathon to the citizens of Athens that the outnumbered Greeks have beaten the invading Persians. That's it. News of victory. And he died. So impressed are we by this one man's fatal endeavor that we repeat his race toward death millions of times a year. Why repeat an action that evidently killed the first man who tried it? Even if this fable is not historically accurate, it shows us something about what we value in humanity. We love to see other people put their own best interest aside in the pursuit of an impossible feat. It makes us feel like their is a point to all of our own suffering. The reason for trying seems to be a tautology: Suffering is useful because suffering is useful, just like the point of living is to live. We have faith because we must have faith, and so on.

Hm. There is a point, and every marathon runner has reached this point, where you are so exhausted by your own feedback loop of logic, nothing makes any sense. I have reached that place. I no longer remember why we decided to have baby. I only know that now we have one and he is in a hospital and we have to keep going with this crazy business because there is no stopping. I go to the hospital every day and watch my boy sleep and wake, get and give blood, breath and stop breathing, all the while fabricating a faith that one day, he will come home with us so we can start to be a family. I wonder, when that happens, will I see him as the marathon or as the person who ran it?

3 pounds

It's hard to believe that Alex was born six weeks ago and is 33 weeks post-conception today. Born at 2lbs 4oz, he's made tremendous progress, now clocking in at a whopping 3 lbs 1 oz and outgrowing the micro-preemie clothes I bought for him. We're hoping this week he can make two huge strides: getting off the nasal canulla that helps to keep air flowing when his premature nervous system forgets to make him breath, and to try to feed him with a bottle (he is currently fed through a feeding tube). I can't be that disappointed if he doesn't succeed at either goal, since he's not supposed to be born for another seven weeks.

There's been a lot that I've wanted to write about lately. Foremost is that I am feeling weary of this limbo. Though much of the stress of becoming a NICU parent has dissipated as Alex becomes more stable, another stress is taking its place. I feel like I should get a job, do something with my time to help out our bank account. But, in five weeks or so, I'll suddenly be the full-time caretaker of a baby I have watched grow inside a plexi-glass box like some kind of TV show. I often feel that I am not Alex's mother, but just a visitor in his complete hospital world. The excitement of seeing him evolve has started to take on a perverse  hue. With the nurse asking "Do you want to take him out for awhile?" followed by "We need to put him back in now," Alex is starting to seem more like a kitten in a pet store than my son.

Beneath the obvious identity confusion, I can sense a real crisis. I am 35, I just closed up my business in order to raise twins that did not materialize, and I need to figure out what to do with the rest of my life. Unanimously, people will respond with, "Raising you son." Duh. Of course raising Alex will be the focus of my life . But, I don't cease to be a three dimensional person with my own needs and aspirations simply because I have a child. In fact, failing to pursue my own goals will result in a total lack of respect from my son as he grows up feeling that his mom could have been something, but chose not to. Being a person your kid can respect is more important than telling him what's right and wrong.